Social workers in ‘Dear Abby’ advises how to interact with someone who has dementia

September 12, 2010

Reading the newspaper this morning, I was delighted to see a letter to Dear Abby from P.B. in North Carolina, who describes herself as a social worker in two skilled nursing homes over the last six years.

She says she often hears visitors approach patients with dementia with a test: “Do you know ho I am?” or “Do you know who this is?” Of course, it’s a test that the person with dementia will fail, and perhaps become frustrated by.

Instead, the social worker suggests approaching the person by saying, “It is so nice to see you. I am (whomever) and knew you (in what circumstances.)” Not only is this polite, it’s helpful. And it’s usable by brothers, sisters, sons and daughters, even those close to the person with dementia.

“Remember,” P.B. writes, “people who have dementia can remember things that happened a long time ago, but they may not recall what happened in the last five minutes. Visitors should talk about the ‘good old days,’ and everyone will experience a good visit.”

Comments Off | Alzheimer's, dementia, Lewy body | Permalink
Posted by DementiAwareness

Welcome to the DementiAwareness blog

August 28, 2010

In case this is your first time visiting, please allow me to show you around. I am Amber Smith, the health & fitness editor for The Post-Standard in Syracuse. I also manage this blog on my own time.

Here are my two youngest children with my father in July. We got to see him during our trip to Texas (my home) this summer. He was diagnosed with frontotemporal dementia more than two years ago and began living in an assisted living facility in October 2008. It’s been an arduous and heart-breaking conclusion to what was, really, a blessed life. My Dad managed amusement parks. He started as a ride operator and worked his way up. Before that, he worked in the oil fields of Texas. And before that, he was a little boy growing up on a farm, squirreling away rodents and reptiles in his underwear drawer.

Anyway, I started this blog as a place to post information about Alzheimer’s disease and related dementias (FTD is just one) along with personal reflections. One of the things I came across was a blogger named Bruce Bane who has the same disease as my father. I have an ever-growing page of definitions. I also have a bunch of online resources on a separate page. You can also find a list of dementia-related blogs, as well as some of the best dementia-related Twitterers.

I try to blog about significant research relating to dementia, and much of it takes place outside of the borders of the United States. (To read my posts, use the drop-down search feature in the right side column of the blog and select “research.”) I also try to call attention to articles about Alzheimer’s and other dementias that appear in major media outlets. You can “friend” DementiAwareness on Facebook, where I promote my posts, or you can sign up for a free email subscription, (again, scroll down in the right side column.) I am also active on Twitter.

Thanks for visiting! And, feel free to leave suggestions or comments below.

Some of my favorite posts:

“Amusement parks as a metaphor for life.”

“Contemplations over the loss of a pet.”

“Happy 69th birthday to my Dad.”

“Eighteen months later…”

“Blogger Bruce Bane reminds me of my Dad.”

“Orange prompts pondering over life with dementia.”

Comments Off | Alzheimer's, Amber Smith, awareness, brain, caregiving, dementia, frontotemporal, Lewy body, memory walk | Permalink
Posted by DementiAwareness

REM sleep disorder may signal dementia, Parkinson’s disease

July 28, 2010

My Dad for years had these crazy sleep patterns, where he’d startle just as he hit REM, the Rapid Eye Movement stage of sleep.

Of course I thought about that as I read of a new study in the journal, Neurology showing that an REM sleep disorder may signal dementia or Parkinson’s disease up to 50 years before the disorders are diagnosed. For the study, researchers used Mayo Clinic records for 27 patients who experienced REM sleep behavior disorder for at least 15 years before developing one of three conditions: Parkinson’s disease, dementia with Lewy bodies or multiple system atrophy, a disorder that causes symptoms similar to Parkinson’s disease.

The study found that the time between the start of the sleep disorder and the symptoms of the neurologic disorders ranged up to 50 years, with an average span of 25 years. Of the participants, 13 were diagnosed with dementia, 13 others were diagnosed with Parkinson’s disease and one person was diagnosed with multiple system atrophy.

“Our findings suggest that in some patients, conditions such as Parkinson’s disease or dementia with Lewy bodies have a very long span of activity within the brain and they also may have a long period of time where other symptoms aren’t apparent,” said study author Dr. Bradley F. Boeve.  His work did not give an indication how many people with REM disorder may go on to develop Parkinson’s or dementia.

Comments Off | dementia, diagnosis, Lewy body, Parkinson's, personal, research, Uncategorized | Permalink
Posted by DementiAwareness

Ninety medications in development to treat Alzheimer’s, dementias

July 24, 2010

The Pharmaceutical Research and Manufacturers Association shares some encouraging news with its report on medicines to treat mental illnesses. Ninety drugs are in various phases of research to treat dementias, including one that is designed to remove beta amyloid protein from the brain and prevent or reverse progression of Alzheimer’s disease.

I count 11 drugs in what is called “Phase 3″ trials, the final step toward approval and licensing of a new drug.

So, progress is underway.

1 Comment | Alzheimer's, dementia, frontotemporal, FTD, Lewy body, prevention, research, treatment | Permalink
Posted by DementiAwareness

More studies showing exercise can help stave off dementia, Alzheimer’s

July 14, 2010

Encouraging research being shared at the International Conference on Alzheimer’s Disease in Honolulu this week shows that exercise may be a powerful antidote to cognitive decline in Alzheimer’s and other dementias.

Physical activity has long been related to cognitive decline, through several long-term epidemiological studies, but up until now, published research has not been consistent, and several large studies failed to show an association. Most of the studies followed participants for fewer than six years and/or lacked substantial follow-up. In fact, a panel convened by the National Institutes of Health recently reported that no proof exists for ways of preventing dementia.

Researchers have yearned for a long-term study of people within the age brackets at higher risk for developing Alzheimer’s, in order to show a true relationship between exercise and cognitive decline. The Framingham Study, a population-based study that has followed participants residing in the town of Framingham, Massachusetts since 1948 for cardiovascular risk factors, is one such study, and it is now also tracking cognitive performance.

In work presented in Honolulu, Dr. Zaldy Tan of Boston’s Brigham and Women’s Hospital and Harvard Medical School, and colleagues, estimated the levels of 24-hour physical activity of more than 1,200 elderly participants from the Framingham Study. They included 742 females, within five years of age 76 in 1986 and 1987, and followed them for the development of dementia. They divided the participants into five groups based on level of physical activity, from lowest (Q1) to highest (Q5).

Over two decades of follow-up, 242 of the women developed dementia, including 193 with Alzheimer’s. The researchers found that participants who performed moderate to heavy levels of physical activity had about a 40 percent lower risk of developing any type of dementia. Further, people who reported the lowest levels of physical activity were 45 percent more likely to develop any type of dementia compared to those who reported higher levels of activity.

“This is the first study to follow a large group of individuals for this long a period of time,” Tan says in a news release. “It suggests that lowering the risk for dementia may be one additional benefit of maintaining at least moderate physical activity, even into the eighth decade of life.”

2 Comments | Alzheimer's, alzheimer's association, dementia, early-onset Alzheiemer's, frontotemporal, FTD, late-onset Alzheimer's, Lewy body, prevention, research, Uncategorized | Permalink
Posted by DementiAwareness

Scientists study jellyfish for ways to preserve cognition in Alzheimer’s and other dementias

July 13, 2010

A biotech company in Madison, Wisconsin believes a protein from a jellyfish (with the scientific name, Aequorea victoria) can improve cognitive function in people with memory problems, Alzheimer’s disease or other dementias.

Quincy Bioscience representatives are at the annual Alzheimer’s Association International Conference on Alzheimer’s Disease this week in Honolulu, presenting interim data that demonstrates the jellyfish protein improved cognitive testing scores by 14 percent in 60 days compared to placebo in the randomized controlled “Madison Memory Study,” which enrolled adults who had a memory concern. The average age in the study cohort of 35 people was 61 years old.

Why the jellyfish?

Partly because of its simplicity. “If you strip down all of the higher functions of thought from the human brain, you really end up with a very simple nervous system…as simple as the jellyfish,” says the Quincy website. Scientists have been studying the design of the jellyfish to understand how it might protect brain cells. Jellyfish make use of apoaequorin to sequester extra calcium ions, which are thought to be protective against neurodegeneration.

In diseases such as Alzheimer’s and Parkinson’s,  calcium-binding proteins decrease and lead to brain cell death, or neurodegeneration. Scientists believe that by managing calcium levels in the cells, they can slow the aging process and preserve some quality of life.

2 Comments | Alzheimer's, brain, dementia, frontotemporal, FTD, Lewy body, Parkinson's, research, treatment, Uncategorized | Permalink
Posted by DementiAwareness

Dying from dementia — on her own terms

April 16, 2010

At the time of diagnosis, doctors can explain what the end is likely to be like. They can project how long someone with, say, Lewy body dementia has to live. And, if pressed, they can describe the process of death.

I remember asking my Dad’s neurologist what would actually kill him. The doctor said many people with frontotemporal lobe dementia lose the ability to chew, and they choke. Or they fall, break bones, become bedbound and wither away with urinary tract infections that blossom out of control. It all sounded awful to me at the time, and it still does. My strong-willed, physically healthy father to be taken down by a swallow, or a trip…?

So I liked reading about Lynn Forbish, who is described as living and dying on her own terms in a story that Beth Macy wrote on Roanoke.com.

She explains that Forbish was diagnosed with Lewy body dementia in 2006. She died April 14, in a memory care facility.

“She’d started refusing food last week, clamping her teeth tight and turning her head; pretending to fall asleep. Her final hours were pain-free, with hospice workers and her favorite cousin by her side,” Macy writes. Forbish’s daughter-in-law told Roanoke.com that “She was done. As headstrong as she was, by God, she was going to go on her own terms.”

The profile of Lynn Forbish, and how dementia took away her edge.
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Dreams are far from sweet: REM sleep behavior disorder could predict dementia, Parkinson’s

April 15, 2010

A bizarre sleep disorder that affects mostly men and colors their dreams with violence and aggression may be a precursor to the development of Parkinson’s disease or Lewy body dementias.

Judith Graham writes in the Chicago Tribune about the little known condition called REM sleep behavior disorder, caused by a dysfunction in the part of the brain that suppresses muscle activity during the dream-filled phase of sleep. Men with the disorder typically describe dreams in which they are chased by large insects or animals or threatening people, which requires them to defend themselves. They can become violent with their partners, and often couples take protective action by putting mattresses on the floor or hiding sharp objects.

Doctors don’t know why, exactly, but a growing body of research is showing a link between REM sleep behavior disorder and Parkinson’s disease and Lewy body dementia in up to 25 to 50 percent of patients. Dr. Carlos Schenck, one of the doctors who first described the disorder, told the Tribune that neurons in adjacent areas of the lower brain stem appear to be involved.

Dr. Bradley Boeve, a professor of neurology at the Mayo Clinic and a leading expert on the condition, has published multiple studies. One in 2007 appeared in Brain: A Journal of Neurology, and said his data “suggest that many patients with ‘idiopathic’ (REM behavior disorder) are actually exhibiting an early clinical manifestation of an evolving neurodegenerative disorder.” The next year, Canadian researchers wrote about the link with Parkinson’s disease. In March 2010, a scientist in Paris wrote about the disorder and how it can precede by severel years the development of Lewy body dementia. Korean scientists had similar findings in their research in February 2010.

More about Lewy body dementia.

More on the subject from the American Family Physician.

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Posted by DementiAwareness

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