Editors’ Note: The following blog post originally appeared on Psychology Today.
This time of year—blustery fall days closing in on Thanksgiving—makes me glad to be home. I see my teapot and its cozy, both gifts from my children. I know the use and history of the things around me; they are connected to my life and to the people I love. Home means a lot to me.
Home also resonates for people living with dementia, who tell us that they would like to stay in their homes as long as they can. They also want the comfort of home, its sense of safety and belonging. But staying home with dementia can be tough as function declines and symptoms increase.
Today the U.S. has more than five million people with dementia; 15 million family caregivers support them. It’s a hard job, for there is much to learn about dementia care: When is it time to stop driving? Or cooking? Lots of older people take 10 or more medicines daily: Is that safe as memory goes? When caregivers don’t know what to do, an older person with dementia can end up in the emergency room, and then a hospital, and then a nursing home. Helping people with dementia stay safely at home means helping those who care for them.
Recently I spoke with Quincy Samus, PhD, and Deirdre Johnston, MBBCh, MD, faculty at Johns Hopkins’ Mind at Home Program, an innovative approach to home-based dementia care. Samus and Johnston help not only the person who has dementia, but those who support her. They clearly love what they do. They talk over each other, eager to tell me why this program matters. Samus finds that too many people feel there is nothing to be done for those with dementia. She disagrees, arguing that “Improving quality of life doesn’t require a grand action. Many things we do in everyday life can improve a person’s life and make them more comfortable.” Johnston chimes in, explaining how the program’s community health workers form a crucial link between families and clinicians. The health worker carefully checks the person’s home: what could help prevent falls, or burns from cooking; what adaptations will keep the person with dementia from getting hurt or ill and losing their hold on home? The worker coordinates with the Mind at Home clinicians to develop a plan tailored not only to the person with dementia, but to her caregivers as well.
Recently, a colleague told me about a relative who went to an elite medical center where a skilled physician ordered many tests and diagnosed dementia. He started her on medications and urged her to enroll in clinical trials. She was upset; she didn’t feel he helped her. She wanted to know how long she could live alone, and what she could still safely do. That is exactly the kind of care this program and a handful of others offer. It is not that her physician was a bad doctor, but that many of the problems of early-stage dementia are not strictly medical: They are social, emotional, and logistical, and not what doctors are typically set up to handle. These are nonetheless serious problems that can turn into medical issues; for instance when failure to manage multiple medications ends up causing delirium, then a fall, a broken hip, and life in a nursing facility.
Programs like Mind at Home aim to improve quality of life for people living with dementia, but they also hope to save money by preventing expensive emergency room visits or hospitalizations. Their early data are promising, but not yet conclusive. The NYU Caregiver intervention has a similar approach and goals, and its demonstration project in Minnesota permitted those with dementia to stay home nearly a year longer than other similar people. That time at home is valuable in itself, but could also save Minnesota nearly a billion dollars a year by delaying nursing home care.
How can an intervention save money? The Mind at Home program costs roughly $2,500 a year. A single visit to the ER can cost as much or more; a week in the hospital can cost tens of thousands; a nursing home costs $85,000 a year and up. Spending a little to save a lot sounds like a good plan, especially when it makes us happier and safer and provides better care.
So why aren’t these programs more widely available? “We really need a change in the mindset of the public,” Johnston says. “They need to demand this support. They don’t know they need it until it’s too late. And health care organizations need to recognize the value and fund it. Most health care organizations don’t even know how many of their members have dementia, or how much they’re costing.” Samus jumps in, saying, “It’s not on their radar!” Part of the problem is the underdiagnosis of dementia. Older people may end up in the ER with dehydration, or a fall, and that’s what gets listed as the diagnosis, but the overarching problem is dementia, and that may go without mention.
Here’s a good reason to give thanks: helping more people with dementia have a good life, with the comforts of home.
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This sounds like a fine program. But how likely will it be that this will work in rural areas? In parts of the country that are sparsely populated? With elders who have no family caregivers available?
Funding is a perennial issue, and many worthy programs compete for resources–even more so in states such as Vermont and the rural areas of New Hampshire and Maine. Let’s give some thought to also developing programs that rely on volunteers banking hours that they can use in the future to ‘pay’ for at least some of the help they will one day need themselves.