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Recent Newspaper & Online Columns by Kate Scannell MD

Remembering dementia, one world -- and family -- at a time

By Dr. Kate Scannell, Syndicated columnist; First Published in Print 04/14/2012

A few days ago, my friend with severe dementia asked me at least a dozen times whether I'd heard about her granddaughter's scholarship award. We had been speaking by telephone during our weekly phone date, a tradition we've kept for many years.

Each time my friend asked the same question, she expressed continuously renewed joy -- no less infused with delight than any time she had asked before. She seemed to be living "in the moment" -- one that repeated independent of her memory. I was grateful that this moment of her reliving was a happy occasion. It is not always so.

About a decade ago, my friend's memory began to unmoor from linear time in subtle but perceptible increments. Later, more dramatic disconnections occurred, seeming to strand her on a small floe of the present, drifting at confounding distances from past and future times. Only once has my friend forgotten who I was, but within minutes, she was able to track some fragile memory back to me, guided by a few gently offered clues.

Although that lapse in my friend's memory had proven momentary, my experience of disappearing from her conscious life remains painfully fresh. I know that some day I will become a complete stranger to her, and each time that I call now registers as one day closer to the implausible end of our timeless friendship.

A new report issued last week by the World Health Organization (WHO) underscores an alarmingly high prevalence of dementia throughout the world. Purportedly, more than 35 million people worldwide currently live with dementia -- a number expected to double by 2030 and triple by 2050. And as staggering as those statistics are, still, they should be multiplied by a sizable factor to account for the friends and family members of those affected who also genuinely "live with dementia."

The WHO report also highlights the growing economic impact of dementia. Already, the total global societal cost is estimated at $604 billion -- approximately 1 percent of the aggregated worldwide gross domestic product. And despite the enormous public health impact of dementia, only eight countries -- including Japan, France, and Britain -- have developed national strategies to address dementia.

After reading the WHO report, I am left with this affecting image: Of many millions of people, like my friend and me, yearning to stay connected, all the while stumbling through the strange maze of time and memory that is dementia. Guiding lights within that maze progressively dim. Trap doors suddenly open through which someone seems to disappear. Everyone tries hard to escape, but ultimately concedes that the darkly marked exits they had hoped to avoid are the only ones available.

These global facts and figures astonish. But they also feel somewhat distant and extraneous because dementia is always lived locally, one person's unique world at a time. And when substantive help does arrive, it mostly comes from family, friends, and a smattering of essential community services in reach of that person's world.

Alzheimer's Services of the East Bay (ASEB) represents one of those stalwart community services. It provides compassionate adult day health care for people with dementia, as well as caregiver support and education. Lance Reynolds, ASEB's board president, stresses the importance of responding locally while thinking about dementia in terms of the unique experiences of affected individuals.

"In the last six years that I have volunteered at ASEB, I have learned two major lessons: dementia is no respecter of age, education or lifestyle; and family caregivers are saints," he said. "I dance with ladies the age of my children who, in their fifties, have early-onset dementia. I talk about classical Latin and nuclear physics and playing rugby with men my age whose short-term memory is failing.

"I meet caregivers of all ages and both genders who sacrifice much of their own freedom to keep a parent or partner at home. They deserve all the support we and our governments -- local, state and federal -- can give."

I couldn't agree more. But as ASEB Executive Director Micheal Pope explains, waning governmental support during the economic downturn has undermined the stability of many community-based nonprofits serving the needs of the disabled. Many social services provided over the prior 30 years have been eradicated by the Legislature in an attempt to balance the California budget.

According to Pope, ASEB is critically dependent upon the financial success of this year's annual fundraiser and live auction to be held May 3. And despite the challenges, she declares that "we will continue to advocate for the critical care that will keep people with Alzheimer's in their own homes and communities, and out of hospitals and institutions."

It's hard to fathom what one can do about 35 million people living worldwide with dementia.
By volunteering our services, donating money, or advocating for funding of organizations like ASEB, each of us can make a difference in a world or two within our reach.
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Kate Scannell is a Bay Area physician and syndicated columnist. She encourages you to attend ASEB's annual fundraiser May 3 at the historic Piedmont Community Hall.
For information, go to http://www.aseb.org or call 510-644-8292.

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