Posted at 09:18 AM in Care, Living with Memory Loss, Treatments | Permalink | Comments (0) | TrackBack (0)
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Continue reading "From AA to AD, A Wistful Travelogue: Book Review" »
Posted at 06:46 PM in Living with Memory Loss | Permalink | Comments (1) | TrackBack (0)
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Posted at 03:03 PM in Living with Memory Loss | Permalink | Comments (1) | TrackBack (0)
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Posted at 10:03 AM in Living with Memory Loss | Permalink | Comments (2) | TrackBack (0)
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Last month, a group of people with memory loss, their families and doctors successfully petitioned the French Alzheimer’s Association to drop plans to promote a video of people who appeared to have very advanced dementia in dire situations.
This week, I got an email invitation from the national Alzheimer’s Association to view a similar video of a young daughter dealing with her confused and paranoid mother. It has the same feel as the French Alzheimer’s Association video – stark and flat, with dark music in the background.
This video may represent one family’s reality. But with the help of treatments, adjustments to lifestyle, coping mechanisms and friends and family, people diagnosed with Alzheimer’s and other dementias often lead interesting and pleasant lives. Why not a video showing someone volunteering in the community, enjoying his family, or playing a musical instrument?
There’s still too much shame and horror about a diagnosis of dementia, and some of that is fed by one-dimensional portrayals like this video. We need to balance our view by focusing on the strength and dignity of people with memory loss.Posted at 07:18 AM in Living with Memory Loss | Permalink | Comments (7) | TrackBack (0)
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Posted at 11:52 AM in Care, Living with Memory Loss | Permalink | Comments (1) | TrackBack (0)
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Continue reading "Q & A with John Zeisel, Author of I'm Still Here" »
Posted at 09:37 AM in Care, Living with Memory Loss | Permalink | Comments (4) | TrackBack (0)
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Posted at 04:36 PM in Living with Memory Loss | Permalink | Comments (0) | TrackBack (0)
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Marcel Brasey recently emailed to tell me about a video called “Fortunately” that the French Alzheimer’s Association planned to air on television and on their web site. The video seems to show people with very advanced dementia in dire situations.
A woman urinates in the grocery store, another stares blankly into the camera with blood running down her face, a man eats dog food, etc. Dark music plays in the background. At the end, the words on the screen say “Fortunately, they won’t remember.”
Continue reading "The French Alzheimer's Association Drops Plans for Video" »
Posted at 03:10 PM in Living with Memory Loss | Permalink | Comments (3) | TrackBack (0)
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Summary: The FDA’s “Expanded Access to Investigational Drugs for Treatment Use” rule provides a way for patients who can’t participate in clinical trials to gain access to potential treatments not yet approved by the FDA. Despite optimistic headlines about Alzheimer’s cures and breakthroughs, many drugs currently in trial seem to have only incremental benefits. This may keep demand for expanded access to potential Alzheimer’s treatments low.
Over the past few months, I’ve received several emails from people diagnosed with Alzheimer’s or their caregivers asking how they can get access to Alzheimer’s drugs still in clinical trials. Most of these inquiries were about Dimebon, Rember or potential “Alzheimer’s vaccines” such as Bapineuzumab.
In each case, someone saw an optimistic media report about the promise of a drug in clinical trials (an “investigational drug”), and wanted access to it before trials were completed and it could be approved for the U.S. market.
Continue reading "Access to Potential Alzheimer's Treatments Outside of Clinical Trials" »
Posted at 12:09 PM in Care, Living with Memory Loss, Treatments | Permalink | Comments (2) | TrackBack (0)
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DASN (Dementia Advocacy and Support Network) International is an online support group for people with dementia. Thanks to one of its members, Morris Friedell, for pointing out an article in the February 2008 edition of Dementia about a small study by Welsh researchers on the benefits of participating in this group.
Posted at 02:42 PM in Living with Memory Loss | Permalink | Comments (1) | TrackBack (0)
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Judy Robbe runs support groups and works towards improving the quality of life for people with dementia and their families in Brazil. If you speak Portuguese, check out her beautiful new site Harmonia de Viver.
Posted at 02:30 PM in Living with Memory Loss | Permalink | Comments (3) | TrackBack (0)
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When my father was in his late 60s, he started having trouble finding words. As his memory and thinking went downhill, so did his speech. I knew it frustrated him, and sometimes I jumped in with a suggestion when he was groping for a word.
After talking with Jackie Christensen, I’m not so sure that was a good idea. I met Jackie last week at the FDA Patient Representative Workshop we both were attending. She has Parkinson’s, and wrote a great piece in the Washington Post explaining that even though her speech is sometimes halting, she can speak for herself.
Continue reading "Are We Stifling the Voices of People with Dementia?" »
Posted at 02:38 PM in Care, Living with Memory Loss | Permalink | Comments (0) | TrackBack (0)
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Ten years ago, Marcel Brasey was diagnosed with Alzheimer’s at age 54. He maintains a French-language website called Survivre avec une maladie d’Alzheimer about his experiences, thoughts and philosophies.
Last month, he traveled from his home in Geneva, Switzerland to give a talk at a La Maladie d’Alzheimer Un Defi Social (Alzheimer’s Disease: A Social Challenge), a large conference in Paris.
The conference organizers asked him to present the patient’s view, Marcel says, and with the help of his family and a memory clinic in Geneva, he delivered a talk [Download Marcel Brasey's speech]. Congratulations Marcel!
Posted at 05:55 PM in Living with Memory Loss | Permalink | Comments (1) | TrackBack (0)
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If you’ve been diagnosed with Alzheimer’s or another dementia, or just have some mild memory loss, simple changes around the house can make your life safer and easier. This was the topic of a talk given recently by Jack Partington and Heather Black, in-house physical and speech therapists at Freedom Square, a Brookdale Senior Living community here in Florida.
Posted at 12:56 PM in Care, Living with Memory Loss | Permalink | Comments (2) | TrackBack (0)
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All too often, people are diagnosed with early stage Alzheimer’s or other dementias, then sent home with little advice on what to do next. Although many of their capabilities are still retained, their cognitive problems can affect their social and family lives and make it difficult to work or volunteer. Unless they live in an area that has early stage support groups, there are few resources available to them to help with these issues.
Mike Donohue, a blogger diagnosed with Alzheimer’s three years ago, participated recently in a panel discussion addressing early stage needs. He and other panelists presented concrete recommendations for resources they feel should be available:
Continue reading "Mike Donohue Reports on Early Stage Needs" »
Posted at 06:08 PM in Care, Living with Memory Loss | Permalink | Comments (3) | TrackBack (0)
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In my last report from the Mild Cognitive Impairment (MCI) Symposium, I wrote about research on disclosing a diagnosis of dementia. But what if the diagnosis is MCI, not dementia? Bill Haley, Professor at the School of Aging Studies at the University of South Florida, gave a presentation focusing specifically on this topic. This next report summarizes his presentation on recent USF research in this area.
Posted at 10:40 AM in Care, Diagnosis, Living with Memory Loss | Permalink | Comments (0) | TrackBack (0)
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Alexandra Zaleta and Brian Carpenter, Ph.D.
My last few reports from the Mild Cognitive Impairment (MCI) Symposium were about the symptoms seen in people with MCI and the conditions that may underlie it. These are researchers' views. But what do patients think about MCI?
There were no patients or family members at the Symposium, but two presentations began to deal with that question. The first, by Brian Carpenter, Associate Professor of Psychology at Washington University, was about disclosing a diagnosis of dementia. Dr. Carpenter and his colleagues (including Alexandra Zaleta, a graduate student pictured here with Dr. Carpenter at the MCI Symposium) have been examining how doctors tell patients and families about a diagnosis, and what patients and families hear. You can find details of his presentation in the latest report from the MCI Symposium.
Posted at 02:27 PM in Care, Diagnosis, Living with Memory Loss | Permalink | Comments (0) | TrackBack (0)
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Now in its second year, Camp Building Bridges is a camp for children ages 13 to 17 whose parents or grandparents have dementia. The camp provides education and support for these teens, as well as a break from their daily worries. This year's camp is July 19-25 at Camp Takatoka in Chouteau, Oklahoma.
The camp is the brainchild of Allen and Tracy Mobley (Tracy has dementia), who want to help children like their son Austin deal with the challenges of living with a family member with dementia. This year, the camp is a project of the Oklahoma/Arkansas chapter of the Alzheimer's Association.
Some needs-based scholarships are still available. For more information, contact Tracy and Allen at 417-933-2030 or tiger@centurytel.net.
Posted at 05:19 PM in Care, Living with Memory Loss | Permalink | Comments (0) | TrackBack (0)
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A lot of our conversations about memory loss include phrases like “fight against this terrible disease” and “loss of sense of self.” When I talk with people who have mild to moderate memory loss, though, many are more positive about their lives. They mention how much they enjoy gardening, the arts, animals, family and friends. Some say the “silver lining” of their memory loss is that they’ve become more appreciative, more spiritual and more able to live in the moment.
This less fearful view is starting to be reflected in the media. Last year, Newsweek published a piece about “pleasant dementia.” A recent Speaking of Faith interview and a new book by Dr. John Ziesel also present some positive aspects of memory loss.
Continue reading "Appreciation and Respect for People with Memory Loss" »
Posted at 11:18 AM in Living with Memory Loss | Permalink | Comments (3) | TrackBack (0)
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