LTC Bullet:  Facing Alzheimer’s

Friday, January 27, 2017


LTC Comment:  Is Alzheimer’s Disease an unmitigated personal, social, political, and economic disaster as PBS suggests?  Or is there another dimension to consider after the ***news.***

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1/24/2017, “How baby boomers are changing senior living community design,” McKnight's Senior Living

Quote:  “As changing consumer preferences and payment models lead some developers and operators of nonprofit and for-profit senior living communities to reduce the number of skilled nursing beds in their offerings, they are looking for ways to repurpose and update space and build new communities to cater to a different type of resident. Baby boomer preferences are influencing their design decisions, according to three: living architecture.

LTC Comment:  We’ve expected boomers to influence senior living designs for many years.  But now it’s really happening. ***



LTC Comment:  Last Wednesday night, the Public Broadcasting System ran a special titled “Alzheimer’s:  Every Minute Counts.”  Billed as “an urgent wake-up call about the national threat posed by Alzheimer’s disease,” the show, according to Dr. Bill Thomas’s Changing Aging blog focused on “the tragedy-only narrative of dementia, designed to catch media attention . . . by stoking and feeding on our deepest fears about aging.”  I watched the show and, yes, it was dark, foreboding, depressing, and relentlessly negative.

But is there really another way to look at the “scourge” of Alzheimer’s?  Dr. Thomas, well known for his efforts to improve long-term care--The Eden Alternative and The Green House Project--thinks so.  Two days before the PBS special aired, Changing Aging sent this heads up to subscribers:

The film details only one side of the story when it comes to Alzheimer’s. The result highlights just how hard care partnering can be without giving voice to people living with dementia or how society causes much of this suffering. The film uses scare tactics in the name of safety without respecting the dignity of taking risks which those of us without a diagnosis take for granted every day. The film speaks about mounting medical costs with no mention of innovation or social capital. It warns us of the hardships of people living with dementia in isolation without highlighting communities who are banding together and helping each other live well regardless of cognitive ability. The film pathologizes “wandering” without asking how people are getting creative to protect the freedom to go where one chooses. The film interviews only one person living with dementia and the interview takes place immediately following her being given the diagnosis. The single ray of hope and possibility for living well comes at the end of the film when a family care partner is supported by hospice and remarks, “I have always been against any kind of help because I thought I would have to put her in a home or something, and I was totally wrong.” The film concludes with a plug for medical research funding as the only possible thing one can do about this so-called crisis.

Follow the links in that paragraph and you’ll discover a kinder, gentler perspective on Alzheimer’s Disease, the people experiencing it, and their caregivers.  Finding a cure and funding are important goals, but so are respecting, supporting and enhancing the lives of people living with dementia.  The PBS special neglected even to give lip service to those considerations.

For the full ChangingAging perspective on these matters, check out “Alzheimer’s:  Every Minute Person Counts.”  Why are Dr. Thomas and ChangingAging so passionate about respecting and supporting people with dementia and other disabling conditions?  To understand that, read about Bill and Jude Thomas’s personal experience with their daughters Hannah and Haleigh in “A Hundred Miles in Their Shoes.”  You will come away with a much stronger, broader and humane sense of what it means to deal fully and compassionately with the challenges of neurological disorders.

LTC Comment:  I also found the PBS special on Alzheimer’s deficient from a totally different perspective.  The show implied that Medicare is the major funder of Alzheimer’s while giving Medicaid, the elephant in the room, short shrift.  It suggested that everyone goes to assisted living facilities and spends down savings there until, totally broke, they turn to Medicaid.  Some do, especially those with too little income or savings to know or find out how Medicaid long-term care eligibility really works, but more prosperous people learn quickly how to game the system, take advantage of Medicaid’s generous and elastic eligibility rules, and smooth their way into the best services and facilities with “key money.”

A major reason why the PBS show, the Alzheimer’s Association that sponsored it, and most analysts are fixated on the personal, social and financial tragedy of the disease is that public policy has distorted the LTC financing system.  By making nursing home care virtually free in 1965, Medicaid caused institutional bias, impeded a market for home care, crowded out private insurance, and left people with dementia and their caregivers largely unsupported financially and alone.  Rebalancing from institutional to home care now is too little too late, because Medicaid lacks the resources to provide access to and quality of care in home and community-based settings as long as it remains the dominant LTC payer for most Americans.

But just as Alzheimer’s is not all and only tragedy, so policy to confront its challenges is not entirely hopeless.  Give Medicaid back to the genuinely needy.  Use some of the savings to incentivize LTC planning, saving and insurance.  Replace perverse public policy incentives with carrots and sticks to encourage responsible behavior.  The looming cataclysm PBS purveyed is real and serious, but throwing more money America does not have at a cure for Alzheimer’s while squandering the resources we do have on counterproductive public policies, benefits no one . . . least of all the copers celebrated by ChangingAging.  So take heart, see the problem clearly and fully, celebrate the possibilities, plot a better course, and start now.