No News is Bad News

It’s that time of year again, when the Alzheimer’s Association releases its annual report: Alzheimer’s Disease Facts and Figures. The 2014 edition doesn’t tell us much that’s new—which amounts to a good deal of bad news.

The facts boil down to these: Altogether, about 5.2 million people in the US have one form of dementia or another; 5 million of them are 65 or older. The older you are, the more likely you are to have dementia, except among the very old (those over 85), who have to be pretty vigorous to make it to extreme old age. Fewer than 4% of people under 65 have dementia; in the 65-74 year old age range, it’s 15%; among those 75-84, it’s 44%, and in those over 85, it’s 38%. As far as cost goes, Medicare will probably spend $113.8 billion on dementia care this year (much of that for hospital and post-acute care) and Medicaid will spend another $37.8 billion (much of that for nursing home care). Out of pocket expenditures for people with dementia will amount to another $36.8 billion, leaving another $28.8 of miscellaneous expenses (miscellaneous care seems to be a big ticket item). None of these “costs” include the time spent by informal (a euphemism for unpaid) caregivers. In 2013, caregivers devoted an estimated 17.7 billion hours to providing care to people with dementia. When this is valued at the rather low ball figure of $12/hour, it comes to a total of $220 billion/year. It's worth noting that these informal caregivers do all kinds of things, ranging from cooking and shopping to personal care to some pretty sophisticated medical care.

What is new in the current report is the special section on women and dementia. This refers both to women with dementia and to women who care for others with dementia. Women account for nearly 2/3 of all cases of dementia, principally but not entirely because they live longer than men. They are 2.5 times more likely than men to provide round-the-clock care for a family member with dementia. And what is most striking in this report is the results of a survey asking older women about their perceptions and fears regarding health in general and dementia in particular. When women age 60 and older were asked what disease they feared most, Alzheimer’s was at the top of the list, with 35% of respondents indicating it was their number one bugaboo. Cancer, incidentally, was number two, chosen by 23% of respondents. 

The take home message is that no matter what the epidemiologic studies from England and Denmark tell us about declining rates of dementia, and no matter what “brain games” companies such as Lumosity say will keep us sharp, dementia remains an enormous problem. It’s responsible for a great deal of pain and suffering, both among people with dementia and their caregivers. It’s a major contributor to out-of-control health care spending. But the good news—and there is a little bit of good news here—is that many of these problems have solutions that are within our reach. We cannot, at this point, do much about getting dementia in the first place. But once someone has the diagnosis, there’s a lot we already know how to do to help caregivers, on the one hand, and to avoid burdensome, unwanted, and costly medical tests and treatments on the other. We just need the will to create and finance programs that educate and support caregivers, physicians, and health care insurers.