This month, the United States Senate Special Committee on Aging released a report examining how five nations — the United States, Australia, France, Japan and Britain — are responding to growing numbers of older adults with Alzheimer’s disease and dementia.
Every country has a strategy, but some are much further ahead than others. Notably, France began addressing Alzheimer’s disease and dementia in 2001 and is in the midst of carrying out its third national plan. (Scroll down at this link to find the English version of the 2008-2012 French plan.)
By contrast, the United States released its first national plan to address Alzheimer’s in May.
The Senate report highlights several trends under way in all five countries, including efforts to coordinate research more effectively, diagnose Alzheimer’s disease more reliably and improve training in dementia care by medical practitioners.
Most relevant to readers of this blog is another trend with increasing international scope: an accelerating effort to keep patients with Alzheimer’s disease and other forms of dementia at home and arrange for care and treatment there, rather than in institutions.
Anyone who’s followed reader response to Jane Brody’s column this week on aging in place knows the burden that this can place on families, especially if government support for home-based services (companions or home health aides who help with bathing, dressing, toileting and other tasks), adult day care or respite care is scarce or nonexistent, as is the case for most middle-class families in the United States.
Is care at home for patients with Alzheimer’s necessarily more humane? Only if caregivers have the resources — financial, physical and emotional — to handle this draining, exhausting, immeasurably difficult job. And only if the institutions that serve people with more advanced forms of Alzheimer’s disease and other types of dementia are so poorly financed, staffed and operated that we wouldn’t feel comfortable leaving loved ones in their care.
Three charts in the new Senate report underscore the extent to which the United States differs from other countries in what is expected of family caregivers. The first, on Page 60, shows countries’ support for paid long-term care services for residents age 65 and older. This includes all residents who need long-term care, including those with Alzheimer’s disease, other forms of dementia and other disabling chronic illnesses. Not included are services provided by unpaid family caregivers.
Look at where the United States ranks compared with Australia, Japan, France and the 30 other developed countries that belong to the Organization for Economic Cooperation and Development. Paid support for long-term care is much less in our country than in theirs.
The second chart, on Page 64, gives a sense of how much paid support for long-term care is provided in people’s homes. Again, the data is not specific to Alzheimer’s disease or dementia, although these are primary reasons older adults need long-term care.
And again, the United States falls short in terms of the amount of paid care it provides in home settings, even though older people tend to prefer these settings over institutions.
The third chart, on Page 75, brings results in the other two down to the level of families. When paid long-term care support is scarce or unavailable, you would expect a heavier load to fall on unpaid caregivers, and this is what the chart shows. Look at the number of caregivers in the United States who put in 10 to 19 hours a week (34.2 percent) or 20 hours or more a week (30.5 percent), and compare those with similar figures for France, Australia and Britain, all of which provide more paid long-term care than we do. Where are informal caregivers working the hardest? Right here at home in the United States.
For me, the take-away is clear. Other countries with which the United States is closely aligned have embraced long-term care as an essential social responsibility while we have not. Unless and until we do so, caregivers here will be among the most harried, stressed and burdened among wealthy, developed countries in the world.