8 Practical Tips for Living with Memory Loss


I turned 50 last year.  Given my family history of dementia, I was not happy to read that as many as half of people my age and older have some memory loss. 

I've noticed my already poor navigation skills have declined lately, and I can't multitask the way I used to.  It's not just me - my friends complain about missing appointments, bouncing checks and forgetting words.  Even worse, they lose the calendars and smartphones that are supposed to keep them on track!

Modern medicine doesn't have a cure for memory loss, at least not yet.  Without a medical fix, are there things we can do to make living with memory loss easier?  I posed that question to some of my friends with more serious memory loss.  Here are some of their practical ideas that make sense to me:

1.  Experiment with a whiteboard for orientation and reminders. Use to record the date, where family members are, appointments, reminders, etc.

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Chuck Jackson to Testify at U.S. Senate Hearing on Alzheimer’s

Chuck_507_copy My friend Chuck Jackson, who along with many family members has early onset Alzheimer’s disease, will testify at a U.S. Senate hearing on Alzheimer’s tomorrow (Wednesday May 14th). The hearing starts at 10:30 AM eastern time. A link to the live webcast will be available at http://aging.senate.gov/.

Note:  you can now watch the webcast of the full hearing at any time, or read a transcript of Chuck's testimony.

Two Articles on Early Onset Alzheimer's

Two of my friends are featured in recent articles about Alzheimer's. An article in the Appleton, Wisconsin Post-Crescent tells the story of the dementia that runs in Chris VanRyzin's family, and how a combination of prescription medicines, supplements and lifestyle changes have gradually improved her health. Chris is the founder of forMemory, a non-profit working to share information to prevent and treat early onset Alzheimer's and related disease.

Jim Cook's work to help identify people under age 65 with memory loss in the Lincoln, Nebraska area is profiled in the Kearney, Nebraska Hub article. Jim was diagnosed with probable Alzheimer's when he was 55.

Creativity and Memory Loss

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Are people with memory loss more creative? It seems many have taken up painting, writing or playing an instrument. Donna Beveridge has taken up all three.

Donna, 65, is a retired elementary school teacher diagnosed last year with early stage probable Alzheimer’s. She lives with her partner Betsey and their two cats, Shadow and Idgy, near the coast of Maine. Her three children and their families live close by.

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David Shenk's Talk on Alzheimer's at the Early Memory Loss Forum

Two years after my father’s death, people ask why I’m still researching and writing about Alzheimer’s and dementia. I tell them I want to help other families who are going through what mine did. I also tell them that Alzheimer’s researchers are teaching me a lot about science. What’s harder to explain is that people with dementia are teaching me a lot about life.

David Shenk, author of The Forgetting: Alzheimer's: Portrait of an Epidemic, put this into words during his keynote speech at the Early Memory Loss Forum.

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David Shenk, author of The Forgetting, with Judy Wurtz, Director of Volunteers and Member of the Board, California Southland Chapter of the Alzheimer's Association at the Early Memory Loss Forum


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Detecting Alzheimer’s and Other Memory Disorders Before Symptoms Appear: The FDDNP-PET Scan

Summary: PET scans using a compound called FDDNP show promise for detecting Alzheimer’s and other neurodegenerative diseases before symptoms are apparent. If follow-up studies confirm the accuracy of this imaging technique, researchers will be a step closer to the vision of early detection and treatment to delay progression.

When my father complained about memory problems, his family doctor told him there was nothing wrong.

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Does Memory Loss Mean Loss of Self?

Summary: A new paper shows that many people with dementia lead rich and meaningful lives.

One of the reasons a diagnosis of Alzheimer’s has carried such a stigma is the view that having the disease means losing all your memories, and therefore, losing your “self.”

But the idea of losing your sense of self as you lose your memory doesn’t really fit with much of what I’ve observed. Even as my father lost his memories, he kept his sense of humor, his sense of rhythm and melody, and his sense of right and wrong. Even as he lost track of his exact relationship with friends and family, he kept his sense of love for all of us. I would argue that he never lost his sense of self.

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Education, Cognitive Reserve and Alzheimer's

Summary: A recent study confirms that higher levels of education seem to delay cognitive decline, but may increase the rate of decline once it starts. The results of this study don’t mean much for any one person. But they do mean that memory loss might not be readily apparent in people with Alzheimer’s, especially those with more education. The findings point to the need to detect changes in the brain before the symptoms of Alzheimer’s and other dementias appear. This will be especially important when treatments to delay progression are available.

The title of a recent press release from the American Academy of Neurology (AAN) caught my eye – “Educated People Who Develop Dementia Lose Memory At A Faster Rate.” The press release was based on study results published in the October 23, 2007 issue of the AAN’s journal Neurology.

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Cognitive Stimulation Using The Serper Method™

Summary: The Serper Method™ is a cognitive stimulation program that emphasizes personal and cultural information, along with social and conversational skills. Although more testing is needed, anecdotal reports and results of a small pilot program are encouraging.

Dr. Lynn Serper, a teacher for children with learning disabilities, was in her late 40s when she suffered a ruptured brain aneurysm, then a stroke and fell into a coma. When she awoke, she couldn’t talk, read, write or think clearly.

Ignoring her doctors’ pessimism about her condition, she decided to put together a recovery program for herself based on exercises she had developed for the classroom. “If children with learning disabilities could learn from my methods, why couldn’t I?” she says.
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She attributes her eventual recovery to her program, which combined reading exercises with information about history, geography and current events. After working through the program for six years, she was able to complete a dissertation, and earned a doctorate in Cognitive Education.

During her recovery, she refined the exercises to develop The Serper Method, a cognitive stimulation program for people with dementia, aphasia [loss of ability to speak or understand speech] and traumatic brain injury. In her book, Brainstorming : The Serper Method of Brain Recovery, Regrowth, and Vitality, Dr. Serper tells the story of her illness and recovery, and how she developed her program. She has also published a series of workbooks which can be used by individuals, or in group or private sessions led by someone trained in the The Serper Method.

A Different Approach to Cognitive Stimulation

Because of Dr. Serper’s background, The Serper Method emphasizes personal and cultural information, as well as social and conversational skills.

From her experience as a teacher, Dr. Serper knew that children seemed to learn more when the learning process was related to their culture and their interests. And in her opinion, as her students learned more, their self-esteem and socialization skills increased.

She applied the same concepts when developing her workbooks. “The stories in the workbooks are true and inspirational,” she says. “The history is drawn from the American experience, often within the lifetime of the learner, and geography is based upon location, facts and tales from the different regions of the United States. In this re-learning, individuals have an opportunity to gather information for conversations based on memories and experiences.”

Comparing her method to other cognitive stimulation programs, Dr. Serper says she thinks “both methods effectively offer individuals ways to strengthen brain function, though by different means. The Serper Method adds a focus on conversation and social interaction. In a perfect world, persons would have the opportunity to take part in both programs.”

Initial Results

Through her company Brain Enhancement Services, Inc., Dr. Serper provides consulting and training services based on her method. She reports that she has been able to stabilize the cognitive abilities of persons with dementia and that two community programs using her method have shown encouraging results, either improving/stabilizing cognitive abilities or increasing socialization.

In addition, Boston University Researchers conducted a six month pilot program to test whether The Serper Method could improve memory and cognitive and social functioning for persons with early-stage Alzheimer’s disease. According to Dr. Serper, focus groups and questionnaires showed that participation improved self-image, conversation, socialization and interest in daily experiences. However, standard neuropsychological tests did not show improved scores for participants. More testing with a larger group is needed to confirm these results.

The Workbooks

“Following my stroke,” Dr. Serper says, “I found that losing access to factual information of the past limited my ability to understand the information of each present day. Reading the newspaper was confusing since I had limited information of past events and struggled with concepts and understanding. It was amazing to me how much of what we all know and learn is based upon the foundations and building blocks that were learned in the past. I felt like all the knowledge and categorization of that knowledge was no longer available to me.” She focused on the foundations she felt she couldn’t access – history and geography – when developing her workbook series.
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“The workbooks contain predominantly frustration-free activities,” she says, “with lots of repetition, or memory stimulation, in the form of puzzles, brain twisters and a reference or clue system for answering questions. The goal is exercising different segments of the brain.”

Can persons with early-stage dementia get results by going through the workbook exercises on their own? “I believe that most persons with MCI [Mild Cognitive Impairment] or early-stage dementia will need to be taught how to use The Serper Method over a period of a month or two,” she says. “Individuals with mid-stage dementia will need the assistance of a Cognitive Educator [her trademarked term for someone trained to guide learning sessions based on her method]. Family members can also be trained to guide, if they would like.” CD recordings of the workbooks are available for those with visual, reading or speech limitations.

Whether or not a person with dementia is using her method, Dr. Serper has some advice for them. “Individuals and families should know that learning and socialization does not end with a diagnosis,” she says. “As long as there are healthy brain cells there is hope for enjoying life experiences and increasing life’s vigor and possibilities.“
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Early Memory Loss Forum

In late October, I’ll be going out to Los Angeles to attend a one-day symposium for people with early memory loss. The symposium, called “Living Our Lives, Planning Our Futures” will feature talks by David Shenk, the author of The Forgetting, and Dr. Gary Small, Director of the UCLA Center on Aging and author of several books on improving memory and brain health. The event is hosted by the Alzheimer’s Association California Southland Chapter, in cooperation with the University of Southern California (UCLA) and the UCLA Alzheimer’s Research Center.

The real meat of the program will be the eight breakout sessions on topics such as “Communications and Relationships,” “Stimulating the Brain,” and “Re-defining Early Stage Dementia.” Persons with early memory loss or dementia will be on session panels, and audience participation is encouraged.

The event is the brainchild of Rich Bozanich and Jay Smith, both of whom have been diagnosed with early onset Alzheimer’s disease. Rich, a former journalist, and Jay, a former architect, met in a support group in southern California. When the New York chapter of the Alzheimer’s Association put on a conference for people with early memory loss, both men were intrigued. They decided to develop a similar conference in LA, and the local chapter agreed to help.

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Rich Bozanich (left) and Jay Smith
photo courtesy of James Smith

Now co-chairs of the symposium, Rich and Jay have worked for over a year to develop the event to meet the specific needs of persons with early memory loss, mild cognitive impairment and early-stage dementia. They chose the breakout session topics based on the results of a survey they sent out to members of various support groups.

“We have people planning to attend from New York, Colorado, Minnesota, Oregon, Hawaii, British Columbia, and Washington, D.C., among other places,” Rich says. He expects attendees will be a mix of persons with early memory loss, care partners and professionals.

Rather than the typical format - educational sessions for care partners and “day care” for persons with memory loss - all attendees will be welcome at all sessions. Jay and Rich hope that care partners and professionals will learn from the panelists and attendees who have memory loss.

The idea of services and support for persons with memory loss by persons with memory loss seems to be an emerging trend. Two online support groups, DASN International and DementiaUSA are run by persons with dementia. Another group, forMemory, is being organized to share information about treatments for early onset Alzheimer’s and related diseases. After all, who knows best what people with memory loss need?

The Early Memory Loss Forum will be held on October 27, 2007 at the Skirball Cultural Center in Los Angeles. For more information, please call 323-900-3180 or email earlystageforum@alzlarsb.org.

Alzheimer's Risk Factors, Genetics, Family History and Prevention

Gben_6 “I don’t know why I can’t remember words lately,” my maternal grandmother said to my mother. Grandma Ben (shown here at her college graduation in 1924) was then in her early 80’s, brisk and competent. Kilo_front_porch_2 Around the same time, my paternal grandmother (right) started getting lost while driving around our small town. “Kilo,” as we called her, was in her early 70’s. And when my father (below, on the Pamlico River with his dog Beau) was in his late 60’s, he too had trouble finding words. They all went on to develop dementia. So it isn’t surprising I had a personal interest in a presentation called “Family History as a Risk Factor for Alzheimer’s” at the Wisconsin State Conference on Alzheimer’s Disease and Related Disorders earlier this month. The talk was given by Dr. Mark Sager, Director of the Wisconsin Alzheimer’s Institute at the University of Wisconsin. For early onset Alzheimer’s disease, family history is a huge risk factor. But the majority of people who develop dementia do so later in life, and it’s not clear what role family history plays in these cases. One genetic variant (APOE4) is associated with increased risk of late onset Alzheimer’s, and researchers are working to confirm the risk associated with another gene, SORL1. But these weakly associated genes don’t allow us to predict with any accuracy who will develop Alzheimer’s. Are there other inherited or family risk factors? This isn’t clear, says Dr. Sager. “We know nothing about the adult children of Alzheimer’s disease - we don’t really understand the risk.” Dad_beau_pamlico_river_3 By tracking these adult children through a program called WRAP (Wisconsin Registry for Alzheimer’s Prevention), Dr. Sager and his colleagues hope to address this knowledge gap. The average age at enrollment of the more than 1000 WRAP volunteers is 53, much younger than when the first symptoms of Alzheimer’s typically appear. Why study people before they develop dementia? “Alzheimer’s is labeled an old person’s disease because the brain is so resilient that the disease manifests when people are in their 60’s, 70’s and 80’s,” says Dr. Sager. “But actually, the brain begins to fail much earlier.” Scientists hope that within a few years, Alzheimer’s will be more like heart disease in that we will be able to identify who is at risk, and begin treatment before symptoms appear. “The presence of symptoms means the disease is at an advanced stage,” Dr. Sager says. “We want to intervene before that.” What does data from the first wave of testing in the WRAP program show? On average, the neuropsychological test scores of the adult children of Alzheimer’s are the same as those of volunteers whose parents didn’t have the disease. But even though they have no apparent cognitive problems, the brains of volunteers whose parents had Alzheimer’s seem to work differently. During functional MRIs, participants with a family history of Alzheimer’s show less activity in the part of the brain called the hippocampus when viewing new items. A second wave of testing, funded by a grant from the U.S. National Institutes of Health, will determine if the Alzheimer’s children’s thinking and memory has declined over the four year interval between evaluations. These tests will include PET scans using the new Pittsburgh Compound B imaging to map amyloid deposits in the volunteers’ brains. WRAP data is also being used to study risk factors besides family history, including: - previous surgeries (often associated with post-operative memory problems) - high cholesterol (and the use of statins) - hormonal status (along with the use of hormone therapy). Even before we understand how to prevent or delay Alzheimer’s, the staff at WRAP is developing a pilot study of interventions based on the available research. Study volunteers who develop Mild Cognitive Impairment will be offered these interventions in an attempt to slow or prevent further decline. Interventions will probably involve the lifestyle factors that research has shown may lower the risk for Alzheimer’s, such as cognitive and leisure activities, moderate alcohol consumption and physical exercise, as well as reducing psychological stress or untreated depression. Dr. Sager and his colleagues are also following the research on substances that may delay onset or slow progression of Alzheimer’s. It’s too early to recommend them for prevention, and some have bad side effects. You should check with your doctor before considering any of these treatments on Dr. Sager’s watch list: - estrogen - ginkgo [but many formulations contain contaminants – I’ll write more about this soon] - medicines that lower blood pressure - folic acid - non-steroidal anti-inflammatory drugs - Dr. Sager notes side effects including kidney damage have caused trials of these medicines for Alzheimer’s to be discontinued. - statins - trials are ongoing - selegiline [I plan to write more about this over the summer] - vitamin E - supplements are controversial, so it’s best to try to get this vitamin from foods, Dr. Sager says. - cholinesterase inhibitors [but there’s not enough evidence that these help before symptoms appear]. Want to help? You don’t have to live in Wisconsin to volunteer for WRAP, but you must be able to travel to Madison for testing every four years. People whose parents did not have Alzheimer’s are also needed for comparison. If you’re interested, contact Janet Rowley at 608-829-3306 or jsrowley@wisc.edu. If all of us with family histories of dementia can work with researchers in programs like WRAP, maybe our children and grandchildren will never experience the first symptoms of a failing brain.

Cognitive Rehabilitation For People With Alzheimer's and Dementia

Summary: Results of a small trial show cognitive rehabilitation can help people with mild Alzheimer’s improve their ability to perform practical tasks. Unlike cognitive stimulation programs, cognitive rehabilitation is designed to improve specific skills. Rehabilitation may help people with memory loss stay functional and independent, but more research is needed.

Morris Friedell was diagnosed with Alzheimer’s disease in 1998. “I had a feeling that all I could do was wait for the axes to fall, one after the other,” the retired sociology professor wrote in his year 2000 essay “Potential for Rehabilitation in Alzheimer’s Disease.” “I’d lose my ability to drive, to budget, to speak coherently, to dress myself, to use the toilet. I thought: I must plan to die when I can still do so with dignity. I still believe that’s a meaningful challenge, but the greater challenge is how to live as fully as I can until that time. And that’s where rehabilitation comes in.”

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Morris F. Friedell, Ph.D.

A former sociology professor, Morris adapted techniques from traumatic brain injury rehabilitation programs and from psychotherapy to develop his own rehab plan. His efforts seem to have paid off, although it’s hard to know what led to his improvement. This is because Morris’s diagnosis is tentative, as are the diagnoses of many others with early stage dementia. “Since 2001,” he writes, “my neuropsychological testing has shown an absence of clinical dementia (although, in real life, conversations and TV sitcoms continue to move too fast for me). Perhaps my rehabilitative efforts have been more or less successful, or perhaps (despite the indications from PETs, MRIs and a qEEG) I never did have brain pathology, or even perhaps neither.”

Morris is running a bit ahead of science. Cognitive rehabilitation for dementia is a fairly new idea, and not much funding has been allocated towards research in this area. Maybe that’s because we tend to write off people with dementia.

Early Studies of Cognitive Rehabilitation Show Promise

“Until recently, there was an unfortunate bias that Alzheimer’s disease patients could not learn,” says Dr. David Loewenstein, 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 Miller School of Medicine at the University of Miami. In an article published in the American Journal of Geriatric Psychiatry in 2004, he and his colleagues described results of a trial showing that systematic cognitive rehabilitation can help people with mild Alzheimer’s disease carry out specific tasks.

In his study, twenty-five people with mild Alzheimer’s participated in twenty-four sessions of cognitive rehabilitation. They were trained in tasks including face-name association, object recall, making change, paying bills, orientation to time and place, and the use of a memory notebook.

Participants were tested on tasks similar to (but not the same as) those trained on at three points during the study: before rehabilitation, just after the twenty-four sessions, and three months after the sessions had ended.

With the exception of the bill-paying task, their performance on tasks similar to (but not the same as) those trained on improved significantly after rehabilitation. These improvements were maintained three months later. The study authors speculate that no improvement was seen in the bill-paying task because participants did well on this task before rehabilitation began, so there wasn’t much room for improvement.

While their ability to complete tasks increased, study participants’ scores on unrelated neuropsychological tests did not improve.

Everyone enrolled in this study was taking cholinesterase inhibitors, such as Aricept or Razadyne, but rehabilitation may also be helpful for persons with mild Alzheimer’s who are not taking these medicines. “Since the publication of the 2004 paper,” Dr. Loewenstein says, “we have done work that indicates that even those persons not on cholinesterase inhibitors benefit from the cognitive intervention program. We have not, however, conducted a controlled study examining the extent to which the effects of the cognitive intervention may have been augmented by different types of medications.”

There’s no research yet to indicate whether or not rehabilitation would help people whose dementia has progressed beyond the mild stage. “Our studies are on mild and very mild Alzheimer’s,” Dr. Loewenstein says, “and unfortunately at this time are not generalizable to moderate or severe Alzheimer’s disease.”

And what about aging baby boomers? Could rehabilitation help those of us who have problems finding the right word or navigating unfamiliar streets? It’s too early to tell, says Dr. Lowenstein. “Our program is dedicated to Alzheimer's disease, although we have an NIH grant proposal out looking at the effects of cognitive interventions on the abilities of normal elderly adults.”

Cognitive Rehabilitation – Not The Same As Cognitive Stimulation or Brain Fitness

Cognitive rehabilitation should not be confused with cognitive stimulation or brain fitness. Several companies offer cognitive stimulation programs, marketed mostly to healthy baby boomers hoping to stave off dementia. These typically involve memory exercises and games meant to ramp up overall brain activity. Some studies have shown that cognitive stimulation is useful for persons with mild Alzheimer’s, and I’ll write about these in another post. But cognitive stimulation is not the same as cognitive rehabilitation, which aims to improve performance on specific skills.

These differences were addressed in the University of Miami trial, where an additional 19 people with mild Alzheimer’s disease participated in twenty-four sessions of a “mental stimulation” program. The program did not focus on specific tasks, but instead consisted of interactive computer games involving memory, concentration, and problem-solving skills.

The group participating in the stimulation program did not show improvements in functionality comparable to the rehabilitation group, and in fact scored progressively worse in some tasks. “Directly trained skills showed improvements in the intervention group relative to the mental stimulation group,” Dr. Loewenstein says.

Working Around Memory Loss

As with Morris Friedell, rehabilitation for brain injury was a starting point for Dr. Loewenstein. “Dr. Amarilis Acevedo and I developed the cognitive rehabilitation paradigm because we had been successful rehabilitating stroke and traumatic brain injury in our outpatient treatment center,” he says. But unlike Morris, they did not find brain injury rehabilitation techniques to be helpful. “Unfortunately, the existing cognitive and functional treatments for these conditions were not useful for Alzheimer’s,” he says. “The cognitive and functional interventions that we use with Alzheimer’s disease patients employ different learning strategies.”

Just what are those strategies? The University of Miami researchers tested a combination of three specific techniques for rehabilitation of people with mild Alzheimer’s:

- Spaced retrieval – a method of learning in which the time between learning information and retrieval of information is progressively increased. The goal of spaced retrieval is to help people remember information over long periods of time.

- Dual cognitive support – in this technique, cues or ways to remember information are provided both when the fact is learned and when it is remembered or retrieved.

- Procedural memory training – a method in which tasks are practiced repeatedly, rather than trying to memorize the steps necessary to complete those tasks. This technique takes advantage of the fact that although persons with early stage Alzheimer’s may have problems with explicit memory [knowledge of facts, knowing what happened when], they tend to retain their implicit or procedural memory [unconscious knowledge of how to do something; skills]. Using this preserved procedural memory may be key to cognitive rehabilitation.

“What cognitive [rehabilitation] interventions provide is a way for Alzheimer’s patients to take preserved skills (implicit memory, procedural knowledge, motor memory) and apply them to work around cognitive and functional deficits,” Dr. Loewenstein explains.

The actual exercises used in the University of Miami trial were:

- Learning face-name associations using spaced retrieval and dual cognitive support
- Practicing time and place orientation using a calendar and other parts of a memory notebook during rehab sessions and at home
- Manipulating objects as though participants were using them (procedural memory training)
- Pressing mouse buttons in response to various shapes and information that appeared on a computer screen
- Making change for a purchase from a $20 bill
- Paying bills and balancing checkbooks.

“A take home message from our research is that cognitive and functional rehabilitation in early Alzheimer’s should target meaningful real-world cognitive and functional skills by using procedures that bypass the episodic memory deficit (e.g., procedural learning, spaced retrieval),” Dr. Loewenstein says. “The potential for keeping older adults functional and independent for longer periods of time is quite exciting.”

The basis for the improvements seen from cognitive rehabilitation is not clear, he explains. “A number of people tout brain plasticity, but there is no evidence at this time that cognitive rehabilitation affects plasticity in the Alzheimer’s brain and it would be difficult to argue that any biological process in the brain is altered.”

New Trials

Dr. Loewenstein and his colleagues are now conducting a much larger cognitive rehabilitation trial as part of the Florida Alzheimer's Disease Research Center funded by the U.S. National Institute on Aging. “A number of the same techniques in the original study are being employed,” he says, “but we have also focused on more functionally relevant tasks for very mild Alzheimer’s patients including using an ATM machine, using automated telephone menu systems (interacting with a utility company) and even doing simple searches on the internet.” Although this is a five year study, he hopes to have some initial results to report in twelve to eighteen months.

Participants receiving cognitive rehabilitation in the previous study continued to show improved performance in the tasks tested three months after rehabilitation ended. But researchers don’t know how long after that the benefits might last. “In our current studies, we include booster sessions after the initial treatment (two times per month) for six months in an effort to maintain treatment gains. We would like to obtain funding to study the effects of longer booster sessions” says Dr. Loewenstein.

Researchers at the University of Wales are also conducting a trial of cognitive rehabilitation for early stage Alzheimer’s. The trial includes fMRI imaging to help them understand how rehabilitation affects the brain.

Will Your Doctor Write a Prescription for Cognitive Rehabilitation?

Will doctors eventually write prescriptions for cognitive rehabilitation for people diagnosed with dementia? “I think that this is premature at the time given that this field is in its early stages,” Dr. Loewenstein says. “I believe that the future for cognitive and functional rehabilitation is bright and promising but I think that we need more evidence for effectiveness before these types of interventions are considered for clinical practice.

But I would say that we have poured billions of dollars into pharmacological agents that often have very modest cognitive and functional benefits. I think that it is appropriate to study and to develop cognitive approaches which may have even greater impact on certain functional skills and capacities.”

In the meantime, Morris Friedell continues his own rehabilitation program. “I believe that an important reason patients go downhill the way they usually do is because society sends them a devastating message that their lives are already over,” he writes. He has chosen to reject that message, and is working towards his vision of “recovery of autonomy, competence and quality of life after diagnosis with dementing disease.”

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.

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  • This personal site chronicles my search for answers on my father's dementia. Although it's too late to help Dad, I hope any information I can find helps others. Inclusion of links and content generated by others does not imply endorsement. Remember, nothing on this site is meant as a substitute for professional medical advice or for using your own judgment!

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