The Tangled Neuron

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.

An Alzheimer's Researcher Writes About His Daughter

David Loewenstein, Ph.D., is Professor and Director of Neuropsychology at the University of Miami School of Medicine and Research Director at the Wien Center for Alzheimer’s Disease and Memory Disorders at Mt. Sinai Medical Center. In a previous post, I wrote about his research on cognitive rehabilitation for people with Alzheimer’s.

As part of his job, he writes articles about Alzheimer’s for scientific and medical journals. But he’s also written a book about his special needs daughter, Rachel, who was born four months early. For the Love of Rachel: A Father's Story is written from a personal, rather than a medical, point of view.

The Gap

I just came home from the grand opening of the Byrd Alzheimer’s Research Center and Research Institute here in Tampa. I’m excited to have great research going on in my back yard, and I’ll write more about it soon.

Then I turned on my computer to check on Had a Dad, Bert Piedmont’s blog about her dad’s dementia. Her father was taken to the hospital last weekend after he became violent. Bert says he is drugged, restrained and not getting the care and meds he needs. For a variety of (silly) reasons, she and her family have been unable to get him into the appropriate care facility.

There’s still a big gap between the promise of new research for the coming years and the reality of dealing with dementia minute by minute. I remember how much this gap frustrated me when my father was alive, and I know Bert must be sick about it.

With the state of Florida in budget-cutting mode, the Byrd Alzheimer's Center and Research Institute faces major funding cuts. This problem isn't isolated to Florida - funding for Alzheimer's research is scarce worldwide. Doesn't look like we'll close the research-reality gap anytime soon.

Two Articles on Caregiving

Thanks to Rich Bozanich, one of the organizers up the upcoming Early Memory Loss Forum, for sending a link to a New York Times article "Zen and the Art of Coping With Alzheimer's. " The point of the article is that caregivers must learn to "go with the flow," since neither scientists nor politicians have done much about Alzheimer's.

The second article, "Exhaustion, anger of caregiving get a name," is on CNN's web site, and is about the growing recognition of the mental and physical health problems caused by caregiving. The article quotes Peter Vitaliano, a professor at the University of Washington who studies caregiver health. If you'd like more details, I wrote about Dr. Vitaliano's work in a post last summer.

Gail Rae Hudson's Comments on Dementia Caregivers Share Their Stories

A couple of posts ago, I wrote about a book I really like - Dementia Caregivers Share Their Stories: A Support Group In A Book - and about meeting Lynda Markut, one of the authors. Over at The Mom and Me Journals, Gail Rae Hudson has also been reading the book - one or two more bloggers and we'll have an online book club! You can check out her comments here and here.

Dementia Caregivers Share Their Stories: Book Review

Bernie Cavis, Director of Dementia Product Line Management at Brookdale Senior Living, gave me a copy of Dementia Caregivers Share Their Stories: A Support Group In A Book. I’m fascinated by the stories in this book. The caregiving experiences of the authors, Lynda A. Markut and Anatole Crane, are woven in with those of the twenty-six families interviewed.

In May, I found Lynda browsing the displays at the Wisconsin Conference on Alzheimer’s Disease and Related Disorders. She is Education and Dementia Care Specialist at Family Care Alliance Inc., a not-for-profit geriatric health facility in Illinois, and consults on the specialized care needs of persons with dementia. She also is an adjunct professor at McHenry College, where she teaches Introduction to Gernontology, an upper level psychology course.

Lynda Markut, M.S., L.S.W.

Both of Lynda’s parents had dementia, she says. “My father died twenty-one years ago from a dementia we now think could have been normal pressure hydrocephalus. We weren’t quite as sophisticated as we are now, but given his symptoms, we think that’s probably what he had. My mom had vascular dementia with complications from uncontrolled diabetes.”

She tells me that her co-author was caregiver for his wife Martha for fifteen years. Anatole, a microbiologist, began attending a general support group at Family Alliance shortly after Martha was diagnosed with probable Alzheimer’s at fifty-three. He also helped Lynda start a well-spouse support group.

“Anatole and I would talk about the fact that there was no book out there that told caregivers what families do right,” Lynda says. “And the books were usually written by professionals. We talked about having a support group in a book - families could pick it up at any time and check out what other families might have gone through or had done about a particular situation.”

They brought this idea up in their general support group, and members agreed to be interviewed for the potential book. “As we interviewed the family members, they came to realize all they had done,” she says. “For the first time, they acknowledged their accomplishments. If the book had gone no further, it would have been a success.”

But it did go further. “We had the interviews transcribed; then we started to write. We rewrote it a number of times until we realized the strongest statements would be made by the caregivers themselves. So, we set about letting the caregivers speak, and Anatole and I wrote the transitions.”

Because Lynda had been facilitating support groups for over twenty years, it came naturally to organize the book like one of her groups. “We started with the diagnosis and worked through caregiving issues, emotions, etc., all the way to the terminal stage of the illness,” she says.

The caregivers in the book wryly acknowledge the difficulties of caregiving: family disagreements, their sense of loss, dealing with embarrassing behavior and caregiver burnout. They matter-of-factly chronicle how their lives changed, and what solutions worked for them.

But the essence of the book is the life stories of the twenty-eight families. The stories are vivid and rich with detail – as much about gardening, music and family life as they are about memory loss, personality change and toileting.

Maybe it’s because the people in the book are looking back instead of narrating from the middle of a caregiving crisis. Maybe it’s because they had access to the support services they needed. Maybe they’re just an extraordinary group of people. Whatever the reason, their voices are full of quiet satisfaction and a sense of accomplishment. We can all benefit from their vision of dignity and growth through caregiving.

A Growing Awareness of Early Onset Alzheimer's

People typically develop Alzheimer's in their late 60's or in their 70's. But there's a growing awareness that younger people can have the disease too. The Alzheimer's Association is ramping up publicity and educational efforts for Early Onset Alzheimer's disease, and now the Alzheimer's Research Forum has developed a section of its site devoted to Familial Early Onset Alzheimer's

James Smith and his wife Juanita have been working to increase awareness of Early Onset through web-based sites, speeches and meetings such as the Alzheimer's Association Public Policy Forum where I met them. Check out the short RealLife.tv video of James talking about his life after diagnosis with Early Onset Alzheimer's, as well as a companion video of Juanita talking about how their lives have changed.

Richard Taylor - Alzheimer's from the Inside Out

The meeting room was jammed. Huge speakers were set up on the porch so that those who couldn’t get a seat in the main room could still hear the presentation. The organizer announced two more sessions would be held the next day to accommodate everyone who had registered in advance.

The caterer added giant gulf shrimp to a tower of pineapples and greenery arranged to look like a palm tree. Attendees filled their glasses from a three-level fountain of punch, and snacked on cheese and chocolate. The mayor arrived.

A real estate pitch? A motivational seminar? No, it was Richard Taylor’s talk on Alzheimer’s last Monday at Arden Courts of Largo, an assisted living facility. Richard, a psychologist diagnosed with “dementia, probably of the Alzheimer’s type” at 58, is one of the most outspoken advocates for those with the disease. His book. Alzheimer's from the Inside Out, is a collection of essays he’s written over the four years since his diagnosis.

Richard Taylor, Ph.D, greets audience members

I had dinner with Richard during the Alzheimer’s Association Public Policy Forum in DC. I read his book, and the St. Petersburg Times article about him. I posted an excerpt from one of his speeches.

But I still wasn’t prepared for the power of his presentation. It’s really a short play based on his book. On Monday, Richard played the person with Alzheimer’s, while a local caregiver read the caregiver’s part. Lisa Milne, Program Specialist from the Alzheimer’s Association - Florida Gulf Coast Chapter, narrated.

“I have become an “It,” Richard says in one scene. “People talk about me, instead of to me.” When he tries to maintain his independence, his family takes away the checkbook and the car. “Don’t worry, we have your best interests at heart. We’ll take care of everything,” the caregiver and the narrator chant in unison.

When the reading was over, and it was time for Richard to take questions, everyone around me was in tears. One by one, caregivers in the audience took the microphone to ask Richard for advice. He was careful to say he can only speak from his own perspective. But he recommended they involve the person with dementia in decision-making about life arrangements and care as much as possible, and gave some examples. He said that hearing about the experience of others in support groups can be helpful. He suggested they try some of the ideas in the book The Best Friends Approach to Alzheimer’s Care.

I wish I could have read Richard’s book and heard him speak while Dad was still alive. Maybe my parents could have gone with me to the presentation. And maybe I would have worried less about what was wrong with my father and worried more about spending time with him.

Dreaming About A Cure, Talking About Care: Part 4 of 4 - New Ideas for Care and Cure

Whether we view Alzheimer’s as a disease, or as part of aging, most of us know from personal experience that the way we deal with it is terribly inadequate. In the past three posts, I’ve written about the growing recognition that Alzheimer’s isn’t a single disease, and the controversy about whether we should spend our limited resources on trying to find a “cure.”

Maybe if we give up our fantasies of a single “cure” for Alzheimer’s, we can start talking about better ways to view and treat dementia. These discussions have already begun in labs, at conferences, on email lists, and in homes around the world. While preliminary, they provide us with a glimpse of how Alzheimer’s care might look in the future.

Dr. Peter Whitehouse’s work is an example. Earlier in his career, he focused on drug development. Now he’s more interested in prevention and in intervention studies aimed at improving quality of life for dementia sufferers.

“We need to re-evaluate what’s important,” he says. “Regardless of cure, care needs more attention. Trying to find a cure is part of caring, but there’s an imbalance. We have a great obligation to think clearly about the condition, then do things to improve it. We need to think about ethical considerations – for example, there are still children whose brains are being damaged by lead. Addressing this problem is important for future generations. And instead of focusing on degeneration, we should be focusing on renaissance and legacy.”

Dr. Whitehouse’s recent work includes research on using electronic aids for reminiscence therapies (LifeBook) and archiving individual stories of people’s experiences with disease (including dementia) and medical treatment (StoryBank). His main intervention studies will be at The Intergenerational School, a Cleveland public school serving learners of all ages. He founded the school with his wife Catherine. “The IG school represents one way of pulling it all together,” he says. “Purpose, a sense of community, remaining cognitively active, leaving a legacy, being engaged and valued - these things are much more important to quality of life.”

In labs and at conferences, other scientists are discussing new approaches to Alzheimer’s research, such as more accurate “sub-typing” for identifying different types of dementia, and focusing on investigating potential causes of dementia other than beta amyloid. I’ll write more about this in another post.

And within DASN, members are talking about how to improve care:

- “I think the 'person-centered' model is the ideal for both the care partner and the person with dementia. Each of us has different needs, so no care plan would suit even the majority of folks touched by this disease.” (Shirl Garnett, western Australia, diagnosed with early onset dementia at 59)

Shirl Garnett

- “The mind-body-spirit approaches developed by new age physicians to address those other diseases must be brought to bear on AD. Further, I believe that new era medicine - consciousness and healing - could inform the research being done in the AD research centers and private laboratories.” (Jay Smith, California, diagnosed with early onset Alzheimer’s)

- “Services in the form of support for caregivers and those of us with dementia can often be provided in part by volunteers. I am convinced that there are many more volunteers who are qualified and would contribute if given the opportunity.” (Charley Schneider, Missouri, diagnosed with early onset Alzheimer’s)

- “I think that the key to finding a better medication for treatment and possibly a cure lies in the minds (no pun intended)of those that ARE diagnosed in their 30's, 40's and 50's. If they were open to allowing us to be a part of research in clinical trials I personally think that this would speed up the process for their goal of a cure. So, so many of us work so diligently with great urgency to make this happen as we don’t have the time that the associations and researchers do to plan this all out as our time is running out. Why not focus on those under 50? They might be surprised how much money is saved in research if they would just broaden their horizons so to speak.” (Tracy Mobley, Missouri, diagnosed with early onset Alzheimer’s disease at the age of 38)

Tracy Mobley

- “What makes the best sense of all is empowering people with dementia to care for themselves as much as possible and for as long as possible. People with dementia absolutely can learn some things far into the disease. I truly believe that people with early dementia can be taught to better understand and manage their own disease and behaviors. I further believe that a society which allows people with dementia to stay involved in their chosen activities also prolongs life and emotional health.” (Carole Mulliken, Missouri, diagnosed with vascular dementia)

Dr. Whitehouse sees hope in this kind of open-minded discussion. “If we can think through Alzheimer’s in a deeper way, will have insights into how the brain works. Underneath Alzheimer’s is a re-thinking about what it means to be human, and science’s role in society.”

Dreaming About A Cure, Talking About Care: Part 2 of 4 - More Care, Less "Cure"?

In my last post, I wrote about how researchers are beginning to question whether Alzheimer’s is really one disease. A different view of the definition of Alzheimer’s naturally leads to a different view of what we should do about it:

1. If Alzheimer’s is a disease, we need to continue to try to find the cure for it.

2. If Alzheimer’s is cognitive dysfunction caused by multiple aging-related conditions, we should shift our focus to steps we can take to prevent those conditions.

Dr. Peter Whitehouse, Professor of Neurology at Case Western Reserve University, is one of those who holds the second view. Because he doesn’t think Alzheimer’s is a single disease, he believes it’s unlikely that researchers will find a “cure.” He’s concluded we should focus resources on care and services for people with cognitive impairment, and on prevention, rather than searching for a “magic bullet” cure. “Care needs to be dominant over cure,” he says.

Richard Taylor, a retired psychologist, DASN member and author of the book Alzheimer's from the Inside Out, was diagnosed three years ago with dementia. He agrees there should be a shift in funding.

Richard Taylor, Ph.D

“This disease creates turmoil in 99.9% of the families who are dealing with it,” he says. “While ‘bench’ researchers run around chasing their molecular tails, people who are living with the disease as carers and carriers battle with themselves and each other.

When will more attention be paid to this real problem and less to the conditions of nude mice? I realize both areas need research, lots of research. In the mean time millions of people are struggling with the psycho-social consequences of the disease.

The vision of a world without Alzheimer's is compelling. Shouldn't the cries for help from people confronting it be just as compelling? There needs to be a more equitable split in research dollars between tomorrow's and today's issues.”

As I think through the care versus cure question, I wonder what a decision to shift resources away from research would have meant for my dad, whose cerebral amyloid angiopathy (CAA) caused microbleeds in his brain that led to his dementia and death. I don’t think the preventative measures we talk about now (healthy diets, exercise, staying engaged, etc.) would have made a difference for him. Basic research into the causes of and treatments for CAA and Alzheimer’s would have helped him more.

But in the last few years, research facilities have been forced to delay Alzheimer’s-related experiments and lay off scientists because they can’t get funding. With money already scarce for Alzheimer’s research, do we really want to shift resources from cure to care?

Lisa Genova, the neuroscientist and author mentioned in my earlier post, doesn’t think so. “As a neuroscientist who understands the biology of this disease and as someone who knows the researchers who are driven and dedicated to finding a cure, I honestly believe that a cure for this disease is within grasp, and to take funding away would be a crazy, horrific mistake,” she says.

Jeanne Lee, a DASN member living in Hawaii, and author of the book Just Love Me: A Life Turned Upside-down by Alzheimer’s, doesn’t want research funding reduced, but would like to see it redirected. “I do agree too much money is spent on the later stages of Alzheimer's or dementia,” she says. “The research monies need to go towards the other end of the disease when WE are still capable of knowing what is happening in our lives. We have medicines for early stages of cancer, diabetes and other diseases, and sometimes they’re caught early enough to be cured. This is what we need for Alzheimer’s and dementia, so why would you say research is not necessary?” Jeanne was diagnosed with dementia of the Alzheimer’s type in 1995.

Jeanne Lee

Many scientists agree with Jeanne that research must focus on stopping dementia long before onset. Dr. Whitehouse has specific ideas of how we should address research on early medical interventions. “I’d prefer to see research on healthy aging, and understanding the value of basic preventative measures, such as physical exercise,” he says. “Many of these measures are good for a lot of things besides Alzheimer’s, so the money would be better spent.”

On this aspect, Jay Smith, another DASN member mentioned in my last post, agrees with Dr. Whitehouse. “More research should be done to identify and isolate the various environmental and lifestyle causes of the disease - diet, nutrition, life style, stress, genetics, environmental toxins, etc. - as has been done in diabetes, heart disease and cancer over the past twenty years,” he says.

Wrong Question?

Other DASN members don’t like the care versus cure question. Carole Mulliken, a former teacher and school counselor diagnosed with vascular dementia at 59, says that, “…in most cases, framing a question in ‘either or’ format guarantees a false conclusion. To tie ourselves up in deciding which of the two is more important eliminates the possibility of putting energy in to multi-faceted responses.”

Carole Mulliken

Chuck Jackson another DASN member who has been diagnosed with early onset dementia agrees. “If we have a medical cure,” he says, “or medical treatment that stops progress of the disease in early stages, then we won’t need expensive care facilities after a certain amount of time. The bottom line is how to facilitate both care research and medical research.”

Richard Taylor feels the same way. “It's the wrong question to ask. The crucial question is why are there so few dollars that a choice has to be made. It's tragic, it's irresponsible, and everyone should be ashamed and angry we all aren't doing more to address the consequences of this plague.”

But if the current trend of reduced government spending for Alzheimer’s research continues, and private donors don’t step up with more donations, we’ll have to make a choice between cure and care.

Antipsychotic Medicines and Alzheimer's, continued

I wrote in an earlier post about a new study concluding that the side effects of antipsychotic medicines often outweigh the advantages for Alzheimer’s patients. In some situations, modifying the dementia patient’s environment may reduce agitation or other behavioral symptoms without medications. “In many treatment contexts (home, nursing home, group living situations), behavioral management techniques are probably under-utilized and medications are probably over-utilized,” says Dr. Ray Ownby, Professor of Psychiatry at the University of Miami Miller School of Medicine.

Patty Doherty of The Unforgettable Fund commented on the problems her family had when her father became agitated by “that guy,” who was his own reflection in the mirror. The dose of Risperdal needed to stop her father’s hallucinations made him sleep day and night. Instead, Patty’s family simply covered all the reflective surfaces in her dad’s environment.

Several web sites offer high level descriptions of environmental changes and behavioral management techniques for agitation, aggression, hallucinations and delusions in Alzheimer’s patients:

- Alzheimer’s Foundation of America
- U.S. National Institute on Aging
- The Alzheimer’s Association.

When environmental changes and behavioral management techniques aren’t enough, and antipsychotics aren’t well tolerated or effective, doctors may try medications approved for other uses. Several clinical trials are underway to determine how effective these drugs already on the market are in reducing agitation in dementia patients. These medications include:

-Cholinesterase inhibitors such as donepezil (Aricept – currently used for treatment of Alzheimer’s disease)
-Memantine (currently used for treatment of Alzheimer’s disease)
-Anticonvulsants such as Valproate and Depakote
-Antidepressants such as Citalopram (Celexa).

Tegretol, another anticonvulsant, is also sometimes prescribed for agitation.

In the meantime, research is underway to find new antipsychotic medications with fewer side effects. One such effort at The Fisher Center for Alzheimer’s Research at the Rockefeller University focuses on Fisher Center scientists’ discovery that some of the adverse effects of the current antipsychotic medicines stem from the fact that they block dopamine receptors. Dopamine is a neurotransmitter, or chemical messenger in the brain, and too little of it has been associated with Parkinson’s disease and some of the Parkinson’s-like side effects of antipsychotic medicines.

“Much of this research deals with a protein called DARPP-32, which is located inside brain cells involved in dopamine signaling,” explains Dr. William Netzer, a researcher at The Fisher Center and scientific liaison to the Fisher Center for Alzheimer's Research Foundation and the Michel Stern Parkinson's Disease Research Foundation. “DARPP-32 is a master regulator protein, integrating numerous signals from its cellular environment and orchestrating the cell's responses. [Fisher Center Director] Dr. Greengard and colleagues found that DARPP-32 connects several major signaling systems in the brain. They are the dopamine, serotonin and glutamate systems, and each is involved at various levels in agitation and other behaviors. It may be possible to fine-tune the way DARPP-32 regulates these systems so that certain side effects of antipsychotic and anti-agitation drugs may be avoided, either by directly or indirectly affecting the functions of DARPP-32.”

I hope some of these existing drugs or new antipsychotic medicines will be prove to be more effective than current antipsychotics and environmental changes. In the meantime, Alzheimer’s patients, their caregivers and doctors are left with a trial and error process for managing psychiatric symptoms.

Antipsychotic Medications and Alzheimer's

Throughout his life, my father laughed away any worries. He never locked doors; he trusted everyone. When lightening struck a transformer ten feet from where he stood, he brushed it off. Nothing kept him awake at night.

But when I visited my parents for Dad’s 73rd birthday last year, he was confused and seemed to be hallucinating. “Where are the others?” he asked over and over. “They were here a little while ago – I’m sure I saw them.” I had flown up by myself, and no one was with us in the house.

Later that week, he told Mom he couldn’t sleep because he thought the vibrating box fan in the doorway of the bedroom was going to attack him. He was upset, and it was hard for my mother to reassure him.

Symptoms like Dad’s are common in Alzheimer’s patients, and add to caregivers’ burdens. According to the U.S. National Institute for Mental Health (NIMH), antipsychotic drugs are widely used to treat psychiatric symptoms in people with Alzheimer’s. More than 27% of patients in American nursing homes receive these drugs, which were initially developed for schizophrenia. But, at least in the U.S., these drugs carry “black-box” warnings that they are not approved for the treatment of patients with dementia-related psychosis.

Results of a five year study of antipsychotic medicines in Alzheimer’s patients were published earlier this month in the New England Journal of Medicine. The “Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE) Alzheimer’s Disease” study tested three antipsychotic medications against a placebo in 421 Alzheimer’s patients living in their own homes, in family members’ homes, or in assisted living. The medications tested were:

- olanzapine (Zyprexa)
- quetiapine (Seroquel) and
- risperidone (Risperdal).

Input from caregivers was used to help with doctors’ assessments of any improvements or side effects. Although these drugs showed some benefit for some patients, the researchers concluded that “adverse effects offset advantages in the efficacy of atypical antipsychotic drugs for the treatment of psychosis, aggression, or agitation in patients with Alzheimer’s disease.”
Side effects seen in some patients included problems with coordination of movement, sedation, confusion and psychotic symptoms. Antipsychotic medicines have also been shown to increase the risk of developing diabetes and stroke.

Despite recent headlines about this research (“Little Benefit Seen in Antipsychotics Used in Alzheimer's,” etc.), it’s hard to say what the study results mean for each individual patient. Dr. Constantine Lyketsos, Chair of Psychiatry at Johns Hopkins Bayview and Vice Chair of Psychiatry at Johns Hopkins Medicine, co-authored the study. “Neither the CATIE study nor other studies suggest that these medicines shouldn’t be used,” he says. “If you look at the CATIE study, it’s not that the medicines weren’t effective, but the risk/benefit ratio has changed. For the sub-groups of trial participants for whom the medications weren’t discontinued because of side effects, they were more effective than placebo. If a patient’s symptoms are high-risk, then doctors can try antipsychotics with careful safety monitoring. If one of these drugs is well-tolerated, then I can tell you from clinical practice that it’s often effective.”

Constantine (Kostas) G. Lyketsos, M.D., MPH

“I think it would be unfortunate if everyone stopped prescribing any medication solely on the basis of one study,” agrees Dr. Ray Ownby, Professor of Psychiatry at the University of Miami Miller School of Medicine. “Contrary to what many people believe about the study results (and I'll agree that the presentation is confusing), I would not argue that it shows that antipsychotics don't work. It simply shows that antipsychotics aren't enormously effective and that they have lots of side effects. Physicians should prescribe what's appropriate for their individual patients while being aware of the risks and benefits of any given treatment.”

In a “Question and Answer” page on this study, the NIMH recommends caution in prescribing these drugs:

Although some patients may benefit greatly from these medications, the evidence from this study suggests these medications hold limited value for the majority of patients. These results further emphasize the challenge of managing behavioral problems in Alzheimer's patients. Prior to prescribing these medications, clinicians must ensure that agitation or aggression in their Alzheimer's patients are not related to medical, social, or environmental factors (e.g., fever from an infection, side effects from another medication) which might be mitigated without resorting to psychotropic medications.

In a future post, I’ll write about potential alternatives to these drugs, and efforts to develop antipsychotic medications with fewer side effects. But right now, there are no easy answers for doctors or for caregivers.

In the weeks after Dad’s birthday, things got better. Although he was still confused sometimes, he didn’t seem to be hallucinating, and wasn’t as agitated. His doctor thought maybe his symptoms were the result of heat exhaustion (he had mowed the lawn in the summer heat just before these incidents). I now wonder if he’d had a small hemorrhagic stroke that day. If my father had lived longer, he might have gone through more periods when he was anxious, agitated and confused. As the anniversary of his death approaches, we all miss him terribly. But I’m glad we didn’t have to agonize over whether antipsychotic medicines would help him or hurt him.

The Dementia Resource Fair And Information Disconnect

When Dad was alive, much of the information I found about Alzheimer’s and dementia just didn’t add up. Sometimes it was downright odd. After a visit to a local Dementia Resource Fair, I’d say nothing has changed.

The fair was held this week at an assisted living complex near where I live. Just like the telecommunications conferences I’m used to, the event featured presentations and an exhibition floor. Exhibitors included:

• A non-profit providing adult daycare services
• The geriatric behavioral health unit at a local hospital (offering inpatient psychiatric services)
• The local Alzheimer’s Association chapter
• Pharmaceutical companies
• A home health care service
• Two memory disorders clinics
• A geriatric care management company
• The spa and fitness center located within the assisted living complex.

Dementia patients and their families could wander through these booths and get a pretty good idea of what services are available in the area. I got there around 11:30 in the morning, and I was the only person looking at the material in the booths. But upstairs, the presentation room was jammed. The main draw appeared to be the free lunch: sandwiches, macaroni salad, potato salad, brownies, cake and cookies. There were fewer than ten people who might be caregivers in the room – the rest were residents of the facility. They were talking and chewing so loudly I could barely hear the speakers.

Here’s some of the information I heard at the fair:

• You can Baker-act a dementia patient to protect him from scams
• Use blue and red dinnerware if your Alzheimer’s patient isn’t eating
• “Eating saturated fats is like putting arsenic on your brain with a paintbrush
• A pharmaceutical company has a medication in Phase II trials that will radically change Alzheimer’s treatments – but it’s a secret
• “It’s SO beneficial if you can diagnose them early and start medicating them”
• “With fish oil, you’ll make a superior product with the new cell you’ve created” [this same fish oil supplement has been “cleansed of over 28 toxins”]
• People have had one quarter to one half of their brains surgically removed and their brains have “adopted to all the things they need to do”

I left the fair thinking about the information disconnect in the world of Alzheimer’s. There seemed to be no connection between the lives of dementia patients and their caregivers and this collection of factoids. And there seemed to be only loose connections between the factoids and current scientific research.

But I don’t think anyone was listening anyway. If fair attendees had been paying close attention, they might have rejected the idea of Baker-acting a dementia patient, demanded more information about the “secret” drug, and stopped eating platefuls of dessert laden with saturated fat.

Maybe the Dementia Resource Fair just mirrors the larger world of Alzheimer’s and dementia. Until we start paying more attention, we’re stuck with information disconnect.

Stress, Depression and Alzheimer's, Part 2

In a previous post, I wrote about how a history of depression may increase your risk of developing dementia. This connection is not well understood, and is further complicated by the fact that many Alzheimer’s patients are depressed, even when they have no previous history of depressive episodes. If my father had lived long enough, he might have been dealing with depression as well as cerebral amyloid angiopathy and probable Alzheimer’s.

Dr. George Zubenko, Professor of Psychiatry at the University of Pittsburgh School of Medicine, spent some time last week helping me make sense of all this.

“The rate of depression in people 65 and over is quite low – a few percent,” Dr. Zubenko says. “But somewhere between 30 and 50% of Alzheimer’s patients suffer from depression. Some of that is probably due to the realization that they’re losing mental capacity – major depressive episodes often seem to be triggered by stressful life events. The much higher rates of major depression in AD [Alzheimer’s disease] patients suggest that the emergence of MDD [Major Depressive Disorder] in AD is often the result of the neurodegenerative disorder.

George S. Zubenko, M.D., Ph.D.

It’s obvious that major depression increases the suffering of dementia patients and their caregivers. Dr. Zubenko points out that it also exaggerates the patients’ disabilities, makes institutionalization more likely, and may hasten death. For these reasons, it’s important to diagnose depression in dementia patients. Diagnosis can be tricky, though - doctors don’t agree on the definition of "depression" in AD, and it’s often difficult for dementia patients to communicate their symptoms.

To help diagnose and characterize depression in Alzheimer’s patients, Dr. Zubenko and his coworkers developed a diagnostic interview called Clinical Assessment for Depression in Dementia (CADD). He believes that “major depressive disorder in Alzheimer’s disease” is not the same as major depression in non-demented patients. When the CADD was administered to 243 patients with probable Alzheimer’s disease and 151 non-demented control patients, the data showed that Alzheimer’s-related depression had somewhat different symptoms than “regular” depression. In this study, depressed Alzheimer’s patients were less likely to have sleep disturbances or feelings of worthlessness or excessive guilt than non-demented depression patients, but were more likely to have problems concentrating or making decisions.

The results of this same study confirmed other research showing that the prevalence of major depression did not increase with the severity of Alzheimer’s disease. This may mean that major depression in Alzheimer’s is not related to the overall degeneration of the brain, but rather to degeneration in specific areas. In fact, several studies have shown that major depression in Alzheimer’s disease patients is associated with the degeneration of the areas of the brain stem that produce mood-regulating chemicals such as serotonin, noradrenaline, and dopamine. It’s unclear whether this is relevant for other types of dementia.

Dr. Zubenko is one of a group of scientists proposing that the next update of the Diagnostic and Statistical Manual of Mental Disorders (a reference manual used by doctors in the U.S.) include more accurate characterizations of various psychiatric symptoms in dementia, including depression. Better diagnosis would be another step towards understanding the causes of and treatment for depression in Alzheimer’s.

In the meantime, can doctors help AD patients with depression? Most clinical trials of anti-depressants for depression in Alzheimer’s have been relatively small and short term. At first glance, results look mixed, with some trials showing anti-depressants were more effective than placebo, and some not. In one larger study of 511 patients, an anti-depressant significantly improved both depression and memory. Research currently underway may yield more information. Israeli researchers are conducting a trial of Escitalopram (Lexapro, Cipralex)) for depressive syndrome in various dementias, and there’s also a U.S.-based trial of Zoloft for depression in Alzheimer’s disease.

But the published trial results are really more positive than it first appears, because many show large improvements in the patients taking antidepressants AND in those taking placebos. For example, researchers from the Raul Carrea Institute of Neurological Research in Argentina published the results of a trial of anti-depressants in 41 depressed Alzheimer’s patients. The symptoms of depression went away in 47% of patients treated with the anti-depressant, and in 33% of those treated with placebo. The large placebo effect may be due to non-drug factors such as the attention paid to patients and caregivers during clinical trials, or to the fact that depression in Alzheimer’s patients seems to come and go. Even though it’s not well understood, Dr. Zubenko says this finding means doctors can provide some assistance for AD patients with depression.

“The goals of most controlled clinical trials are somewhat different from the goals of clinical care,” he explains. “Most controlled clinical trials are designed to evaluate whether a particular treatment is effective. To accomplish this, the only difference between the treatment and control groups is the specific treatment whose potential benefit is being evaluated. These controlled trials are important because they provide scientific information from which healthcare professionals and caregivers can decide what treatments work for a particular condition and which do not. Doctors recommend treatment plans for individual patients based on this information, but are not limited to one particular treatment approach. In such cases, we often recommend multiple interventions to maximize the likelihood of a beneficial response, hopefully in an organized way, so that we can also infer which interventions are benefiting the patient. This practical approach is especially important when time is of the essence--e.g the patient's condition is deteriorating in ways that place them in harm's way, they are dangerous to others, or when other practical realities limit the available duration of treatment (such as often occurs in inpatient settings).”

Medications are helpful, but “nonspecific clinical interventions can have valuable effects on optimizing function and minimizing disability,” Dr. Zubenko says. “Patients who are in physical pain or discomfort, or are impaired in other ways by medical problems or medication side effects, commonly have secondary disturbances of mood and cognition. Performing a complete medical evaluation and optimizing general health care can have significant positive effects on level of function and the quality of life. Supportive care is also important-- improving nutrition among malnourished patients, addressing personal hygiene, normalizing and structuring daily activities, providing a safe environment with activities and aids that facilitate memory and promote normal functioning , and reevaluating these plans periodically to ensure that they remain appropriate to the patient's needs. Based on my clinical experience, major depression in AD patients usually responds best to a multimodal treatment approach.

It's also important to remember that the ongoing care of a patient with AD is a challenging task for the caregiver. Over the intermediate and long term, it is necessary to provide support, education, assistance, and resources to the caregivers as well. Proper attention and support reduces the stress on caregivers and decreases or delays the need for institutionalization. Failure to do so results in poorer outcomes for both patients and caregivers alike.”

So, major depression and dementia are closely linked, and our understanding of causes and treatments for both of these diseases is still incomplete. For depression sufferers around the world, there’s an increased risk of AD. And for Alzheimer’s patients around the world, there’s a potential depressive ripple effect, for both patients and caregivers.

Careful medical attention for both the patient and the caregiver may help, but I wonder how many patients and caregivers can get this attention. In my family’s experience, it was difficult to coordinate Dad’s care between his family physician and his neurologist, let alone “optimize” all the factors Dr. Zubenko talks about. If my father had lived long enough to need intensive caregiving, only minimal assistance and resources would have been available to us.

It’s hard to find the silver lining in this research, but Dr. Zubenko put it in perspective for me. “We’re trying to treat a complicated behavioral syndrome in the context of degenerative brain disease – any progress is remarkable, and efforts to optimize treatment are well worth it for patients and their family members,” he says.

Change of Shift

The latest edition of A Change of Shift, a nursing blog carnival, is up at Emergiblog. These posts by nurses, surgeons, patients and others remind me that dementia isn't the only health problem people struggle with...

The Patient-Consumer Parade

Lately I've been thinking how difficult it is for dementia patients, caregivers and concerned laypersons to participate in dementia research or even individual treatment decisions.  When Dad was alive, this left me frustrated and uncertain, and I'm sure it was worse for him.

Part of the problem is the nature of dementia, and how complex and confusing the research is.  But there's another reason it's difficult to participate:  they way most healthcare is "dispensed."  It often seems to me that medical care is done "to you" instead of "for you."  I don't blame doctors or researchers - it's really a system-wide problem.  So I was interested to find the Patient-Consumer Parade, a blog carnival focused on the question "Why can't patients be treated with the same respect consumers elsewhere get every day?"

One of my posts is part of Patient-Consumer Parade #6 hosted at Six Until Me.  The theme of Parade #6 is how patient-consumerism is woven into our daily lives.  After reading through the posts by caregivers, diabetics, med students, migraine sufferers and others, I see that other people besides me are rethinking the patient's role in the healthcare universe. 

Memory Lane Webring

Michael Murphy, author of Smoke and Mirrors, has set up the Memory Lane Webring as a resource for dementia patients, caregivers and concerned family members.  I'm honored that The Tangled Neuron is listed on his page of Alzheimer's-related blogs. 

Memory Lane Webring Logo

The Memory Lane Webring blogs are a great source of information and comfort for the millions of caregivers of Alzheimer's and dementia patients.  Thanks Michael - I look forward to watching your Webring grow.

The Cost of Alzheimer's and Dementia Care

In her blog The Yellow Wallpaper, Deb Peterson lists financial worries as the number one stress in caring for her mother, who suffers from dementia.  "If I knew that my mother was assured of the care that she needs, right up until the end of her life, I might feel less stress," Deb writes.

She's in good company.  Researchers from the Karolinska Institutet in Sweden told attendees at the International Conference on Alzheimer's Disease and Related Disorders Sunday that they estimate worldwide costs for dementia care at US$ 248 billion per year.  Even averaging in lower costs for developing countries, that's almost $9000 per person per year.

In the U.S., costs are probably higher, and much of the burden is carried by families.  Here's some estimates on U.S. costs from the Alzheimer's Association:

• Cost of Alzheimer's care                                                                $100 billion per year
• Percent of Alzheimer's patients living at home                                  70
• Percent of care for those patients provided by families                       75
• Average annual cost of paid home care for remaining 25% of care      $19,000 (most paid by families)
• Average cost of nursing home care per year                                     $42,000
• Average lifetime cost of care for an Alzheimer's patient                    $174,000

Contrast these numbers with the proposed federal spending on Alzheimer's research for fiscal year 2007:  $645 million.

No wonder Deb and others who face these costs every day are stressed out about finances.

Caring for the Caregiver

In my last post, I reported on some of the work of Dr. Peter Vitaliano and his colleagues to measure caregivers’ health problems. I asked him what is being done about these problems on a practical level.

“After repeated studies have documented the stress and mental and physiological health problems caregivers experience, people are finally paying attention.” Dr. Vitaliano says. “In the US, there’s more funding available for caregiver assistance, and more programs in each of the states.”

My quick search for caregiver information and assistance yielded several sites with lots of information [mostly in English]:

*US National Library of Medicine and National Institutes of Health – MedlinePlus
*US Government eldercare locator
*AARP caregiving info
*Family Caregiver Alliance
*National Alliance for Caregiving.

The amount of information on these sites is impressive, but I’m not sure it’s indicative of the amount of help actually available to a caregiver. The Family Caregiver Alliance has published the results of a two year survey of assistance for caregivers in the 50 states. They concluded that assistance is uneven in the US.

My family had some experience with this. The memory clinic at the major university where dad was treated had a social worker, but she was not able to offer any resources, support or counseling for my parents. She ran a support group, but my parents would have had to drive three hours if they wanted to attend meetings. I called the Area Agency on Aging office responsible for caregiver support in the fairly rural area where my parents lived. When I said I was calling to find out what resources might be available to my parents, the Family Resource Specialist who answered the phone first asked me to tell her where they lived. “But that’s an interfacing community!” she said. I guess that was social worker speak for “you should rely on your neighbors.” In fact, my parents’ neighbors helped with everything from repair work to dog-sitting to just checking in with Dad when Mom was at work. They couldn’t have been more supportive.

Here’s what the agency could offer:

*A one-time, six hour caregiver conference about two hours away [my mother and sister did attend]
*The once a month meeting of the local chapter of the Alzheimer’s Association
*A list of companies offering various services we could pay for.

In my parents’ state, there were some respite care services staffed by volunteers, but availability was spotty.

At a caregiver’s seminar in Florida, I learned that assistance from the Veteran’s Administration (VA) might be available since Dad had been a pilot in the Air Force. When I called the Veteran’s Administration, they said there was a long waiting list for services. My mother went to the local VA office to start the paperwork to get Dad into the system, but it didn’t sound like we should count on any assistance anytime soon.

A report from the Family Caregiver Alliance on caregiver policies in selected countries confirms that there is a wide variety of situations and programs across the US. Policies seem more uniform and more robust in some of the other countries examined [the table starting on page 12 compares countries]. In Germany, for example, caregivers receive payment and credit for their work in the public pension system. Community-based services and up to four weeks of vacation (with respite care) are available. I don’t know how well this more comprehensive policy translates to real help for caregivers.

Even when assistance is available, caregivers may not take advantage of it. At least in the US, my experience is that caregivers’ embarrassment about dementia may keep them from asking for help. Dr. Vitaliano says he has anecdotal evidence that many caregivers won’t take advantage of respite services because they don’t think the quality of care will be as good as what they provide. This may be universal – a qualitative study by researchers at the Universite Rene Descartes in Paris acknowledges Alzheimer caregivers’ reluctance to take advantage of community services, and explores the role of gender, family history and cultural norms in their reluctance.

When it comes to healthcare for the caregiver himself, problems getting time off and transportation for doctors visits can be real barriers. Home visits may be a solution, but at least in the US, they are not typically available. Another problem in the US, as Paula Martinac pointed out in her comments on the previous post, is that many caregivers are self-employed or don’t work outside the home at all. This usually means they don’t have health insurance to pay for the care they need.

If caregiver assistance were widely available, would it make a difference? University of California scientists studied the effects of a Medicare Alzheimer’s Disease demonstration program in the US. Caregivers enrolled in this program had increased access to community based services, including case management, caregiver education and training, support groups, counseling and transportation. Unfortunately, these services didn’t reduce caregiver burden or depression much at all.

Researchers are still trying to figure out what services will really help caregivers. The University of California researchers mentioned some possible needs in their conclusion: 24 hour care, crisis intervention, chronic disease management, and the kind of collaborative care Drs. Vitaliano and Katon wrote about in their article.

In the US, the National Institute of Aging is recruiting caregivers and non-caregivers to evaluate the effects of telephone-supervised, home-based counseling on diet and exercise.

It could be that the type of assistance offered has to be targeted to various segments of caregivers. A study of 225 White American and Cuban American caregivers carried out at the University of Miami found that a combination of family therapy and “technology intervention” [telephone and computer] significantly reduced depression after six months. The results of this study showed that services had different impacts depending on the caregiver's ethnic group and the caregiver-patient relationship.

The more I talk with caregivers, the more I realize my sister was right when she called my father’s death “Dad’s last gift.” We were really lucky that Dad died before he needed much in the way of care.