The Tangled Neuron

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.

Beyond Drugs: Other Ways To Treat Alzheimer's and Dementia (Part 2 - The Problems with Drug Treatments for Psychological Symptoms)

In a previous post on the "Psychosocial Issues and Neuropsychology" session at ICAD, I wrote about Dr. Alistair Burns' presentation on  how caregiver interventions and nondrug therapies can help reduce dementia-related psychological symptoms like agitation and anxiety.  During the same session, Dr. Clive Ballard, Director of Research for the Alzheimer's Society and a Professor at Kings College London Institute of Psychiatry, made the case for why we need nondrug interventions.  Dr. Ballard focused on reviewing the evidence that drug treatments are often sub-optimal.

Beyond Drugs: Other Ways To Treat Alzheimer's and Dementia (Part 1)

Summary:  Nondrug treatments such as aromatherapy, bright light therapy and caregiver support can complement drug treatments and benefit people with dementia and their caregivers.

Almost all the presentations at ICAD were about molecular biology.  They dealt with proteins like amyloid and tau, with genes like APOE and SORL1, and with the inner workings of brain cells.  Sitting in dark conference rooms watching these presentations, it was easy for me to lose sight of the real-life problems of people with dementia and their caregivers.

The last session I went to brought my focus back to these real-life problems.  It's too bad these presentations were given when many conference attendees were already on their way home -  "Psychosocial Issues and Neuropsychology" was one of the most interesting sessions at ICAD!  Four of the six presentations were specifically about nondrug treatment of dementia, and it's those presentations I'll focus on in the next few posts.

First up was Dr. Alistair Burns, a Professor and Deputy Dean of Clinical Affairs at The University of Manchester in the UK.  He is involved in trials of both drug and nondrug treatments for people with dementia and their caregivers.  Some of the nondrug treatments he has studied include:

The Alzheimer's Action Plan: Book Review

Summary: The Alzheimer's Action Plan is a comprehensive resource for patients and families. It's not likely that most people with memory loss will get the standard of care the authors would want for their own parents, but the guidelines in the book will help patients and families get as close to that standard as possible.

The scenario at the beginning of The Alzheimer's Action Plan will be familiar to many adult children whose elderly parents have memory problems:  warning signs, denial of problems by both your parent and his doctor, increasing problems, seemingly sudden diagnosis of Alzheimer's, no advice or support.  While this scenario doesn't exactly reflect my family's situation, I wish we had had this book when my father was alive.

Lisa Gwyther, M.S.W.

I met the authors at ICAD last week.  Dr. Murali Doraiswamy is Chief of Biological Psychiatry and past Director of Psychiatry Clinical Trials at Duke University Medical Center.  Lisa Gwyther is Director of the Alzheimer's Family Support Program at Duke's Center for Aging and current President of the Gerontological Society of America.  The combination of the viewpoint of a doctor involved in clinical trials and that of a social worker who has worked with thousands of families makes The Alzheimer's Action Plan a comprehensive resource.

Dr. Doraiswamy and Ms. Gwyther wrote the book to answer the question they often hear:  "what would you do if your mother was starting to have memory problems?"  To get a flavor for how the book is structured around real-world concerns, read the last chapter, "Our Top 40 Questions and Answers," first.  You'll find thoughtful answers to other questions they hear, including:

• "How do I get my father to go to the doctor when he thinks nothing is wrong?"
•  "Is it worth it to get a second opinion?  The doctor said my dad's CAT scan was normal, but he just isn't himself anymore."
• "Is there anything I can do now to keep from getting Alzheimer's like my mom and her mom?"

This book has something for everyone - people with memory loss, their families, and anyone worried about cognitive problems.  But at 400+ pages, it might be best-suited for the adult children audience the authors had in mind.  Parts one and two of the book cover what you need to know when you're in the doctor's office:  the latest diagnostic tests, what you can and can't expect from treatment, the pros and cons of participating in clinical trials and patients' rights.  Parts three and four are about life outside the doctor's office:  living well with early-stage Alzheimer's, dealing with changes in behavior and emotions, and finding peace of mind in later stages.  Part five contains advice for a brain-healthy lifestyle.

The real achievement of the book is laying out guidelines or standards for diagnosis and care.  If I had had this resource when my father was alive, I wouldn't have had to spend so much time researching diagnosis and treatments.  I would have been more comfortable asking Dad's doctors questions.

"Knowledge is power," Dr. Doraiswamy says.  "We wrote this book to give families the highest quality information which we hope will empower them to become their own best advocates for better brain and memory health."

But if I had had this book, would my father's diagnosis, treatment or care have been any different?  I don't think so.  Despite our best efforts, and those of numerous doctors inside and outside of a university-based memory clinic, we were not able to get the kind of diagnostic work, treatment or care described in The Alzheimer's Action Plan.  I suspect that is true of many families.

In between sessions at ICAD, I asked Lisa Gwyther if the book raises expectations too high.  "I hope not," she said.  "What we're trying to do is talk about what's possible, what to aim for as an advocate for yourself or your family member."  To be fair, Dr. Doraiswamy and Ms. Gwyther write frankly about the shortcomings of the medical system and the limits of treatments.  But what can be done to move toward their vision of excellent care?

From Ms. Gwyther's point of view, the answer may lie in a chronic disease management team approach, where overall patient care is coordinated among a variety of healthcare professionals.  "You can't expect to get all of your information from one physician," she said.  "Sometimes we need translators or interpreters, and we can get more time and more in-depth answers from experienced geriatric nurse specialists, social workers or other members of the healthcare team.  Geriatricians know a lot about dementia, and they are more likely to focus on enhancing function and comfort by treating excess disabilities or other chronic conditions.  Sometimes the most important thing you can do is get a 'tune-up and oil change' - go to a geriatrician or your regular doctor and make sure the things you can fix, treat or manage are treated.  Then look at what can be done to make your environment safer, and your daily routines and relationships more pleasant and meaningful."

It's not likely that most people with memory loss will get the care Dr. Doraiswamy and Ms. Gwyther would want for their parents, but the guidelines in The Alzheimer's Action Plan will help patients and families get as close to that standard as possible.

 

 

Memory Bridge: A Talk with Michael Verde

I started this blog to report on the work of Alzheimer's scientists, but I keep running into the work of another group.  This loosely connected collection of historians, social workers, people with memory loss and others is focused on recognizing that persons with memory loss are valuable members of society.  I guess it's not surprising that this group often takes a larger view of Alzheimer's and dementia.

Michael Verde

Michael Verde is definitely someone who thinks about the big picture.  He is the founder and President of Memory Bridge, a Chicago-based foundation working to connect people who have Alzheimer's with family, friends and community.  Two of his grandparents had dementia.

Since its beginnings in 2004, Memory Bridge has produced the PBS documentary There Is a Bridge, developed a program partnering junior high and high school students with people with Alzheimer's, created an interview guide for cognitively impaired participants in the Veteran's History Project and launched an art exhibit containing maps of the lives of people with Alzheimer's. 

Got Memory Loss? A Different Approach

So you have memory loss.  Maybe serious memory loss.  Of course you should pay attention to your health and make necessary arrangements.  But maybe the best thing you can do is pay attention to life.

While some scientists work to identify pharmaceutical treatments for memory loss, others are working to test whether activities such as painting, playing an instrument or dancing are beneficial.  Don Moyer, his wife Jenny Knaus (diagnosed with Alzheimer's) and Renee Beard, a geriatric sociologist, have collaborated to develop a database of the latter type of research.  The resulting information is available on Dancing Away Memory Blues, Don's blog.

On the blog, Don, Jenny and Renee list and summarize published studies on how activities in each of six categories (music, visual arts, drama, dance, mixed and other) can enhance the lives (and maybe improve the health) of people with memory loss.

If you need an excuse to learn to play the harmonica, or take up painting, this is it!

Orien Reid Nix: Alzheimer’s Disease International and Baby Boomers at the Crossroads

Orien Reid Nix is a baby boomer with a family history of dementia. She is also Chair of Alzheimer’s Disease International.

Last week, she gave a keynote address at the Wisconsin State Conference on Alzheimer’s Disease and Related Disorders in Milwaukee. In her talk, she focused on the devastating effects of Alzheimer’s on baby boomers, both as they care for their elders and as they develop their own memory problems.

Orien Reid Nix and Corinne Reid Owens

Ms. Reid Nix was accompanied by her aunt, Corinne Reid Owens, a civil rights activist in Wisconsin. Ms. Owens is 95, and does not have Alzheimer’s. But several of Ms. Reid Nix’s family members, including her mother, had the disease. In her speech, she talked about the challenges of caring for her mother while still caring for her children – a common situation these days. Estimates of the number of Americans in the “sandwich generation” run as high as 20 million. There’s even a new term, “club sandwich generation,” to describe people who are caring for three generations.

CADASIL: Young Onset Dementia Caused by a Stroke Disorder

Summary: CADASIL is a type of stroke disorder that can cause young onset dementia. Two web sites have been developed by women whose families are affected by the disease.

Billie Duncan-Smith’s husband Steve’s first symptom came when he was 38. He woke up with an excruciating headache, and started vomiting because the pain was so bad. Over the next few years, he would suffer many such migraines, some lasting for several weeks. An MRI of his brain showed a high number of white matter lesions, but Steve’s doctors weren’t sure what was causing his headaches.

Billie and Steve in 2004

While Steve suffered, Billie searched the internet and contacted medical experts all over the world. She sent his records and test results to those who offered to help. Finally, someone at the U.S. National Institutes of Health called her to suggest Steve might have CADASIL (Cerebral Autosomal Dominant Arteriopathy with Sub-cortical Infarcts and Leukoencephalopathy), a type of stroke disorder.

Does Loss of Memory Mean Loss of Self? A Webcast

My friend Don Moyer, who blogs about his wife Jenny's memory loss and about memory loss in general, will be one of the guests on a HealthTalk webcast Wednesday (April 9, 2008) at 4 pm Pacific time. He, Jenny and Dr. Renee Beard, a geriatric sociologist at the University of Illinois Chicago, have published a paper about the rich and meaningful lives people with memory loss lead.

You can read more about this webcast, and register to participate here.