Dementia Redux

A few months ago I wrote about my father’s experience in the nursing home where he lives, commenting on the difficulty of implementing  the “culture change movement” that is supposed to promote quality of life for residents. Many readers responded that they, too, had been disappointed with attempts by nursing homes to improve care for people with dementia. Since then, I've been keeping my eyes peeled for studies that examine what approaches to nursing home care actually make a difference for residents.

This month I found a an article in a major geriatrics journal that asked a related question: what characteristics of residential facilities are associated with better health outcomes and better psychosocial outcomes for residents with dementia? The authors looked at organizational characteristics (for-profit vs non-profit, urban vs rural, special care units vs no special care units, nursing homes vs assisted living, culture change vs conventional), structures of care (staffing level, proportion of private rooms, staff expertise), and processes of care (activity programs, family involvement, resident-centered care). What was shocking about this report is that although the investigators reviewed 6209 articles written between 1990 and 2012, they only found 14 that met even the rudimentary scientific standards needed to be included in their analysis (for example, a study had to have enough cases to allow the authors to draw meaningful conclusions and it needed to compare two different strategies used in otherwise similar facilities so the investigators could figure out if one strategy was better than the other). Out of the 14 studies the authors identified, 10 reported specifically on psychosocial outcomes, the issues I am most concerned. These 10 studies showed that “person-centered care,” which is at the heart of the culture change movement, did lead to slight improvement in well-being. Overall, however, quality of life was pretty much the same (and not very high) in all the facilities studied, regardless of whether there were private rooms or special activities and whether or not the nursing home was for-profit.

In most nursing homes, unfortunately, the relevant question is far more basic than whether pets or plants or "therapeutic touch" can make a difference for residents. I learned this week from an article in the Boston Globe that my own state of Massachusetts is hoping for the first time to require residential facilities with dementia “special care units” to actually give specialized training to their staff. Right now, dementia care is principally provided by certified nursing assistants (CNA) and, to a lesser extent, by registered nurses. To become a CNA in Massachusetts, you have to take 75 hours of coursework and have 100 hours of hands-on training in subjects such as giving a bath and taking a blood pressure. A CNA training program, which typically last 2-6 months, does not necessarily include much about dementia. Once a CNA is hired in a nursing home, he or she is assumed to have adequate expertise to care for all residents and, until now, no additional training is mandated.

A total of about 1.7 million people live in nursing homes in the US, of whom 70% have dementia. Another 1.2 million people live in some other form of residential care facility such as assisted living, of whom 42% have dementia. So it is reassuring that Massachusetts is likely to join the 16 other states that mandate some kind of training for direct care workers in facilities that claim to provide specialized dementia care. It's frightening that this new regulation will mean that workers will receive a mere 8 hours of training initially and 4 additional hours each year--acquiring real expertise in dementia care would surely require at least two or three times as many hours. It's also distressing that nursing home administrators immediately responded to the proposed regulations by protesting that they cannot possibly afford to spend so much time teaching their staff such essentials as gentleness, patience, and tolerance of repetition or techniques for handling such common problems as paranoia, agitation, and wandering.

We have come a long way since the appearance of great muckraking books like Tender Loving Greed exposed the nursing home industry nearly 30 years ago. We still have a long way to go.