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 Alzheimer’s Families Want More Focus On Care, Less On Cure, Reports New Study

 

 


Families and friends who care for those afflicted with Alzheimer’s disease think it’s much more important to get help to caregivers rather than to spend money on a search for a cure, a new study finds.

Researchers at the University at Buffalo surveyed hundreds of relatives, friends, and lovers of those suffering from Alzheimer’s. The team found that families’ and friends’ top priority was money and other resources “to support caregiving,” followed by financial aid for long term care and “aging in place” and then research for a cure.

“Their voices have not been heard over the clamor for research dollars,” University at Buffalo Professor Davina Porock writes for the team. Last year, hundreds of millions of federal dollars were spent on “science and drug development,” but only “$10 million to care, services, and education,” Porock says.

In 2013, there were about 40 million family caregivers taking care of their loved ones. If they were paid the prevailing wage for their efforts, it would be worth some $470 billion, according to an analysis by AARP.

Porock and her colleagues quote one respondent: “I have known for a long time that there will be no cures in my lifetime. 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.”

Porock runs Buffalo’s Institute for Person-Centered Care. Her team’s research 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.”

The survey comes amid growing clamors for more emphasis on the care of Alzheimer’s, rather than the cure:
  • Last spring, for instance, several senators introduced the Health Outcomes, Planning, and Education (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.
  • In July, presidential candidate Hillary Clinton called for federal programs to address what she called “a caregiving crisis.”
  • A few days later, Advancing Excellence’s Doug Pace announced that he was heading over to the Alzheimer’s Association as the newly minted director of dementia care services and support.
  • And, in early August, the American Health Care Association/National Center for Assisted Living formally endorsed legislation for the so-called RAISE Family Caregivers Act, which would create an advisory board to study (and to recommend solutions to) the problems of America’s army of unpaid caregivers.
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