Good morning, ProviderNation. Gore Vidal famously said that the four most beautiful words in the English language were, “I told you so.” (The three saddest words, Vidal added, were “Joyce Carol Oates.”)
So you’ll just have to forgive the Great Dayne Duvall (who, like Vidal, manages to be everywhere, to say the most shocking things in the most charming way, and who has poured his art into his life rather than the other way about) if he sports a wintry, Vidalian smirk.
You’ll recall that, recently, Duvall broke a taboo by suggesting that—perhaps—the quest for a cure to Alzheimer’s was a tilt at windmills. “Families going through the toughest times of their lives aren’t interested in a cure that might be decades away,” quoth he. “Not when they can’t find help for their loved one, right now.”
The digital ink has barely (digitally) dried on the digital page, yet now comes a study led by the fine folks at the University at Buffalo which says, in essence, hear, hear. Last year, hundreds of millions of federal dollars were spent on “science and drug development,” but only “$10 million to care, services, and education,” University at Buffalo Professor Davian Porock writes in the as-yet-unpublished study. That “represents less than $2 per person for care-related support… are these the priorities that people and families living with dementia want? Their voices have not been heard over the clamor for research dollars.”
Surveying hundreds of families and friends who are caring for people with dementia, Porock and her colleagues found that their No. 1 concern was money and help “to support caregiving,” followed by financial aid and other help for long term care and “aging in place” and THEN research for a cure.
“I have known for a long time that there will be no cures in my lifetime,” one respondent tells Porock. “Maybe in my children’s, not sure now, not even sure if [a cure will come] in my grandchildren’s [lives]. So there has to be some more emphasis/support/help for caregivers, and some way has to be found to pay for care—in homes.”
There are several reasons why Porock’s study is important, and not just because it allows Dayne Duvall to claim, modestly, a rhetorical victory. First, Porock runs Buffalo’s Institute for Person-Centered Care, which is hoping to do for elder care what NASA has done for, well, everyone. Second, the survey for her study is “part of a larger project to develop a national advocacy group… providing an opportunity for people living with any type of dementia and their care partners to contribute to the national debate…”
Third, we seem to be witnessing what we Hegelians might affectionately call die Tendenzwende, or shift in the zeitgeist. Consider:
- Last spring, several senators introduced the HOPE Act which, among other things, would link families and patients to “care coordinators,” who (ideally) will be a kind of advocate for hard-pressed families and friends;
- Last month, presidential candidate Hillary Clinton called for federal programs to address what she called “a caregiving crisis.” (Whatever one thinks of Mrs. Clinton or her politics, can we agree that she doesn’t stake out positions because she thinks they’re unpopular?)
- Last week, Advancing Excellence’s inestimable Doug Pace announced that he was heading over to the Alzheimer’s Association as the newly minted director of dementia care services and support.
These are mere tremors, perhaps. But even the grandest seismic events start as small tremors, too. In any case, if the dementia world really does start shaking, do as Vidal would have done (and Duvall undoubtedly does): “Sit next to a man in a turban. You get photographed more.”