The Tangled Neuron

Access to Potential Alzheimer's Treatments Outside of Clinical Trials

Summary:  The FDA’s “Expanded Access to Investigational Drugs for Treatment Use” rule provides a way for patients who can’t participate in clinical trials to gain access to potential treatments not yet approved by the FDA.  Despite optimistic headlines about Alzheimer’s cures and breakthroughs, many drugs currently in trial seem to have only incremental benefits.  This may keep demand for expanded access to potential Alzheimer’s treatments low.

Over the past few months, I’ve received several emails from people diagnosed with Alzheimer’s or their caregivers asking how they can get access to Alzheimer’s drugs still in clinical trials.  Most of these inquiries were about Dimebon, Rember or potential “Alzheimer’s vaccines” such as Bapineuzumab.

In each case, someone saw an optimistic media report about the promise of a drug in clinical trials (an “investigational drug”), and wanted access to it before trials were completed and it could be approved for the U.S. market. 

Are We Stifling the Voices of People with Dementia?

When my father was in his late 60s, he started having trouble finding words.  As his memory and thinking went downhill, so did his speech.  I knew it frustrated him, and sometimes I jumped in with a suggestion when he was groping for a word.

     Jackie Hunt Christensen

After talking with Jackie Christensen, I’m not so sure that was a good idea.  I met Jackie last week at the FDA Patient Representative Workshop we both were attending.  She has Parkinson’s, and wrote a great piece in the Washington Post explaining that even though her speech is sometimes halting, she can speak for herself.

Memory Loss and Home Safety

                    

Heather Black, MS, CCC, SLP & Jack Partington, MA, PT

If you’ve been diagnosed with Alzheimer’s or another dementia, or just have some mild memory loss, simple changes around the house can make your life safer and easier.  This was the topic of a talk given recently by Jack Partington and Heather Black, in-house physical and speech therapists at Freedom Square, a Brookdale Senior Living community here in Florida.

Mike Donohue Reports on Early Stage Needs

All too often, people are diagnosed with early stage Alzheimer’s or other dementias, then sent home with little advice on what to do next.  Although many of their capabilities are still retained, their cognitive problems can affect their social and family lives and make it difficult to work or volunteer.  Unless they live in an area that has early stage support groups, there are few resources available to them to help with these issues.

Mike Donohue

Mike Donohue, a blogger diagnosed with Alzheimer’s three years ago, participated recently in a panel discussion addressing early stage needs.  He and other panelists presented concrete recommendations for resources they feel should be available:

• First Stop Programs: A place where patients just diagnosed can come and learn how they and their families can deal with AD (Alzheimer’s disease) from those of us with it.

How Do People React to a Diagnosis of MCI?

         William Haley, Ph.D.

In my last report from the Mild Cognitive Impairment (MCI) Symposium, I wrote about research on disclosing a diagnosis of dementia.  But what if the diagnosis is MCI, not dementia?  Bill Haley, Professor at the School of Aging Studies at the University of South Florida, gave a presentation focusing specifically on this topic.  This next report summarizes his presentation on recent USF research in this area.

Disclosing a Diagnosis of Dementia

Alexandra Zaleta and Brian Carpenter, Ph.D.

My last few reports from the Mild Cognitive Impairment (MCI) Symposium were about the symptoms seen in people with MCI and the conditions that may underlie it.  These are researchers' views.  But what do patients think about MCI?

There were no patients or family members at the Symposium, but two presentations began to deal with that question.  The first, by Brian Carpenter, Associate Professor of Psychology at Washington University, was about disclosing a diagnosis of dementia.  Dr. Carpenter and his colleagues (including Alexandra Zaleta, a graduate student pictured here with Dr. Carpenter at the MCI Symposium) have been examining how doctors tell patients and families about a diagnosis, and what patients and families hear.  You can find details of his presentation in the latest report from the MCI Symposium.

Camp Building Bridges

Now in its second year, Camp Building Bridges is a camp for children ages 13 to 17 whose parents or grandparents have dementia.  The camp provides education and support for these teens, as well as a break from their daily worries.  This year's camp is July 19-25 at Camp Takatoka in Chouteau, Oklahoma.

The camp is the brainchild of Allen and Tracy Mobley (Tracy has dementia), who want to help children like their son Austin deal with the challenges of living with a family member with dementia.  This year, the camp is a project of the Oklahoma/Arkansas chapter of the Alzheimer's Association.

Some needs-based scholarships are still available.  For more information, contact Tracy and Allen at 417-933-2030 or tiger@centurytel.net.

Are You at Risk for Drug Interactions?

Summary:  A recent study suggests that some older adults are at risk for potentially dangerous drug interactions.  Make sure your doctor and your pharmacist are aware of all the supplements, prescription and over-the-counter medicines you take, and ask them to check for potential interactions.

In online forums and at meetings, I hear people with memory loss talk about the medicines and supplements they take.  It’s not unusual for them to reel off a list of several prescription drugs and twenty or more supplements.  Could the combination of some of these medicines be dangerous?

Dima Qato, PharmD, MPH

Potential drug interactions are a concern for everyone, not just for people with memory loss.  Late last year, the Journal of the American Medical Association published an article by Dr. Dima Qato and her colleagues at the University of Chicago on the medicines older Americans take.  The researchers catalogued the drug use of over 2200 people across the U.S., ages 57 through 85.

Anticholinergic Medicines and Memory Loss

Summary:  commonly-used prescription and over-the-counter drugs may contribute to memory loss in older people, particularly if taken for long periods of time.

Results of a recent study by scientists at Yale University suggest that long term use of some prescription and over-the-counter medicines contributes to memory loss in older people.  Previous studies, including one by French researchers, had also shown a connection between these medicines and memory loss.  The Yale study, which quantified the effects of using multiple anticholinergic medicines over time, confirmed this connection.  For study participants (544 men 65 and older), cumulative exposure to these medicines over a year’s time was associated with lower scores on tests of short term memory and executive function.  The study authors believe that the medicines have a similar effect on women.

The Mediterranean Diet, Mild Cognitive Impairment and Alzheimer's

Summary:  Following the Mediterranean diet may reduce your risk of Mild Cognitive Impairment and Alzheimer’s, and may increase the lifespan of people already diagnosed with Alzheimer’s.

Nikos Scarmeas, MD

Dr. Nikos Scarmeas, Assistant Professor of Clinical Neurology at the Taub Institute for Alzheimer’s and the Aging Brain at Columbia University, studies the connection between diet and Alzheimer’s.  Now he’s extended his research to include the connection between diet and Mild Cognitive Impairment (MCI), and has co-authored an article in this month’s Archives of Neurology about that research.

The new article and much of his recent research centers around the Mediterranean diet, and the results are encouraging.  In several large population studies, he and his colleagues have found:

People who closely follow the Mediterranean diet have a lower risk of developing MCI (28% lower than those who don’t follow the diet very closely over a 4.5 year study period)

Finding Caregiver Help: Don's Experience

My friend Don Moyer has a great post up about the logistics of finding and keeping caregivers for his wife Jenny, who has been diagnosed with Alzheimer's.  Don and Jenny stay active and healthy, even though her cognitive challenges have increased.  Don's new post shows how hard he works to make this happen.

Balance and Memory Loss (Part 2): Can Physical Therapy or Exercise Help?

In my last post, I wrote that some people with cognitive problems also have balance problems, and that many of them think these problems could be related.  Recent research at Rush University seems to confirm that view:  scientists there found that “impaired motor function” is increased in people with mild cognitive impairment, and is related to their risk of developing Alzheimer’s.

If you have both memory loss and balance problems, can physical therapy improve your balance?  “There are fierce proponents of this postulate,” says Joseph Friedman, MD, Director of the NeuroHealth Parkinson's Disease and Movement Disorders Center in Warwick, Rhode Island and Clinical Professor at Brown University Medical School. “My own belief is that exercise of all types is useful and that therapy is therefore useful but ONLY if the exercise program is maintained.”  He says his patients with dementia are more likely to stick to their exercise routine with caregiver participation and encouragement.

The Mom and Me Journals

For the past 15 years, Gail Rae Hudson has chronicled her adventures in caring for her mother, who had what Gail called "dementia lite."  I've been following her blog, the Mom and Me Journals, for more than three years now.  The site is full of caregiving tips, and, well, attitude. 

Gail's mom died this morning.  I'll miss hearing about her opinions and sense of humor, along with Gail's comments on caregiving and their life together.

To Whom I May Concern: Performing Alzheimer's Stories

I met Maureen Matthews at the Early Memory Loss Forum in Los Angeles last year.  Her program, "To Whom I May Concern" helps people with dementia tell their stories in scripted performances.  There's a nice profile of her work on lohud.com.

Richard Taylor on How to Encourage Someone With Dementia to Take a Shower

My friend Richard Taylor was diagnosed several years ago with dementia, probably of the Alzheimer’s type.  His book, Alzheimer's from the Inside Out, is a series of essays about how dementia changed his life, his relationships and his view of the world.

Richard, a retired psychologist, has found his calling in helping people with dementia and their families and friends navigate these changes. 

Check out Richard’s new website, and his thoughts on how to encourage someone with dementia to take a shower. Take some time to read his newsletters while you’re there.

Lewy Body Dementia: The Importance of the Right Diagnosis

Every day is a great day for Harry Lewis.  “He’s so plugged into life that he wakes up singing 'You Are My Sunshine,'” says his wife Sue.  “He tells me ‘there’s nothing wrong with me – I feel great!’” she says.

It wasn’t always this way.  When he was diagnosed with Alzheimer’s several years ago, Harry was anxious and depressed.  When his doctors prescribed an antipsychotic medicine to control his hallucinations, he started having seizures.  There weren't any great days in the Lewis household back then.

Once Harry’s diagnosis was changed to dementia with Lewy bodies (DLB), Sue says, she was able to educate herself and work with his doctors to improve their quality of life.  Although there’s no treatment to stop progression of DLB, the medicines Harry takes have reduced his symptoms considerably.

   Angela Taylor

“Getting the right diagnosis and treating the many LBD symptoms correctly can make a significant difference in the quality of life of both the patient and his primary caregiver,” says Angela Taylor, board member and chair of the Science Committee for the Lewy Body Dementia Association.  Along with Sue Lewis and Joseph Friedman, M.D., she talks about why an accurate diagnosis is so important in Part 3 of the Tangled Neuron series on Lewy body dementia.

In addition to the right diagnosis and treatments, Sue thinks a good attitude is the key to living with the disease.  She focuses on the positive, and tries not to give in to what she sees as a common and deep-seated fear of dementia. 

“As I’ve grown as a caregiver and thrived through dementia, we’ve lost that mask - that bored look Harry used to have on his face,” she says.  “I’ve refused to let him be ‘unplugged.’  When he was mobile, I took him to concerts and potluck suppers, and everyone helped entertain him. He told everyone dementia made him a better dancer - he lost his inhibition!   Even now that he’s in a wheelchair, we’ve stayed social.  And I bought two guitars - it’s not pretty, but we play the blues.” 

Despite her positive attitude, Sue finds the fluctuations in Harry’s symptoms maddening, and she worries about how they would handle any change in the environment and routines she's created for her husband.  “I live with the fear that everything can crumble every day,” she says.  “What if our house burns down?  I can’t go live in a motel with Harry.  What if we need a new roof or a new furnace?  Harry couldn’t deal with that right now.”

Lewy Body Dementia: Hard to Diagnose

Harry Lewis was diagnosed with Alzheimer’s when he was 59.  Along with his problems with memory and thinking, he began to have hallucinations.  “Other people’s hallucinations are about small children, or maybe money,” his wife Sue says, laughing.  “My husband kept seeing a naked blond in the living room.” 

Harry’s doctor prescribed Zyprexa, an antipsychotic medicine, to control the hallucinations.  It seemed to work, but then Harry had two grand mal seizures in four days.  This kind of extreme sensitivity to antipsychotic medications is a symptom of dementia with Lewy bodies (DLB), and is one of the criteria doctors use to diagnose the disease.  On Harry's 60th birthday, his diagnosis was changed from Alzheimer’s to DLB.

Joseph Friedman, MD

It’s not unusual for people to be diagnosed with another dementia before getting a diagnosis of dementia with Lewy bodies.  In Part 2 of the Tangled Neuron series on Lewy bodies, Joseph Friedman M.D., Director of the NeuroHealth Parkinson's Disease and Movement Disorders Center in Warwick, Rhode Island and member of the Lewy Body Dementia Association Scientific Advisory Council, talks about why it’s so hard to diagnose this disease. 

Lewy Body Dementia: One Couple's Story

Twenty-some years ago, Sue Lewis gritted her teeth and walked into the VFW (Veterans of Foreign Wars) bar in her rural West Virginia town. It wasn’t her kind of place, but she had to pick up a girlfriend there because they were going to the movies.

Harry Lewis spotted her from across the room, and decided he wanted to get to know her. He bought her a drink. Not long after, they were married.

Harry and Sue Lewis

“On the surface, we were opposites,” Sue says. “He quit high school to go into the Navy, and he has very traditional values. I have a master’s degree in social work and am an old hippie. I grew up in Michigan in a house with six bathrooms; he grew up in West Virginia and had an outhouse. But I figured out, hey, this guy is intelligent – he stretched my thinking. We fed each other intellectually. We were so interesting to each other.”

Beyond Drugs: Other Ways To Treat Alzheimer's and Dementia (Part 5 - The Seattle Protocols)

Summary:  Based on more than twenty years of clinical trials, Dr. Linda Teri and colleagues have developed a series of behavioral techniques and caregiver training programs know as the Seattle Protocols.  Their research has shown that nondrug treatments for people with dementia can reduce depression, anxiety and general behavioral problems in people with dementia, decrease disability, delay institutionalization and reduce burden and depression in caregivers.

This is the last in a series of posts about presentations during the Psychosocial Issues and Neuropsychology session at ICAD 2008.  We hear a lot about clinical trials of Alzheimer's drugs, but there isn't much coverage of clinical trials of the nondrug treatments discussed in this session.  Maybe this is because nondrug treatments don't promise a cure.  But they can reduce health problems in people with dementia and their caregivers, whether those problems are physical or psychological.

Beyond Drugs: Other Ways To Treat Alzheimer's and Dementia (Part 3 - Cognitive Rehabilitation)

Summary:  Preliminary results of a large trial of cognitive rehabilitation for people with Alzheimer's are encouraging.  Cognitive rehabilitation could help keep people with mild Alzheimer's functioning in the community and at home.

Another great presentation in the "Psychosocial Issues and Neuropsychology" session at ICAD 2008 was Dr. David Loewenstein's update on a clinical trial of cognitive rehabilitation for people with Alzheimer's.  Dr. Loewenstein is Director of Research and Neuropsychology at the Wien Center for Alzheimer's Disease and Memory Disorders, and professor of Psychiatry and Behavioral Sciences at the University of Miami's Miller School of Medicine.

The value of cognitive rehabilitation is well-established for people with brain injuries and for older adults in general, he said.  But for people with Alzheimer's, it's a bit more complicated.  This is because rehabilitation must be designed to work even as the disease may be progressing, and because the parts of the brain affected in Alzheimer's make it hard to use standard rehabilitation methods.