More of us fear Alzheimer’s disease

February 24, 2011

A growing number of Americans say they fear Alzheimer’s disease. Probably because a growing number of Americans have a family member or friend who is affected by the disease.

I’m referring to a MetLife Foundation survey that came out today.

What’s interesting to me is that the leading cause of death in America is heart disease, followed by cancer. Alzheimer’s disease is actually the sixth leading cause of death, after stroke, chronic lower respiratory diseases and accidents. But it’s cancer that is the most feared disease, followed by Alzheimer’s disease.

For the survey, respondents were asked which of five major diseases they were most afraid. Forty-one percent said cancer. Thirty-one percent said Alzheimer’s. That is an increase from 20 percent who named Alzheimer’s as the disease they were most afraid of, in a similar survey in 2006.

Additionally, the survey found that 23 percent of adults are extremely or very concerned that they may someday have to provide care for a loved on with Alzheimer’s.

What I found troubling was how few of us have taken steps to prepare for Alzheimer’s and dementia, which is projected to increase substantially in the years to come. The survey says only 18 percent of adults say they have made plans for the possibility of getting Alzheimer’s. Fewer than half of adults claim to have talked to their families about the disease. Only 21 percent of adults say they have made any financial arrangements for the possibility of developing Alzheimer’s.

Of course I understand – and share – the fear of this disease. I will even admit that I have not taken actual steps, had real conversations about the potential personal impact of this disease. But I will also make the point that learning about dementia, making some preparations and asking ourselves ”what if…” can make the whole situation less scary.

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Dementia and hearing loss seem linked, researchers say

February 19, 2011

Dad began losing his hearing long before we recognized any signs of what turned out to be frontotemporal dementia. Now I’m wondering, thanks to recent headlines, whether his hearing loss is related to his dementia.

Dr. Frank Lin, from the Center on Aging and Health at Johns Hopkins Medical Institutions in Baltimore, published a paper saying hearing loss in older adults is associated with an increased risk of developing dementia. It might be that dementia is overdiagnosed in people who have hearing loss. Or, people with cognitive impairment may be overdiagnosed as having hearing loss. Lin says it’s possible one underlying neuropathologic process is shared by the two conditions. They could also be causally related, he told MedScape Today, “possibly through exhaustion of cognitive reserve, social isolation, environmental deafferentation, or a combination of these pathways.”

For his study, he worked with 639 people from ages 36 to 90 years, over an almost 12-year period. Fifty-eight of them developed dementia, including 37 cases of Alzheiemer’s disease. He says the risk of developing dementia increased linearly with the severity of baseline hearing loss. His work is published in the Archives of Neurology and concludes by saying, “whether hearing loss is a marker for early-stage dementia or is actually a modifiable risk factor for dementia deserves further study.”

Isn’t that interesting — just the thought that, perhaps, treating/fixing hearing loss could possibly have an impact on the development of dementia?

Turns out that’s not a new idea. Other research, in the Journal of the American Geriatrics Society, has shown deficits in central auditory speech-processing may be an early manifestation of probable Alzheimer’s disease and may precede the onset of dementia diagnosis by many years.

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Dementia caregivers will relate to ‘Ten Glorious Seconds’ film

February 15, 2011

A new film captures the frustrations and joys of a wife trying to connect with her husband who has advanced dementia. Watch it when you need a good cry. Caregivers will relate to some of the simple tasks, like putting on a sock, as well as those 10 glorious seconds, which come all too infrequently.

The film, “Ten Glorious Seconds” stars Emmy-award winning actor David Suchet, best known for his role as Agatha Christie’s Poirot, and veteran British actors Paul Collard and Gabrielle Hamilton. It is privately financed by individual donors in the UK, the US and worldwide, and supported by healthcare company Bupa. Director of dementia care, Dr. Graham Stokes is in the film to offer advice about connecting with loved ones in the advanced stages of Alzheimer’s disease or a related dementia.

“I read the script and immediately recognised the beauty and importance of it. Albert sees his wife Josie visit his care room every day.  But he no longer knows who she is.  We see him search his memories to try to understand,” director Simon Pitts says in a news release.

“Ten Glorious Seconds” was filmed at Bupa’s The Springs care home in Malvern.

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Meet the pericyte, a new player in Alzheimer’s

November 18, 2010

Cells in the brain called pericytes play a crucial role in the development of neurodegenerative diseases such as Alzheimer’s, according to research in the November issue of the journal, Neuron.

“For 150 years these cells have been known to exist in the brain, but we haven’t known exactly what they are doing in adults,” Dr. Berislav Zlokovic said in a news release from the University of Rochester Medical Center. “It turns out the pericytes are very important for helping maintain a brain environment crucial to the health of neurons. The pericyte offers us an exciting new target for new treatments for neurodegenerative diseases.”

Pericytes wrap around capillaries like ivy around a pipe, to help maintain the structural integrity of the tiny blood vessels. They play a central role in determining the amount of blood flowing in the brain and in maintaining the barrier that stops toxic substances from leaking out of the capillaries and into brain tissue. When researchers reduced the number of pericytes in the brains of laboratory mice, they observed a reduced blood flow, greater exposure to toxic substances, impaired learning and memory, and damage to neurons, or nerve cells. The mice experienced an array of problems that closely match the brain abnormalities experienced by people with neurodegenerative conditions, such as Alzheimer’s.

Read the news release.

Read the abstract in the journal, Neuron (including instructional video).

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Finally — attention focuses on how money woes can signal dementia

October 31, 2010

A story on page one of today’s New York Times explains that money woes can be an early clue to Alzheimer’s. It tells the stories of individuals who stopped paying bills, lost track of bank accounts and lost their money in what turned out to be the early stages of dementia. It also explains how legal, financial and psychological leaders are grappling with how to determine a person’s decision making capacity.

Looking back, I see that my Dad’s demise likely started with making poor financial decisions. He had been a keen business professional in the amusement industry when suddenly he began promoting a multi-level marketing company. I had never questioned my Dad’s judgment before; instead, I questioned my own skepticism. And when things didn’t pan out for him, I found flaws in the company, the market, the economy. Dad wasn’t in his right mind then. We didn’t know it, and he didn’t know it — but now I wonder if, somehow, that multi-level marketing company did…

As Dad degenerated,  it turns out, he kept making donations to some of his favorite charities. Of course, as soon as he wrote one check, he would forget, and when the next request for money came, he’d write another. Even after his wife notified the charities about Dad’s condition, the groups continued to keep him on their mailing lists. I don’t want to believe they preyed upon him, but that’s what it looks like. Think about it: If you are in charge of fundraising, and you are unscrupulous, elderly people who are becoming forgetful can be goldmines.

So, I’m glad that the Alzheimer’s Association and the Financial Industry Regulatory Authority, the New York Times says, met recently “to formulate guidelines on how to deal with clients who have trouble remembering and reasoning, a problem that is not new but is increasing as the population ages.” It’s a dementia issue that has not gotten the attention it deserves.

Read The New York Times story, by Gina Kolata.

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‘Shriver Report’ outlines much Alzheimer’s work to be done

October 18, 2010

It was June 12, 2003 when Sargent Shriver typed a letter to his friends, telling of his Alzheimer’s diagnosis. “I look forward to being in touch with as many of you as possible. If names are slow to come to me, please forgive me. But if at any moment, I seem content with things as they are, don’t leave the room,” he wrote. “Remind me of the great times we’ve had and the great work waiting to be done.”

Plenty of work remains to be done, and his daughter, Maria Shriver is leading the charge.

The journalist, author and First Lady of California says she grieves every time she visits her father, and she says she has fears about whether she will develop Alzheimer’s. She pours herself into award-winning books and television projects about the disease.  ”I deal with my fear that way, and a certain amount of denial,” she said during a conference call for bloggers on Oct. 18.

Shriver and Angela Geiger, chief strategy officer at the Alzheimer’s Association, are promoting the release of “The Shriver Report: A Woman’s Nation Takes on Alzheimers. It gives background on the disease and where we are with our understanding, and includes a variety of essays from famous and regular people, amid all of the grim statistics.

Some 5.3 million Americans have the disease, and by 2050, 16 million will–and those figures don’t include related dementias. While the average annual cost for caring for someone with Alzheimer’s is $57,000, 72 percent of Americans admit they haven’t considered what their care options would be if they were to develop the disease.

America will spend about $6 billion on cancer research and about $4 billion on cardiovascular research in 2011, but just $500 million on Alzheimer’s research. The first wave of Baby Boomers start turning 65 in 2011, and the percentage of our population diagnosed with Alzheimer’s will begin to grow substantially.

“We are facing a tsunami, and we have no national policy for dealing with Alzheimer’s,” Shriver says. “It will be, I believe, in large part up to the Baby Boomer women to push for the advancements with this disease.”

Read my previous post about “The Shriver Report.”

Order your own copy of “The Shriver Report.”

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Shriver Report examines women and Alzheimers

October 15, 2010

 

This 2008 file photo of Maria Shriver courtesy of Story Accents on Flickr.

 

“Women are at the epicenter of this tsunami,” Maria Shriver says in describing Alzheimer’s disease and its toll on our nation, and our families and friends.

“The Shriver Report: A Woman’s Nation Takes on Alzheimer’s,” released this week, examines how women are the overwhelming majority of the 11 million caregivers for people with Alzheimer’s and other dementias. And how four out of 10 caregivers say they had no choice in becoming caregivers. And how roughly a quarter of women made a promise to keep their loved one out of an institution, but how a third of them feel the promise is too difficult to keep.

The report is loaded with statistics that help paint the-yes, grim-picture that is Alzheimer’s care in America in 2010.

More than half of all Americans know someone who has Alzheimer’s. And, almost 30 percent of us have a family member with the disease. We are, no doubt, dealing with an epidemic. But I don’t think it’s too dramatic to call this a tsunami, either. When you consider that 5.3 million Americans already have Alzheimer’s, that the disease mostly affects people over age 65, and that the first wave of baby boomers start turning 65 in 2011, you can sense there’s a rogue wave coming our way. The cost of Alzheimer’s to American society is expected to exceed $20 trillion (yes, with a T) between now and the year 2050.  That’s only 40 years from now, and by then, the number of Americans with Alzheimer’s is projected to be 16 million.

What is our country doing?

It is spending about $6 billion on cancer research, and about $4 billion on cardiovascular disease research this coming year, and just $500 million on Alzheimer’s research, the report says.

The report is more than a method of raising awareness. It’s also connective, and supportive. There are many essays, by many different caregivers, and a page full of resources from the Alzheimer’s Association. Check it out — and check back to my blog. I plan to be part of a blogger’s conference call on Oct. 18 with Shriver and Angela Geiger, Chief Strategy Officer of the Alzheimer’s Association. (If you have ideas for questions for me to ask, please, post them in the comments section.)

Read The Shriver Report.

 

 

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Researchers explain link between type 2 diabetes and Alzheimer’s

October 14, 2010

Elderly people with Type 2 diabetes are twice as likely to develop Alzheimer’s disease–and now researchers think they know why.

A gene associated with diabetes is also found at lower-than-normal levels in people who have Alzheimer’s, according to research published in this month’s Aging Cell journal. Researchers from Mount Sinai School of Medicine used mice that were genetically engineered to have Alzheimer’s disease, and they discovered lower levels of the gene known as proliferator-activated receptor coactivator 1, PGC-1, which is a key regulator of glucose.

The research team led by Dr. Giulio Maria Pasinetti reported that the decrease might be causally linked to promotion of Alzheimer’s, because PGC-1 promoted the degradation of a specific enzyme known as beta-secretase. This enzyme is directly involved in the processing and eventually generation of beta-amyloid, an abnormal protein linked to Alzheimer’s and brain degeneration.

“This new research is of extreme interest, especially since approximately 60 percent of Alzheimer’s disease cases have at least one serious medical condition primarily associated with Type 2 diabetes,” Pasinetti says.

The next step is to determine if PGC-1 can be manipulated with drugs, to prevent the beta-amyloid accumulation in the brain.

The news release from Mount Sinai School of Medicine.

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More reason to walk — research shows it may preserve memory in old age

October 13, 2010

All of the Alzheimer’s Association’s “Walks to End Alzheimer’s” may be on to something.

New research suggests that walking at least six miles per week may protect brain size and, in turn, preserve memory in old age. A study published in the Oct. 13 online issue of Neurology says that brain shrinkage in late adulthood can lead to memory impairment–and tests the theory that regular physical activity can prevent that.

“Our results should encourage well-designed trials of physical exercise in older adults as a promising approach for preventing dementia and Alzheimer’s disease,” says lead author Kirk I. Erickson, PhD, of the University of Pittsburgh in Pittsburgh. He and his team worked with 299 adults with a mean age of 78 who tracked the number of blocks they walked each week. Researchers examined the association between gray matter volume, physical activity and cognitive impairment over the course of nine years.

The participants walked amounts ranging from 0 to 300 blocks. “Greater physical activity predicted greater volumes of frontal, occipital, entorhinal, and hippocampal regions nine years later,” the researchers concluded. “Walking 72 blocks was necessary to detect increased gray matter volume, but walking more than 72 blocks did not spare additional volume. Greater gray matter volume with physical activity reduced the risk for cognitive impairment two-fold,” the abstract says.

“If regular exercise in midlife could improve brain health and improve thinking and memory in later life, it would be one more reason to make regular exercise in people of all ages a public health imperative,” Erickson says.

The study was supported by the National Institute on Aging.

Neurology is the journal from The American Academy of Neurology, an association of more than 22,000 neurologists and neuroscience professionals.

Read the abstract from the walking study.

Read about my experience as Memory Walk honorary chair.

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Syracuse Memory Walk brings in $123,300 for Alzheimer’s care, support and research

October 2, 2010

This year’s Memory Walk, for which I was honorary chair, attracted nearly 1,000 people to Long Branch Park in Liverpool and raised a record-breaking $123,300. Presented by Loretto, the walk raises money to pay for Alzheimer’s care, support and research.

I appreciate all of the donations my DementiAwareness team collected–$1,025 as of the day of the event. You can continue to make donations through Nov. 1.

We had a crisp, bright fall morning for the walk. And Central New York’s best donuts, supplied by Tim Horton’s. What could have been better?

Well, of course, if there were no need for a Memory Walk to begin with, that would be great. But that’s not the case. Those of us whose lives have been touched (slammed?) by Alzheimer’s disease or another dementia have heard the grim statistics: 5.3 million Americans have Alzheimer’s, and that number will grow considerably as the Baby Boomers start turning 65 next year. (That number does not include other dementias, such as frontotemporal lobe dementia, which has my father in its grip.) Also, that there are no effective treatments or preventive therapies.

The Memory Walk was not a time to dwell on the negatives, though. It was a time for us to come together, gather support, realize we are not alone.

My friend who lost her mother to Alzheimer’s earlier this year was there walking, wearing her mother’s purple fleece jacket. And I saw Tiffany Riihinen and her mother, P.J. Kimmerly, who has the disease; they allowed me to share their story in The Post-Standard a few weeks ago. And as we passed each other on the walk, a man I had not met reached for me, and we hugged. “I’m walking in honor of your dad and my mom,” he said, hurrying off in one direction as I headed in the other. The encounter caught me off guard. For several seconds, I walked in a haze, savoring that fleeting but solid connection with an otherwise stranger, and thinking about my Dad.

He is like so many others’ loved ones, so hobbled by dementia that walking has been replaced with shuffling, and wandering. My Dad’s heart remains strong as his mind fails. He no longer knows me, or his grandkids, or his wife sometimes. We don’t know what memories he has, and we’ve learned we cannot influence that. He has bad days, and days that aren’t so bad, and we’ve learned we cannot influence that much, either. But we can still honor him–and that’s what we did today.

Read what I said before the walk.

Make a donation.

1 Comment | Alzheimer's, alzheimer's association, Amber Smith, fundraise, memory walk, personal | Permalink
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