Dementia Defined

Save the Date for the 2012 Alzheimer's Advocacy Forum in Washington, D.C.

2011-12-28T08:21:00.001-07:00

Save the Date! Join us for next year's Forum.

April 23-25, 2012

Registration Fees

Registration fees cover only a portion of the total meeting cost. The Association subsidizes the remainder.

Early bird by March 9 $175

ISTAART members $150
March 9 – April 13 $225

After April 13 and on-site registration $275

Monday only $100

Tuesday only $175

Wednesday only $50

Group Registration Policy and Procedures

For every three fully paid registrations from a group, one free registration will be offered. To qualify for group registration: One person from your group must register all four attendees online (no faxed or e-mailed forms). Group must register at the same time with payment to receive the discount. We will not cancel a pre-registered attendee to join a group registration. All group registrations must be entered at the same time to obtain the group discount.
Cancellation and refunds must be made in writing and must be postmarked, emailed (advocacyforum@alz.org) or faxed (866.699.1235) on or before March 8. All refund requests received by March 8 will be refunded, less a $35 processing fee. No refunds will be made for cancellations received after March 8. No refunds for no-shows.

Registration Methods

Fax

Fax registrations ONLY if payment will be made using a credit card. Do not fax group forms. Your email address must be included on the faxed form. Fax completed registration form to 886.699.1235.

Confirmations

Confirmation letters are sent by email. Please include the email address where you would like to receive the confirmation. Contact Darnella Harris at 312.335.5833 or advocacyforum@alz.org if you do not receive a confirmation.
Pre-Registration

Pre-registrations must be received by Friday, April 13, at 5 p.m. Central. After this time, anyone wishing to register must do so on site at the Advocacy Forum. See registration fee schedule.

Events at Registration

Please indicate on your registration form the meal functions and events you will be attending. All meals will be ticketed. If you wish to make a change to your registration, you may do so by calling 312.335.5833 before April 13 or visit the registration desk on site.

On-Site Registration Hours

Pre-registered attendees may pick up their conference materials, and on-site registrants may complete the registration process, during the following hours:

Monday, April 23 10 a.m.–6 p.m.

Tuesday, April 24 6:30 a.m.–5:30 p.m.

Substitutions

If you are unable to attend but would like to send another person in your place, please email the new information indicating it is a substitution to Darnella Harris at Darnella.Harris@alz.org

For More Information

For registration information, call 312.335.5833 or email advocacyforum@alz.org.

Top 10: Holiday Advice for Caregivers and Other Caregiver News

2011-12-15T09:45:00.002-07:00

We’ve been reading so much great advice for caregivers this holiday season, we felt it was worth a blog post just to highlight some of these informative articles. If you’re a caregiver to an aging friend or loved one, take a few minutes to read up on some useful tips that can help you travel your caregiving journey with ease.

1.Ryan Malone, of Inside Elder Care, never fails to impress with his expert insights. His latest blog post talks about the recent Gallup poll that really drills down caregiver statistics in the U.S. Some of them are not surprising, but some will be shocked to learn just how many folks are caring for a loved one these days — and the level of sacrifice they make each day in order to do so.

2.Registered nurse, former caregiver (for her father), current long-distance caregiver (for her mother) and our friend (we’re proud to say!), Shelley Webb of Intentional Caregiver, gives us 11 New Year’s resolutions caregivers can make this holiday season in a guest post for Maturity Matters.

3.If you’re planning to move a loved one in the near future, check out these ten tips from AARP. And for more awesomeness from AARP, read this post if you have a caregiver on your shopping list this holiday season for some excellent caregiver gift ideas. Thinking cruises and spa getaways? Think again: an empathetic ear, a little help. You know, those intangibles that are far more valuable than expensive gifts!

4.Montgomery Media offers tips for caregivers to de-stress this holiday season. Top of the list? Don’t forget to take care of yourself, so you can provide better care for your loved one. We’ve heard it many times, but caregivers get so caught up in caring for loved ones they easily forget this very important task.

5.Tax season is rapidly approaching, and Forbes has some information on tax breaks to help caregivers ease the financial burden.

6.American Medical News talks about how technology can connect doctors and caregivers. Easy communication is critical between the two, as caregivers must stay in control of their loved one’s care needs.

7.The San Francisco Chronicle features a press release covering a new approach to caregiving for the Alzheimer’s/dementia patient. The Pines Education Institute of S.W. Florida partnered with Teepa Snow, a nationally-recognized dementia care expert, to produce a series of educational DVDs to aid caregivers.

8.MSN takes a humorous approach to identifying the signs of Alzheimer’s disease with “7 Signs Santa Has Alzheimer’s.” This light-hearted approach excellently conveys critical signs caregivers and loved ones should look out for, especially if visiting a long-distance aging loved one over the holidays.

9.The holidays are supposed to be a joyous time, yet many aging and disabled adults find themselves with a case of the holiday blues. If your loved one is having a difficult time this holiday season, check out these tips from Care.com to help.

10.La Mesa Courier features a great list of tips for making this holiday season a joyous one for your aging loved ones. Try cooking a special meal together, listening to their stories from the past or taking a nostalgic ride around town.

Alzheimer's and the Importance of Early Detection

2011-09-14T09:51:00.001-07:00

Alzheimer's disease is one of the top 10 diseases Americans die from each year, but it is the only one on that list that is expanding as the other causes of death are declining. Alzheimer's disease is a degenerative brain disease and the most common form of dementia.

"Alzheimer's is becoming a more common cause of death as the populations of the United States and other countries age," notes the Alzheimer's Association. "While other major causes of death continue to experience significant declines, those from Alzheimer's continue to rise."

One reason for this difference is that the other leading fatal illnesses are preventable, such as stroke and heart disease, but Alzheimer's cannot be prevented with lifestyle changes. According to the Alzheimer's Association, preliminary data from between 2000 and 2008 showed that deaths attributed to Alzheimer's increased 66 percent, while those attributed to the No. 1 cause of death, heart disease, decreased by 13 percent.

Such statistics make the latest Alzheimer's research so vital for those who suspect they may get the disease, those already suffering from it and their friends and family, who may provide some level of in-home caregiver support during the long course of the disease.

Some of the biggest news about Alzheimer's currently is the importance of early detection.

"Biological changes associated with Alzheimer's disease are thought to begin 10 to 15 or perhaps 20 years before an individual displays symptoms," states Dr. Heather Snyder, senior associate director of medical and scientific relations at the Alzheimer's Association. "But there is no single generally accepted way to identify the disease in its earliest stages -- before symptoms are evident. At the same time, Alzheimer's therapies are in development that may be able to slow or stop the progression of the disease."

There are efforts underway to update the diagnostic criteria in a variety of ways, including biomarker measures. This spring, the National Institute on Aging (NIA) and the Alzheimer's Association published new diagnostic criteria guidelines for Alzheimer's disease in Alzheimer's and Dementia: The Journal of the Alzheimer's Association.
You might ask: If the disease cannot currently be stopped or cured, what difference does early detection make?
"The benefits of early detection are many," says Beth Kallmyer, senior director of constituent services at the Alzheimer's Association. "People who are diagnosed early can participate in the planning of their future -- they can talk to their families about advanced directives, how they want to have their finances handled, what they want to have happen when they can't drive anymore."

Not only does this allow the person with Alzheimer's disease to feel empowered, Kallmyer says, but it's a huge relief to their caregivers and loved ones who otherewise may have to make decisions under a great deal of stress later, when the disease is in its advanced stages.

We recently posted an article on Homewatch Caregivers that pulls from the Alzheimer's Association's own 10 Signs of Alzheimer's list. There is a distinct difference between the signs of normal aging and early Alzheimer's disease. For example, someone may answer the phone and simultaneously put down their keys, then not be able to find them a few minutes later. A normal aging brain will retrace their steps and remember the moment that they answered the phone, whereas an individual with Alzheimer's disease will not remember the phone call or be able to retrace their steps.

Kallmyer points out that the role of an in-home caregiver to someone with Alzheimer's is unique in the length of the disease and increased need. "It starts with helping with memory aides and then ends when the person with Alzheimer's can do nothing for themselves," she says.

Another benefit to early detection of Alzheimer's disease is that the individual can decide if they want to be part of future Alzheimer's research by signing up to participate in clinical trials. "When somebody has a fatal illness, clinical trials can be a great way for them to feel like they are making a change," Kallmyer says. "They might feel like they are making a difference for their kids and grandkids."

Ultimately, with hopes that there will be treatments for Alzheimer's disease, the time to intervene will be in the earliest stages of the brain disease. "This approach envisions what is now common practice in heart disease," says Dr. Snyder. "Where early signs of risk -- for example, in genetic markers or in blood cholesterol and/or blood pressure levels -- can be treated to reduce the chances of heart attack or stroke later on."

Dr. Snyder said there is a lot more research to be done on Alzheimer's disease. "There are many unanswered questions in Alzheimer's disease," she says. "We do not yet know the causes of the disease, we do not know risk factors associated with Alzheimer's disease."

By Leann Reynolds

When Lapses Are Not Just Signs of Aging

2011-09-07T09:03:00.000-07:00

Who hasn’t struggled occasionally to come up with a desired word or the name of someone near and dear? I was still in my 40s when one day the first name of my stepmother of 30-odd years suddenly escaped me. I had to introduce her to a friend as “Mrs. Brody.”

But for millions of Americans with a neurological condition called mild cognitive impairment, lapses in word-finding and name recall are often common, along with other challenges like remembering appointments, difficulty paying bills or losing one’s train of thought in the middle of a conversation.

Though not as severe as full-blown Alzheimer’s disease or other forms of dementia, mild cognitive impairment is often a portent of these mind-robbing disorders. Dr. Barry Reisberg, professor of psychiatry at New York University School of Medicine, who in 1982 described the seven stages of Alzheimer’s disease, calls the milder disorder Stage 3, a condition of subtle deficits in cognitive function that nonetheless allow most people to live independently and participate in normal activities.

One of Dr. Reisberg’s patients is a typical example. In the two and a half years since her diagnosis of mild cognitive impairment at age 78, the woman learned to use the subway, piloted an airplane for the first time (with an instructor) and continued to enjoy vacations and family visits. But she also paid some of the same bills twice and spends hours shuffling papers.

Dr. Ronald C. Petersen, a neurologist at the Mayo Clinic College of Medicine in Rochester, Minn., described mild cognitive impairment as “an intermediate state of cognitive function,” somewhere between the changes seen normally as people age and the severe deficits associated with dementia.

While most people experience a gradual cognitive decline as they get older (only about one in 100 lives long without cognitive loss), others experience more extreme changes in cognitive function, the neurologist wrote in The New England Journal of Medicine in June. In population-based studies, mild cognitive impairment has been found in 10 percent to 20 percent of people older than 65, he noted.

Dr. Petersen described two “subtypes” of the condition, amnestic and nonamnestic, that have different trajectories. The more common amnestic type is associated with significant memory problems, and within 5 to 10 years usually — but not always — progresses to full-blown Alzheimer’s disease, he said in an interview.
“Subtle forgetfulness, such as misplacing objects and having difficulty recalling words, can plague persons as they age and probably represents normal aging,” he wrote. “The memory loss that occurs in persons with amnestic mild cognitive impairment is more prominent. Typically, they start to forget important information that they previously would have remembered easily, such as appointments, telephone conversations or recent events that would normally interest them,” like the outcome of a ballgame would a sports fan.
The forgetfulness is often obvious to those who are affected and to people close to them, but not to casual observers.

The less common nonamnestic type, which is associated with difficulty making decisions, finding the right words, multitasking, visual-spatial tasks and navigating, can be a forerunner of other kinds of dementia, Dr. Petersen said.

In general, Dr. Reisberg said, “mild cognitive impairment lasts about seven years before it begins to interfere with the activities of daily life.”

The Correct Diagnosis

Distinguishing mild cognitive impairment from the effects of normal aging can be challenging. Typically, new patients take a short test of mental status, provide a thorough medical history and are checked for conditions that may be reversible causes of impaired cognition. Problems like depression, medication side effects, vitamin B12 deficiency or an underactive thyroid can mimic the symptoms of mild cognitive impairment.
Other tests, like an M.R.I. or CT scan of the brain, can look for evidence of a stroke, brain tumor or leaky blood vessel that may be impairing brain function.
It is natural, Dr. Petersen said, for patients and their families to want to know whether and how quickly the disorder might progress. While patients decline by about 10 percent each year, on average, certain factors are associated with more rapid progression. Among these are the presence of a gene called APOE e4, more common among patients with Alzheimer’s disease; a reduced hippocampus, a region of the brain important to memory; and a low metabolic rate in the temporal and parietal regions of the brain.
Amyloid plaques in the brain, while a hallmark of Alzheimer’s disease and a predictor of progression, have also been found at autopsy in people with perfectly normal cognitive function.

Preserving Cognitive Function

Despite a number of clinical trials that tested various medications, no drug to treat mild cognitive impairment has been approved by the Food and Drug Administration. But experts like Dr. Reisberg and Dr. Petersen suggest several approaches that may slow the decline in cognitive function.
Although studies did not show that medications like donepezil (brand name Aricept) and memantine (Namenda), both used to treat Alzheimer’s disease, change the ultimate course of mild cognitive impairment, Dr. Reisberg said they can be useful temporary treatments that may stabilize patients for a few years.
Although the drugs are not approved for this condition, licensed physicians can prescribe approved medications “off label.” “Clinicians have to work with what we have,” Dr. Reisberg said.
There are people who think they are having memory problems, but tests do not show anything definitive. Some may be in Stage 1 of Alzheimer’s disease, Dr. Reisberg said, and perhaps could benefit from early treatment with the drugs.

It is also important to reduce cardiovascular risk factors like smoking, elevated cholesterol and high blood pressure; keep blood sugar at normal levels; minimize stress (which in animal studies can cause the hippocampus to shrink); and avoid anticholinergic drugs that can interfere with brain chemicals important to memory. These include Demerol to treat pain, Detrol to treat a leaky bladder, tricyclic antidepressants, Valium, and over-the-counter medications with Benadryl (diphenhydramine), like Tylenol PM, Dr. Petersen said.

Some cognitive rehabilitation exercises, like computer games that enhance focus, may be helpful, Dr. Petersen said, but there have been few good studies to demonstrate a benefit. Compensatory techniques, like taking notes, creating mnemonics and making structured schedules, can be useful aids, he added.
But most promising is regular physical exercise, which in animal studies was found to reduce the accumulation of amyloid in the brain. An Australian study in patients with memory problems showed that brisk walking for 150 minutes a week improved cognitive function.

By JANE E. BRODY

New York Times

YAAA! Young Advocates for the Alzheimer's Association Meeting & Social

2011-08-05T09:27:00.001-07:00

PLEASE NOTE THE NEW LOCATION! Our next meeting is August 9th from 6-8pm in Phoenix. Please see below for more details and we will see you there! ~ Suzette

Applebees Neighborhood Grill & Bar

2547 N 44th St (just South of Thomas Rd)

Phoenix, AZ

YAAA!, Young Advocates for the Alzheimer's Association, will be having Monthly meetings every 2nd Tuesday of the month from 6:00-7:00 pm followed by a supportive social from 7:00 - 8:00 pm. Young adults 18-39 are welcome to attend! We will be reviewing current federal and state priorities of the Alzheimer's Association as well as any advocacy done by our YAAA! members for the previous month.

After the meeting we invite everyone to stay for our supportive social from 7:00 to 8:00pm to further bond with members, prospective members or just enjoy drink and food specials for happy hour! Please calendar this for future reference and let me know when you can make it. I am looking forward to seeing everyone!

YAAA! Facebook page: www.facebook.com/DSWYAAA

Live in Phoenix? Then Save the Date, May 10th & Every 2nd Tuesday Evening!

2011-05-05T08:32:00.004-07:00

EVENT 1 (12-3 p.m.)

My friends at the Banner Alzheimer's Institute are hosting a 3 hour program for friends and family of loved ones with Frontotemporal Dementia (FTD, sometimes called Pick's disease) to help them better understand and cope with the symptoms, disease progression and the kind of care required. You'll hear from experts in the field of this dementia, get your questions answered and meet others who are in the same boat.
Remember, you may feel like you're an island unto yourself when dealing with this, but you are never alone. You just have to take that step, and this is a great first step.
Space is LIMITED, so register for this workshop STAT. Email Deidra Colvin at Deidra.Colvin@bannerhealth.com

EVENT 2 (6-8 p.m.)
YAAA!, Young Advocates for the Alzheimer's Association, will be hosting its supportive social starting at 6 p.m. at Cheuvront Restaurant & Wine Bar. YAAA! is for younger adult caregivers (18-39) and the intent is to focus on advocacy at the state and federal levels... This is your chance to make your voice heard! Our mix and mingle starts around 7 p.m... this is a great opportunity for caregivers, friends and family to connect, talk to people in the field and find a real support system here in the Valley.

Shriver: A woman's nation takes on Alzheimer's

2011-05-01T21:31:00.000-07:00

(CNN) -- Maria Shriver's father, Sargent Shriver, died from Alzheimer's in January after being diagnosed in 2003. In her first public remarks about her father since his death, Shriver spoke to Larry King about his battle with the disease, her thoughts on Alzheimer's research and why the disease is especially hard on women. Her interview can be seen in its entirety on Sunday, May 1 at 8 p.m. ET on "A Larry King Special, Unthinkable: The Alzheimer's Epidemic."

After her father's diagnosis, Shriver became a vocal advocate for Alzheimer's patients, families and caretakers. She partnered with the Alzheimer's Association to publish a groundbreaking study called "Alzheimer's in America: The Shriver Report on Women and Alzheimer's," which was just released in paperback.

The Shriver report looked at Alzheimer's as a women's disease from the point of view of the patient, the family and the caregivers. Below is an excerpt of a letter introducing "The Shriver Report:"
"I'm Maria Shriver, and I'm a child of Alzheimer's."
That's how I introduced myself last year when I testified before the Senate Special Committee on Aging. I was there to support the Alzheimer's Study Group, a blue-ribbon panel Congress had charged, at the request of the Alzheimer's Association, with designing an action plan to deal with Alzheimer's disease.
Alzheimer's is an epidemic. Every minute or so -- in fact, before you get to the end of this page -- someone in this country will develop Alzheimer's. Millions of people already have been formally diagnosed. Millions more are undiagnosed -- or diagnosed with some form of dementia that could actually be Alzheimer's. And with the 78 million baby boomers now moving into their later years, the cost of Alzheimer's to American society is expected to be $20 trillion between now and the year 2050. That's right -- $20 trillion.
There's no doubt about it. We are in the midst of a national emergency, and we're woefully unprepared.
So there I was in that packed hearing room, sitting with Alzheimer's Study Group members -- former House Speaker Newt Gingrich, former Sen. Bob Kerrey, former Supreme Court Justice Sandra Day O'Connor (who left the High Court to care for her husband with Alzheimer's) and Larry Butcher, chairman of Alzheimer's Community Care in Florida (who would lose his wife months later to younger onset Alzheimer's). We were all there to ask this powerful congressional committee to listen up, pay attention, increase funding and take on Alzheimer's.

I must admit it was something of a surreal experience for me, because the truth is, for so many years it was my father, Sargent Shriver, who would be sitting in that chair, pleading with senators to listen up, pay attention and increase funding. My dad was the one who would go up to the Hill to testify for his beloved Peace Corps and for all the War On Poverty programs he started and fought for, including Head Start, Vista, Job Corps and Legal Services for the Poor. My father was legendary for the way he worked the Capitol. He knew every senator and congressman by name. He knew their careers, their interests, their politics and their soft spots. He was a brilliant, idealistic and optimistic public servant. My dad was sharp and witty, a walking encyclopedia -- his mind a beautifully tuned instrument that left people in awe and inspired.

That was then. Today he doesn't know I'm his daughter, and he doesn't even know my name. To be honest, it's still really difficult to wrap my own mind around that. But so goes the reality and the heartbreak of Alzheimer's. It's a mind-blowing disease -- not just for the people who get it, but for everyone around them. That's why I'm so passionate about defeating it.

2011 Alzheimer's Association Advocacy Forum

2011-04-04T22:55:00.000-07:00

With newly elected leaders in Congress, it is more important than ever that our messages about the Alzheimer epidemic get heard. We need passionate Alzheimer advocates to come to Washington, D.C., to lend their VOICE to the cause.

Join us in our nation's capital May 15-17, 2011, for the Alzheimer's Association Advocacy Forum – become educated about the issues, learn new skills, network with fellow advocates and take our message directly to members of Congress to fight for our legislative agenda.

"I am going back this year! I met amazing, motivated people and had a life changing time. It is such an awe-inspirring time to be in an already beautiful place. To be able to make a difference, speak up... fight... I highly recommend this forum!"

—Advocate Suzette Armijo

2010 proved to be an outstanding year for Alzheimer advocacy. We saw:
• The historic passage and signing of the National Alzheimer's Project Act (NAPA).
• The inclusion of younger-onset Alzheimer's disease in the Social Security Administration's compassionate allowance program.

• The first-ever inclusion of Alzheimer's disease and other dementias in the government's Healthy People 2020 report.

• Detection of cognitive impairment included as a mandatory part of the new Medicare annual wellness visits
• More than 112,000 petition signatures collected through the Alzheimer's Breakthrough Ride urging Congress to make Alzheimer's disease a national priority.

Each of these major victories, together with all important wins that have happened around the country on a state and local level, would not have been possible without the commitment and action of you, the Alzheimer advocate.

But even as we celebrate our successes, we still have much work ahead to ensure we build on this momentum to lead our country toward overcoming the Alzheimer crisis. The Alzheimer's Association Advocacy Forum is the premier experience to learn how we can continue to successfully advocate for these issues.

This year's Forum will be held May 15-17, 2011, in Washington, D.C. We have a program that is designed to help you hone your advocacy skills — not just for your visits on Capitol Hill, but also as you return home. You will learn about our legislative priorities, our critical messages and how to deliver these messages to key decision makers. You will learn about how to engage your local legislators and how to use a wide variety of resources in your communities to encourage more people to join with us as Alzheimer advocates.

I look forward to seeing you in May as we celebrate our recent victories and redouble our efforts to secure the Association's mission of a world without Alzheimer's.

Karen Kauffman
Advocacy Forum Chair

Researchers closer to Alzheimer's blood test

2011-01-17T00:04:00.001-07:00

January 7, 2011

American researchers say they have made a breakthrough in the quest for a blood test for Alzheimer's disease.

Scientists from the Scripps Research Institute in the US have published research that outlines technology which detects molecules specific to Alzheimer's in a patient's blood.

Melbourne University Professor Ashley Bush says the new American technology could be useful.

"They've shown, that at least on a small scale, it can pick a big difference between Alzheimer's disease and normal people," he said.

"But we've already had several tools at our disposal that can see such differences.

"What we really need is to show whether or not it can make a prediction from a normal person before they become symptomatic with Alzheimer's disease - to be able to determine whether the change that's seen occurs early enough so that it can tell us that years down the track they're going to be developing the symptoms."

Professor Bush is also the co-director of the Australian Imaging, Biomarkerand Lifestyle Flagship Study (AIBL), which is monitoring 1,100 Australians as they age, by taking blood samples and measuring brain performance.

Professor Bush believes it is the biggest study being undertaken by any country and hopes it will lead to the development of a predictive blood test for Alzheimer's in the next five to 10 years.

He says he and his colleagues are acutely aware of the urgent need for the blood test.

"Alzheimer's disease is going to be a social climate change for us," he said.

"There are so many people coming down with the disease because of the successful ageing of the population.

"Being old is pretty common nowadays and it's only going to become more common.

"It's estimated that if things don't change, if we don't have a disease modifying treatment for Alzheimer's disease it's going to drain about 3 per cent of the country's wealth by the year 2050 when over a million people will be affected by it."

The American research is being published in today's edition of scientific journal Cell.

By Samantha Donovan

Geriatric Case Managers: A Valuable Resource for Families Caring for An Aging Relative

2011-01-17T00:00:00.001-07:00

As a geriatric care manager, I receive inquiries from family members who are caring for a relative, and “don’t know quite why I am calling but I was told you could help me”. Or sometimes I receive calls from family members who admit to needing help but ask “What exactly do you do?”

Here is a brief description of geriatric care managers and how they might be helpful to you and your aging relative:

Who are geriatric care managers?

Typically a geriatric care manager (GCM) is a social worker, counselor, gerontologist or nurse. Many GCMs have their own private practice, and some work for an agency such as the Council on Aging, Jewish or Catholic Social Services, etc. Geriatric care managers can help caregivers and older adults, whether they live close by or a long distance away with the multitude of issues related to an older relative’s and caregiver’s personal well being.

What do Geriatric Care Managers do?

The scope of practice can vary from GCM to GCM, but generally speaking, most or all of the following services are offered.

Geriatric care managers:

LISTEN. Before a geriatric care manager knows how she can help you, it is important to hear your story: your parent’s health and situation, how you are doing and what is concerning you. During your initial, as well as on-going conversations, GCMs listen to what you have to say. They value your input. They ask questions to make sure they understand your unique situation and how they can help.

Conduct an assessment of your relative’s health, safety, capabilities and needs. In my practice, I try to conduct assessments in the older person’s home, so she can feel more relaxed and in control. A casual conversation blended with some direct questions and observations can give me a good idea of the abilities and needs of the person. An assessment can take 2 hours or more depending on the complexities of the situation.

Report the results of the assessment, including recommendations for planning for the near future and beyond. Families often use this tool to make sure everyone has the same information about what is happening, what needs to be done, and who is going to do what needs to be done.

Coordinate and oversee services that your relative is receiving. Having a professional involved who is experienced in working with community and health care providers and ‘speaks their language’, can not only be efficient but can ensure that quality services are delivered. For example, if your relative could benefit from some part time help in the home, a GCM can schedule caregivers (or companions) orient them to what is needed and then work with you to make sure the level of assistance is being given. Some GCMs employ caregivers, others do not.

Advocate for what you and your relative need with doctors and other health care providers, attorneys, bankers, and community services and residential care settings. I have several clients who live in residential care settings, a distance from their adult children. I am not only able to report how their relative is doing when I visit, but I am able to meet with the managers about any changes that need to take place to maintain my client’s health, comfort and safety.

Support the older adult and family through transitions such as bringing help in the home, attending an adult day center, or moving from home to a residential care setting. These decisions and changes can be made easier with the guidance and support of an experienced care manager.

Facilitate family meetings. When a parent’s health, memory or situation changes, family meetings can be an opportunity for families to get together to talk about the present situation and how best to help the parent or the caregiver. Family meetings can also be a time for a geriatric care manager to educate families about a disease, present and describe services that can help, and answer any questions. If a parent is reluctant to accepting help, or the family cannot come up with a plan that everyone can agree to, a non-partial facilitator can help.

Act as a resource person and make referrals to services that can help now and in the future.

Geriatric care managers are committed to ensuring that families have the best quality of life possible, given their individual situation.

How much do geriatric care charge for their services?

The fees for private geriatric care managers vary from state to state and region to region. Many GCMs have a set hourly fee; some require a deposit for services when a contract is signed. Hours are then billed at the hourly rate and deducted from the deposit. It is best to ask up-front what the billing rate is, what it includes and if a contract needs to be signed before services can be started. Keep in mind that most care managers will work with you on an ‘as-needed’ basis, for a specific length of time or as long as needed.

How do I find a geriatric care manager?

Members of the National Association of Professional Geriatric Care Managers (NAPGCM) can be found on http://www.caremanager.org/ or by calling 1-521-881-8008. Questions to ask when you interview GCMs are posted on the site. To find GCMs that are not members of the National Association, call your local Council on Aging.

By Laurie White

National Alzheimer’s Project Act (NAPA) Becomes Law

2011-01-06T16:20:00.000-07:00

Landmark legislation passes

The National Alzheimer's Project Act (NAPA) is the largest legislative victory in many years for the Alzheimer cause. Over the last several years, the Alzheimer's Association has been the leading voice in urging Congress and the White House to pass the National Alzheimer's Project Act (NAPA). The National Alzheimer's Project Act will create a coordinated national plan to overcome the Alzheimer crisis and will ensure the coordination and evaluation of all national efforts in Alzheimer research, clinical care, institutional, and home- and community-based programs and their outcomes. Alzheimer's advocates were instrumental in moving NAPA through Congress. More than 50,000 e-mails, nearly 10,000 phone calls and more than 1,000 meetings by the Alzheimer's Association and its advocates led us to the historic legislative victory for the Alzheimer community.

NAPA Chronology

January 4, 2011	President Obama signs NAPA into law, marking the largest legislative victory in many years for the Alzheimer cause.

Late December	Alzheimer's Association advocates have sent more than 15,000 email messages to the White House asking the President to sign the National Alzheimer's Project Act into law.

December 15, 2010	Thousands of advocates flood Capitol Hill with phone calls and e-mails urging their Representatives to vote for NAPA. NAPA is passed by the House of Representatives and moves to the White House for signature.

December 9, 2010	Alzheimer's Association President and CEO Harry Johns testified before the House Committee on Energy and Commerce, Subcommittee on Health. Harry spoke about the importance of NAPA and encouraged its immediate passage.

December 8, 2010	After Alzheimer's Association advocates blanket Senate offices with phone calls and e-mails for several days, asking the Senate to pass NAPA immediately, the National Alzheimer's Project Act (S.3036) passed the Senate unanimously and moved to the House of Representatives.

December 1, 2010	After months of behind the scenes work by the Alzheimer's Association federal affairs team with champions in Congress, the Senate Committee on Health, Education, Labor, and Pensions (HELP) approved the National Alzheimer's Project Act (S. 3036).

October 18, 2010	With the release of The Shriver Report: A Woman's Nation Takes on Alzheimer's Disease, repeated appeals are made for the passage of NAPA in Hill visits, Administration briefings, Washington policy briefings, and by Maria Shriver in interviews on This Week and other news programs.

September 21, 2010	Concluding the Alzheimer's Breakthrough Ride, on World Alzheimer's Day participants cycled to Capitol Hill and presented more than 110,000 petition signatures for delivery to Congress. The petition called for passage of the National Alzheimer's Project Act and two other Alzheimer's Association priorities. Researchers who participated in the Alzheimer's Breakthrough Ride visited Capitol Hill to meet with more than 50 Members of Congress, urging their support for NAPA. Later that day, the Alzheimer's Association delivered a message in support of NAPA at a special White House briefing on Alzheimer's disease. Harry Johns, Alzheimer's Association President and CEO, and National Board Member Stephen Hume, Psy.D., an individual living with the disease, made presentations at the meeting, focusing on the urgent need for a coordinated national Alzheimer's strategy and for its swift implementation. See the full video of the White House meeting.

July 30, 2010	The Alzheimer's Association President and CEO Harry Johns, former National Board Public Policy Chair Bettylu Saltzman, and Public Policy Vice President Robert Egge meet again with Pete Rouse, one of President Obama's top aides, to solicit the Administration's support for NAPA and for creating a national strategy to combat Alzheimer's disease.

Summer 2010	The Alzheimer's Association's President and CEO, Harry Johns, and the federal affairs team make the rounds on Capitol Hill, meeting with members of Congress and staff to drum up support for NAPA and to plan strategy on how to enact the bill by the end of the year.

March 9, 2010	Alzheimer's Association Advocacy Forum attendees march on Capitol Hill to meet with their Members of Congress, urging their support for the National Alzheimer's Project Act. David Hyde Pierce joins advocates from Iowa to meet with Sen. Chuck Grassley (R-Iowa).

February 2, 2010	With active collaboration and drafting support from the Alzheimer's Association, the National Alzheimer's Project Act is reintroduced by Senator Evan Bayh and Senator Susan Collins in the Senate (S.3036) and by Rep. Ed Markey and Rep. Chris Smith (H.R.4689) in the House. The Alzheimer's Association immediately endorses the reintroduced bill.

July 31, 2009	Based on the Alzheimer's Study Group recommendations and following consultations with the Alzheimer's Association, Sen. Mel Martinez introduces the first National Alzheimer's Project Act in Congress. The Alzheimer's Association immediately endorses the bill.

July 20, 2009	The Alzheimer's Association President and CEO Harry Johns, former National Board Public Policy Chair Bettylu Saltzman, and Public Policy Vice President Robert Egge meet with Pete Rouse, one of President Obama's top aides, to discuss the Alzheimer's crisis and introduce the need for a bold, coordinated national Alzheimer strategy to address it.

March 25, 2009	Alzheimer's Study Group releases its final report, A National Alzheimer's Strategic Plan: The Report of the Alzheimer's Study Group. The report calls for the creation of a National Alzheimer's Strategy and an Alzheimer's Project Office within the federal government. Harry Johns, President and CEO of the Alzheimer's Association, pledged, "You can be assured that the Alzheimer's Association will play a leading role in seeking the enactment of the core recommendations present in the ASG report." That same day, advocates attending the 2009 Alzheimer's Association Advocacy Forum visited their Members of Congress urging support for these key Alzheimer's Study Group recommendations, the beginning of the Association's ongoing campaign to accomplish this objective in the 111th Congress. Register now to attend the 2011 Alzheimer's Association Advocacy Forum.

July 11, 2007	With endorsement of, and financial and in-kind support from, the Alzheimer's Association, the Alzheimer's Study Group is launched at a Capitol Hill Conference. The Alzheimer's Study Group is also endorsed at the launch event by then Alzheimer's Disease Task Force co-chairs, then-Senator Hillary Clinton and Senator Susan Collins, and Rep. Ed Markey and Rep. Chris Smith, as well as by Senator Barbara Mikulski and Senator Richard Burr.

July 2007	Speaker Newt Gingrich and Robert Egge author an article in Alzheimer's and Dementia: The Journal of the Alzheimer's Association. This article, "Developing a National Alzheimer's Strategy Equal to the Epidemic," first makes the case for the creation of a federal Alzheimer strategy.

Alzheimer News 12/2/2010

2010-12-21T22:23:00.002-07:00

First-time inclusion of Alzheimer's and dementia in Healthy People 2020

The Alzheimer's Association is pleased that for the first time since its inception in 1979, the federal government's Healthy People report includes national health goals and objectives related to Alzheimer's disease and other dementias. The report — known as Healthy People 2020 — represents the nation's highest priorities for health promotion and disease prevention and is central to establishing measurable national public health goals for coming decade at all levels of government.

With more than 5 million Americans living with Alzheimer's today and as many as 16 million individuals who could be affected by 2050, inclusion in Healthy People 2020 underscores the recognition of the growing public health threat Alzheimer's and dementia pose to the nation.

Alzheimer's is the sixth-leading cause of death and was the only one of the 10 leading causes of death that did not have a designated topic area in the Proposed Healthy People 2020 Objectives released last fall. A strong grassroots mobilization effort led by the Alzheimer's Association, which included Alzheimer advocates from across the country, a number of the nation's top scientists and researchers, and policymakers from across the political spectrum, has resulted in the inclusion of Alzheimer's and other dementias as a new and separate topic area clearly conveying the importance of Alzheimer's and dementia on a national scale.

The objectives identified in the report include increasing the proportion of persons with diagnosed Alzheimer's disease and other dementias, or their caregiver, who are aware of the diagnosis. Awareness that Alzheimer's or dementia is present is central to ensuring individuals and their families have knowledge of available treatments, care and support services and also greater opportunities to make future care, financial and legal plans. Yet today, fewer than half of those with Alzheimer's have a diagnosis in their medical records.

Another key objective that would contribute to decreasing costs associated with the disease is the goal of reducing the number of preventable hospitalizations for individuals living with Alzheimer's and other dementias. People with Alzheimer's and other dementia typically have higher hospital admissions, longer stays and higher hospital readmission rates — and therefore incur higher costs. Preventable hospitalizations are defined as a hospitalization for a condition that can be prevented altogether or whose course can be mitigated with optimum outpatient management, thus preventing the hospitalization.

"Alzheimer's disease prevalence increases with age, which is why the number of people affected by these conditions will soar rapidly — in lock step with increases in the number of adults age 65 and older from 2011 to 2030," said Robert Egge, Alzheimer's Association vice president of public policy." As the leading research, advocacy and support organization for Alzheimer's disease, the Association has actively sought the inclusion of Alzheimer's and dementia in Healthy People 2020. We recognize the importance of having Alzheimer's clearly represented in the national health framework, as it is central to all levels of government taking action to address the mounting crisis."

The Association recognizes the efforts of its strong network of advocates who made their concerns about the absence of the disease in the proposed draft well-known. Additionally, the Association would like to thank the Healthy Aging Program at the Centers for Disease Control and Prevention (CDC), which worked to educate the Secretary's Advisory Committee on Health Promotion and Disease Prevention Objectives for 2020, the Federal Interagency Workgroup, and other stakeholders about the importance of having Alzheimer's and dementia included in Healthy People 2020.

Alzheimer's Association

The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer's. For more information, visit http://www.alz.org/.

Contact: Alzheimer's Association

Media line: 312.335.4078
E-mail: media@alz.org

Alzheimer's: Planning for the holidays

2010-11-26T13:46:00.001-07:00

Holidays can be bittersweet for families affected by Alzheimer's. Consider simple tips to make the holidays enjoyable for everyone.

Alzheimer's disease affects both family and community life. Holiday observances are no exception. Holiday memories from before your loved one developed Alzheimer's may darken an otherwise joyful season — and worries about how your loved one's condition may disrupt your family's plans can overshadow the simple pleasure of being together. Rather than dwell on how much things have changed or worry about what might go wrong, focus on making the holidays as enjoyable as possible.
Keep it simple at home

If you're caring for a loved one who has Alzheimer's at home:
■Make preparations together. If you bake, your loved one may be able to participate by measuring flour, stirring batter or rolling dough. You may find it meaningful to open holiday cards or wrap gifts together. Remember to concentrate on the process, rather than the result.

■Tone down your decorations. Blinking lights and large decorative displays can cause disorientation. Avoid lighted candles and other safety hazards, as well as decorations that could be mistaken for edible treats — such as artificial fruits.

■Host quiet, slow-paced gatherings. Music, conversation and meal preparation all add to the noise and stimulation of an event. Yet for a person who has Alzheimer's, a calm, quiet environment usually is best. Keep daily routines in place as much as possible and, as needed, provide your loved one a place to rest during family get-togethers.

Be practical away from home

If your loved one lives in a nursing home or other facility:
■Celebrate in the most familiar setting. For many people who have Alzheimer's, a change of environment — even a visit home — causes anxiety. Instead of creating that disruption, consider holding a small family celebration at the facility. You might also participate in holiday activities planned for the residents.

■Minimize visitor traffic. Arrange for a few family members to drop in on different days. Even if your loved one isn't sure who's who, two or three familiar faces are likely to be welcome, while nine or 10 may be overwhelming.

■Schedule visits at your loved one's best time of day. People who have Alzheimer's tire easily, especially as the disease progresses. Your loved one may appreciate morning and lunchtime visitors more than those in the afternoon or evening.

Holidays can be bittersweet for families affected by Alzheimer's. Consider simple tips to make the holidays enjoyable for everyone.

By Mayo Clinic

YAAA! Young Advocates for the Alzheimer's Association

2010-11-02T23:00:00.003-07:00

What is YAAA!

Young Advocates for the Alzheimer's Association! YAAA! is the new advocacy subcommittee of the Alzheimer's Association Desert Southwest Chapter that is focused on involving young adults.

Our Mission:

YAAA! (Young Advocates for the Alzheimer's Association) acts as a subcommittee of the Desert Southwest Chapter Advocacy Committee, and is open to adults aged 18-39 who are interested in furthering awareness of dementia-related issues and Alzheimer's advocacy efforts.

YAAA! is dedicated to engaging and empowering young adults to initiate positive change for people and families impacted by Alzheimer's disease and related dementias.

Our Priority:

Increase involvement of young advocates in the Alzheimer's Association's public policy efforts through targeted recruitment and engagement at Chapter events and YAAA! participation in Chapter advocacy efforts.

We need your help- Join the cause

As Alzheimer's disease threatens to bankrupt families, businesses and our healthcare system, scientists are coming closer to finding better treatments that could drastically alter the course of the disease. Now is the time to join us and speak up for the needs and rights of people with Alzheimer's and their families, and help persuade Congress to increase funding for research.

As an advocate, you will:

•Generate action from our elected officials by making calls and writing letters.

•Stay on top of policy and legislative issues through alerts and updates.

•Help elevate Alzheimer's from a disease to a cause.

For more information contact Cathy Griner, Director of Program & Advocacy, at 602.528.0545 or cathy.griner@alz.org

"Grandma, this is just a healing place... you can go home tomorrow"

2010-11-02T22:42:00.001-07:00

I lied... I lie because I care about you. Today was a rough day. You are in a new home. The move was simple... but I know YOU know it is still not home. I wish I had you here, cognitively I mean, so I could ask for advice. So I could find out how you would handle these situations. I wish I could remember more of how you handled things when you took care of Great Grandma Mary and Great Grandpa Ray. I wish I had the strength, the financial capability to keep you in "your" home until the day you pass on to the next world. I am here for you regardless... until the day comes that we cannot share this world. I will have no regret.

To find caregiver support in your area check out your local Alzheimer's Association site at http://www.alz.org/. If you are a young adult interested in advocating on a broader scale, contact me, or check us out online. YAAA!, Young Advocates for the Alzheimer's Association serving the Desert Southwest Chapter including Arizona and Southern Nevada. Open to the world of caregivers. You are not alone.

DEMENTIA: Mind vs. BODY

2010-11-02T22:13:00.000-07:00

Dementia is often viewed as a disease of the mind, an illness that erases treasured memories but leaves the body intact.

But dementia is a physical illness, too — a progressive, terminal disease that shuts down the body as it attacks the brain. Although the early stages can last for years, the life expectancy of a patient with advanced dementia is similar to that of a patient with advanced cancer.

The lack of understanding about the physical toll of dementia means that many patients near the end of life are subjected to aggressive treatments that would never be considered with another terminal illness. People with advanced dementia are often given dialysis and put on ventilators; they may even get preventive care that cannot possibly help them, like colonoscopies and drugs for osteoporosis or high cholesterol.

“You can go to an intensive-care unit in most places,” said Dr. Greg A. Sachs, chief of general internal medicine and geriatrics at Indiana University School of Medicine, “and you’ll find people with dementia getting very aggressive treatment.”

The continued focus on treatment to prolong life often means that pain relief is inadequate, and symptoms like confusion and anxiety are worsened. A new study suggests that family members would be far less likely to subject their loved ones to such treatment if they had a better understanding of dementia as progressive, debilitating illness that ultimately shuts down the body after years of mental deterioration.

Harvard researchers recently followed 323 residents of 22 nursing homes. All had end-stage dementia, meaning that they no longer recognized family members, could speak fewer than six words and were incontinent and bedbound. During the 18-month study period, more than half of the patients died.

During the last three months of life, 41 percent of the patients received at least one “burdensome” treatment, like transport to the emergency room, hospitalization, feeding tubes or intravenous treatments. Advanced dementia patients are particularly prone to infections because of incontinence, risk of bedsores, a depressed immune response and inability to report symptoms.
When the investigators looked more deeply into the reasons for treatment decisions, they discovered stark differences based on what family members knew about dementia. When they understood its progressive and terminal nature, only 27 percent of the patients received aggressive care. For family members who did not understand the disease, the figure was 73 percent.

“When family members understood the clinical course of dementia and the poor prognosis, the patients were far less likely to undergo these distressing interventions,” said the study’s lead author, Dr. Susan L. Mitchell, senior scientist at the Institute for Aging Research of Hebrew SeniorLife in Boston. “Dementia is a terminal illness and needs to be recognized as such so these patients receive better palliative care.”

The study also found that pain control was often inadequate. One in four subjects were clearly suffering from pain, but that number may understate the problem, because the patients were unable to talk about their pain.

Dr. Sachs, at Indiana, notes that care for patients with dementia has changed very little in the past 30 years. As a teenager, he watched his grandmother decline from Alzheimer’s disease. During her final months, she was repeatedly treated for infections and put in restraints or sedated to control agitation.

“Seeing my grandmother in that state was so distressing that my mother eventually stopped taking the grandchildren to visit,” Dr. Sachs wrote last week in an editorial in The New England Journal of Medicine. “My grandmother had little in the way of comfort or company toward the end. In my medical training, I learned how my grandmother’s final months were typical for people dying from dementia.”

A 2005 report from the Alzheimer’s Association showed troubling trends in care at the end of life. In a sweeping review of the medical literature, the investigators found that 71 percent of nursing home residents with advanced dementia died within six months of admission, yet only 11 percent were referred to hospice care, which focuses on comfort rather than active treatment.

Simply transferring a dementia patient from the nursing home to a hospital can lead to confusion, falls or a decline in eating — which in turn, often leads to further aggressive treatment.

Geriatricians say a large part of the problem is that the patients are unable to make their wishes known. In the absence of a living will, family members often struggle with guilt and are afraid to stop aggressive treatment because they do not want to be seen as abandoning a loved one in mental decline.

Dr. Sachs says doctors need to spend more time explaining the prognosis for advanced dementia, making it clear that palliative care does not mean less care.

“We’re not talking about aggressive care versus no care,” he said. “Palliative care is aggressive and attentive and focused on symptom management and support of the patient and family. It’s not any less excellent care.”

By TARA PARKER-POPE

VA Benefits

2010-10-19T21:57:00.000-07:00

VA benefits are often confusing, as is the process for applying for them. Many people believe they are not entitled to benefits because they did not serve long enough in the military or they did not go overseas during a war. Both of those assumptions may be incorrect. A veteran, or surviving spouse of a veteran, may qualify for some sort of VA benefit if the veteran served 90 days of active duty and one of those days was during a declared state of war. The veteran did not have to be overseas, or even see combat, if one of those 90 days was during a declared state of war.

There are two types of VA benefits: compensation and pension. Compensation is for veterans who have a service connected disability or injury. The disability or injury is rated as a percentage of loss (10%, 20%, etc., up to 100%), and the percentage can increase after a claim is filed.

Pension is a benefit for a veteran or an un-remarried surviving spouse who is either unable to work due to disability or is age 65 or older. This benefit requires that a veteran have been on active duty for 90 days with one day during a declared state of war, and with a discharge other than dishonorable. It is a benefit based on income, assets and need. Along with pension, a veteran or surviving spouse may qualify for additional money if they are housebound or in need of aid and attendance.

First, the dates of the declared states of war are as follows:

Mexican Border Period: May 9, 1916 – April 5, 1917

World War I: April 6, 1917 – November 11, 1918

World War II: December 7, 1941 – December 31, 1946

Korean Conflict: June 27, 1950 – January 31, 1955

Vietnam Era: August 5, 1964 – May 7, 1975 (begins February 28, 1961 if in the Republic of Vietnam at that time)

Persian Gulf: August 2, 1990 – date yet to be determined

The maximum available pension resource is the maximum pension a veteran or surviving spouse can receive depending on need. The maximum monthly pension rates for VA for 2010 are:

Veterans Benefits:

$985 – Basic Pension – Veteran without a Spouse

$1,291 – Basic Pension – Veteran with a Spouse

$1,204 – Housebound Pension – Veteran without a Spouse

$1,510 – Housebound Pension – Veteran with a Spouse

$1,644 – Aid and Attendance – Veteran without a Spouse

$1,949 – Aid and Attendance – Veteran with a Spouse

Surviving Spouse Benefits:

$660 – Basic Pension – Widow/Widower

$807 – Housebound Pension – Widow/Widower

$1,056 – Aid and Attendance – Widow/Widower

The maximum available pension resource is reduced by income. Income, for VA purposes, is gross household income less any out-of-pocket medical expenses, also referred to as unreimbursed medical expenses. Examples of these expenses include Medicare premiums, other health insurance premiums, in home care, hygienic supplies, adult day care, nursing home or assisted living expenses, etc…any medical expense that is incurred and not reimbursed.

If the VA counted income is more than the maximum available pension resource, the VA will not pay any benefits to the veteran or surviving spouse. For example, a veteran without a spouse who has $1500 per month in gross household income and unreimbursed medical expenses of $500 per month would receive no benefit ($1500 – $500 = $1000, which is greater than $985).

If the VA counted income is less than the maximum available pension resource, then take the maximum available pension resource and subtract the VA counted income, and that is the pension amount. For example, a veteran who is married and needs assistance, with $1500 per month in gross household income and $3000 per month in unreimbursed medical expenses would receive $1949 per month, because his or her VA counted income is $0. However, if the unreimbursed medical expenses were $1000 per month, the veteran would get approximately $1449 per month ($1949 {maximum pension} – $500 {VA counted income, which is $1500 – $1000} = $1449).

“Housebound” is when a person is substantially confined to his/her house/immediate premises for reasons that are likely to continue through his/her lifetime. “Aid and attendance” is when a person is unable to perform their activities of daily living without the assistance of another person (i.e. dressing/undressing, transferring, bathing, etc.).

The VA will also consider a veteran’s/surviving spouse’s assets before determining pension entitlement. Assets that are not considered include the home, vehicle, personal possessions, assets in an irrevocable trust, or certain types of annuities. The general guidelines for the VA in determining pension eligibility based on assets is $80,000 for a married couple and $50,000 for a single veteran or surviving spouse. However, there is no exact resource limit. The VA will review the age of the applicant, the costs of care and the illnesses of the applicant.

Unlike ALTCS (or Medicaid), there are no look back periods related to VA benefits. The VA does not penalize the veteran or surviving spouse for transferring or gifting assets.

We have tried to give you a brief overview of compensation and pension benefits available through the VA. The VA offers many more benefits, such as reduced pharmacy costs, burial plots, nursing home benefits and others. Each benefit has its own set of eligibility criteria. There is a lot of misinformation in the public domain! Please be sure to get correct information by contacting the Arizona Department of Veteran’s Services, any other veteran’s service organization or an attorney with experience in this area.

By The Kile Law Group

What is Alzheimer's? By ABC News

2010-10-19T21:46:00.001-07:00

Alzheimer's management from diagnosis to late stage

2010-07-15T09:41:00.000-07:00

With the aging of the population, the incidence and prevalence of Alzheimer's disease (AD), already the most common type of dementia, are projected to rise. A diagnosis of AD has implications for ongoing care across all settings and providers—whether you are the primary-care provider (PCP) and made the diagnosis, assuming the care of a new patient with AD, or a consultant asked to provide input for a chronic problem of someone with AD. A diagnosis of AD adds to the complexity and cost of care. This article focuses on post-diagnostic care and is based on the 2008 report from the California Workgroup on Guidelines for Alzheimer's Disease Management.1 

Because it is a slowly progressive neurodegenerative condition that may continue for a decade or more after diagnosis, management of AD must change over time. The majority of patients with AD (and their caregivers) receive their medical care from PCPs.2 PCPs are key to ensuring the care provided is appropriate to the patient's needs and situation.  
Assessment 

Appropriate treatment plans and goals that meet all of a patient's needs require ongoing comprehensive assessment of the patient, the family, and the living situation. This assessment should include daily functioning, cognitive status, comorbid medical conditions, behavioral symptoms, medications (prescription and OTC), living arrangement and safety, and need for palliative and/or end-of-life care. The use of standardized instruments to assess function, cognition (Table 1), and behavior (Table 2) can help the PCP monitor changes.

Longitudinal monitoring of disease progression and response to therapy, along with regular health maintenance examinations, are essential.3,4 The frequency of visits depends on a number of factors, including the patient's clinical status, likely rate of change, current treatment plan, need for any specific monitoring of treatment effects, and the reliability and skills of the patient's caregivers and support system. Assessment should occur at least every six months or any time there is a sudden change in behavior or increase in the rate of decline.  

It is essential that assessment also include identification of the primary caregiver and the adequacy of family and other support systems. Assessment of the caregiver should include knowledge, social support, health status (including psychiatric symptomatology), and ethnic and cultural issues.5 Family caregivers are central to the PCP's assessment and care of the person with AD.6 Therefore, establishing and maintaining a relationship with caregivers is crucial in the ongoing care of patients with AD.7 This relationship is most important as the disease progresses into the moderate and severe stages, at which time family members who oversee day-to-day care and implement and monitor treatment become the real managers.8  

Beginning at the time of diagnosis and continuing throughout the course of the disease, ongoing assessment of a patient's decision-making capacity is essential. Capacity assessment is decision-specific, with more complex decisions requiring higher cognitive function than simpler decisions.9 Since patients with AD experience decreasing cognition and will eventually lose all decision-making ability, identification of a surrogate decision maker early in the course of the disease is important. In the beginning stages of AD, patients typically retain their decision-making capacity and are able to appoint a surrogate decision-maker for the time in the future when they will no longer retain this capacity.10 In addition, identification of the patient's and family's culture, values, primary language, and literacy level is necessary to assure that an appropriate treatment plan is developed and can be carried out. 

Treatment 

In addition to monitoring function and cognitive decline, ongoing regular management of general health and other medical conditions is essential to the care of the patient with AD. Management goals and interventions need to be appropriate to the patient's (if capable) and family's preferences and modified as the disease progresses. When prescribing medications (whether for AD, associated behaviors, or other comorbid conditions), it is important to assess the ability of the patient and family member or caregiver to adhere to the regimen. Medications should be reviewed with attention to discontinuing nonessential medication, simplifying the dosing schedule, and using aids (e.g., pillboxes).  

Appropriate treatment of comorbid medical conditions is crucial and may require extra vigilance and adjustment depending on where the AD patient is in the course of the illness. The degree of cognitive impairment impacts the ability to manage other chronic and acute medical conditions, and the appropriate management of these other conditions can impact both cognition and function in AD. Whenever a new treatment or intervention is considered or a change in the current treatment is anticipated, the health-care provider must assess the patient's and the caregiver's ability to understand and participate in the decision-making process.11  

Schedule a meeting with every patient and his or her family about the use of FDA-approved medications for the treatment of cognitive decline. The currently available cholinesterase inhibitors (i.e., donepezil, galantamine, rivastigmine) all work by blocking acetylcholinesterase. These medications have similar efficacy and side effects. Patients and family members must be given realistic expectations about the medications, which are aimed at slowing—not reversing—cognitive decline.  

Reports from clinical trials and meta-analyses of individual agents and the class of acetylcholinesterase inhibitors demonstrate a small, statistically significant benefit in cognition, activities of daily living, and behavior over a period of six to 18 months.12-15 GI side effects, primarily nausea or diarrhea, occur in 10%-15% of patients and may require discontinuation of the treatment. Rivastigmine is available in a patch form, which makes it more tolerable. Patients with bradycardia or bradyarrhythmias have an increased risk for syncope or dizziness with cholinesterase inhibitors.12 Treatment with one of these agents should be started on diagnosis or after six months' duration of AD symptoms. Evaluation for adverse drug reaction should occur after two to four weeks of treatment. Reassess effectiveness every six months.  

Memantine, an N-methyl D-aspartate receptor antagonist widely used in Europe, is currently approved for use in the United States for moderate AD. Memantine has also been shown to have a small effect on cognition, function, and behavior.16 Use this medication either alone or in conjunction with an acetylcholinesterase agent.  

At this time there is insufficient evidence to support the recommendation of other pharmacologic treatments for patients with AD. Studies of antioxidant therapy with vitamin E,17,18 ginkgo biloba,19 estrogen,20,21 and nonsteroidal anti-inflammatory agents22 have failed to demonstrate any clear benefit in preventing or postponing cognitive decline or affecting function or behavior. 

Behavioral symptoms and mood disorders are common in people with AD as well as their caregivers, affecting up to 90% of patients at some time during the illness.23 These include a broad spectrum of symptoms (e.g., apathy, wandering, agitation, verbal and physical aggression, and psychosis) that can vary from intermittent and mildly annoying to life-threatening. Behavioral symptoms in AD patients are among the most difficult aspects of care for patients, caregivers, and health-care providers. There is agreement that except in emergency situations, nonpharmacologic strategies are the preferred treatment approach for behavioral problems.24,25 This should include such approaches as environmental modification, task simplification, appropriate activities, and physical exercise. Consider psychotropic medication only when nonpharmacologic approaches have been exhausted and have failed to reduce agitation or improve behavioral symptoms. The use of psychotropic medications is controversial, and no agents are currently approved by the FDA for use in people with AD or other dementias. If used, medication should be targeted to a specific behavior, for narrowly specified and predetermined goals, with close monitoring for side effects and drug interactions.26,27 Start with a low dose, and increase slowly until the behavior improves or adverse effects emerge.3 

Education and support 

Education and support services for AD patients and their families are critical for effective long-term management of this progressive disease. Medical care must be integrated with education that connects patients and caregivers to support organizations. Patients and caregivers should be provided with linguistically and culturally appropriate educational materials and referrals to community resources, including support groups, legal counseling, financial resources, respite care and counseling, and consultation on care needs and options.  

Discuss the diagnosis, progression, treatment choices, and goals of AD care in a manner that is consistent with the patient's and family's values, preferences, culture, education, and ability. This discussion should occur at the time of initial diagnosis and recur periodically throughout the course of the disease. If feasible, encourage patients to complete an advance directive with identification of surrogates for making medical and legal decisions along with statements of their care preferences.  

Caregiver assessment, education, and community referral have been shown to lead to improved well-being and enhanced quality of life for the caregiver as well as the recipient.28,29 This counseling is often beyond the scope and time of a routine office visit and may require an additional appointment. At a minimum, providers should be familiar with agencies and services in their community that can provide assistance and routinely and repeatedly refer families and caregivers. 

Legal considerations 

Since cognitive decline over time will deprive the patient with AD of the ability to think clearly, major legal and financial decisions should be addressed early in the course of the disease, while the patient is still capable. Health-care providers occupy a unique position of trust and influence that provides an ideal opportunity to discuss the importance of basic legal and financial planning.  

A capacity evaluation may be required before a patient's chosen surrogate or substitute decision-maker can be authorized to act on his or her behalf. Utilize a structured approach to the assessment of capacity with attention to the relevant criteria for the kind of decisions being required of the patient. Depending on the state, a capacity declaration is usually required when one or more clinicians consider conservatorship of a patient with AD.  

AD patients are at increased risk for abuse and neglect.30 Because of their cognitive and functional decline, it is particularly challenging to obtain information about potential abuse from these patients. Providers need to actively monitor for evidence and report all suspicions of abuse to the proper authorities. Abuse can take many forms, including physical, sexual, and financial. Abuse may also involve neglect, isolation, abandonment, or abduction. Monitoring requires that the provider be alert to both the patient's and the caregiver's circumstances. In addition, be aware that the patient's behavior may be a reaction to a disturbing or dangerous situation in his or her environment.31  

The cognitive, visuospatial, and other impairments associated with AD increase the risks associated with driving. In some states, the diagnosis of dementia in a licensed driver requires automatic reporting. Patients with moderate or severe AD should not drive.32 In patients with mild or early disease, careful consideration of the ability to safely operate a motor vehicle is required.22 

SPECIAL CONSIDERATIONS 

Early-stage AD 

Improved recognition of signs of cognitive decline has led to earlier diagnosis of AD. This is resulting in a growing population of early-stage individuals who are able to benefit from active involvement, education, and support interventions. Patients in the early stages of AD have unique concerns that need to be recognized and addressed. These individuals should be involved in planning their own care. Discussions about the implications of the diagnosis with respect to work and family may require more frequent medical visits and/or referral to community resources. Clinicians need to be able to provide patients in early-stage AD with recommendations that promote continued functioning, assist with independence, and maintain cognitive health (including physical exercise, stimulation, and social support). Support groups specifically for individuals with early-stage AD and their caregivers are being developed in many communities to address the special concerns and needs of this population. 

End-of-life care 

The course of AD is one of slow, gradual decline. As the dementia worsens and the ability to understand treatment options and participate in decision making declines, care should shift to a focus on relief of discomfort. The advisability of routine screening tests, hospitalization, and invasive procedures should be made based on a previously discussed care plan, patient wishes, and severity of the dementia. As the end of the patient's life nears, emphasize options that maximize comfort and avoid futile treatments that may not provide relief and could prolong the dying process. Generally, tube feeding is not recommended for patients with severe dementia.33 Consider referral to hospice sooner rather than later to provide the patient and family optimal support.  

A diagnosis of AD is often the beginning of a long period of decline in cognition and function that is frequently accompanied by behavioral changes. These changes can be challenging for everyone, including health-care providers. Evidence-based recommendations for ongoing assessment, treatment, education, support, and legal considerations enable clinicians to better meet the needs of patients and assist families and caregivers over the course of the disease.

Dr. Segal-Gidan is director of the Rancho/University of Southern California Alzheimer's Disease Research Center in Los Angeles. She has no relationships to disclose relating to the content of this article. 

References 

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2. Landefield CS, Callahan CM, Woolard N. General internal medicine and geriatrics: building a foundation to improve the training of general internists in the care of older adults. Ann Intern Med. 2003;139:609-614. 

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21. Shumaker SA, Legault C, Rapp SR, et al. Estrogen plus progestin and the incidence of dementia and mild cognitive impairment in postmenopausal women: the Women's Health Initiative Memory Study: a randomized controlled trial. JAMA. 2003;289:2651-2662. Available at jama.ama-assn.org/cgi/content/full/289/20/2651. 

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23. De Deyn PP, Katz IR, Brodaty H, at al. Management of agitation, aggression, and psychosis associated with dementia: a pooled analysis including three randomized, placebo-controlled double-blind trials in nursing home residents treated with risperidone. Clin Neurol Neurosurg. 2005;107:497-508. 

24. Ayalon L, Gum AM, Feliciano L, Areán PA. Effectiveness of nonpharmacological interventions for the management of neuropsychiatric symptoms in patients with dementia: a systematic review. Arch Intern Med. 2006;166:2182-2188. Available at archinte.ama-assn.org/cgi/content/full/166/20/2182. 

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28. Feil DG, MacLean C, Sultzer D. Quality indicators for the care of dementia in vulnerable elders. J Am Geriatr Soc. 2007;55 Suppl 2:S293-301. 

29. Logsdon RG, McCurry SM, Teri L. Evidence-based psychological treatments for disruptive behaviors in individuals with dementia. Psychol Aging. 2007;22:28-36. 

30. Dyer CB, Pavlik VN, Murphy KP, Hyman DJ. The high prevalence of depression and dementia in elder abuse or neglect. J Am Geriatr Soc. 2000;48:205-208. 

31. Warshaw G, Gwyther L, Phillip L, Koff T. Alzheimer's Disease: An Overview of Primary Care. Tucson, Ariz.: University of Arizona Health Sciences Center Press; 1995. 

32. Dubinsky RM, Stein AC, Lyons K. Practice parameter: risk of driving and Alzheimer's disease (an evidence-based review): report of the quality standards subcommittee of the American Academy of Neurology. Neurology. 2000;54:2205-2211. Available at www.neurology.org/cgi/content/full/54/12/2205. 

33. Volicer L. Medical issues in late-stage dementia. Alzheimers Care Q. 2005;6:29-34. 

By Freddi Segal-Gidan, PA, PhD

How key circuits in the brain control movement

2010-07-09T08:46:00.001-07:00

A new study that has identified how key circuits in the brain control movement could treat movement related disorders, such as Parkinson’s disease. Scientists Anatol Kreitzer, PhD and Karl Deisseroth, MD PhD at the Gladstone Institute of Neurological Disease (GIND) and Stanford University used genetic methods to allow mice to produce a light-sensitive protein in very select group of cells in the brain.

Researchers found that the mouse with the fibre optics implanted in the brain moved normally with the laser turned off and froze when the laser was turned on. With the laser off, and the mouse’s movement was restored. “It’s not something we can do for just a second,” Kreitzer said. “We can do this for as long as the laser is on.” “We generated mice that lacked dopamine, and these mice showed many of the same symptoms found in humans with Parkinson’s disease. But when we activated the ‘go’ pathway in these mice, they began to move around normally again. We restored all of their motor deficits with this treatment, even though the mice still lacked dopamine,” he added.

The research could be important for treating Parkinson’s and also other disorders involving these circuits, such as Huntington’s disease, Tourette’s syndrome, obsessive-compulsive disorder, and addiction.

By http://www.thehindu.com/

The research is published in the journal Nature.

Alzheimer's on the Rise

2010-07-02T10:44:00.002-07:00

Among people age 65 and older, one in 10 has been diagnosed with Alzheimer's disease. That number jumps to nearly one in two for those who are 85 and older.

According to the Florida Department of Health, the average number of diagnosed cases of Alzheimer's disease, which is a progressive and fatal neurological disorder, has been increasing over the years in Hernando County.

Dr. Hany Abskhroun, who is board certified in internal and geriatric medicine with St. Thomas Medical Clinic, said families and caregivers shoulder most of the Alzheimer's burden. Depression and expenses are two major factors involved in the care and treatment of Alzheimer's patients, he said.

He estimates about $100 billion annually comes from the government to support Alzheimer's disease patients. Insurance only partially covers the treatment needed, whereas the patient's family carries the rest of the financial burden, he said.

According to a report on the average number of deaths in Hernando County related to Alzheimer's, bteween 2004 and 2006, the county averaged 63 deaths per year. That number has increased to an average of nearly 74 deaths per year since then.

According to the Florida Department of Elder Affairs, 7,355 people in Hernando County have Alzheimer's disease.

Gloria J. T. Smith, president and CEO of the Florida Gulf Coast Chapter of the Alzheimer's Association, said Alzheimer's disease is one of the top-10 leading causes of death in the United States.

The federal Centers for Disease Control and Prevention note Alzheimer's has surpassed diabetes as the sixth leading cause of death among American adults. Alzheimer's mortality rates are on the rise, unlike heart disease and cancer death rates, which are continuing to decline.

The National Institute on Aging describes Alzheimer's as the most common form of dementia among older adults. Dementia refers to a decline in cognitive function that interferes with daily life and activities.

Alzheimer's starts in a region of the brain that affects recent memory and gradually spreads to other parts of the brain.

Treatment can slow the progression of Alzheimer's and help manage its symptoms in some people. Scientific research on Alzheimer's has been progressing, but a cure for Alzheimer's has not yet been found.

Damage to the brain can begin as early as 10 to 20 years before any obvious signs of forgetfulness appear. As nerve cells die throughout the brain, affected regions begin to shrink. By the final stage of Alzheimer's, damage is widespread, and brain tissue has shrunk significantly.

Abskhroun says the risk factors for Alzheimer's includes age, family history and head injury. Recent research suggests genetics may play a role in the development of Alheimer's.

Individuals with Alzheimer's make up less than 13 percent of the Medicare population, yet they account for 34 percent of Medicare spending.

"In 2011, the first baby boomers will reach their 65th birthdays," Smith said. "By 2029, all baby boomers will be at least 65 years old. This group, totaling an estimated 70 million people aged 65 and older, will have a significant impact on the U.S. health care system."

The Alzheimer's Association and the National Institute on Aging estimate 5 million Americans suffer from Alzheimer's.

This number has doubled since 1980 and is expected to be as high as 13.4 million by 2050. The total cost of care for Americans age 65 and older with Alzheimer's disease will increase, from $172 billion to $1.08 trillion per year in that time frame.

These dollar amounts represent the direct costs of care to all payers, including Medicare, Medicaid, and out-of-pocket costs to people with the conditions and their families, and costs to other payers such as private insurance, HMOs and other managed-care organizations, and uncompensated care, according to the Alzheimer's Association.

Abskhroun said the disease usually begins after age 60, and risk goes up with age.

If dementia is diagnosed under the age 65, he says, brain images should be considered to rule out other causes such as tumors and stroke. He also recommended individuals have blood work done to check thyroid-stimulating hormone, Vitamin B12 and D levels.

"It is important to note, however, that Alzheimer's disease is not a normal part of aging," Abskhroun said. "Other diseases can mimic dementia or Alzheimer's in early stages during initial observation, for example, delirium."

He describes the difference in delirium as acute onset and could fluctuate over several hours or even days. A change in environment for an older person can trigger delirium and is most commonly misdiagnosed as dementia.

"We, as physicians, need to become better at diagnosing the correct condition and spend more time with our patients to do so," Abskhroun said.

A third of older individuals seeking medical help in an emergency room are experiencing delirium, he said.

From that group of individuals, those age 70 or older, half of them are delirious upon admission, he added.

Alzheimer's Research

Dr. Mildred Farmer, board certified in internal medicine, fellowship trained in geriatrics, and the medical director for Meridien Research in Hernando County, says the focus of Alzheimer's disease research has been memory and behavioral improvement, as well as disease modification.

"All approved treatments thus far only improve memory, they do not change the course of the disease," Farmer said.

"New drug development is under way that hopes to slow the course of the disease by affecting the levels of amyloid accumulation in the brain or by preventing ongoing cell death."

Beta-amyloid is a fibrous protein molecule that can form clumps called plaque that have been found in the brains of Alzheimer's sufferers.

Farmer describes new diagnostic evaluations that are being studied to see if physicians can be more accurate in the diagnostic process as the diagnosis is still based on a clinical impression and not definitive blood, spinal fluid or imaging techniques.

That could soon change, as the International Conference on Alzheimer's disease will be held July 10-15 in Honolulu. More information will become available regarding new treatments that are being evaluated in research clinics, according to Farmer.

Meridien Research has ongoing research in Alzheimer's disease for a number of studies and will evaluate those concerned about their memory as well as those with diagnosed Alzheimer's disease.

To contact Meridien Research for information on what clinical trials are available, call 352-59-STUDY.

They offer complimentary memory and diabetes screenings that are added to Meridien's database. Find out more about Meridien Research at http://www.newstudyinfo.com/.

Florida Gulf Coast Chapter for the Alzheimer's Association provides a support system in Hernando County for those affected by Alzheimer's disease or a related disorder and their caregivers through patient and family services, education, advocacy and research.

For more information or for those in need of assistance, call the local office at 352-688-4537.

For more information

Alzheimer's Association, Florida Gulf Coast Chapter, Hernando County Support Groups. Support groups are for family members, caregivers, and others interested in learning more about Alzheimer's disease. Meetings are open to everyone and are free of charge. Support group facilitators have received training as required by Chapter and National Alzheimer's Association standards. For program information and to verify meeting dates, times and locations, please use the telephone contacts listed below. For other questions or to arrange free respite care so you can attend a group, call the association's Hernando office at 352-688-4537 or 1-800-772-8672.

Anna Lamy is the Health and Fitness Content Coordinator for Hernando Today. She can be contacted at alamy@hernandotoday.com

Tips on Alzheimer's Wandering Why it Happens and What to do

2010-06-15T16:10:00.002-07:00

Wandering is among the most unsettling and even terrifying behaviors people with Alzheimer's display. Often poorly clad, they leave safety at random hours and strike out into unknown territory, for no apparent reason. But this seemingly aimless activity usually does have a reason. It's often an attempt to communicate after language skills have been lost.

Alzheimer's caregivers ask if I am worried that my mother might wander away from me and get lost. Wandering is one of the more widely known behaviors of people suffering from Alzheimer’s disease.

I am not worried about my mother wandering at this time because she can't walk very far. I can say I would be very worried at this stage if she could walk.

I can't remember how many people emailed me and were lamenting that there loved one wanted to "go home." When you hear this you really need to start paying attention. The patient could make a break for it at any time.

"Going home" is an elusive term. It could mean back home to where they last lived, or home to the place were they were born. In many of the stories about wandering the patient takes off to a place they once lived that brings back fond memories.

It isn't easy to find a person suffering from Alzheimer's once they "take off." They don't wander logically. Sometimes it is like looking for a needle in a haystack.

One of the most fascinating stories of wandering I read was about a woman that wandered way from her home in Frederick, Maryland at night on foot.

To find the missing elderly woman the Frederick police had to use 50 to 60 police and civilians, and four civilian K-9 search and rescue groups.

The woman was missing for more then 8 hours in temperatures that dropped as low as 20 degrees. She was finally located "huddled up" on a property adjacent to her home. Go figure.

Another man wandered from a Denver, Colorado suburb to San Diego,California. He was lost for three days. How did he do it? He walked down to the corner and took public transportation to the Greyhound bus station. He then took a series of buses to San Diego.

Alzheimer's: Understand and control wandering

Find out why people with Alzheimer's wander and what you can do to keep them safe.

Alzheimer's disease can erase a person's memory of once-familiar surroundings and make adaptation to new surroundings extremely difficult. As a result, people with Alzheimer's sometimes wander away from their homes or care centers and turn up — frightened and disoriented — far from where they started, long after they disappeared.

Wandering is among the most unsettling and even terrifying behaviors people with Alzheimer's display. Often poorly clad, they leave safety at random hours and strike out into unknown territory, for no apparent reason. But this seemingly aimless activity usually does have a reason. It's often an attempt to communicate after language skills have been lost.

Wandering may communicate something as simple as "I'm feeling lost," or "I feel as though I've lost something." It can also signal such basic needs as hunger and thirst, the need to void, or the need for exercise or rest.

Other causes of wandering:

Too much stimulation, such as multiple conversations in the background or even the noise of pots and pans in the kitchen, can trigger wandering. Because brain processes slow down as a result of Alzheimer's disease, the person may become overwhelmed by all the sounds and start pacing or trying to get away.

Wandering also may be related to:

Medication side effects
Memory loss and disorientation
Attempts to express emotions, such as fear, isolation, loneliness or loss
Curiosity
Restlessness or boredom
Stimuli that trigger memories or routines, such as the sight of coats and boots next to a door, a signal that it's time to go outdoors
Being in a new situation or environment
Tips to prevent wandering

Although it may be impossible to completely prevent wandering, changes in the environment can be helpful. For example, a woman who was a busy homemaker throughout her life may be less likely to become bored and wander if a basket of towels is available for her to fold.

People with Alzheimer's often forget where they are. They may have difficulty finding the bathroom, bedroom or kitchen. Some people need to explore their immediate environment periodically to reorient themselves.

Posting descriptive photographs on the doors to various rooms, including a photo of the individual on the door to his or her own room, can help with navigation inside the home. Offering a snack, a glass of water or use of the bathroom may help identify a need being expressed by wandering. Sometimes the wandering person is looking for family members or something familiar. In such cases, providing a family photo album and sharing reminiscences may help.

Watch for patterns

If wandering occurs at the same time every day, it may be linked to a lifelong routine. For instance, a woman who tries to leave the nursing home every day at 5 p.m. may believe she's going home from work.

This belief could be reinforced if she sees nursing home personnel leaving at that time. A planned activity at that hour, or arranging for staff to exit through a different door at the end of their shift, could provide a distraction and prevent the wandering behavior.

Make a safer environment

If wandering isn't associated with distress or a physical need, you may want to focus simply on providing a safe place for walking or exploration.

Living spaces will be safer after you remove throw rugs, electrical cords, and other potential trip-and-fall hazards. Rearranging furniture to clear space can help. Childproof doorknobs or latches mounted high on doors help prevent wandering outside. Sometimes a stop sign on an exit door is enough.

Rooms that are off-limits pose a different problem. Camouflaging a door with paint or wallpaper to match the surrounding wall may short-circuit a compulsion to wander into such rooms. Night lights and gates at stairwells can be used to protect night wanderers.

Help ensure a safe return

The Alzheimer's Association's Safe Return program is designed to help identify people who wander and return them to their caregiver. Caregivers who pay a registration fee receive:

An identification bracelet
Name labels for clothing
Identification cards for wallet or purse
Registration in a national database with emergency contact information
A 24-hour toll-free number to report someone who is lost

You can register someone by filling out a form online at the Alzheimer's Association's Web page or by calling (888) 572-8566.

Source Mayo Clinic

By Bob DeMarco

Alzheimer's Reading Room

HOME TREATMENTS / REMEDIES for Multi Infarct Vascular Dementia

2010-06-11T13:37:00.002-07:00

About six months ago I gave up on the anti-oxidant approach as a treatment for her multi infarct dementia and begun treatment of the vascular dementia from a different angle.

However, the value of vitamin E and vitamin C as a preventative of vascular disease, including vascular dementia, is supported by research - but with the vascular dementia, you need to catch it in the early stages.

With her doctor's approval, we included into mum's dementia treatment protocol, 10mg of vinpocetine three times daily to maintain a lower blood pressure in the brain. Thereby reducing the risk of further vascular accidents, thereby slowing or stopping the vascular dementia - in theory. The drug also has several other advantages, including some equivalence to Vitamin E in antioxidant effect, known to improve eye sight a bit, hearing a bit, concentration a bit, can help with ringing in the ears... in short, vinpocetine seems good for treating vascular dementia. We also included fish oil into her multi-infarct vascular dementia treatment; begun using high dose fish oil three times a day to help maintain/improve neuron function (it also helps to relieve pain etc).

[ If mum's vascular dementia had been of the bleeder type, I would have tried out the vinpocetine under medical supervision, but the fish oil can aggravate bleeding conditions, so the fish oil would not have been included. I would have also checked with her doctor about the suitability of using certain herbal hemorrhoid tablet preparations designed to cure hemorrhoids and relieve pain, as the problem with having hemorrhoids is that the veins are weakened and the hemorrhoid preparations sometimes are made to strengthen the walls of blood vessels. ]

After making the adjustments to mum's multi-infarct vascular dementia treatment regime, clotting type, we begun seeing many improvements. She can now follow a person with her eyes and head, like our grand daughter, Hannah, on a Scooter. Mum is now able to sit upright in a wheel chair unsupported, is much more awake and is much more alert to things around her. Even the wheelchair taxi driver, who knows nothing about the vascular dementia treatment being used, has commented about how much better she seems to be doing with each trip. The vascular dementia, in essence, appeared to have been slowed dramatically, perhaps even stopped, allowing the brain time to reogranise it's neural pathways. We were looking at increasing her fish oil intake in the hope it will help alleviate the vascular dementia even further, but according to the American Heart Association, more than three grams of fish oil a day can cause excessive bleeding, so that idea went out the window. Even so, with multi-infarct vascular dementia in the very advanced stage, there is still room for hope when nearly everyone else has given up.

Well, mum came to visit on Christmas day, 2004 - 4 years after entering the dementia unit - courtesy of a wheel chair bus we arrranged. She had improved much more again. She tried to use her fingers to unwrap a present, she tried talking - for the most part unintelligible - and she tried to stand. She was very much alert and awake the whole 90 minutes. These improvements are just mind grabbing and I recall becoming teary thinking maybe we had finally stopped the onslaught of the vascular dementia.

Well, about five or six more months has now gone by, mum is still responsive to us, looks at me when I talk and smiles when I tell she is looking good. Her body, though, may be getting a bit stiffer, but that might be arthritis and cold weather, or, regrettably, the dementia.

http://www.alzheimersdementia.cdadc.com/vasculardementia.html

Advocate! Because Some Can't

2010-06-07T08:44:00.002-07:00

By Suzette Armijo

Have you ever wondered what the Alzheimer's Association does besides events such as the Memory Walk and having great educational material? The Alzheimer's Association, along with volunteers just like you and me, is advocating for all those who can't. As an advocate, we help legislators understand that as the growing Alzheimer population continues to strain an already fragile healthcare system, the need for adequate care, services and critical federal research funding necessary to prevent, treat and cure Alzheimer's disease is increasingly urgent.

You can become an advocate today simply by contacting your legislators from the comfort of your own home. It is much easier than you think. Through our Alzheimer's Association Chapter website, www.alz.org/dsw, we can personalize and send letters directly to our legislators.

As an advocate, you will:

= Generate action from our elected officials by making calls and writing letters or sending e-mails.

= Stay on top of policy and legislative issues through alerts and updates.

= Help elevate Alzheimer's from a disease to a cause.

To become an Advocate, click here.

Fighting Alzheimer's with a touch of beauty

2010-06-04T09:03:00.002-07:00

In her heyday, Rita Hayworth was known as the “Love Goddess”: so explosive was her appeal that her image was placed on the first nuclear bomb to be tested on Bikini Atoll after the second world war. As befits one of the world’s most glamorous women, she danced her way through 61 movies and five husbands. She was a pin-up for American servicemen and is listed as one of the American Film Institute’s greatest stars of all time.

But if Hayworth’s early life was sprinkled with stardust, her later life was tinged with tragedy. In her fifties, with a well established drink problem, she began to suffer mood swings and memory loss.
“The first signs were fear and extreme mood changes, paranoia — calling the police because she heard a burglar — and confusion. As a daughter I felt helpless,” says Princess Yasmin Aga Khan, Hayworth’s daughter by her third husband.

Nobody knew what the real problem was until Hayworth was diagnosed with Alzheimer’s in 1981, at just 63 years old. “It was extremely painful but I had to deal with it,” says Khan, who moved her mother into an adjoining apartment in New York and cared for her for the next six years until she died.

Hayworth’s behaviour could be nightmarishly difficult. She suffered from the anxiety, aggression and agitation common to Alzheimer’s, but as the disease progressed she found something that soothed her mood and gave her a focus — painting.

As her mind disintegrated, she worked away at an easel in her apartment, producing beautiful, detailed likenesses of flowers. “So many people give up with this disease,” says the princess, who is now president of Alzheimer’s Disease International, the umbrella organisation for Alzheimer’s associations around the world, “but it brought her peace of mind and helped her to relax.”

Could Hayworth’s experience help us to understand how to support and treat people with Alzheimer’s? John Zeisel, the founder of a pioneering programme caring for people with Alzheimer’s in the United States — endorsed by Khan — and a visiting lecturer at Salford University, believes that it could.

“What the scientific research tells us is that Alzheimer’s attacks the part of the brain that handles what we call logic — the executive function that copes with handling complex situations. Taking a photograph, for instance: you have to find the camera, slot in the memory chip, work out where the shutter button is and so on . . .

“But what’s not damaged is your appreciation of a beautiful picture. The part of the brain that deals with emotions is shaken up by Alzheimer’s but it’s not damaged in the same way. In fact, emotional response seems to be heightened, not lessened.”

In other words, people who appear to be lost to the world can still be reached through art, literature and music — and love. At Hearthstone, a group of seven homes looking after some 220 people with Alzheimer’s that Zeisel had helped to found in Massachusetts, residents are encouraged to paint and are taken on regular outings to galleries. They have reading circles and a film club.

“The development of new drugs to treat Alzheimer’s is helping people live a little bit longer,” says Zeisel. “What we’re asking ourselves is, how do we make that life worth living?”

Life expectancy remained low for centuries — in 1900 it was still only 47 — but advances in medical science and public health have added another 30 years to our lives. A British man can now expect to live until 77 and a woman until 81.

That increase in lifespan has brought with it a tidal wave of dementia, for which there is no cure. There are 700,000 people living with dementia in the UK, some 417,000 of them with Alzheimer’s. By 2015 that total is predicted to reach 1m and by 2050 it will be 1.7m.

“Everything has happened so fast we don’t know what’s hit us,” says Zeisel. “One of the reasons everybody’s so afraid of Alzheimer’s is that there are so many unknowns. When someone is diagnosed, we grieve for their lost future. But maybe everything isn’t lost: we have to get past the fear and grief to see what remains."

I’m Still Here, Zeisel’s book about the development of the Hearthstone programme, is to be published in paperback by Piatkus next month. On March 15 he is hosting an arts and dementia day at London’s October gallery, an event that is already booked out.

One of the first things the Hearthstone team looks for is an activity that elicits a response from a new resident. It might be an old hobby — gardening, perhaps — or something new. “Families come in and say, ‘My father doesn’t dance’, and I say, ‘Well, we’ll see — maybe he’s never been surrounded by women and nice music before’.”

They then build a routine around the activity. George, a former teacher, arrived at Hearthstone anxious and aggressive and, on the assumption that he would like books, was taken to the library. He now runs a residents’ book circle at 10 o’clock each morning.

“It’s a reason to get up and get dressed,” says Zeisel. “If he’s upset or confused, the staff will say, ‘You’ve got to get dressed, the book group needs you’. He has a meaningful role. He passes books around, he and the others read aloud. Often people with dementia give up on reading because the type is too small. It seems confusing but it’s easy to fix — our books have large type.”

This kind of meaningful role, plus a simple routine, is key to helping people with dementia cope with life. “It’s not just about activities,” says Zeisel. “If it’s ‘bingo at 10, muffins at 11’ one day and ‘reading at 10, gardening at 11’ tomorrow, that doesn’t work. It’s confusing. If we go to an art gallery, we go every Tuesday at 11. Someone might say they don’t want to go but after a month they’ll wake up and hear it’s Tuesday and think, ‘Okay, it’s gallery day’.”

One of the things we need to get away from is the constant testing of people with dementia, he says. Bombarding them with questions compounds confusion with a sense of failure. Rather than say, “Mum, do you know who I am?” it is better to walk in, take her by the hand and say, “I’m your daughter and I love you.” And smile. You’ll reach the bit of the brain hard-wired to respond. If you are looking at a painting, don’t test her on whether she can remember who it is by: instead, open a conversation about the shapes and colours.

People with Alzheimer’s need to stay useful. They might not be able to find the dinner plates, but if you get the plates out of the cupboard they can put them on the table. This is not a cure, nor even a replacement for drugs, although Zeisel insists that the more effective the “person-centred” care, the lower the need for the antipsychotic drugs used to treat Alzheimer’s.

In essence, it is about quality of life for the people with Alzheimer’s and their families. You don’t need a team of highly trained art therapists on hand to make a difference. If you are one of the thousands of people stuck at home caring for someone with Alzheimer’s — saving the government an estimated £6 billion a year in the process — here’s what to do.

“Start an Alzheimer’s community,” says Zeisel. “There will be a cafe near you that’s quiet at 10 o’clock on a Tuesday morning run by some nice person who will smile at your mother. Find other people in your situation and invite them along.

“Go to a museum, same date, same time. Create a routine so the person you’re looking after gets used to it and expects it.

“Start your own film club. Rent a bunch of films you think your mother might like. See what interests her. It might be she can’t watch a whole movie but loves 10 minutes of Singin’ in the Rain. Play it when she’s agitated and remember: everybody is reachable, it’s just finding the way to do it.”

By Margarette Driscoll, Times Online

Changing the Trajectory of Alzheimer's Disease - News Release

2010-05-19T10:24:00.000-07:00

ALZHEIMER’S DISEASE TO COST UNITED STATES

$20 TRILLION OVER NEXT 40 YEARS

Washington, D.C., May 19, 2010 – A new report from the Alzheimer’s Association, “Changing the Trajectory of Alzheimer’s Disease: A National Imperative” shows that in the absence of disease-modifying treatments, the cumulative costs of care for people with Alzheimer’s from 2010 to 2050 will exceed $20 trillion, in today’s dollars. The report, which examines the current trajectory of Alzheimer’s based on a model developed by the Lewin Group for the Alzheimer’s Association, also shows that the number of Americans age 65 and older who have this condition will increase from the 5.1 million today to 13.5 million by mid-century.

“We know that Alzheimer’s disease is not just ‘a little memory loss’- it is a national crisis that grows worse by the day,” said Harry Johns, President and CEO of the Alzheimer’s Association. “Alzheimer’s not only poses a significant threat to millions of families, but also drives tremendous costs for government programs like Medicare and Medicaid.”

Total costs of care for individuals with Alzheimer’s disease by all payers will soar from $172 billion in 2010 to more than $1 trillion in 2050, with Medicare costs increasing more than 600 percent, from $88 billion today to $627 billion in 2050. During the same time period, Medicaid costs will soar 400 percent, from $34 billion to $178 billion. One factor driving the exploding costs by 2050 is that nearly half (48 percent) of the projected 13.5 million people with Alzheimer’s will be in the severe stage of the disease – when more expensive, intensive around-the-clock care is often necessary.

Changing the Current Trajectory

The new report is not all bad news, however, as it shows that Medicare and Medicaid can achieve dramatic savings – and lives could be significantly improved – with even incremental treatment improvements. Based on the same Lewin Group model, the report explores two alternate scenarios: one in which a disease-modifying treatment could delay the onset of Alzheimer’s by five years, and another in which a hypothetical treatment could slow the progression of this condition.

“Today, there are no treatments that can prevent, delay, slow or stop the progression of Alzheimer’s disease,” said Johns. “While the ultimate goal is a treatment that can completely prevent or cure Alzheimer’s, we can now see that even modest improvements can have a huge impact.”

Impact of a Hypothetical Treatment Delaying Onset: A treatment breakthrough that delays the onset

of Alzheimer’s by five years – similar, perhaps, to the effect of anti-cholesterol drugs on preventing heart disease – would result in an immediate and long-lasting reduction in the number of Americans with this condition and the cost of their care. A breakthrough that delays onset by five years and begins to show its effect in 2015 would decrease the total number of Americans age 65 and older with Alzheimer’s from 5.6 million to 4 million in 2020.

-more-

Assuming the breakthrough occurred in 2015:

• The number of people age 65 and older with Alzheimer’s would be reduced by 5.8 million in 2050 – 43% of the 13.5 million Americans who would have been expected to have the condition in that year would be free of the conditions.

• In 2050, the number of people in the severe stage would also be much smaller with the treatment breakthrough – 3.5 million instead of the expected 6.5 million.

• Annual Medicare savings compared to current trends would be $33 billion in 2020 and climb to $283 billion by mid-century, while annual Medicaid savings would increase from $9 billion in 2020 to $79 billion in 2050.

Impact of Hypothetical Treatment Slowing Progression: A treatment breakthrough that slowed disease progression – much as we have managed to do with HIV/AIDS and several cancers – would result in far fewer people with Alzheimer’s disease in 2050 in the severe stage when care demands and costs are greatest. Assuming the breakthrough occurred in 2015:

• In 2020, the number of people age 65 and older with Alzheimer’s disease in the severe stage would drop from 2.4 million to 1.1 million. In 2050, the number of people in the severe stage would decline from an expected 6.5 million to 1.2 million.

• Annual Medicare savings compared to current trends would be $20 billion in 2020 and jump to $118 billion in 2050, while Medicaid savings would be $14 billion in 2020 and $62 billion in 2050.

Addressing the Chronic Underinvestment in Research

Ultimately solving the Alzheimer crisis will mean addressing the chronic underinvestment in research. This forecast of a rapidly aging population and dramatic rise in the number of Alzheimer cases in the coming years should catapult the government into action.

“Given the magnitude and the impact of this disease, the government’s response to this burgeoning crisis has been stunningly neglectful,” said Johns. “Alzheimer’s is an unfolding natural disaster. The federal government has sent a token response and has no plan. Immediate and substantial research investments are required to avoid an even more disastrous future for American families and already overwhelmed state and federal budgets,” continued Johns. “For the human effects and the country’s fiscal future, we must change the trajectory of the Alzheimer crisis.”

“The impact of Alzheimer’s disease - both in terms of lives affected and costs of care – is staggering. As government leaders contend with the best approaches to rein in Medicare and Medicaid costs, we know Alzheimer’s will place a massive strain on an already overburdened health care system,” said Robert J. Egge, Vice President of Public Policy for the Alzheimer’s Association. “This report highlights that while we strive for the ideal – a treatment that completely prevents or cures Alzheimer’s disease – even more modest, disease-modifying treatments would provide substantial benefits to families and contribute to the solvency of Medicare and Medicaid.”

The Association is working to enact critical legislation to address these issues. The National Alzheimer’s Project Act creates a National Alzheimer’s Project Office and an inter-agency Advisory Council responsible for developing a national plan to overcome the Alzheimer crisis. Drawing on the expertise residing in various government agencies as well as individuals living with the disease, caregivers, providers and other stakeholders, this office would provide strategic planning and coordination for the fight against Alzheimer’s across the federal government as a whole, touching on a broad array of issues from research to care to support.

After the embargo lifts, the full text of the Alzheimer’s Association’s “Changing the Trajectory of Alzheimer’s Disease: A National Imperative” can be viewed at www.alz.org/trajectory.

By Alzheimer’s Association

The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s.

RELEASED MAY 19 AT 10AM ET.

CONTACT: Toni Williams, 202.638.8666; toni.williams@alz.org

Research Explores the Connection between Normal Pressure Hydrocephalus and Alzheimer's Disease

2010-05-04T12:39:00.002-07:00

It is estimated that as many as 250,000 people in the U.S. who are experiencing symptoms of Alzheimer's disease and, may actually have related conditions such as NPH ....

Normal Pressure Hydrocephalus (NPH) is a neurological condition which typically affects adults ages 55 and older. This condition was first described in the 1960s as a triad of gait disturbance, dementia, and bladder incontinence.

The ventricles of the brain appear enlarged although the cerebrospinal fluid (CSF) pressure remains normal. Once properly diagnosed, the progression of NPH can be delayed through the surgical implantation of a shunt, a device that channels CSF away from the brain to another part of the body where it can be absorbed.
An estimated 5.3 million Americans have Alzheimer's disease (AD), 5.1 million of which are 65 and older, and 200,000 of which are under 65 with early-onset AD. About 60 to 80 percent of all cases of dementia are attributed to AD.

The proliferation of beta-amyloid plaque is considered a key factor in the development of AD. Beta-amyloid protein accumulates in the brains of patients with AD, activating immune cells that try unsuccessfully to remove it. That triggers the release of poisons that eventually kill nerve cells, leaving behind a trail of plaques and tangles - the remains of nerve cells and fibers, clogged up with beta-amyloid.

Research done at the University of Virginia Health Science Center in Charlottesville, Va., analyzed the clinical connection of NPH to AD. The results of this study, Elucidating the Etiology of Normal Pressure Hydrocephalus (NPH) and the Spectrum of Surgically Treatable Dementias, will be presented by Sebastian F. Koga, MD, 11:20-11:34 am, Tuesday, May 4, 2010, during the 78th Annual Meeting of the American Association of Neurological Surgeons in Philadelphia. Co-authors are David T. Bourne, MD, David E. Bruns, MD, and John A. Jane Sr., MD, PhD.

It is estimated that as many as 250,000 people in the U.S. who are experiencing symptoms of AD and dementia, may actually have related conditions such as NPH, and could benefit from CSF diversion surgery. "Because the symptoms are similar to AD, some patients with NPH are never properly diagnosed or treated, while others who are treated for NPH may suffer concomitantly from AD," stated Dr. Koga. New advances in neurodegenerative proteomics have led to the discovery of biomarkers in CSF which can be used to diagnose various forms of early dementia and perhaps to predict which patients will benefit from shunt implantation.

"Although there are certain differences in the clinical presentation of NPH and AD, our research suggests that these two forms of dementia are part of a wider spectrum of tau-protein abnormalities in the brain. This new perspective could change diagnostic criteria and redefine the surgical treatment options available to patients suffering from dementia," remarked Dr. Koga.

In an effort to mirror recent research advances in AD, this study evaluated CSF biomarkers and correlated these to cortical histopathology samples and neuropsychological outcomes. An ongoing prospective longitudinal study is being conducted at the University of Virginia to include NPH patients treated at this institution, with comprehensive testing performed before and after shunting.

In the first 50 consecutive patients, CSF profiling was performed for biomarkers beta-amyloid, T-tau, P-tau, APOÎµ4 genotyping, and cortical biopsy evaluations for neuritic plaques and tau tangles. These results were analyzed in relationship to clinical progress and neuropsychological testing. The following results were noted:
•Failure to improve after shunting was closely correlated to large numbers of neuritic plaques on biopsy and increased beta-amyloid in CSF.

•The high number of plaques and tangles in frontal lobe biopsies would indicate an advanced form of AD in a significant number of patients.

•Analysis of T-tau, P-tau and beta-amyloid shows that NPH progression mirrors the changes seen in patients with AD.

"Up to 35 percent of NPH patients suffer clinical declines similar to AD patients. The likelihood and pace of this decline can be predicted using currently available CSF biomarkers, which should help reduce the number of shunt re-operations in the future. Improved screening methods are required to refine diagnosis and predict the benefits of CSF diversion. This study further elucidated that NPH is a surgically treatable form of dementia in many cases, and must be considered in the spectrum of tau-proteinopathies. Further in-depth studies are indicated," concluded Dr. Koga.

Dr. Koga and his senior colleagues at the University of Virginia are working to establish a Neurodegenerative Proteomics Laboratory and a specialized NHP Clinic to optimize and expand the treatment options for patients suffering from tau-protein dementias.

Founded in 1931 as the Harvey Cushing Society, the American Association of Neurological Surgeons (AANS) is a scientific and educational association with more than 7,600 members worldwide. The AANS is dedicated to advancing the specialty of neurological surgery in order to provide the highest quality of neurosurgical care to the public. All active members of the AANS are certified by the American Board of Neurological Surgery, the Royal College of Physicians and Surgeons (Neurosurgery) of Canada or the Mexican Council of Neurological Surgery, AC. Neurological surgery is the medical specialty concerned with the prevention, diagnosis, treatment and rehabilitation of disorders that affect the entire nervous system, including the spinal column, spinal cord, brain and peripheral nerves.

Disclosure: the author reports no conflicts of interest.

http://www.aans.org/Library/Article.aspx?ArticleId=66409

Contact: Betsy van Die
Media Representatives: If you would like to cover the meeting or interview a neurosurgeon — either on-site or via telephone — please contact the AANS Communications Department at (847) 378-0517 or call the Annual Meeting Press Room beginning Monday, May 3 at (215) 418-2409.

By Bob DeMarco

Alzheimer's Reading Room

Alzheimer’s Memory Problems Originate with Protein Clumps Floating in the Brain, Not Amyloid Plaques

2010-04-30T08:53:00.001-07:00

Researchers at Mount Sinai School of Medicine have found that Alzheimer’s is not caused by amyloid plaques, as previously thought by many researchers......

Using a new mouse model of Alzheimer's disease, researchers at Mount Sinai School of Medicine have found that Alzheimer's pathology originates in Amyloid-Beta (Abeta) oligomers in the brain, rather than the amyloid plaques previously thought by many researchers to cause the disease.

The study, which was supported by the "Oligomer Research Consortium" of the Cure Alzheimer Fund and a MERIT Award from the Veterans Administration, appears in the journal Annals of Neurology.

"The buildup of amyloid plaques was described over 100 years ago and has received the bulk of the attention in Alzheimer's pathology," said lead author Sam Gandy, MD, PhD, Professor of Neurology and Psychiatry, and Associate Director of the Alzheimer's Disease Research Center, Mount Sinai School of Medicine. "But there has been a longstanding debate over whether plaques are toxic, protective, or inert."

Several research groups had previously proposed that rather than plaques, floating clumps of amyloid (called oligomers) are the key components that impede brain cell function in Alzheimer's patients. To study this, the Mount Sinai team developed a mouse that forms only these oligomers, and never any plaques, throughout their lives.

The researchers found that the mice that never develop plaques were just as impaired by the disease as mice with both plaques and oligomers. Moreover, when a gene that converted oligomers into plaques was added to the mice, the mice were no more impaired than they had been before.

"These findings may enable the development of neuroimaging agents and drugs that visualize or detoxify oligomers," said Dr. Gandy. "New neuroimaging agents that could monitor changes in Abeta oligomer presence would be a major advance. Innovative neuroimaging agents that will allow visualization of brain oligomer accumulation, in tandem with careful clinical observations, could lead to breakthroughs in managing, slowing, stopping or even preventing Alzheimer's.

"This is especially important in light of research reported in March showing that 70 weeks of infusion of the Abeta immunotherapeutic Bapineuzumab® cleared away 25 percent of the Abeta plaque, yet no clinical benefit was evident."

The Mount Sinai team included Michelle Ehrlich, MD, Professor of Pediatrics, Neurology, and Genetics and Genomic Sciences, and John Steele, a Mount Sinai graduate student, who performed the key analyses of the behavioral data. Dr. Charles Glabe, an oligomer expert and a member of the Cure Alzheimer Fund research consortium, is also a co-author of the paper. Dr Gandy is also a neurologist at the James J Peters Veterans Affairs Medical Center, an affiliate of Mount Sinai School of Medicine.

About The Mount Sinai Medical Center

The Mount Sinai Medical Center encompasses both The Mount Sinai Hospital and Mount Sinai School of Medicine. Established in 1968, Mount Sinai School of Medicine is one of few medical schools embedded in a hospital in the United States. It has more than 3,400 faculty in 32 departments and 15 institutes, and ranks among the top 20 medical schools both in National Institute of Health funding and by U.S. News & World Report. The school received the 2009 Spencer Foreman Award for Outstanding Community Service from the Association of American Medical Colleges.

The Mount Sinai Hospital, founded in 1852, is a 1,171-bed tertiary- and quaternary-care teaching facility and one of the nation’s oldest, largest and most-respected voluntary hospitals. In 2009, U.S. News & World Report ranked The Mount Sinai Hospital among the nation’s top 20 hospitals based on reputation, patient safety, and other patient-care factors. Nearly 60,000 people were treated at Mount Sinai as inpatients last year, and approximately 530,000 outpatient visits took place.

For more information, visit http://www.mountsinai.org/.

By Bob DeMarco
Alzheimer's Reading Room

Definition, Types and Symptoms of Multi Infarct Vascular Dementia

2010-04-19T08:43:00.001-07:00

Multi-infarct vascular dementia is a viscious, unrelentless enemy.

As some of you may be aware, my mother suffers from advanced vascular dementia which is of the multiple infarct dementia type (thousands of mini strokes/transient ischemic attacks or TIA's as they are sometimes called).

Mum's vascular dementia was of the clot type - that is, a clot forms and clogs a blood vessel, thereby preventing cells from getting oxygen and nutrients, hence cells die. The other type of vascular dementia is of the bleeding type - a blood vessel raptures, causing a loss of blood flow to some cells, which then die.

It's important to make this distinction between these two types of vascular dementia, as in the clot type vascular dementia, one want's to thin the blood, as with half an aspirin daily, to help prevent the clots forming or doing damage. With the bleeding type vascular dementia, we want to strengthen blood vessel walls and minimise bleeding when a rapture occurs, so that more blood remains flowing in the blood vessels.

If one was to thin the blood for a bleeder type vascular dementia, it would likely cause the vascular dementia to accelerate much faster, whereas, if the same were done for a clot type vascular dementia, the vascular dementia would likely be expected to be slowed down.

The symptoms of multi-infarct vascular dementia can vary greatly from one sufferer to the next. For example, my mum was able to recall who we, her children were, well into it's advanced stages. My Aunty Myrtle, on the other hand, went more and more back into the memories of her childhood and soon lost the ability to recall who her children were and sometimes confused them with other people from her early past.

The rate of onslaught of, or deterioration from the multi-infarct vascular dementia can vary greatly from between people as well. Mum's vascular dementia slowly reaked it's destruction over many year, while Myrtle, who came down with it much later than mum, has died following the multi-infarct's much more rapid onslaught on her. Some dementia sufferers only last a few months when placed into a dementia facility - even though their dementia may not be as far advanced as others, they just seem to lose the will to live and die soon after, no matter how homely and nice and friendly the facility may be. I think it's perhaps more the separation from loved ones and carers, the change in the physical environment, that causes some dementia sufferers to just give up and die. Lets face it though, for many of those with vascular dementia or Alzheimer's Disease, there will normally come a time when the needs of the dementia sufferer exceed the abilities and or endurance of their carer to look after them.

Any way, after about 5 or 6 years, the multi-infarct vascular dementia has caused mum to become bed ridden, unable to chew, nor talk (except perhaps for yea), nor walk.

Source: www.alzheimersdementia.cdadc.com/vasculardementia.html

What is Pick's Disease and Frontal Lobe Dementia?

2010-04-19T08:31:00.003-07:00

What is Pick's disease?

Pick's disease is a cause of dementia similar to Alzheimer's disease involving a progressive decline in a person's mental powers over a number of years. It occurs far less frequently than Alzheimer's disease, and usually starts to take effect between the ages of 40 and 65. Damage to brain cells is more localised than in Alzheimer's disease, and usually begins in the front part of the brain or frontal lobe. The initial symptoms affect personality and behaviour more and memory rather less than those of Alzheimer's. In later stages the person becomes totally dependent on others and the condition is very similar to late stage Alzheimer's. After death Pick's disease can be distinguished from Alzheimer's because there are no 'senile plaques' and characteristic changes in affected areas, known as Pick's bodies and Pick's cells, are found. The condition was first described by a German neurologist, Arnold Pick, in 1892.

What is frontal lobe dementia?

Frontal lobe dementia is the name given to any dementia caused by damage to this part of the brain. It includes Pick's disease but can also be caused by other diseases. They all have similar symptoms and prognoses.

What are the symptoms?

The frontal lobe of the brain is the part that governs our mood and behaviour. The person's mood and behaviour may become fixed and difficult to change, making them appear selfish and unfeeling. The affected person usually knows where they are, what day it is and does not have the sudden lapses of memory which are characteristic of Alzheimer's disease. Some people become withdrawn, while others lose their normal inhibitions and start talking to strangers. Others become aggressive. In many cases a person's normal sense of judgment seems to desert them. Because they lose their inhibitions and judgment some people exhibit sexual behaviour in public. The difference in symptoms between Alzheimer's disease and Pick's disease can be illustrated by thinking of different ways in which someone might walk out of a shop without paying.

In Alzheimer's disease this might happen because they become confused and forget they are holding a bag or forgot to pay.

In Pick's disease someone might know perfectly well they have the shopping but fail to see why they should be expected to pay for it. These behaviours can be very distressing for relatives and carers. They have a physical cause, and are not something that the person can usually control or contain. As the disease progresses language is affected. The person may become obsessional, repeating patterns of movement and behaviours like hand-washing, or repeating whatever is said to them. There is often an oral fixation, which can lead to people overeating and to putting objects other than food into the mouth. Some cases of Pick's disease also affect cells in the temporal lobe of the brain. When this happens memory is more likely to be affected, and the disease will more closely mimic Alzheimer's, with the addition of behavioural disorders. In the later stages the dementia is generalised. The person no longer recognises friends and family and may become totally dependent and need nursing care.

Is treatment possible?

A brain scan may help to define Pick's disease by showing the degree and location of the degeneration in the brain. There is no cure and no effective treatment yet available. The risk factors for Pick's disease are less well understood than for Alzheimer's disease. Some people with Pick's disease and frontal lobe dementia can live for a very long period of time, while others have a more rapid illness.

Is Pick's disease genetic?

Most cases of Pick's disease are not inherited or passed on to children. There is a small number of Pick's disease families where the disease is passed on in the genes. In these cases, inheriting the gene means developing the disease, often as young as 40. Some other frontal lobe dementias have a stronger genetic link.

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Should Mom Still Be Driving?

2010-04-19T08:21:00.001-07:00

By Heather Frenette, RN, MSN, CMC

Whether or not an elderly person should be driving is a question I am frequently asked. It is a very touchy subject and most children do not want to force the issue with their parents. Getting a drivers license is a rite of passage that most teenagers look forward to. Having to give up that license can be very difficult. It affects a person’s independence. When a person has to surrender their driver’s license, they suddenly are dependent on others to get around. Going to the grocery store, going to the doctor and even going out with friends can become difficult without transportation.

There are several warning signs to look if you are concerned about a loved one’s safety behind the wheel. If you notice any of the following 17 warning signs, it is time to evaluate whether your loved one should continue driving.

1. signaling incorrectly

2. trouble making turns

3. changing lanes improperly

4. confusion at highway exits

5. difficulty parking

6. stopping inappropriately in traffic

7. confusing the brake and gas pedals

8. driving too fast or slow

9. hitting curbs

10. failing to notice stop signs or traffic lights

11. reacting slowly to traffic situations

12. failing to anticipate potential dangers

13. getting lost in familiar places

14. scrapes or dents on car, house, garage, etc.

15. traffic violations

16. near-misses

17. accidents

There are several options for driving evaluation. One option is to have an evaluation through a driving evaluation center. Although there are companies that offer these services, many of these programs are offered through larger rehabilitation centers as well. Another option is to have a physician write a letter to the Department of Motor Vehicles (DMV) expressing their concern about their patient’s driving ability. Once the DMV receives this letter, they will send out a letter to your loved one either revoking their license or requesting them to come in for a written test and/or an on the road driving test. Successful completion of the testing is necessary for the license to remain valid.

It can be hard for family members to address the topic of driving safety with their loved one. Involving the primary care physician in this process can be helpful because it takes the role away from the family. Another option is to consult with a Geriatric Care Manager. Care Managers are typically well versed in the resources to evaluate driving and can facilitate not only the testing, but also put a plan in place to address the need for transportation once the person stops driving. Again, involving an independent third party takes the pressure off the family and takes some of the emotion out of the situation.

Addressing driving concerns with your loved one can be stressful and very difficult. It is an emotional topic with significant consequences. Having a plan to both evaluate your loved one’s driving and to accommodate their transportation needs if they stop driving will help make this difficult task somewhat easier.

Alzheimer's I Want You to Know What I Know

2010-03-25T13:02:00.001-07:00

Sometimes I write about how my mother went down hill fast, or did she? At 85 she was still walking long distances with me in New York. At 87 she couldn't walk a block. I found out later that she had stopped walking to the pool, she was bascially reduced to sitting around most of the day. Didn't know it. Nobody saw a problem.

I was living in New York and Reston, Va working away. The sound of my mother's feet and the way she complained constantly on the phone were already bothering me. These were new and different behaviors.

I thought something was wrong, but everyone seemed to think she was just "getting old". It seemed like a reasonable explanation, and I guess I was eager to accept this conclusion. I didn't have a clue about what was happening, so why not "old". It might have stayed that way if my stomach wasn't bothering me, and if I wasn't worried every time I thought about mom.

I know more now then I did back in those days. I now realize that my mother was deteriorating slowly over a long period of time. There were plenty of signs. Hindsight 20/20.

I continue to wonder about how things might have been. I wonder what if I had gotten my mother's memory tested the minute I felt concerned. I wonder if she had gotten on the combination of Aricept and Namenda early, what effect would they have had on my mother. Where would she be today?

I am never going to know the answers to those questions.

Now I spend time wondering how I can get the word out about mild cognitive impairment -- often the precursor to Alzheimer's dementia. The point at which a person starts to lose their memory faster than a person that is just getting "old".

The finding of the study below suggest that the memory and thinking abilities of person suffering from mild cognitive impairment declined two times as fast every year as the abilities of those without any cognitive problems. Thinking ability and memory in subjects with Alzheimer's disease declined four times as fast as in those without any cognitive problems.

"There persists the idea that some decline in memory is typical" with age. -- Robert Wilson

No doubt, memory does decline with age.

Here is my advice. If you have a parent or grandparent that starts to evidence new and different behaviors like meanness, worries about money, forgetfulness, gets lost while driving, or starts scrapping their feet on the ground -- get their memory checked.

If your stomach starts bothering you and you think there could be someone wrong with a parent or grandparent, don't assume they are getting old. Stomach bothering you? Pay attention. It is trying to tell you something -- get their memory checked.

If you have a parent or grandparent over 70 years of age -- get their memory checked every two years. People get physicals don't they? How about a brain physical? A memory test.

Alzheimer's dementia is ugly. You probably agree with that statement. But, if you haven't experienced Alzheimer's personally -- from the front row -- you can't imagine how ugly. No -- possible -- way.

There are treatments, not cures, available for Alzheimer's disease. They work very well for some people. We have people on this list that swear that the combination of Aricept and Namenda made a big difference in quality of life.

If you get worried about someone you love -- take action.

If its Alzheimer's, someone is going to have to assume the caregiver responsibility. The sooner you act the better the quality of life for the patient and the caregiver. The caregiver could be you.

Trust me, I know.

By Bob DeMarco, Alzheimer's Reading Room

Long-Term Efficacy Of Xenazine® (Tetrabenazine) For The Treatment Of Chorea Associated With Huntington's Disease

2010-03-24T15:02:00.000-07:00

Lundbeck Inc. has announced the presentation of results from an open-label extension study of Xenazine® (tetrabenazine) for the treatment of chorea associated with Huntington's disease (HD). Data from this study demonstrated that after an 80-week treatment period, subjects treated with Xenazine experienced a statistically significant reduction in chorea score (p<0.0001) as measured using the Unified Huntington's Disease Rating Scale (UHDRS) compared with baseline.1

These results are consistent with the reduction in chorea score observed in a pivotal Phase 3 randomized, double-blind, placebo-controlled multi-center clinical study in which subjects were treated with Xenazine for 12 weeks.2 Data from the open-label study were presented at the 12th Annual American Society of Experimental NeuroTherapeutics (ASENT) meeting in Bethesda, Maryland (Poster No. 0029). Results of this study are published in BMC Neurology, an online open access journal at http://www.biomedcentral.com/bmcneurol. Xenazine carries a boxed warning for increased risk of depression and suicidality.

The jerky, sporadic movements commonly seen with chorea associated with Huntington's disease may make it difficult for affected individuals to do tasks such as holding on to objects or even walking," said Dr. Samuel Frank, MD, assistant professor of neurology at the Boston University School of Medicine and lead investigator in this study. "Prolonged reduction of chorea associated with HD in some patients, as seen in this open-label study of Xenazine, is highly encouraging and suggests that Xenazine could be an important treatment option for those seeking to lessen chorea."

This open-label, multi-center extension study was designed to assess the long-term use of Xenazine as a treatment for chorea associated with Huntington's disease.1 The study enrolled 75 subjects, all of whom had previously completed 12 weeks of treatment with Xenazine in the pivotal Phase 3 trial, followed by a one week washout period. Xenazine was titrated over a maximum 12 weeks every three to seven days to the best individual dose, up to a maximum of 200 mg/day of Xenazine. Titration was permitted only during the first 11 weeks of the study.1 Patients who appear to require doses of greater than 50 mg/day should be genotyped for CYP2D6. Doses above 100 mg/day are not recommended for any patient in the Xenazine full prescribing information.3

Of the 75 subjects enrolled in the study, 45 subjects completed the 80-week treatment period, of which 42 subjects continued on to complete a one-week washout period.1 Thirty subjects withdrew from the study, of which, three subjects withdrew due to adverse events associated with Xenazine, including depression, delusions associated with previous suicidal behavior and vocal tics, and 26 subjects withdrew for various other reasons. One subject died due to metastatic breast cancer.

The primary efficacy endpoint in this study was the Total Maximal Chorea (TMC) score from the UHDRS at week 80 compared with baseline TMC score.1 TMC score at week 80 was also compared to TMC score at week 81 following the washout period.1 The UHDRS is a validated rating system used to measure the severity of Huntington's disease.2 The rating system ranges from 0 units (absent chorea symptoms) to 28 units (marked/prolonged chorea).

Data from this study demonstrate a statistically significant reduction in chorea in patients compared to baseline who completed 80 weeks of Xenazine treatment, with a mean reduction in the TMC score of 4.6 UHDRS units.1 At week 81, following a one week washout period, the mean TMC score increased 5.3 UHDRS units compared to week 80 (p<0.001), suggesting that continued use of Xenazine at an individualized dose maintains reduction of chorea associated with HD for up to 80 weeks and confirming results from the pivotal study where discontinuation of Xenazine treatment was associated with the return of chorea, but without significant worsening compared to baseline.1

When mild and unrelated adverse events (AEs) were excluded, the most common AEs in this study reported in >5% of subjects (three or more) were sedation/somnolence, depressed mood, anxiety, insomnia, akathisia, fatigue, agitation, fall, dysphagia and dystonia.1 Thirty-nine patients reported at least one AE during the titration phase compared to 20 patients during the maintenance period. Insomnia, somnolence and diarrhea emerged during titration and resolved during the maintenance period. Twelve serious AEs were reported including two falls, two cancer diagnoses, a single suicide attempt, pneumonia, elective hip replacement with post-op agitation, agitation, anxiety, akathisia, and one abnormal CA 27-29 titer in a patient who later died due to metastatic breast cancer.

About Xenazine

Xenazine is the only FDA-approved therapy for the treatment of chorea associated with Huntington's disease. Xenazine was approved by the U.S. Food and Drug Administration (FDA) in August 2008 and was launched by Lundbeck Inc. in November 2008. To learn more about Xenazine, visit http://www.xenazineusa.com.

Xenazine Important Safety Information and Boxed Warning

Xenazine can increase the risk of depression and suicidal thoughts and behavior (suicidality) in patients with Huntington's disease. Anyone considering the use of Xenazine must balance the risks of depression and suicidality with the clinical need for control of choreiform movements. Close observation of patients for the emergence or worsening of depression, suicidality, or unusual changes in behavior should accompany therapy. Patients, their caregivers, and families should be informed of the risk of depression and suicidality and should be instructed to report behaviors of concern promptly to the treating physician.

Particular caution should be exercised in treating patients with a history of depression or prior suicide attempts or ideation, which are increased in frequency in Huntington's disease. Xenazine is contraindicated in patients who are actively suicidal, and in patients with untreated or inadequately treated depression.

Xenazine is also contraindicated in patients with impaired hepatic function, and in patients taking monoamine oxidase inhibitors or reserpine.3 At least 20 days should elapse after stopping reserpine before starting Xenazine. Although Xenazine has been shown to decrease the chorea associated with HD, it was also shown to cause slight worsening in mood, cognition, rigidity and functional capacity and prescribers should periodically re-evaluate the need for therapy. Some adverse effects such as depression, fatigue, insomnia, sedation/somnolence, parkinsonism, akathisia, QTc prolongation and interactions with CYP2D6 inhibitors may be dose dependent, and resolve or lessen with dose adjustment. The most frequent adverse events (over 10% and at least 5% greater than placebo) reported with Xenazine compared to placebo in a randomized, 12-week, placebo controlled clinical trial of HD subjects include sedation/somnolence (31% vs. 3%), fatigue (22% vs. 13%), insomnia (22% vs. 0%), depression (19% vs. 0%), akathisia (19% vs. 0%), anxiety (15% vs. 3%) and nausea (13% vs. 7%). For more information, please see full prescribing information including Boxed Warning or go to http://www.xenazineusa.com.

About Chorea Associated with Huntington's Disease

Chorea is the most common symptom of Huntington's disease (HD), a rare neurodegenerative disease that results in uncontrolled movements, emotional disturbances, and mental deterioration. HD affects approximately 30,000 people in the United States.4 Chorea associated with HD is characterized by irregular, abrupt movements of the face, fingers, arms, legs, or body that can appear as constant jerky, twisting, and uncontrollable, dance-like motions.5,6 As the disease progresses, it may interfere with many voluntary movements, making it more difficult to walk, talk or hold things.7 Currently, there is no known cure for HD and the disease and prognosis is poor.3,8,9 To learn more about chorea associated with Huntington's disease, please visit http://www.xenazineusa.com.

Sources

Frank S. Tetrabenazine as anti-chorea therapy in Huntington disease: an open-label continuation study. BMC Neurol. 2009 Dec 18;9:62.

Huntington Study Group. Tetrabenazine as antichorea therapy in Huntington disease: a randomized controlled trial. Neurology. 2006 Feb 14;66(3):366-72.

Xenazine® Full Prescribing Information. Deerfield, IL: Lundbeck Inc. September 2009.

What is Huntington's Disease (HD)? Huntington's Disease Society of America. http://www.hdsa.org/about/our-mission/what-is-hd.html. Last accessed 2/22/10.

Huntington Study Group. Unified Huntington's Disease Rating Scale: Reliability and Consistency. Movement Disorders. 1996;2(2):136-142.

Chorea, Huntington's Disease. The Movement Disorder Society. http://www.movementdisorders.org/disorders/chorea.php. Last accessed 02/22/10.

Kirkwood SC, Su JL, Conneally PM, Foroud T. Progression of symptoms in the early and middle stages of Huntington disease. Archives of Neurology 2001;58:273-278.

Huntington's Disease: Hope Through Research. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/huntington/detail_huntington.htm. Last accessed 02/22/10.

Huntington's disease. Mayo Clinic. http://www.mayoclinic.com/health/huntingtons-disease/DS00401/METHOD=print. Last accessed 2/22/10.

Source:

Nikki Kidd

Edelman Public Relations

View drug information on Xenazine

The Social Security Administration added early-onset/younger onset Alzheimer's!

2010-03-01T10:25:00.003-07:00

Social Security Disability - Breaking News

The Social Security Administration (SSA) has added early-onset/younger onset Alzheimer's to the list of conditions under its Compassionate Allowance Initiative, giving those with the disease expedited access to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). The Alzheimer's Association, a longtime advocate for those with early-onset Alzheimer's, has played an integral role in this movement to reduce the length of disability decision process.

Complete statement from Alzheimer's Association

Washington, DC February 11, 2010 – In its effort to improve and expedite the disability
determination process, the Social Security Administration (SSA) has announced that it
will add early-onset Alzheimer’s disease to its Compassionate Allowances Initiative. The
initiative identifies debilitating diseases and medical conditions that meet the SSA’s
disability standards for Social Security Disability Income (SSDI) or Supplemental
Security Income (SSI). Inclusion in the initiative allows for faster payment of Social
Security benefits to individuals with Alzheimer’s disease. The Alzheimer’s Association
applauds Social Security Commissioner Michael Astrue and the SSA for understanding
that the cognitive impairment caused by Alzheimer’s disease leaves individuals unable
to maintain gainful employment and deserving of an expedited disability determination.

“As the leading research, advocacy, and support organization for Alzheimer’s disease,
the Alzheimer’s Association has actively sought the inclusion of early-onset Alzheimer’s
in the Social Security Administration’s Compassionate Allowances Initiative,” says Harry
Johns, President and CEO of the Alzheimer’s Association. “Now, individuals who are
dealing with the enormous challenges of Alzheimer’s won’t also have to endure the
financial and emotional toll of a long disability decision process.”

Since 2003, the Alzheimer’s Association has been advocating on behalf of individuals
with early-onset Alzheimer’s as they navigate the Social Security disability
determinations process and welcomes the SSA’s decision. Until now, individuals with
early-onset Alzheimer’s disease have faced a myriad of challenges when applying for
SSDI or SSI, including a long decision process, initial denials, and multiple appeals.
Today’s decision will simplify and streamline the SSDI/SSI application process and
decrease the wait time for benefits, which for some has lasted as long as three years.
There are currently an estimated 5.3 million Americans with Alzheimer’s disease.
Although the majority of Alzheimer cases are individuals age 65 and older, a significant
number of people under age 65 are also affected by this fatal disease and have few
financial options other than the Social Security disability program.

In addition to Alzheimer’s disease, mixed-dementia and Primary Progressive Aphasia
were also added to the Compassionate Allowances Initiative under the SSA’s recent
decision. To determine which diseases and conditions to include, SSA has held several
public outreach hearings throughout the country that have included testimony from
medical and scientific experts, as well as those directly affected by these diseases and
conditions. The July 2009 Compassionate Allowance Hearing on Early-Onset
Alzheimer’s Disease and Related Dementias, held in Chicago, included testimony from
Johns, several of the nation’s top Alzheimer researchers, and caregivers and individuals
with early-onset Alzheimer’s who discussed the challenges they faced during the
disability application process. During the day-long hearing, SSA officials heard about the
terminal nature of Alzheimer’s, the disabilities that often prohibit work in even the earliest
stages of the disease, and the lack of effective treatments to modify or halt the
progression of Alzheimer’s.

In addition to participation in the hearing, as many as 600 people with Alzheimer’s and
other dementias and their caregivers responded to the Association’s request to submit
written comments to SSA about their experiences applying for disability benefits. A
sample of these comments are posted on SSA’s Compassionate Allowances website:
http://www.socialsecurity.gov/compassionateallowances/statements.htm

The Social Security Administration’s proactive efforts to “fast track” certain conditions will
help to reduce the backlog of disability claims and, more importantly, ensure those
claims that fall under this initiative will be decided within days instead of months or
years.

“The diagnosis of Alzheimer’s indicates significant enough cognitive impairment to
interfere with daily living activities, including the ability to work. This decision will help a
significant number of Alzheimer families. It will also help the Social Security
Administration, since long delays and appeals in the disability determination process are
costly for the agency,” says Johns. “The Alzheimer’s Association praises SSA for this
decision and remains committed to continue to work with Commissioner Astrue and his
colleagues at the Social Security Administration in support of its implementation
nationwide.”

Researchers find new risk factor for early-onset dementia

2010-03-01T10:20:00.002-07:00

Examining brain tissue from over 500 individuals in 11 countries, researchers from the University of Pennsylvania School of Medicine and the Children's Hospital of Philadelphia, and colleagues found a new risk factor for the second-most-common cause of early-onset dementia after Alzheimer's disease.

"Using a genome-wide scan for genetic variation in post-mortem brain tissue, we were able to pinpoint variations common to patients with a specific subtype of frontotemporal lobar degeneration, FTLD," says co-first author Vivianna Van Deerlin, MD, PhD, associate professor of Pathology and Laboratory Medicine at Penn. "This gives us more information on what proteins may underlie the molecular events leading to FTLD, and eventually, new drug targets." The findings were published online this week in Nature Genetics.

"By identifying gene variants that may play a role in the development and progression of one type of FTLD, this research, if replicated, will take us one step closer to an understanding of the complex biologic pathways involved in this devastating disease," said Marcelle Morrison-Bogorad, PhD, director of the National Institutes of Health Division of Neuroscience.

The findings build on a 2006 discovery by co-senior authors Virginia Lee, PhD, director of the Center for Neurodegenerative Disease Research, and John Q. Trojanowski, MD, PhD, director of the Institute of Aging at Penn. They led an international team that found that a protein called TDP-43 accumulates abnormally in brain tissue from individuals with one type of heritable FTLD. TDP-43 is a known protein widely expressed throughout the body, with multiple functions, including regulating transcription of the genetic code and as scaffolding for nuclear and motor neuron proteins.

FTLD cases that are characterized by TDP-43 inclusions can be passed from one generation to the next, as a result of mutations in another protein called progranulin (GRN). Using post-mortem brain tissue from 515 patients with TDP-associated FTLD, the team found that these patients had multiple genetic variations called SNPs in common in a region on chromosome 7 containing the protein TMEM106B, compared to over 2,500 disease-free controls.

From this, the team concluded that the TMEM106B gene variants confer a higher genetic risk for all FTLD-TDP patients, as well as in the subset of patients with GRN mutations. What's more, alterations in levels of TMEM106B protein in the brain may be directly or indirectly involved in causing FTLD.

How TDP-43, GRN, and TMEM106B proteins might normally interact in brain cells and be disrupted in FTLD remains to be deciphered. Nevertheless, the discovery of TMEM106B is an important step toward a better understanding of FTLD. The team plans to sequence the TMEM106B segment of chromosome 7, and in parallel, study the normal functions of TMEM106B.

SOURCE University of Pennsylvania School of Medicine

Early-stage and younger-onset Alzheimer's Disease Defined

2010-03-01T10:08:00.000-07:00

Early-stage is the early part of Alzheimer’s disease when problems with memory, thinking and concentration may begin to appear in a doctor’s interview or medical tests. Individuals in the early-stage typically need minimal assistance with simple daily routines. At the time of a diagnosis, an individual is not necessarily in the early stage of the disease; he or she may have progressed beyond the early stage.
The term younger-onset refers to Alzheimer's that occurs in a person under age 65. Younger-onset individuals may be employed or have children still living at home. Issues facing families include ensuring financial security, obtaining benefits and helping children cope with the disease. People who have younger-onset dementia may be in any stage of dementia – early, middle or late. Experts estimate that some 500,000 people in their 30s, 40s and 50s have Alzheimer's disease or a related dementia.

By Alzheimer's Association

Early-onset Alzheimer's: When symptoms begin before 65

2010-03-01T10:02:00.001-07:00

Early-onset Alzheimer's is an uncommon form of dementia that strikes people younger than age 65. Glenn E. Smith, Ph.D., a neuropsychologist at Mayo Clinic, Rochester, Minn., answers questions about this condition.

How common is early-onset Alzheimer's?

Of all the people with Alzheimer's disease, only 5 to 10 percent develop symptoms before age 65. So if 4 million Americans have Alzheimer's, at least 200,000 people have the early-onset form of the disease. Early-onset Alzheimer's has been known to develop between ages 30 and 40, but that's very uncommon. It is more common to see someone in his or her 50s who has the disease.

What causes it?

It often runs in families. Many people with early-onset Alzheimer's have a parent or grandparent who also developed Alzheimer's at a younger age. A significant proportion of early-onset Alzheimer's is linked to three genes.

These three genes are different from the APOE gene — the gene that can increase your risk of Alzheimer's in general. But you can have the APOE gene and never develop Alzheimer's. Conversely, you can have Alzheimer's and not have the APOE gene. The genetic path of inheritance is much stronger in early-onset Alzheimer's. If you have one of those three genes, it would be very unusual for you not to develop Alzheimer's before age 65.

If early-onset Alzheimer's runs in my family, should I get tested for it?

That's a personal decision that only you can make. There are pros and cons to genetic testing. Anyone who's considering it should never proceed without genetic counseling — to examine these pros and cons beforehand.

Does early-onset Alzheimer's progress at a faster rate?

There's a perception that it does, but it's not backed up by hard data. It depends on what endpoint you're using in your measurement. If you use admission to a nursing home, that may occur earlier for the early-onset group — but only because their spouses have so many other things on their plates.

For example, people who have early-onset Alzheimer's often still have children at home. They or their spouses may have elderly parents that need care, too. That generation often is sandwiched between caring for their ailing parents and caring for their teenage children at the same time. Adding in a spouse with Alzheimer's can simply be too much to handle.

What types of problems occur more often in early-onset Alzheimer's?

Alzheimer's disease has a tremendous impact at any age. But we don't expect to see dementia at a young age, so problems emerging at work or home may be mistakenly ascribed to lack of motivation or diligence, or possible psychiatric problems. People with early-onset Alzheimer's may lose relationships or be fired instead of being identified as medically ill or disabled.

The loss of intimacy is something that comes up a lot with early-onset Alzheimer's. Many people who develop late-onset Alzheimer's have already been widowed. But couples in their 40s or 50s are often in the middle of their married lives. Spouses face the possibility of spending many years of their lives without an active partner. Losing the romantic component and changing to a caregiver status complicates the relationship.

Are there financial issues as well?

People with early-onset Alzheimer's often have to quit work, and this loss of income is a serious concern. Finances get even tighter if their spouses also quit their jobs to become full-time caregivers. Some medical benefits and many social-support programs won't provide assistance unless the person with Alzheimer's is over age 65. Younger people may need special waivers to get into such programs.

How important is it to obtain an accurate diagnosis?

Accurate diagnosis is critical so that you can explain your condition to your employer and perhaps arrange a lighter workload or more convenient schedule. For family reasons it is even more crucial. The diagnosis is fundamental in helping the family react with appropriate understanding and compassion. In addition, a complete evaluation will rule out reversible forms of dementia that might improve with treatment.

What advice do you have for those with early-onset Alzheimer's and their families?

The key treatments in Alzheimer's are education and support. This is especially true given the unique social challenges of early-onset Alzheimer's. Getting connected to services such as support groups can help you identify resources, gain a deeper understanding and learn ways to adapt to the situation.

By Mayo Clinic Staff

Alzheimer's, Sleep, and Patterns

2010-02-26T10:43:00.001-07:00

"With Alzheimer's disease it is all about establishing patterns of behavior. Whether it is the pee pee war, poop war, or sleeping you have to get into a pattern. You have to establish a pattern of behavior that is conducive to accomplishing a mission...."

Every so often I receive an email asking for advice on the Alzheimer's patient and sleeping. Some dememtia sufferers get up frequently at night, and others stay up all night.

When I receive these emails, I am immediately concerned. There is a very high correlation between sleep deprivation and depression. In the case of the Alzheimer's caregiver, the combination of stress and not getting a good night's sleep can lead to depression. This helps explain, in part, why 40 percent of Alzheimer's caregivers suffer from depression.

In this most recent email, our reader explains that his mother is staying up all night. The first solution the doctor offered was to put his mother on antipsychotic drugs. Yikes. Fortunately, our reader has his eye on the ball and has learned that the combination of Alzheimer's and antipsychotic drugs in not only a bad idea -- its dangerous.

See...Antipsychotics, Aricept, and a Good Point Guard

I am not a doctor, and I don't pretend to be a doctor. The potential solution I am offering here is as a fellow Alzheimer's caregiver.

The first question I always ask is, is the Alzheimer's patient sleeping during the day. Usually the answer is Yes. Well, you can only sleep so much in any 24 hour day. If you get 3 or more hours of sleep during the day, it is likely that you won't sleep much at night or that you will wake up in the very early AM. In order to sleep 6 hours or more, through the night, this pattern needs to be changed.

With my mother the question I have learned to ask myself in every situation is -- what is the pattern? What is the pattern of behavior?

In the pee pee war, I finally realized I had to get my mother into the bathroom every two hours. I learned by simple observation that when my mother said those magic words -- I have to pee -- it was too late. She is older and she can't hold it in. Her pee pee muscle is weak. I'll interject here. I learned how to make my own pee pee muscle stronger through a couple of simple exercises.

Our reader explained that his mother does sleep during the day. Maybe most of the day. At night, when it is time to sleep, he puts his mother in bed and then turns on the TV. He know she is up and watching TV all night because he hears her talking to the television via the baby monitor he installed in her room.

Baby monitor, excellent idea. TV on, bad idea. Awake at night hearing mother talk and the TV on, very bad.

I don't watch television in the bedroom. I believe it is a bad idea. The bed is for sleeping. If you use the bed for sleeping you are establishing the correct pattern of behavior. If you use the bed to watch TV you are diluting the correct pattern of behavior. I will interject another tidbit here, I believe television in the bedroom is a bad idea if you are married. You can decide that one for yourself. Bed equals sleep.

After our reader told the doctor that he would not give his mother antipsychotic drugs, the doctor came up with another solution -- valium. So it now appears our reader will try the combination of Ambien and Valium. Double yikes.

First off, if Ambien doesn't work from the get go then it doesn't work. If it doesn't work, jettison the drug. Get rid of it. All drugs are designed to accomplish a mission. Sometimes they work very well for a person. Sometimes they don't work at all for a person. This is a simple fact of life. You are wasting your time, money, and maybe even hurting yourself when you try kicking a dead horse. A dead horse is not going to get up and starting running. Put the bubble up above your head. Imagine yourself kicking a dead horse. Let me know.

For some reason I will never fully understand, I wonder why doctors are addicted to writing prescriptions? You would think an experienced doctor would be asking the same questions I am asking here. What is the pattern of behavior?

Wouldn't it make more sense to first change the pattern of behavior before working your way through the PDR? The Physicians Desk Reference contains all the FDA approved drugs, a description of the drugs, and a picture of the drugs. Rather than trying all the drugs, how about this? Try reading the PDR when you get in bed. Sleep is on the horizon, trust me.

I am confident that changing the pattern of behavior is the best potential solution. Is if fool proof? Will it work every time? No. But I know that it can work because I suggested it to some readers and they told me it did work.

My advice is simple and straight forward. Start doing things during the day that engage the person suffering from Alzheimer's disease. Keep them up and moving to the degree possible. Involve them in normal every day activities like going to the store. If they have trouble walking try what I did, I get my mother to drive around in the motorized cart with me in Walmart while we shop.

Try and remember, what did the person suffering from Alzheimer's like to do before Alzheimer's? Puzzles, crossword puzzles, read the comics, art, music, going to the mall for no good reason? Try to engage them in these activities during the day.

Key word here day -- get them into some bright light. Sun is good. A well lit store is good.

Here are some simple activities. Take them to McDonald's for a cup of coffee. Ask for the senior discount. Take them for a ride in the car. Library anyone? Let them sit over near the kids section. This works wonderfully well. If they are not a wanderer, my mother isn't, this really works well on several levels.
If you want a person to sleep at night, you can't let them sleep all day. Alzheimer's or not, you sleep all day, you won't sleep at night. Simple observation.

With Alzheimer's disease it is all about establishing patterns of behavior. Whether it is the pee pee war, poop war, or sleeping you have to get into a pattern. You have to establish a pattern of behavior that is conducive to accomplishing a mission.

Whether it is pee pee, poop, or sleep in won't happen in a New York minute. You have to work on it. It takes time to establish a pattern of behavior. Here is the good news. Once you establish a good pattern of behavior it will stick if you keep reinforcing the pattern.

If you fall into a bad pattern of behavior guess what? It will persist. It will persist until you decide to change the pattern. To change a pattern of behavior to have to be committed to change. You have to be goal oriented. You have to be working toward that goal each day.

Or, you can keep kicking a dead horse.
By Bob DeMarco, Alzheimer's Reading Room

Predicting progression of Alzheimer’s disease

2010-02-24T09:24:00.001-07:00

There is considerable variability in progression rates among Alzheimer’s disease (AD) patients. Patients and families frequently ask clinicians to prognosticate regarding expected rates of cognitive and functional decline, and clinicians have little basis for making such predictions.

We have shown that it is possible to reliably estimate early AD symptom onset, and together with baseline MMSE score, to calculate a rate of progression at the initial assessment (the preprogression rate).

The use of a rate to estimate early progression gives information on severity, but also on how long it took for the patient to reach the current severity level, which reflects that individual’s disease characteristics better than a severity score alone. However, it is not clear whether patients maintain a similar rate of decline throughout the course of their disease or change trajectories over time, due to endogenous or exogenous factors (such as treatment).

Demonstrating the predictive value of the calculated pre-progression rate would be valuable for patient and family counseling, as well as for providing a research marker of phenotypic variability to validate biological markers of progression. Further, the ability to model group progression of AD patients is essential for designing disease-modification studies of new AD treatments, and pre-progression might be an important baseline variable to take into account in the analysis of clinical trial data

The Baylor Alzheimer’s Disease and Memory Disorders Center has followed a cohort of AD patients for up to 15 years, with detailed clinical and neuropsychological data obtained at baseline and at annual follow up visits which are maintained in an ongoing electronic data base.

We used these data to answer the following questions: 1) does a pre-progression rate calculated at the initial assessment predict subsequent performance in specific cognitive and functional domains during follow up, and 2) is the pre-progression rate associated with overall survival, after adjustment for relevant covariates?

This research study was published in BioMed Central's open access journal. Go here to read Predicting progression of Alzheimer's disease.

Rachelle S Doody, Valory Pavlik, Paul Massman, Susan D Rountree, Eveleen Darby, Wenyaw Chan

Exercise associated with preventing, improving Mild Cognitive Impairment

2010-02-19T15:09:00.001-07:00

Moderate physical activity performed in midlife or later appears to be associated with a reduced risk of mild cognitive impairment, whereas a six-month high-intensity aerobic exercise program may improve cognitive function in individuals who already have the condition, according to two reports in the January issue of Archives of Neurology, one of the JAMA/Archives journals. Mild cognitive impairment is an intermediate state between the normal thinking, learning and memory changes that occur with age and dementia, according to background information in one of the articles. Each year, 10 percent to 15 percent of individuals with mild cognitive impairment will develop dementia, as compared with 1 percent to 2 percent of the general population. Previous studies in animals and humans have suggested that exercise may improve cognitive function.

In one article, Laura D. Baker, Ph.D., of the University of Washington School of Medicine and Veterans Affairs Puget Sound Health Care System, Seattle, and colleagues report the results of a randomized, controlled clinical trial involving 33 adults with mild cognitive impairment (17 women, average age 70). A group of 23 were randomly assigned to an aerobic exercise group and exercised at high intensity levels under the supervision of a trainer for 45 to 60 minutes per day, four days per week. The control group of 10 individuals performed supervised stretching exercises according to the same schedule but kept their heart rate low. Fitness testing, body fat analysis, blood tests of metabolic markers and cognitive functions were assessed before, during and after the six-month trial.

A total of 29 participants completed the study. Overall, the patients in the high-intensity aerobic exercise group experienced improved cognitive function compared with those in the control group. These effects were more pronounced in women than in men, despite similar increases in fitness. The sex differences may be related to the metabolic effects of exercise, as changes to the body's use and production of insulin, glucose and the stress hormone cortisol differed in men and women.

"Aerobic exercise is a cost-effective practice that is associated with numerous physical benefits. The results of this study suggest that exercise also provides a cognitive benefit for some adults with mild cognitive impairment," the authors conclude. "Six months of a behavioral intervention involving regular intervals of increased heart rate was sufficient to improve cognitive performance for an at-risk group without the cost and adverse effects associated with most pharmaceutical therapies."

In another report, Yonas E. Geda, M.D., M.Sc., and colleagues at Mayo Clinic, Rochester, Minn., studied 1,324 individuals without dementia who were part of the Mayo Clinic Study of Aging. Participants completed a physical exercise questionnaire between 2006 and 2008. They were then assessed by an expert consensus panel, who classified each as having normal cognition or mild cognitive impairment.

A total of 198 participants (median or midpoint age, 83 years) were determined to have mild cognitive impairment and 1,126 (median age 80) had normal cognition. Those who reported performing moderate exercise—such as brisk walking, aerobics, yoga, strength training or swimming—during midlife or late life were less likely to have mild cognitive impairment. Midlife moderate exercise was associated with 39 percent reduction in the odds of developing the condition, and moderate exercise in late life was associated with a 32 percent reduction. The findings were consistent among men and women.

Light exercise (such as bowling, slow dancing or golfing with a cart) or vigorous exercise (including jogging, skiing and racquetball) were not independently associated with reduced risk for mild cognitive impairment.

Physical exercise may protect against mild cognitive impairment via the production of nerve-protecting compounds, greater blood flow to the brain, improved development and survival of neurons and the decreased risk of heart and blood vessel diseases, the authors note. "A second possibility is that physical exercise may be a marker for a healthy lifestyle," they write. "A subject who engages in regular physical exercise may also show the same type of discipline in dietary habits, accident prevention, adherence to preventive intervention, compliance with medical care and similar health-promoting behaviors."

Future study is needed to confirm whether exercise is associated with the decreased risk of mild cognitive impairment and provide additional information on cause and effect relationships, they conclude.

By e! Science News
Source: JAMA and Archives Journals

Creative Expression: Is It the Key to Self-Actualization for an Alzheimer's Patient?

2010-02-19T09:06:00.001-07:00

“By engaging them, we communicate. By communicating, we dignify their existence and help them cope”.....

The quote above is one of the best I read in a long time. It is from an article in the Vancouver Sun by Dalia Gottlieb-Tanaka, a professor at the Centre for Population Health Promotion Research at the University of British Columbia.

Canada is facing the reality that by 2025 one out of four senior citizens over 80 will be living with dementia.

The author says,

“Those of us who carry their memories need to make every effort to include them in our world the way they are.” In other words, we need to meet the patient at their level and not expect the patient to match our preconceived notions.

The author cautions that, in addition to providing medical and physical care we need to provide “meaningful activities” and these “can be found in Creative Expression Programs that give people with dementia the opportunity for self-actualization.”

Again and again, caregivers, medical personnel, and researchers are finding that creative activities like puzzles, art, and music are the path to improving the lives of those with Alzheimer’s.

In the Vancouver Sun article, Gottlieb-Tanaka also discusses the phenomenon of Alzheimer’s patients always wanting to “go home.” She explains that a longing for going home may be a longing for what is familiar, important, and loved by the patient. It may tell us that the patient is feeling lonely or isolated.

I was particularly interested in the following two paragraphs, since they so clearly explain what Bob DeMarco is accomplishing when he “lends his mom his brain.”

“We become the vessel that carries vanishing memories of their past life, occupation, hobbies, achievements. We can then turn around and communicate this information in the present. Specific memories such as remembering dates and details of events are irrelevant, as long as the person with dementia recalls a familiar feeling, thought or wish; they may even adopt memories of somebody else sitting next to them.”

“As long as we engage them in a conversation based even on a few words that may be accompanied by facial expressions and body gestures, we are communicating. As long as we engage them in singing, dancing, reminiscing, storytelling, painting, gardening, caring for animals, or even writing poems, we have brightened their day. As long as we accept their present abilities, we dignify, acknowledge and validate their existence.”

The author tells us that according to Dr. Bruce Miller, a neurologist, some dementia patients may even develop new skills such as painting or composing music.

I was thinking that this is similar to a blind person having a heightened sense of hearing. That part of the brain that is still working becomes stronger from exercise. Not only does the Alzheimer’s patient have the portion of their brain that deals with creativity get affected last in their disease, but there is even a possibility of increasing the abilities of the remaining brain functions.

The author mentions that various programs in Canada that are working to include creative expression in the care of dementia patients. One is the Society for the Arts in Dementia Care. They came up with a “Creative-Expression Abilities tool”, to assess the effects of creative activities on dementia patients. The B.C. Medical Services Foundation is conducting a survey on the facial expressions of dementia patients when they are engaged in creativity.

The more I read articles like this one, the more pleased I am to be distributing puzzles for Alzheimer's patients though my non-profit charitable organization Puzzles to Remember.

How wonderful that I might even be able to help develop new abilities in these patients and not just help save previous abilities.

To read the article referenced go here.

By Max Wallack

Exercise Associated With Preventing, Improving Mild Cognitive Impairment

2010-02-08T08:44:00.002-07:00

Moderate physical activity performed in midlife or later appears to be associated with a reduced risk of mild cognitive impairment, whereas a six-month high-intensity aerobic exercise program may improve cognitive function in individuals who already have the condition, according to two reports in the January issue of Archives of Neurology, one of the JAMA/Archives journals.

Mild cognitive impairment is an intermediate state between the normal thinking, learning and memory changes that occur with age and dementia, according to background information in one of the articles. Each year, 10 percent to 15 percent of individuals with mild cognitive impairment will develop dementia, as compared with 1 percent to 2 percent of the general population. Previous studies in animals and humans have suggested that exercise may improve cognitive function.

In one article, Laura D. Baker, Ph.D., of the University of Washington School of Medicine and Veterans Affairs Puget Sound Health Care System, Seattle, and colleagues report the results of a randomized, controlled clinical trial involving 33 adults with mild cognitive impairment (17 women, average age 70). A group of 23 were randomly assigned to an aerobic exercise group and exercised at high intensity levels under the supervision of a trainer for 45 to 60 minutes per day, four days per week. The control group of 10 individuals performed supervised stretching exercises according to the same schedule but kept their heart rate low. Fitness testing, body fat analysis, blood tests of metabolic markers and cognitive functions were assessed before, during and after the six-month trial.

A total of 29 participants completed the study. Overall, the patients in the high-intensity aerobic exercise group experienced improved cognitive function compared with those in the control group. These effects were more pronounced in women than in men, despite similar increases in fitness. The sex differences may be related to the metabolic effects of exercise, as changes to the body's use and production of insulin, glucose and the stress hormone cortisol differed in men and women.

"Aerobic exercise is a cost-effective practice that is associated with numerous physical benefits. The results of this study suggest that exercise also provides a cognitive benefit for some adults with mild cognitive impairment," the authors conclude. "Six months of a behavioral intervention involving regular intervals of increased heart rate was sufficient to improve cognitive performance for an at-risk group without the cost and adverse effects associated with most pharmaceutical therapies."

In another report, Yonas E. Geda, M.D., M.Sc., and colleagues at Mayo Clinic, Rochester, Minn., studied 1,324 individuals without dementia who were part of the Mayo Clinic Study of Aging. Participants completed a physical exercise questionnaire between 2006 and 2008. They were then assessed by an expert consensus panel, who classified each as having normal cognition or mild cognitive impairment.

A total of 198 participants (median or midpoint age, 83 years) were determined to have mild cognitive impairment and 1,126 (median age 80) had normal cognition. Those who reported performing moderate exercise -- such as brisk walking, aerobics, yoga, strength training or swimming -- during midlife or late life were less likely to have mild cognitive impairment. Midlife moderate exercise was associated with 39 percent reduction in the odds of developing the condition, and moderate exercise in late life was associated with a 32 percent reduction. The findings were consistent among men and women.

Light exercise (such as bowling, slow dancing or golfing with a cart) or vigorous exercise (including jogging, skiing and racquetball) were not independently associated with reduced risk for mild cognitive impairment.

Physical exercise may protect against mild cognitive impairment via the production of nerve-protecting compounds, greater blood flow to the brain, improved development and survival of neurons and the decreased risk of heart and blood vessel diseases, the authors note. "A second possibility is that physical exercise may be a marker for a healthy lifestyle," they write. "A subject who engages in regular physical exercise may also show the same type of discipline in dietary habits, accident prevention, adherence to preventive intervention, compliance with medical care and similar health-promoting behaviors."

Future study is needed to confirm whether exercise is associated with the decreased risk of mild cognitive impairment and provide additional information on cause and effect relationships, they conclude.

By ScienceDaily, Adapted from materials provided by JAMA and Archives Journals.

Psoriasis Linked to Vascular Disease

2010-02-08T08:41:00.001-07:00

Patients with psoriasis are at increased risk for atherosclerosis and accompanying vascular diseases, researchers found.
Among predominantly male patients at a Veterans Affairs medical center, the skin disease was associated with a greater likelihood of ischemic heart disease, cerebrovascular disease, and peripheral arterial disease, as well as death, according to Robert Kirsner, M.D., Ph.D., of the University of Miami, and colleagues.

"This result is not surprising, given the systemic nature of atherosclerosis," the researchers wrote in the June issue of Archives of Dermatology.

They said the findings have "tremendous and far-reaching clinical implications, as all of these vascular conditions represent a major financial cost to the healthcare system, as well as a major cause of disability and death."

Because psoriasis has recently been shown to be a systemic inflammatory condition, researchers are interested in looking at its connection to cardiovascular risk factors and myocardial infarction, Dr. Kirsner and colleagues said.

To explore the issue, they identified 3,236 patients with psoriasis and 2,500 control patients without the condition who were treated at the Miami VA Medical Center.

The patients with psoriasis were slightly older (67.9 versus 65.1) and more likely to male (95.5% versus 88.2%, P<0.01 for both).

As expected, they were also more likely to be smokers and to have diabetes, hypertension, and dyslipidemia (P<0.01 for all).

After adjusting for these differences, patients with psoriasis were more likely to be diagnosed with the following conditions:

•Atherosclerosis (OR 2.18, 95% CI 1.59 to 3.01)

•Ischemic heart disease (OR 1.78, 95% CI 1.51 to 2.11)

•Cerebrovascular disease (OR 1.70, 95% CI 1.33 to 2.17)

•Peripheral arterial disease (OR 1.98, 95% CI 1.32 to 2.82)

Psoriasis was also independently predictive of death (OR 1.86, 95% CI 1.56 to 2.21).

Future studies are needed to determine whether aggressive treatment of psoriasis or traditional cardiovascular risk factors will improve the total atherosclerotic burden associated with the skin condition, the researchers said.

"In the meantime, we recommend that healthcare providers who are caring for patients with psoriasis be vigilant with respect to traditional risk factor screening," they said.

In addition, they continued, "it would be prudent for dermatologists to be familiar with suggested screening for cardiovascular risk factors and recommendations for aspirin use. If not, it is imperative that they work in collaboration with a primary care provider or another internal medicine specialist, who also needs to be aware of our findings."

They acknowledged some limitations of the study, including the possibility of inaccurate coding of diagnoses and the inability to assess temporal relationships between psoriasis and vascular disease because of the cross-sectional design.

By Todd Neale, Staff Writer, MedPage Today
Primary source: Archives of Dermatology

Huntington's Disease: Discovery Of Mechanism In Brain Cell Injury Offers New Treatment Approaches

2010-02-08T08:07:00.002-07:00

Scientists at the Brain Research Centre and Centre for Molecular Medicine and Therapeutics have uncovered a key cellular mechanism that alters brain cell function in Huntington's disease, and identified a possible treatment for the disease.

The results of the study were published online today and will appear in the January 28 edition of the journal Neuron.

Huntington's disease is an inherited degenerative brain disease that causes cognitive and motor impairment, and eventually death. One in 10,000 Canadians suffers from Huntington's disease.

The researchers found that, in mouse models, the genetic mutation that causes Huntington's disease results in an excessive number of NMDA receptors - special receptors found at the surface of brain cells - to accumulate and be active outside synapses, which are the connections between brain cells. In healthy conditions, there should be few NMDA receptors outside the synapse.

The researchers also found that the over-activation of the NMDA receptors outside the synapse leads to a reduction in brain cell survival signals and disruption in brain function.

"Previous work in cell cultures showed that NMDA receptors located within the synapse can have beneficial effects on brain cells, whereas NMDA receptors outside the synapse, called 'extra-synaptic NMDA receptors,' have a detrimental effect," says Dr. Lynn Raymond, a professor in the UBC Department of Psychiatry, a member of the Brain Research Centre at UBC Hospital, and co-director of the Huntington's Disease Medical Clinic.

"Our study shows an increase in the number of extrasynaptic NMDA receptors, shifting the balance between these opposing cellular mechanisms in animal models of early stages of Huntington's disease," Raymond says.

While further work still needs to be done to determine how the genetic mutation causes the excessive number and activity of NMDA receptors to localize outside the synapses, the researchers did find a way to mitigate damage and slow disease progression at early stages of the disease - using Memantine, a drug currently used to treat Alzheimer's disease.

"Memantine in low dose works by preferentially blocking the activity of NMDA receptors outside the synapse," says Dr. Michael Hayden, director of the Centre for Molecular Medicine and Therapeutics, professor in the UBC Department of Medical Genetics, and co-author on the study.

"It was previously shown to reverse deficits and damage in late stages of animal models of Huntington's disease, but we found it could improve learning and cell survival signaling even at early stages of the disease," says Hayden. "A small human clinical trial of Memantine for Huntington's disease has also recently shown positive effects. Larger, international clinical trials are now being planned."

"Memantine's beneficial effects appear to be dose-specific," Raymond adds. "Before it can be prescribed to treat Huntington's disease, we need to know how to determine appropriate dosing and whether it interferes with other essential cellular and brain functions."

This study was funded by the Canadian Institutes of Health Research, Cure Huntington Disease Initiative, Michael Smith Foundation for Health Research, Heart & Stroke Foundation of BC & Yukon, Huntington's Disease Society of America, and the Huntington Society of Canada.

Source: Melissa Ashman

University of British Columbia

Sobering Statistics about Alzheimer's Disease

2010-01-27T13:01:00.001-07:00

By the time you finish reading this article a few more people will be officially suffering from Alzheimer's disease.

Here is a startling perspective.

It is not unusual for a person working on Wall Street (New York) to spend a total of three hours a day commuting to and from work. Many of these people live on Long Island, in Connecticut and New Jersey.

There are 180 minutes in three hours. There are 10,800 seconds in three hours.

While these people are commuting to and from work each day, another 154 persons are diagnosed with Alzheimer's.

Each day, 1,232 people are diagnosed with Alzheimer's.

Each week, 8,634 people are diagnosed with Alzheimer's.

A recent Harris Interactive poll showed that more than 100 million Americans have been touched by Alzheimer's. More than 33 million Americans are worried about Alzheimer's disease.

Startling numbers.

Alzheimer's disease is a death sentence. Brain death. A typical person takes from 5-20 years to die. It is not unusual for the disease to take more than a decade to kill someone.

When most people think about Alzheimer's they think about a person losing their memory. Persons that know someone suffering from Alzheimer's disease watch them lose their ability to brush their teeth, take a shower, put on their cloths, go to the bathroom, and eat.

They await the worse day of them all -- the day the person suffering from Alzheimer's won't know them. Or anyone for that matter.

Alzheimer's disease is sinister and ugly.

If you don't know someone directly or indirectly that is suffering from Alzheimer's you will soon. It might have happened while you were reading this article.

By Bob DeMarco, Alzheimer's Reading Room

Discovery Of Compounds That Help Protect Nerve Cells

2010-01-25T10:02:00.001-07:00

Scientists at Duke University Medical Center have found some compounds that improve a cell's ability to properly "fold" proteins and could lead to promising drugs for degenerative nerve diseases, including Huntington's disease, Alzheimer's disease and Parkinson's disease.

Misfolded proteins in nerve cells (neurons) are a common factor in all of these diseases. The Duke team has identified many new chemicals that activate a master regulator to increase the supply of "protein chaperone" molecules that help fold proteins properly.

The scientists further explored one of the candidate molecules to activate the master regulator of chaperone gene expression, Heat Shock Factor 1 (HSF1), to learn whether it would work in model systems of Huntington's disease, a devastating neurodegenerative disease of protein misfolding.

They were able to show that the molecule stimulated protein chaperones in cells and in an animal system. The damage to early-state rat neurons was much lower in cells pre-treated with the HSF1 activator, and damage to the neurons of fruit flies that had a Huntington's-like disorder was also greatly reduced.

Previous studies suggested that elevating the abundance of protein chaperones is effective in treating cell and animal models of Huntington's and Parkinson's diseases. This work provides a new approach to address the root cause of these diseases -- protein misfolding. Earlier attempts had used heat shock and other approaches that stress a nerve cell in order to produce more chaperone molecules, but at a cost of damaging the cell to save it.

"The advantage of our screen is that it identifies molecules that can elevate the levels of chaperones without inducing cellular stress and that don't inhibit a key protein chaperone called Hsp90 that is needed for cells to function normally," said senior author Dennis J. Thiele, Ph.D., Professor of Pharmacology and Cancer Biology. "We found a creative way to identify new molecules that can activate the body's natural protein folding machinery."

The research was published in the Jan. 19 online issue of PLoS Biology.

Lead author Daniel Neef, Ph.D., says they used genetically altered yeast to find compounds that might aid chaperone development. The scientists took yeast with a deleted HSF1 (master regulator) gene and inserted the related human HSF1 gene. These yeast, however, still weren't able to activate human HSF1 on their own, and in effect, died. They needed an additional molecule to make human HSF1 become active

The team put these "humanized yeasts" into wells and started testing compounds that would provide the missing link. In several of the wells, if the compound worked, the yeast started multiplying. "Out of over 12,000 compounds tested from chemical libraries, about 50 compounds worked," Neef said. The team decided to explore one of these compounds (HSF1A) in further experiments.

"The humanized yeast-based screening results in our study provide a way to identify new classes of small molecules, small enough to penetrate the blood-brain barrier to work in neurons, in flies as well as in humans," Thiele said. "These small molecules may be effective therapies in neurodegenerative diseases caused by protein conformational disorders such as Huntington's, Alzheimer's and Parkinson's disease."
The scientists found that HSF1A could stimulate more protein chaperones and reduce the protein misfolding. They showed that adding a small amount of HSF1A to the developing rat neurons kept the proteins dissolved throughout the cell, rather than clumping visibly as speckled areas (as seen under microscopes).
"We enhanced the cells' viability by four or five times by pre-treating them with this molecule," Neef said. "Otherwise, the cells would have died."

They used fruit flies with Huntington's disease for experiments to prove that the principle would work in an animal. Adding HSF1A to the fly's food produced more chaperone molecules in their neurons. This suggests that the molecule could travel from the fly's stomach into its circulation and cross a barrier to the fly brain.
In the key experiment, the Huntington's disease flies received either their usual food or food plus HSF1A. Those with untreated food developed eyes with dying photoreceptor neurons and lacking the normal red color. Those that ate HSF1A went on to have normal-colored eyes, indicating a repair had taken place, just by eating food laced with the promising compound.

Michelle Turski, now with Stanford University, was a co-author of the study. The work was supported by grants from the National Institutes of Health.

Source: Mary Jane Gore
Duke University Medical Center

Missed and Delayed Diagnosis of Dementia in Primary Care: Prevalence and Contributing Factors

2010-01-25T09:55:00.002-07:00

Dementia is a growing public health problem for which early detection may be beneficial. Currently, the diagnosis of dementia in primary care is dependent mostly on clinical suspicion on the basis of patient symptoms or caregivers' concerns and is prone to be missed or delayed. We conducted a systematic review of the literature to ascertain the prevalence and contributing factors for missed and delayed dementia diagnoses in primary care. Prevalence of missed and delayed diagnosis was estimated by abstracting quantitative data from studies of diagnostic sensitivity among primary care providers. Possible predictors and contributory factors were determined from the text of quantitative and qualitative studies of patient, caregiver, provider, and system-related barriers. Overall estimates of diagnostic sensitivity varied among studies and seemed to be in part a function of dementia severity, degree of patient impairment, dementia subtype, and frequency of patient-provider contact. Major contributory factors included problems with attitudes and patient-provider communication, educational deficits, and system resource constraints. The true prevalence of missed and delayed diagnoses of dementia is unknown but seems to be high. Until the case for dementia screening becomes more compelling, efforts to promote timely detection should focus on removing barriers to diagnosis.

By Bradford, Andrea MA; Kunik, Mark E. MD; Schulz, Paul MD; Williams, Susan P. MD; Singh, Hardeep MD, MPH

Should Dad Still Be Driving?

2010-01-25T09:52:00.001-07:00

Most people remember learning to drive and the feeling of independence it gave them. This is much of the reason it is so hard for an older adult to give up driving. When addressing the issues of driving with a parent, it is important to understand why driving is important to them. Is it an independence issue? Is it because they need transportation to appointments and errands? Is it an issue of control over their life? If transportation is the concern, then having alternative options to assist them in getting to appointments, the grocery store and other errands will be critical. If independence or control is the issue, it may be helpful to point out that this is not about taking away their independence or control, it is about their safety and equally important, the safety of others on the road. Many times older adults are less concerned about their own safety and well being than they are of the safety and well being of others, especially children.

This issue may be better received if presented by a person in a position of respect, such as a physician or an attorney. Another option is for a comprehensive assessment by a Certified Care Manager. In addition to assessing and making recommendations about the client’s current functional level, the appropriateness of their living environment and their overall safety, the Care Manager can assess driving safety and alternatives to driving. Many times information which will not be well received by the older adult is better delivered by a neutral third party than it is from a family member, especially a child.

By Heather Frenette, RN, MSN, CMC

Dealing with Difficult Behavior Caused by Dementia and Alzheimer's

2010-01-08T14:09:00.002-07:00

By Bob DeMarco

I often get asked question about how I deal with my mother when she evidences erratic behavior.
I read these six coping strategies for dementia-related behavior problems some time ago. Dr. Peter Rabins is a renowned Johns Hopkins neurologist. He touches on the following behaviors: outbursts, agitation, aggression, wandering, vocalizations, hoarding and hiding things, and inappropriate sexual behavior.

People with dementia often exhibit behaviors that are frustrating, embarrassing, and sometimes even dangerous to the caregiver and others.

These may include angry outbursts, agitation, aggression, wandering, vocalizations, hoarding or hiding things, and inappropriate sexual behavior. For many caregivers, these difficult behaviors are the most challenging and exhausting aspect of caring for a person with dementia.

Unfortunately, the available medications to treat Alzheimer’s disease have little effect on behavioral problems.

In their groundbreaking book on Alzheimer’s caregiving --The 36 - Hour Day -- Peter Rabins, M.D. (author of the Johns Hopkins Memory White Paper), and Nancy Mace discuss the six R’s of managing difficult behavior in people with dementia. They are:

* Dementia Strategy 1 -- Restrict. First, calmly attempt to get the person to stop the behavior, especially if the behavior is potentially dangerous.

* Dementia Strategy 2 -- Reassess. Consider what might have provoked the behavior. Could a physical problem (toothache, urinary tract infection, osteoarthritis) be behind the agitation or anger? Is a particular person or the noise level in the room triggering the negative reaction? Could the time of day and fatigue be contributing to the problem?

* Dementia Strategy 3 -- Reconsider. Put yourself in the dementia patient’s shoes. Try to imagine what it must be like to not understand what is happening to you or to be unable to accomplish a simple task. Consider how frustrating or upsetting the current situation or environment might be for a person with dementia.

* Dementia Strategy 4 -- Rechannel. Try to redirect the behavior to a safer, less disruptive activity. For example, if the person constantly disassembles household items, try finding simple unused devices, such as an old telephone or a fishing reel, that can be taken apart and put back together repeatedly. For someone who hoards or hides things, put away valuables and replace them with an array of inexpensive items. Distraction often works well to curtail disruptive repetitive behaviors and restlessness. For example, try asking the person you’re caring for to “help” with simple tasks, such as holding spoons or potholders while you cook.

* Dementia Strategy 5 -- Reassure. The demented person’s brain injury and the resulting confusion and frustration can lead to anger, anxiety, and outright fear in certain situations. Calmly reassure the person that everything is okay and that you will continue to take care of him or her.

* Dementia Strategy 6 -- Review. After an unsettling experience with your loved one, take time to review how you managed the problem and what you might have done differently. Think about what may have triggered the problem, how it might have been avoided, and what you might try the next time a similar situation arises. It also helps to create a patient-friendly environment. This might include soothing music in the background; pictures, words, or arrows to help orient the person in the house; or a secure place to sit outside or walk in the backyard.

Source John Hopkins Health Alerts

Are You Prepared For An Emergency?

2010-01-05T15:20:00.001-07:00

By Heather Frenette, RN, MSN, CMC, Chief Operating Officer
The Sun Valley Group, Inc.
Arizona Care Management

In the past, most Americans lived their lives without any emergency plans. Times have changed. Fear of another terrorist attack, an increase in crime and more children living away from their parents has caused us to look more closely at contingency plans. Although many people have a Medical or Financial Power of Attorney in place, most people do not have a basic plan in place for other types of emergent situations. Do you have food, water, batteries and other emergency supplies available for a catastrophic event? Do you have a plan for the more common types of crises seniors face?
What would those who depend on you do if you got hit by a bus, or had a stroke? What would you do if your spouse were unable to take care of him or herself? These situations happen every day, and most of us do not have a plan in place. Unfortunately, without a plan these emergencies often become a crisis and families end up making quick, uninformed decisions to deal with the crisis. Those who have planned ahead and put a plan in place are usually able to make better decisions because they have more time, information and resources.

All of us have preferences for handling emergencies, our finances, medical decisions, legal matters and end of life choices. The problem is that we often do not discuss our preferences with anyone, even our spouse, children or Power of Attorney. These issues can be difficult to discuss, so often we just avoid the topic all together, tell ourselves we will deal with it “tomorrow” or assume our loved ones or nominated Power of Attorney will know our wishes and be able to make decisions the way we would have wanted. Unfortunately, if you do not discuss these topics, your loved ones will not have the information necessary to make the choices you would have made if you had been able to do it yourself.

If you or your loved one are uncomfortable talking about these issues, consider having an independent third party talk to you and your loved one. A Certified Geriatric Care Manager (GCM) can be a valuable assistance for discussing these topics. GCMs are independent, knowledgeable about resources available in the community and will know the questions to ask to gather important information for the contingency plan. Some of the topics a GCM will address include Medical such as current medical providers, current medical conditions, current medications and allergies. Secondly, legal, such as location of legal documents, they will verify that the people nominated in legal documents have a copy of the document and are willing to serve if needed. Thirdly, end of life, such as feelings about death, importance of dying at home, feelings about Hospice, burial and cremation and funeral/memorial preferences. Be specific! Fourth, emergency assistance, such as whom will be called first/second in the event of an emergency, Is there someone local who can assist if family lives far away? Lastly, financial, such as the location of bank/investment accounts, safe box and keys, financial documents and who is monitoring bank and credit card statements?

A great way to have an umbrella of these services would be to bring these needs to us. Our parent company, The Sun Valley Group, Inc., is a Professional Fiduciary Service designed to meet the needs of the incapacitated population. Our business is a vocation of compassion and caring, meeting clients' needs with consideration and dignity. Professional fiduciaries act by court appointment (guardian, conservator, trustee, personal representative) and as agents under powers of attorney. Being someone's fiduciary can be far more complex than just accounting for an individual's financial situation. The work can range from assessing the needs of the client, selecting a new home, buying furniture, and arranging for caregivers; to managing investments, controlling visitation schedules among warring family members, and handling burial arrangements. With Arizona Care Management all the needs listed above can be met.

Once you have a plan in place, share it with anyone who could be responsible for making these decisions. If you are geographically distant from the person(s) who will be acting on your behalf in an emergency, look for a local GCM who can be available for emergencies. GCMs are valuable because not only do they know the local resources, but they can also be available on an emergency basis to get things stabilized while the nominated agent is in route. The GCM can also take a proactive roll, making recommendations to help prevent potential crisis or monitoring unstable situations.

Whether you work with a GCM or do it yourself, take the time to put a contingency plan in place. It will give you and your loved one peace of mind knowing you have a plan in place for an emergency. You may never need it, but it is good to know it is there if you do!

Arizona Resource Links

http://www.sunvalleygroup.com/- Licensed Fiduciary

http://www.azcaremgt.com/- Certified Care Management

Alzheimer's Disease Defined

2010-01-05T15:10:00.001-07:00

Alzheimer's disease (pronounced Altz-hi-merz) is a progressive, degenerative disease that attacks the brain and results in impaired memory, thinking, and behavior. It is the most common form of dementia that affects over 4 million Americans. More than 100,000 die of Alzheimer's disease annually, which makes it the fourth leading cause of death in adults, after heart disease, cancer, and stroke.

Myths
By Alzheimer's Association

Myth 1: Memory loss is a natural part of aging.

Reality: In the past people believed memory loss was a normal part of aging, often regarding even Alzheimer’s as natural age-related decline. Experts now recognize severe memory loss as a symptom of serious illness.
Whether memory naturally declines to some extent remains an open question. Many people feel that their memory becomes less sharp as they grow older, but determining whether there is any scientific basis for this belief is a research challenge still being addressed.

Myth 2: Alzheimer’s disease is not fatal.

Reality: Alzheimer's disease has no survivors. It destroys brain cells and causes memory changes, erratic behaviors and loss of body functions. It slowly and painfully takes away a person's identity, ability to connect with others, think, eat, talk, walk and find his or her way home.

Myth 3: Only older people can get Alzheimer's

Reality: Alzheimer's can strike people in their 30s, 40s and even 50s. This is called younger-onset Alzheimer's. In 2009, it is estimated that there are as many as 5.3 million people living with Alzheimer’s disease in the United States. This includes 5.1 million people age 65 and over and 200,000 people under age 65 with younger-onset Alzheimer’s disease.

Parkinson's Disease Defined

2010-01-05T15:06:00.002-07:00

Parkinson's disease (PD) is a progressive disorder of the central nervous system, which affects more than one million Americans. Individuals with PD lack the substance dopamine, which is important for the central nervous system's control of muscle activity. Parkinson's disease is often characterized by tremors, stiffness in limbs and joints, speech impediments, and difficulty in initiating physical movement. Late in the course of the disease, some patients develop dementia and eventually Alzheimer's disease. Conversely, some Alzheimer patients develop symptoms of Parkinson's disease. Medications such as levodopa, which converts itself into dopamine once inside the brain, and depreynl, which prevents degeneration of dopamine-containing neurons, are used to improve, diminish, or reduce motor symptoms in PD patients, but do not correct the mental changes that occur.

Signs and Symptoms
By National Parkinson Foundation

The loss of dopamine production in the brain causes the primary symptoms of Parkinson's disease. The key signs of Parkinson's disease are:
Tremor (shaking)

Slowness of movement

Rigidity (stiffness)

Difficulty with balance

Other signs of Parkinson's disease may include:
Small, cramped handwriting

Stiff facial expression

Shuffling walk

Muffled speech

Depression

Who gets Parkinson's disease?

Parkinson's disease affects both men and women in almost equal numbers. It shows no social, ethnic, economic or geographic boundaries. In the United States, it is estimated that 60,000 new cases are diagnosed each year, joining the 1 million Americans who currently have Parkinson's disease. While the condition usually develops after the age of 65, 15% of those diagnosed are under 50.

Huntington's Disease Defined

2010-01-05T15:04:00.003-07:00

Huntington's disease is an inherited, degenerative brain disease, which affects the mind and body. The disease usually begins during mid-life, and is characterized by intellectual decline, and irregular and involuntary movements of the limbs or facial muscles. Other symptoms of Huntington's disease include personality change, memory disturbance, slurred speech, impaired judgment, and psychiatric problems. Huntington's disease currently affects more than 25,000 Americans. The diagnostic process for Huntington's disease includes an evaluation of family medical history, recognition of typical movement disorders, and CAT brain scanning. A genetic marker linked to Huntington's disease has been identified on chromosome 4 and researchers are working on locating the gene itself. Although there is no treatment available to stop the progression of the disease, the movement disorders and psychiatric symptoms can be controlled by drugs.

Early Symptoms
By Huntington's Disease Society of America

Early symptoms of Huntington's Disease may affect cognitive ability or mobility and include depression, mood swings, forgetfulness, clumsiness, involuntary twitching and lack of coordination. As the disease progresses, concentration and short-term memory diminish and involuntary movements of the head, trunk and limbs increase. Walking, speaking and swallowing abilities deteriorate. Eventually the person is unable to care for him or herself. Death follows from complications such as choking, infection or heart failure.
HD typically begins in mid-life, between the ages of 30 and 50, though onset may occur as early as the age of 2. Children who develop the juvenile form of the disease rarely live to adulthood.

HD affects males and females equally and crosses all ethnic and racial boundaries. Each child of a person with HD has a 50/50 chance of inheriting the fatal gene. Everyone who carries the gene will develop the disease. In 1993, the HD gene was isolated and a direct genetic test developed which can accurately determine whether a person carries the HD gene. The test cannot predict when symptoms will begin. However, in the absence of a cure, some individuals "at risk" elect not to take the test.

Creutzfeldt-Jakob Disease Defined

2010-01-05T15:00:00.002-07:00

Creutzfeldt-Jakob Disease (CJD) is a rare, fatal brain disorder caused by a transmissible infectious organism, probably a virus. Early symptoms of CJD include failing memory, changes in behavior, and a lack of coordination. As the disease progresses, usually very rapidly, mental deterioration becomes pronounced, involuntary movements (especially muscle jerks) appear, and the patient may become blind, develop weakness in the arms or legs, and ultimately lapse into a coma. The death of CJD patients is usually caused by infections in the bedridden, unconscious patient. Like Alzheimer's disease, a definitive diagnosis of CJD can be obtained only through an examination of brain tissue, usually at autopsy.

"In the early stages of the disease, CJD patients may exhibit failing memory, behavior changes, impaired coordination and/or visual disturbances. As the illness progresses, mental deterioration becomes more pronounced, and involuntary movements, blindness, weakness of extremities, and, ultimately, coma may occur. sCJD usually occurs later in life, and typically leads to death within a few weeks or months to one year following the onset of symptoms - in the United States, the mean age of death from sCJD is 67 years" Richard T. Johnson, M.D., Special Advisor to the National Institute of Neurological Disorders and Stroke.

There are three types of CJD:
By Creutzfeldt-Jakob Disease Foundation

Sporadic (sCJD)

Familial (fCJD) - Genetic

Acquired:
Iatrogenic Contaminated Surgical Instruments

Contaminated Dura mater transplant

Contaminated Corneal transplant

Contaminated Human Growth Hormone

Contaminated beef (vCJD)

The sporadic form (meaning from unknown cause) is the prevalent form in the US-85% of cases. More information can be found in the CJD pamphlet found on the website. As of August 2005 there are no known cases of endemic vCJD (ingestion of contaminated beef) in the U.S.

Diagnosis of CJD is very difficult and often happens through a process of elimination of other diseases. The diagnosis of CJD can only be confirmed through a brain biopsy or autopsy. Cerebral spinal fluid testing positive for the 14-3-3 protein is often used to confirm a possible diagnosis, this test, however, can be inconclusive.

Frontal Lobe Dementia Defined

2010-01-05T14:55:00.002-07:00

Frontal lobe dementia typically affects patients at a very early age, and usually affects females more than males. In this type of dementia, there is no true memory loss in the early stages. Instead, there are changes in personality, ability to concentrate, social skills, motivation and reasoning. Because of their true nature, these symptoms are often confused with psychiatric disorders. There are gradual changes in one’s customary way of behaving and responding emotionally to others. Memory, language and visual perception are usually not impaired for the first two years, yet as the disease progresses and spreads to other areas of the brain, they too may become affected.

Frontal lobe dementia affects the part of the brain that regulated comportment, insight and reasoning. “Comportment” is a term that refers to social behavior, insight, and “appropriateness” in different social contexts. Normal comportment involves having insight and the ability to recognize what behavior is appropriate in a particular social situation and to adapt one’s behavior to the situation.

Symptoms of Frontotemporal Dementia
By Northwestern University, Feinburg School of Medicine

Impairments in social skills

- inappropriate or bizarre social behavior (e.g., eating with one's fingers in public, doing sit-ups in a public restroom, being overly familiar with strangers)

- "loosening" of normal social restraints (e.g., using obscene language or making inappropriate sexual remarks)

Change in activity level

- apathy, withdrawal, loss of interest, lack of motivation, and initiative which may appear to be depression but the patient does not experience sad feelings.

- in some instances there is an increase in purposeless activity (e.g., pacing, constant cleaning) or agitation.

Decreased Judgment

- impairments in financial decision- making (e.g., impulsive spending)

- difficulty recognizing consequences of behavior

- lack of appreciation for threats to safety (e.g., inviting strangers into home)

Changes in personal habits

- lack of concern over personal appearance

- irresponsibility

- compulsiveness (need to carry out repeated actions that are inappropriate or not relevant to the situation at hand.

Alterations in personality and mood

- increased irritability, decreased ability to tolerate frustration

Changes is one's customary emotional responsiveness

- a lack of sympathy or compassion in someone who was typically responsive to others' distress

- heightened emotionality in someone who was typically less emotionally responsive

Persons with this form of dementia may look like they have problems in almost all areas of mental function. This is because all mental activity requires attention, concentration and the ability to organize information, all of which are impaired in frontal lobe dementia. Careful testing, however, usually shows that most of the problems stem from a lack of persistence and increased inertia.

Picks Disease Defined

2010-01-05T14:52:00.002-07:00

Picks disease accounts for 20% of the frontal lobe dementia cases and is identified under the microscope by abnormal particles called “Pick bodies”. Disturbances in personality, behavior, and orientation may precede and initially be more severe than memory defects. Like Alzheimer's disease, a definitive diagnosis is usually obtained at autopsy.

What is Frontotemporal Dementia ?
By National Institute of Neurological Disorders and Stroke

Frontotemporal dementia (FTD) describes a clinical syndrome associated with shrinking of the frontal and temporal anterior lobes of the brain. Originally known as Pick’s disease, the name and classification of FTD has been a topic of discussion for over a century. The current designation of the syndrome groups together Pick’s disease, primary progressive aphasia, and semantic dementia as FTD. Some doctors propose adding corticobasal degeneration and progressive supranuclear palsy to FTD and calling the group Pick Complex. These designations will continue to be debated. As it is defined today, the symptoms of FTD fall into two clinical patterns that involve either (1) changes in behavior, or (2) problems with language. The first type features behavior that can be either impulsive (disinhibited) or bored and listless (apathetic) and includes inappropriate social behavior; lack of social tact; lack of empathy; distractability; loss of insight into the behaviors of oneself and others; an increased interest in sex; changes in food preferences; agitation or, conversely, blunted emotions; neglect of personal hygiene; repetitive or compulsive behavior, and decreased energy and motivation. The second type primarily features symptoms of language disturbance, including difficulty making or understanding speech, often in conjunction with the behavioral type’s symptoms. Spatial skills and memory remain intact. There is a strong genetic component to the disease; FTD often runs in families.

Is there any treatment?

No treatment has been shown to slow the progression of FTD. Behavior modification may help control unacceptable or dangerous behaviors. Aggressive, agitated, or dangerous behaviors could require medication. Anti-depressants have been shown to improve some symptoms.

Dementia with Lewy Bodies Defined

2010-01-05T14:48:00.004-07:00

Dementia with Lewy Bodies, first described in 1961, has been increasingly recognized over the past 5-10 years. Currently it is the 2nd most common form of dementia. Abnormal brain cells called “lewy bodies” are distributed in varying degrees throughout all areas of the brain. It is a dementia very similar to AD but may progress more rapidly. The main features of Lewy Body are (1) the development of features similar to Parkinson’s disease (2) fluctuation in the severity of condition on a day-to-day basis and (3) development of visual hallucinations and delusions.

Diagnosis
By Lewy Body Dementia Association

An experienced clinician within the medical community should perform a diagnostic evaluation. If one is not available, the neurology department of the nearest medical university should be able to recommend appropriate resources or may even provide an experienced diagnostic team skilled in Lewy body dementia.

A thorough dementia diagnostic evaluation includes physical and neurological examinations, patient and family interviews (including a detailed lifestyle and medical history), and neuro-psychological and mental status tests. The patient's functional ability, attention, language, visuospatial skills, memory and executive functioning are assessed. In addition, brain imaging (CT or MRI scans), blood tests and other laboratory studies may be performed. The evaluation will provide a clinical diagnosis. Currently, a conclusive diagnosis of LBD can be obtained only from a postmortem autopsy for which arrangements should be made in advance. Some research studies may offer brain autopsies as part of their protocols. Participating in research studies is a good way to benefit others with Lewy body dementia.

Wernicke-Korsakoff Syndrome Defined

2010-01-05T14:45:00.003-07:00

Wernicke-Korsakoff syndrome is a two-stage brain disorder caused by a deficiency of thiamine (vitamin B-1). Wernicke encephalopathy is the first, acute phase and Korsakoff psychosis is the long-lasting, chronic stage. The most common cause is alcoholism, but the syndrome can also be associated with AIDS, cancers that have spread through the body, very high levels of thyroid hormone, and certain other conditions.

Symptoms of Wernicke-Korsakoff
By Alzheimer's Association

•Confusion, permanent gaps in memory and problems with learning new information.

•Individuals may have a tendency to “confabulate,” or make up information they can’t remember; they are not “lying,” but may actually believe the invented explanation.
•Unsteadiness, muscle weakness and lack of coordination.

•Recent research suggests a genetic variation called APOE-e4 may be associated with a higher risk of Wernicke-Korsakoff in individuals who drink heavily. APOE-e4 is also linked to a higher risk of developing Alzheimer’s disease.

Normal Pressure Hydrocephalus Defined

2010-01-05T14:43:00.002-07:00

Normal pressure hydrocephalus is an uncommon disorder, which involves an obstruction in the normal flow of cerebrospinal fluid. This blockage causes a buildup of cerebrospinal fluid on the brain. Symptoms of normal pressure hydrocephalus include dementia, urinary incontinence, and difficulty in walking. Presently, the most useful diagnostic tools are the neuroimaging techniques (i.e. MRI). Normal pressure hydrocephalus may be caused by any of several factors including meningitis, encephalitis, and head injuries. In addition to treatment of the underlying cause, the condition may be corrected by a neurosurgical procedure (insertion of a shunt) to divert the fluid away from the brain.

Education and Support
By Hydrocephalus Association

Hydrocephalus is a chronic neurological condition characterized by an increased volume of cerebrospinal fluid (CSF) within spaces inside the brain. While there's no known cure for hydrocephalus, the future holds promise. Recent research gives great hope that we may one day find a cure. In the meantime, gradual advances in technology as well as diagnostic and treatment protocols are helping more and more people with hydrocephalus to lead full and active lives.

Although hydrocephalus (hi-dro-sef-a-lus) is not yet a household word, it is NOT uncommon and you are not alone. Over a million people of all ages currently live with hydrocephalus in the United States, though it occurs all over the world. Hydrocephalus knows no socioeconomic, gender or ethnic boundaries. Of every 1,000 babies born in this country, one or two will have hydrocephalus. It is the most common reason for brain surgery in children, but it can also be diagnosed in any decade of life. Experts estimate that hundreds of thousands of older adults have normal pressure hydrocephalus (NPH), which often goes undetected or is misdiagnosed as untreatable dementia, Alzheimer’s or Parkinson’s.

Mild Cognitive Impairment Defined

2010-01-05T14:37:00.005-07:00

Mild cognitive impairment (MCI) a condition in which a person has problems with memory, language, or another mental function severe enough to be noticeable to other people and to show up on tests, but not serious enough to interfere with daily life.

Because the problems do not interfere with daily activities, the person does not meet criteria for being diagnosed with dementia. The best-studied type of MCI involves a memory problem and is called “amnestic MCI.”

Symptoms
By Mayo Clinic staff

The forgetfulness of normal aging is minor. You misplace your car keys or lose your car in the parking garage. Perhaps you can't remember the name of a former co-worker when you meet unexpectedly at the grocery store. This is nothing to worry about.

But red flags should go up if you start forgetting things you typically remember, such as doctor's appointments or your weekly pinochle game. This happens to everyone now and then, but if a pattern develops, it could be a symptom of mild cognitive impairment.

Commonly used criteria for a diagnosis of mild cognitive impairment are:

■Deficient memory, preferably confirmed by another person

■Essentially normal judgment, perception and reasoning skills

■Largely normal activities of daily living

■Reduced performance on cognitive tests, compared with other people of similar age and educational background

People with mild cognitive impairment may also experience:
■Depression

■Irritability

■Anxiety

■Aggression

■Apathy

Alzheimer's Disease Network Newsletter Jan/2010

2010-01-05T13:56:00.000-07:00

Alzheimer's Disease Newsletter Jan/2010

Study: Ginkgo biloba has no effect on Alzheimer's, dementia

2010-01-04T16:26:00.001-07:00

By Elizabeth Weise, USA TODAY

The popular botanical ginkgo biloba does not improve memory nor does it prevent cognitive decline in older people, according to the largest and longest scientific study ever undertaken to look at the supplement.

An extract derived from the ginkgo tree, ginkgo biloba has been touted since the 1970s by the supplement industry and others as an aid to improving memory, cognitive impairment, dementia and Alzheimer's disease. Ginkgo extract has been used in traditional Chinese medicine for more than 500 years, according to the American Botanical Council.

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The study finding is "disappointing news," says Steven DeKosky, dean of the University of Virginia School of Medicine and the study's senior author. The only positive thing the researchers found is that ginkgo appears to be safe, he says.

The results are from the Ginkgo Evaluation of Memory study, funded by the National Center for Complementary and Alternative Medicine, a center of the National Institutes of Health. The randomized, double-blind and placebo-controlled study was conducted at six medical centers and involved more than 3,000 people between ages 72 and 96 for seven years. The report is in today's Journal of the American Medical Association.

The first set of results from the study, published last year, found that a twice-daily dose of 120 milligrams of ginkgo biloba extract was not effective in reducing the incidence of Alzheimer's dementia or dementia overall.
This new paper looked at the same results to see if ginkgo biloba extract had any effect on cognitive decline in older adults, specifically memory, visual-spatial construction, language, attention, psychomotor speed and executive function. It found no effect.

"It just continues to show that in properly designed, placebo-controlled studies, we can't seem to find an effect for ginkgo biloba," says Lon Schneider, an Alzheimer's and gerontology expert at the University of Southern California. The size of this study is larger than all previous ginkgo biloba studies combined, he says.
Douglas MacKay, vice president for scientific and regulatory affairs at the Council for Responsible Nutrition, a supplement industry trade group, disputes the study's findings.

"There is a large body of previously published evidence, as well as ongoing trials, which suggest that ginkgo biloba is effective for helping to improve cognitive impairment in older adults," he says.

U.S. sales for ginkgo biloba were $99 million in 2008, down 8% from 2007 but still placing it the 8th most popular herb and botanical that the Nutrition Business Journal tracks.

Huge wave of dementia cases coming, warns report

2010-01-04T16:07:00.001-07:00

By CTV.ca News Staff

So many Canadians are expected to develop Alzheimer's disease and dementia in the next 30 years that a new case will develop every two minutes unless preventive measures are taken, a new report says.

The report, released Monday by the Alzheimer Society, says the prevalence of dementia will more than double in the next 30 years.

By 2038, almost three per cent of Canada's population will be affected by dementia, and about 257,800 new cases will be diagnosed per year.

Today, dementia costs Canada about $15 billion a year; those costs could soon increase by 10-fold.

"If nothing changes, this sharp increase in the number of people living with dementia will mean that by 2038, the total costs associated with dementia will reach $153 billion a year," David Harvey, principal spokesperson for the Alzheimer Society project called "Rising Tide: The Impact of Dementia on Canadian Society," said in a statement.

That amounts to a cumulative total of $872 billion over the 30-year period.

Much of the increase in cases can be attributed to the "greying" of Canada. With Canadians living longer and baby boomers aging, there is expected to be a spike in many chronic diseases that come with age, such as heart disease, arthritis and cancer.

But the expected rising rates of dementia are not just about demographics; poor lifestyles also play a role.

It's been well documented that regular physical and mental exercise can delay the onset of dementia, which includes Alzheimer's disease and other progressive diseases that destroy brain cells. For that reason, the report recommends that all Canadians over 65 without dementia increase their physical activity by 50 per cent.
"Prevention is where we need to be starting," Harvey told Canada AM.

"We know that healthy eating and active living are antidotes to dementia."

The "Rising Tide" report calls on government to fund more health promotion to remind Canadians of the benefits of a healthy lifestyle.

"This intervention would reduce the number of people diagnosed with dementia, resulting in a reduction in the pressure on long-term care facilities, community care services and informal caregivers," the report says.

Need for national strategy

Just as important, Harvey says, is the need for Canada's health care system to adapt to accommodate the projected rise in dementia cases.

"Dementia is one of the leading cases of disability amongst older people," Harvey said, noting that the flood of dementia expected in the next 30 years could overwhelm emergency rooms and hospitals.

His group's report calls for more support for informal caregivers -- generally, family members -- who tend to be the ones who care for patients with dementia in the early stages of the disease.
"There are services that can be put in place to support caregivers, and also economic and financial support for caregivers," he said.

By also providing caregivers with skill-building and support programs, caregivers struggling with the overwhelming emotional and financial hardships of providing care may feel better equipped to care for their loved one.

That could go far to delay admission of patients into long-term care facilities, thereby lessening the burden on the health care system.

The report also suggests assigning "system navigators" to each newly diagnosed dementia patient and their caregivers. These case managers would help families navigate the health system to find the right social services for their loved one depending on their stage of dementia.
Some facts about dementia:

The symptoms of dementia include a gradual and continuing decline of memory, changes in judgment or reasoning, mood and behaviour, and an inability to perform familiar tasks.
Dementia can strike adults at any age, but has traditionally been diagnosed in people over 65. However, symptoms start much earlier, and an increasing number of people are being diagnosed in their 50s and early 60s.

Age is the number one risk factor for dementia

Alzheimer's disease, the most common form of dementia, accounts for approximately 64 per cent of all dementias in Canada.

Other related dementias include Vascular Dementia, Frontotemporal Dementia, Creutzfeldt-Jakob Disease and Lewy body Dementia.

There is no known cure for dementia. However, some medications can delay progression of the disease.

Researchers are confident that within five to seven years, there will be treatments that attack the disease process itself, not just the symptoms.

How to decide if your family needs a geriatric-care manager

2010-01-04T15:59:00.001-07:00

By Anya Martin

DECATUR, Ga. (MarketWatch) -- The holidays should be a joyful time of homecoming for families, but sometimes those visits also reveal that elderly parents are more frail or more forgetful than before. Discoveries like these may suggest that it's time to consult a geriatric-care manager.

When Nancy Gratzel's mother had a sudden change in her health requiring placement in a nursing home, Gratzel and her four siblings found themselves overwhelmed by the complex paperwork to qualify for Medicaid coverage. So they turned to Stephen Mielach, a geriatric-care manager based in their community of Toms River, N.J.

"It's a very cumbersome process because you have to find all your parents' documents and follow the trail of their money over the past five years," Gratzel said. "I decided that my time constraints didn't allow me to attend to that. I commute to work, have long work days, and all my siblings are married with children and very active."

Now Mielach also shares a power of attorney with Gratzel to assist her 88-year-old father, now living on his own, with bill-paying -- a task that his wife used to perform exclusively. Her father appreciated the help and began to look forward to Mielach's visits, she said.

"To me, that was a good use of my parents' money which we were going to have to spend anyway [to meet Medicaid qualifications]," Gratzel said. "It afforded me the opportunity to direct my energy towards nicer things, helping my mom adjust to the facility and my dad to living at home alone. They had been married 67 years."

While most seniors and their families do not go so far as to assign power of attorney to geriatric-care managers, members of this growing profession can assist not just with money matters but also with navigating the often complicated decisions about what care is best for mom, dad or another relative.

Sometimes they help resolve a short-term challenge such as Mielach did initially for Gratzel's mother or they may provide assistance over a period of months or years. Sample tasks range from vetting home health aides to assessing whether a senior is able to remain at home or needs to relocate to an assisted-living community or nursing home. They may also accompany seniors to medical appointments and ensure they receive the prescribed follow-up such as lab tests and radiology scans or find contractors and coordinate bids for home repairs, for instance.

Or when a senior has no spouse or children, a geriatric-care manager may take on even more responsibilities to fill that void.

"For people who have family, I become the expert in the family," Mielach said. "For those with no family, I become family for hire."

Boomers' aging parents spur demand

The profession of geriatric-care manager has been around for decades but really has taken off in the past 10 years as the baby boomers increasingly became long-distance caretakers of elderly parents, said Joyce Gray, a Philadelphia-based certified geriatric-care manager who serves on the board of the National Association of Professional Geriatric Care Managers, the industry's trade association. The group's membership has grown from 50 to 2,000 since its 1985 founding.
"There are a lot more older people who don't have someone locally to look after them," Gray said. "The baby boomers also are more used to paying for services and expecting high quality and results."

Another change Gray has noticed is that more people are contacting her proactively rather than in the middle of a crisis such as a broken hip or an Alzheimer's diagnosis, she said.
A decade ago, Ron Fatoullah, a New York-based certified elder law attorney, rarely recommended that his clients consult a geriatric-care manager. Now he refers at least one-third to see one, if only to validate that seniors and their family are making the appropriate care and financial decisions for their health and happiness.

"I have to know that my client is placed in the right facility, and if they're going to be at home, that it's the proper environment with all the safety features they need," Fatoullah said. "The care management assessment heavily dictates how I do my legal work."

In the case of Gratzel's mother, all family members agreed she needed nursing home care. However, geriatric-care managers also can be valuable third-party referees, providing an impartial viewpoint to siblings or children and a parent with different opinions about what is best for the senior, Fatoullah said.

"I've seen a reluctance among seniors to want any care, and if a child mentions it, the parent may bite the child's head off," he added. "But some geriatric-care managers are very good with seniors and letting them know in a constructive way that they do need care."

A background in nursing or social work

Most geriatric-care managers come to the profession from nursing, social work or a handful of other fields related to geriatrics or long-term care, according to NAPGCM.

Before launching his geriatric-care management practice 20 years ago, Mielach, a licensed clinical social worker, was director of social work at a hospital. During that time, he became an expert in tracking down relatives of seniors who were admitted to the hospital and did not have obvious family members. Those responsibilities eventually led to him becoming a court-appointed guardian when no relatives could be found, and he realized that he enjoyed not just the detective work but the chance to improve people's lives.

Mielach even accompanied one New Jersey woman with dementia across the country to move into a New Mexico assisted-living community near close friends.

He also sometimes serves as a health proxy, a legal status which allows him to make medical decisions based on a previous consultation as to the seniors wishes, he said. In a recent example, a client of 12 years had a stroke which robbed her not just of mobility but the ability to speak, and Mielach had to inform the EMS team that she did not want to be taken to the hospital.
"I always go into detail about what values you have so if a situation comes up, I can make decisions consistent with your values," Mielach said. "But in 20 years of doing this, I have never been so confident that someone did not want treatment as with this woman."

Geriatric-case managers typically charge by the hour, and rates vary from $80-$200/hour depending on location, Gray said. Most also charge an initial assessment fee ranging from $300-$800, she added.

Some geriatric-care managers may also agree to a lump sum for a particular service. For example, Mielach charges between $1,000 to $5,000 to research and prepare a Medicaid application, depending on the complexity involved.

While health insurance policies do not cover care-management services, some long-term-care policies do.

How to find a care manager

In the past, finding a geriatric-care manager was very much through word-of-mouth referrals, and asking a hospital discharge planner, psychiatrist or elder law attorney for suggestions in your community is still one good way to start, Gray said.

Another option is to consult NAPGCM's nationwide directory at its Web site, http://www.caremanager.org/. As of January 1, 2010, all NAPGCM members are required to have at least one of four professional certifications: Care Manager Certified (CMC), Certified Case Manager (CCM), Certified Social Work Case Manager (C-SWCM) and/or Certified Advanced Social Work Case Manager (C-ASWCM).

One red flag would be care managers who say they got into the field after helping their own relative but don't have much other experience or have not committed the time to get professional training, Gray said.

You should also be sure to ask for references, and most care managers will offer a free 20- to 30-minute telephone interview so families can get a sense of how they work, their fee schedule and whether their personality is a good match, she added.

"It's important to have a sense of trust right from the start that you can work with this person and that your mother, father, aunt, uncle can work with them, too," Gray said.

More questions to ask include whether the geriatric-care manager is part of a solo or group practice and who covers for them if they are away, she added. Are they available 24 hours a day and on weekends, because that is when many falls and other health crises occur?
Finally, don't hire anyone who accepts financial rewards from nursing homes, home health agencies or other providers. Such practices are directly in conflict with NAPGCM's ethical standards and suggest that the geriatric-care manager may not have a seniors best interests at heart, Gray said.

Geriatric Care Manager's- Certifications and Services

2010-01-04T15:48:00.001-07:00

By Heather Frenette, RN, MSN, CMC

"To families struggling with the needs of aging relatives, the geriatric care manager can be a godsend. This emerging breed of specialist can assess a senior's physical, social, and financial needs and stitch together a patchwork of services to address them."
BusinessWeek, "Sometimes You Need an Ace", By Susan Garland, July 12, 2004.

What is a Geriatric Care Manager?

A Geriatric Care Manager is a health and human services professional, such as a gerontologist, social worker, counselor, or nurse, with a specialized body of knowledge and experience related to aging and elder care issues. A Professional Geriatric Care Manager (PGCM) is a geriatric care manager who is a member of the National Association of Professional Geriatric Care Managers (GCM) and had committed to adhering to the GCM Pledge of Ethics and Standards of Practice. The PGCM assists older adults and persons with disabilities in attaining their maximum functional potential. The PGCM strives to respect t he autonomy of the individual and delivers care-coordination and support services with sensitivity to preserve the dignity and respect of each individual. In addition, the PGCM is an experienced guide and resource for families of older adults and others with chronic needs.

Do I Really Need a Geriatric Care Manager?

Before making the effort, step back a moment and try to determine whether you actually have a problem in which a professional geriatric care manager needs to be involved. Do you have time, inclination, and skills to manage the problems yourself? If you are not sure, ask your clergy, your doctor, a social worker, your financial advisor, or a trusted friend to help you decided if an elder care expert may be helpful in this situation. Enlisting the support of other family member to consult a professional is a good way to build a consensus on the solutions. Other questions that you may wish to consider are:

Are the problems that you or your loved ones are facing becoming larger and more complex than you can comfortably manage?

Are other demands and responsibilities now so great that you are not able to provide the desired level of supervision and attention to your loved one's problems?\
There are many places to find a care manager in your city or state. This website includes a searchable directory of professional geriatric care managers who belong to GCM. You may also want to check with local agencies or hospitals to obtain a list of local referrals. Health professionals and elder law attorneys are other excellent referral sources.

How Do I Benefit From Using a Care Manager?

Care management services are offered in a variety of settings. Professional Geriatric Care Managers (PGCMs) can serve the needs of their clients with the following services:

Short-term or on-going assistance for long distance caregivers or other requiring assistance.

Personalized and compassionate services focusing on the individual's wants and needs.

Accessibility: Care is typically available 24 hours a day; 7 days a week.

Continuity of care management by facilitating family communication, reducing the burden on families and preventing unnecessary expenditures.

Efficiency and flexibility based upon a client-centered approach eliminating bureaucratic constraints.

Cost containment by avoiding inappropriate placements, duplication of services, and crisis intervention to avoid hospitalizations.

Quality control: care management services that follow GCM's Standards of Practice.

Who Uses PGCM Services?

Individuals

Families

Banks and Trust Officers

Physicians and Allied Health Professionals

Attorneys

Hospitals

Social Service Providers

Gerontology Professionals

Senior Housing Communities

Professional Fiduciaries

Questions To Ask When Looking For a Geriatric Care Manager

People calling themselves care managers have many different backgrounds. Very few states have licensing for these professionals; however, many are licensed in their state in other fields. The professional organization (GCM) recognizes the following certifications as being a "Certified Care Manager": CMC, CCM, C-ASWCM and C-SWCM. These require testing and continuing education. It is important for the wise consumer to ask questions. Some of these include:

Are you a member of the National Association of Professional Geriatric Care Managers?

Are you certified as a care manager?

Do you hold other professional licenses or certifications?

How long have you been providing care management service?

Are you available for emergencies?

Does your company also provide home care services?

How will you communicate information tome?

Can you provide me with references?

Care managers do not specialize in all areas. When a care manager says he/she practices "care management", find out which matters he/she handles. You will want to hire someone who regularly handles clients in the area of your concern.

Care managers who primarily work with older adults bring more to their practice than an expertise in geriatrics. They bring knowledge of aging issues that allow them and their staff to overcome the myths relating to aging and to focus on the problems at hand. At the same time, they will bring an experience of working with resources in your community. They are more aware of real life problems, health and otherwise, that emerge as persons age and what tools are available to address them. They are tied into a formal or informal system of social workers, nurses, psychologists, elder law attorneys, advocates, and other elder care professionals who may be of assistance to you.

Once you have found a care manager...

When you have found an appropriate care manager, there will most likely be an on-site assessment. During the assessment, you will be asked to give the care manager an overview of the reason you are seeking help and introduce all the parties involved. Be sure to organize and bring all the information needed.

After you have explained your situation, ask:

What resources will it take to resolve this situation?

Are there any alternative courses of action?

What are the advantages and disadvantages of each alternative?

Who will be working with you?

How many professionals may be involved? What about off-hours and backup?

How are fees computed?

How is travel time and mileage handled?

How are services terminated?

Ask Questions First...

Ask lots of questions before choosing your care manager. Start with the initial phone call. Is the call professionally answered? If you leave a message, is it returned promptly? Of course, this is an indication of the kind of professional relationship you can expect. In addition to the above questions, you should also ask:

What are the primary services provided by this agency/business?

What other service does this agency/business provide?

How many care managers are there in this agency/business?

Is there a fee for the initial consultation and if so, how much is it?

The answers to your questions will assist you in determining whether that particular care manager and agency/business has the qualifications important to you for a successful relationship. If you have a specific issue that requires immediate attention, be sure to inform the care manager of this during the initial telephone conversation.

Discussing Fees...

There are many different ways of charging fees and each care manager will choose to work differently. You will also want to know how often he/she bills. Some care managers bill weekly, some bill monthly, some bill upon completion of work. Ask about these matters at the initial conference and ask for them in writing, so there will be no surprises. If you don’t understand, ask again. If you need clarification, say so. It is very important that you feel comfortable in this area.

In addition to fees, most care managers will charge for out-of-pocket expenses. Out-of-pocket expenses may include charges for mileage, caregiving supplies, long distance telephone calls, and other such costs. Find out if there will be any other incidental costs. Note: There may also be additional fees if outside professionals are called into the case. It is imperative that the care manager receives approval to bring others in before the situation arises, if at all possible.
Be sure to discuss and make sure you have all questions answered before proceeding with an agreement for services. You should expect a written agreement including fees before the commencement of services.

Get It in Writing...

Once you decide to hire the care manager, ask that your arrangement be put in writing. The writing can be a letter or a formal contract. It should spell out what services the care manager will perform for you and what the fee and expense arrangements will be. REMEMBER— even if your agreement remains oral and is not put into writing, you have made a contract and are responsible for all charges for work done by the care manager and his/her staff.

Make It a Good Experience

A positive and open relationship between a care manager and a client is important to successful outcomes. The key to getting there is communication. The communication starts with asking the kinds of questions contained in this document. Use the answers to the questions as a guide not only to the care manager’s qualifications, but also as a way of determining whether you can comfortably work with this person. If your concerns are not responded to professionally and personally, if you don't like the answers to your questions, if you don't like the care manager's reaction to being asked all your questions, or if you simply do not feel relaxed with this particular person, DO NOT HIRE THAT PERSON. Only if you are satisfied with the care manager you have hired from the very start will you trust him or her to do the best job for you. Only if you have established a relationship of open communication will you be able to resolve any difficulties that may arise between the two of you. If you take the time to make sure you are happy and compatible right at the beginning, you can make this a productive experience giving you peace of mind and your family member the highest quality of life possible. You will thank yourself, and your care manager will thank you.

Certifications Endorsed by GCM:

CMC - Care Manager CertifiedNational Academy of Certified Care Managers (NACCM)800-962-2260 (Connecticut)

CCM - Certified Case ManagerCommission for Case Manager Certification847-818-0292 - Box 162 (Illinois)
The Commission for Case Manager Certification (CCMC) is led by elected commissioners who oversee the process of case manager certification. CCMC is nationally accredited and positioned as the most active and prestigious certification organization supporting the case management industry.

National Association of Social WorkersC-SWCM (Certified Social Work Case Manager)C-ASWCM (Certified Advanced Social Work Case Manager)800-638-8799, extension 409
The National Association of Social Work Specialty Certifications, available to CSWE-accredited degreed social workers only, provide a vehicle for recognizing social workers who have met national standards and possess specialized knowledge, skills, and experience. NASW is committed to assisting with the process of certifying social workers and working to emphasize the importance of employing social workers who have specialized training and experience.

Holidays and Alzheimer's

2009-12-28T15:54:00.000-07:00

The holidays are typically a joyous time, a time for friends and family to come together, a time for food and festivities. Holidays with a person coping with Alzheimer’s disease can be a challenge. The activity and noise can be confusing, the gatherings of people can be disruptive, and the lights and sounds can be upsetting. There are things you can do to help make the holidays more manageable.

1. Minimize the loud noises that we often associate with the holidays. A football game on television, holiday music and multiple conversations around a person with Alzheimer’s can be confusing. A calm, quite gathering is usually best. Limiting the number of people at a gathering can also help with the noise factor.

2. Keep decorations simple. Blinking lights and decorative displays can be confusing. Avoid artificial fruits, which can be mistaken for real food. In addition, do not use candles or decorations with an open flame.

3. Keep the day short so that it is not over-stimulating or over-tiring. The same is true for travel.

4. Whenever possible, hold events in familiar places. This will help minimize confusion for a person with memory loss.

5. Engage the person with Alzheimer’s but keep it simple and familiar. Putting ornaments on a tree, decorating cookies or singing familiar holiday songs can be enjoyable options.

6. If the person lives in a facility, try bringing them home for a short visit once or twice beforehand. If the home visit seems too stressful, consider visiting the facility instead. This will help minimize confusion and agitation.

7. Schedule festivities and visits for the best time of day for the person with Alzheimer’s. Typically morning or early afternoon is better than later in the day.

8. Consult a Geriatric Care Manager to assess your loved one and develop a plan of care to help you manage the holiday season.

Celebrating the holidays with a person coping with Alzheimer’s disease requires some planning and may require a change to the prior year’s routine. Following these steps will help make the holiday joyous and less confusing for the person with memory loss. Remember, although Alzheimer’s disease affects a person’s ability to remember, they can still enjoy the holidays in the moment.

By Heather Frenette, RN, MSN, CMC

Chief Operating Officer- Arizona Care Management

Parkinson’s Signs and Symptoms

2009-12-28T15:20:00.000-07:00

There are various Parkinson’s signs and symptoms, some people suffer from all the symptoms others suffer only a few symptoms.

Most people with Parkinson's do not develop all of the symptoms associated with the disease.
Parkinson’s disease might progress quickly and for others it’s a more gradual process over years. Some Parkinson’s sufferers become slowly more disabled and others function fairly well.

Parkinson’s symptoms vary from day to day or even moment to moment. This could be because of the disease process or to the anti-parkinson medication.

Parkinson’s Primary Symptoms:
Bradykinesia: A slowness in controlled movement. It produces difficulty start a movement, or a difficulty finishing movement once it is in progress. It’s because there is a delay in transmitting a signal from the brain to the muscles – this is due to low dopamine in the brain, this produces bradykinesia.

Tremors: Tremors occur in the hands, fingers, forearm, or foot tend usually when the limb is at rest. Usually there are no tremors when performing a task. Tremors can also occur in the mouth and chin as well.

Rigidity: Rigidity produces stiff muscles, which in turn can produce muscle pain in the sufferer. Also rigidity can give the Parkinson’s sufferer an expressionless face as if they are wearing a mask. Rigidity tends to become worse during movement.

Poor balance: Parkinson’s sufferers often suffer from poor balance this is because of loss of the reflexes that usually adjust the posture in order to maintain balance. Poor balance can lead to falls which is common in people with Parkinson's.

Parkinsonian gait: Is a very distinctive walk which is connected to Parkinson's disease. A Parkinson’s gait will make the sufferer lean forward or backward in a very unnaturally way. The person will also develop a stooped, head-down, shoulders-drooped stance. Also instead of the normal stride a Parkinson’s sufferer will take small shuffling steps (called festination). Often people who suffer from Parkinson’s may also have trouble starting to walk – it’s as if they are glued to the spot. They can also freeze in mid-stride, and have difficulty making a left or right turn.

Parkinson’s Secondary Symptoms
Parkinson’s is a progressive disease and in the secondary stages will affect the loss of voluntary and involuntary muscle control. Though not all patients experience all of these symptoms and they can vary from person to person.

Here are some secondary symptoms:
Anxiety, isolation and depression – Parkinson’s sufferers can feel extreme anxiety for instance: if things are not put in the right place or if people visit. They often also feel very isolated which can cause depression.

Difficulty swallowing (dysphagia)– saliva and food can collect in the mouth and may cause choking, coughing, or drooling.

Excessive salivation (hypersalivation)

Excessive sweating – sufferers can suffer from excessive sweating. Make sure they wear layered clothing that are easy to take on and off.

Loss of bladder and/or bowel control – Some of Parkinson’s sufferers become incontinent over time. They can also suffer from constipation.

Loss of intellectual capacity (dementia)– This is a late symptom in Parkinson’s disease – often childhood memories are the strongest while things that happened in the last few years are forgotten.

Scaling, dry skin on the face and scalp (seborrhea)

Slow response to questions – Ask questions in a very simple form – it is already often that a question such as “would you like jam or marmite?” can confuse a Parkinson’s sufferer. It is better to ask “would you like jam?” and go from there.

Small, cramped handwriting (micrographia)

Soft, whispery voice – The voice of a Parkinson’s sufferer can become so soft that you can hardly hear them. It’s very important to always take the time to sit and listen to the patient.

By Beth Maxwell

Dementia and How it is Diagnosed

2009-12-28T14:58:00.001-07:00

Many of us may from time to time, forget our neighbor’s name or the items to purchase at the grocery store, and we wonder if this is part of normal aging. Your doctor is the best person to speak with regarding these concerns. There are many conditions that are treatable that may be contributing to periodic memory lapses.

Often when we think of dementia we think of Alzheimer’s disease. While Alzheimer’s disease is considered to be the underlying cause of between 60 and 80% of all dementia cases, there are also other conditions that might cause dementia. It is important to know about the other types and causes of dementia because treatment can vary between diseases and early detection can be beneficial in slowing the progression of incurable dementia's.

According to Dr. Harvey Gilbert, MD of the Gilbert Guide, some of the most common types of dementia and their causes are:

1. Vascular Dementia
This type of dementia is the second most common. It is caused by poor blood flow to the brain, depriving brain cells of the nutrients and oxygen they need to function normally. Vascular dementia can be caused by any number of conditions which narrow the blood vessels, including stroke, diabetes and hypertension.

2. Mixed Dementia
Sometimes dementia is caused by more than one medical condition. Most commonly, mixed dementia is caused by both Alzheimer's and vascular disease.

3. Dementia with Lewy Bodies (DLB)
Sometimes called Lewy Body Disease, this type of dementia is characterized by abnormal protein deposits called Lewy bodies that develop in nerve cells in the brain stem. This disrupts the brain’s ability to function normally and impairs cognition and behavior. It can also cause tremors and is often linked with Parkinson’s Disease and dementia. It is not reversible and there is no known cure.

4. Parkinson’s Disease Dementia (PDD)
Parkinson's disease is a chronic, progressive neurological condition, and in its later stages can affect cognitive functioning. Not all people with Parkinson’s disease will develop dementia, however. This type of dementia is also a lewy body dementia. Symptoms include tremors, muscle stiffness and speech problems. Reasoning, memory, speech, and judgment are also usually affected.

5. Frontotemporal Dementia
Pick's disease is the most common and recognized form of frontotemporal dementia. It is a rare disorder which causes damage to brain cells in the frontal and temporal lobes. This affects the individual’s personality significantly, usually resulting in a decline in social skills, along with emotional apathy. Unlike other dementia's, Pick’s disease usually results in behavior and personality changes occurring before memory loss and speech problems.

6. Creutzfeldt-Jacob Dementia (CJD)
A degenerative neurological disorder, CJD is also known as “mad cow disease”. The incidence is very low, occurring in only about one in one million people. There is no cure. Caused by viruses, CJD progresses rapidly, usually over a period of several months. Symptoms include memory loss, speech impairment, confusion, muscle stiffness and twitching, and a general lack of coordination, which makes the individual susceptible to falls. Sometimes blurred vision and hallucinations also occur with this form of dementia.

7. Normal Pressure Hydrocephalus (NPH)
Normal pressure hydrocephalus involves an accumulation of cerebrospinal fluid in the brain's cavities. When this fluid does not drain as it should, the associated build-up results in added pressure on the brain, interfering with the brain’s ability to function normally. Individuals with dementia caused by normal pressure hydrocephalus often experience problems with ambulation, balance and bladder control, as well as cognitive impairments involving speech, problem-solving abilities and memory.

8. Huntington’s Disease
Huntington's disease is an inherited progressive dementia that affects the individual’s cognition, behavior and movement. Symptoms include memory problems, impaired judgment, mood swings, depression and speech problems (especially slurred speech). Delusions and hallucinations may also occur. Individuals with Huntington’s disease may also experience difficulty walking, and uncontrollable jerking movements of the face and body

9. Wernicke-Korsakoff SyndromeWernicke-Korsakoff syndrome is caused by a vitamin B1 (Thiamine)deficiency and often occurs in alcoholics, although it can also result from malnutrition, cancers, abnormally high thyroid hormone levels, long-term dialysis and long-term diuretic therapy (used to treat congestive heart failure). The symptoms include confusion, permanent gaps in memory, and impaired short-term memory. Hallucinations may also occur. If treated early by supplement, this dementia can be reversed.

10. Mild Cognitive Impairment (MCI)
Dementia can be due to illness, medications and a host of other treatable causes. With mild cognitive impairment, an individual will experience memory loss, and sometimes impaired judgment and speech, but they are usually aware of this decline. These problems usually don’t interfere with the normal activities of daily living. Individuals with mild cognitive impairment may also experience behavioral changes that involve depression, anxiety, aggression and emotional apathy. This is often due to the awareness of and frustration related to his or her condition.

With an understanding of the types of dementia, questions begin to arise about how these diseases are diagnosed. What can a patient expect when trying to determine whether he or she has some form of dementia? What can a caregiver expect?

When you initially meet with your doctor, it is important to be honest with them about the symptoms the patient is experiencing, their duration, frequency and rate of progression. The doctor will then review your current health status, family history and medication history. This includes evaluating the patient for depression, substance abuse and nutrition, and other conditions that can cause memory loss, including anemia, vitamin deficiency, diabetes, kidney or liver disease, thyroid disease, infections, cardiovascular and pulmonary problems. The patient also undergoes a physical exam and blood tests. Diagnosing specific diseases causing dementia can be difficult and it may be necessary to ask for a referral to a doctor with expertise in this area. Additional tests that may be used in conjunction with the aforementioned approaches include the Mini Mental State Evaluation (MMSE), the Mini Cog Screen, and Medical Imaging (CT, MRI and PET scans).

The MMSE is an evaluation of the patient’s cognitive status. The patient is required to identify the time, date and place where the test is taking place, be able to count backwards, identify objects previously known to him or her, be able to repeat common phrases, perform basic skills involving math, language use and comprehension, and demonstrate basic motor skills.
The Mini Cog Screen takes only a few minutes to administer, and is used as an initial screening for dementia. The patient is required to identifying three objects in the office, then draw the face of a clock in its entirety from memory, and finally, recall the three items identified earlier.
Finally, medical imaging helps doctors see images of the patient’s brain to determine whether there are any growths, abnormalities or general shrinkage which occurs in Alzheimer’s disease. These medical imaging tests can help improve the accuracy of a dementia diagnosis to 90%.

Once a diagnosis has been made, doctors can help patients to look at various treatment options and can often provide information for caregivers and families about support groups and organizations that can provide them with information about their specific diagnosis. It is recommended that patients and their families try to learn as much as they can about the disease and how it is expected to progress. Organizations like Alzheimer’s Association or the Parkinson's Society can provide valuable information about the disease, its progression and tips on how to slow the progression of the disease and deal with symptoms. These organizations also provide support groups to both the patient and their caregivers to help deal with the blow of a dementia diagnosis. As mentioned earlier, early detection is often key in being able to reverse or slow the progression of many of these diseases. Having a basic understanding of the many dementia's that may occur and how they are diagnosed will be beneficial to physicians and families alike.

If you find that you simply do not know where to begin or how to handle this change in status and what it means for your future, a Geriatric Care Manager can assist you in making plans for the future.

For information on Care Managers in your area go to http://www.caremanager.org/ or for a care manager in Maricopa County click here.

By ElderCaring.ca