Health and Disability

Abstract:

A pressing issue in neuroscience is the high rate of misdiagnosis of disorders of consciousness. As new research on patients with disorders of consciousness has revealed surprising and previously unknown cognitive capacities, the need to develop better and more reliable methods of diagnosing these disorders becomes more urgent. So too the need to expand our ethical and social frameworks for thinking about these patients, to accommodate new concerns that will accompany new revelations. A recent study on trace conditioning and learning in vegetative and minimally conscious patients shows promise as a potential diagnostic and prognostic tool, both for differentiating between states of diminished consciousness, and for predicting patient outcomes, but it also generates fresh concerns about quality of life in patients previously thought to be completely unaware. Optimism about progress in diagnosing and treating disorders of consciousness must be tempered by the understanding that not all progress will necessarily be good for all patients. The prognosis for most patients remains bleak, and we must remain vigilant to acute questions and concerns about welfare and quality of life.

The new issue of the journal Public Policy & Aging Report that is focused on the CLASS Act. The edition’s title is, “Bringing CLASS to Long-Term Care Through the Affordable Care Act” and it includes articles from our own Barbara Manard, vice president of long-term health strategies, and from AAHSA board member Kathryn Roberts, CEO of Ecumen. The project was underwritten by the SCAN Foundation, a relatively new foundation that is doing great work bringing long-term services and supports to the forefront of policy discussions.

Barbara’s article, entitled, “Dueling Talking Points: Technical Issues in Constructing and Passing the CLASS Act,” recounts the history of the legislation and AAHSA’s role in shaping it. She does an artful job of explaining different objections to CLASS that were published and how the Congressional Budget Office scoring influenced the debate around CLASS.

Kathryn, in her article, discusses how the CLASS Act provides “a new paradigm for aging in America.” She urges employers, insurance companies and state governments to join the education campaign about CLASS and emphasizes how CLASS can help expand at-home services, technology adoption, intentional villages and disease management.

These two articles and the others in the journal combine to document the history of the CLASS Act and offer perspectives on what the future might hold when CLASS is implemented. It is a must-read for all of us who care about making it affordable to care

Achieving personal goals can help people in the early stages of dementia manage their condition, Alzheimer's Society research published in the American Journal of Geriatric Psychiatry has found.

Researchers at Bangor University, Wales found that people who received cognitive rehabilitation felt their performance of daily activities improved. Carers of those receiving the treatment also noted an improvement in their own quality of life.

Health Affairs Article: Medicare Doesn’t Work As Well For Younger, Disabled Beneficiaries As It Does For Older Enrollees

Younger Medicare beneficiaries with disabilities are much more likely than seniors in the program to report problems accessing and paying for needed medical services, Kaiser Family Foundation researchers report in this Health Affairs article.

Based on a national random-sample survey of people on Medicare, the study finds that half of nonelderly disabled beneficiaries report problems paying for health care in the previous 12 months – nearly three times the rate reported by seniors (50 percent compared with18 percent). Similarly, 46 percent of nonelderly beneficiaries with disabilities report delaying or not getting health care services because of cost, compared with 16 percent of seniors.  

t’s time for a quick August update of more new and notable tech offerings, from emerging vendors and new offerings from existing vendors – including beta testing.  Please let me know about others you know about and not spotted via the Product Snapshots term on this site:

Eldersync (eldersync.com):

Jason DeCrow Deidre Weliky, center, leads a discussion at the Selfhelp Benjamin Rosenthal Senior Center in Flushing. Some participants, visible on the computer screen, join in from their homes.

At the Selfhelp Benjamin Rosenthal Senior Center in Queens, social worker Rachel Itzkowitz is leading the weekly current events class, guiding participants through a series of discussions. What did they think about that shooting at the Mexican border? About higher compensation for first responders injured on September 11? And what about the controversy over building a Muslim community center near the World Trade Center site?

Milton Greidinger has something to say. “A lot of baloney,” he huffs. “They don’t have to slap America in the face by putting a mosque where the damage was done. You can have religious freedom by building it on another street, that’s what I think.”

Mr. Greidinger, 86, a retired department store buyer, isn’t in the room with the half-dozen other class members. Largely homebound by mobility problems, he’s logging in from his apartment on a computer he received and learned to use just a few months ago, in a demonstration project by Selfhelp Community Services, a New York senior services organization.

With backing from Microsoft and the city’s Department on Aging, Selfhelp has created a “virtual senior center” for about a dozen low-income elderly people, with six more scheduled to join the party at the end of the summer.

Even with big touch-screen monitors and an easy-to-use interface (called It’s Never Too Late), it took twice-a-week training for a couple of months before the new users could manage the equipment. Most had never used a computer. One who’d never learned to type found the QWERTY keyboard confusing, so Microsoft substituted one with keys in alphabetical order. The group has taken advantage of adaptations like magnifiers and screen readers that read text aloud.

Bringing old people online proved to be, in other words, a labor-intensive undertaking. But Selfhelp’s Leo Asen, vice president for senior communities, is convinced that the benefits justify it.

“How do you keep homebound seniors engaged with life?” Mr. Asen said. “Their social networks are shrinking. They tend to be more isolated, perhaps depressed or anxious.” But with cameras installed at the Rosenthal center, some stationary and some rolled around on carts, he added, “Seniors at home can sign in and participate in a class, converse with the other students — it’s as if they were there.”

“It was like going from a nice, quiet retirement home back into the world of the living,” Mr. Greidinger told me later via — ahem — e-mail. He now uses his PC for a variety of useful purposes: he can order groceries online, take his blood pressure and upload the data to a personal health-management site, and watch Frank Sinatra videos on YouTube. He Skypes with his social worker.

“So not only is it a helpful gadget,” he wrote of his computer. “It is most important to my way of life.”

Already, Selfhelp reports, one homebound-but-wired senior has been able to “attend” services streamed from Manhattan’s Central Synagogue; several chat in an impromptu support group. Early results from standardized tests suggest that online engagement has reduced anxiety and loneliness, though of course you can’t really draw broad conclusions from a sample so tiny.

But what most excites advocates like Mr. Asen are the possibilities: museum tours, college classes, activities in many languages. (A new grant from UJA-Federation of New York will help expand the center’s reach in just those directions.) “We’re just scratching the surface,” he said. Though the virtual senior center is unique, “it’s not going to stay unique for long.”

Watching the current events class from Selfhelp’s Manhattan offices, what struck me, as with a Skyped doctor’s office visit I posted about recently, was that participating via computer is not like being there, at least not yet.

The virtual participants couldn’t see everyone in the room at the Rosenthal center, just Ms. Itzkowitz and two class members. The video feed occasionally froze or briefly vanished. Two women at home seemed unable to hear and didn’t join in; they were wearing headphones, but the staff thought they might have forgotten to plug them into their PCs. A 103-year-old, someone who’d had earlier computer experience, was having trouble following the discussion; technology can only do so much to stave off the declines of extreme age.

But it’s better, much better, than watching TV alone in one’s apartment. “I have been brought back into the world of now,” Mr. Greidinger wrote to me.

And one thing we know about technology is that it improves. It may never truly replace face-to-face interaction (and we may never want it to), but it could have seismic impact on elders’ lives.

“Despite the glitches inherent in any technical project, I’m very optimistic,” Mr. Asen said. “It’s a demonstration of the future.”

Paula Span is the author of “When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions.”

The virtual geezer

The Times reports today on a new option in palliative care called “comfort feeding only.”

At issue: Feeding tubes do not necessarily prolong life in patients with advanced dementia, and surveys indicate that a vast majority of nursing home residents say they would rather die than live with a feeding tube.

But medical orders like “no artificial hydration and nutrition” — used to indicate that the patient should not be given a feeding tube — are often interpreted as “do not feed.” And few people can tolerate the idea that a loved one may be starving to death.

Comfort feeding offers another alternative.

“Just imagine someone interacting with the patient, talking to them, cueing them into eating,” said Dr. Joan Teno, a professor of community health at Brown University’s medical school, “as opposed to someone walking to the bedside and pouring a bottle of Ensure down the feeding tube.”

Read the full article, and share your thoughts in the comments section.

Belies the myths.