Nursing home care and dimentia
Two other papers in this Health Affairs issue touch on this crucial question. The first discusses the topic of elder abuse, which arguably does not get enough consideration in health policy discussions. Elder abuse takes a variety of forms: physical, psychological, sexual, neglect, and financial exploitation. It is also surprisingly common, with the prevalence estimated at between 27.9 percent to 62.3 percent for psychological abuse, and 3.5 to 23.1 percent for physical abuse. While the data is sketchy, abuse appears to be somewhat higher in informal care settings than in nursing homes:
"In a study of 481 primary family caregivers for older adults with dementia, as many as 20.2 percent of caregivers admitted that they had neglected the person they were caring for. A study of 4,627 community-dwelling older adults with cognitive impairments found rates of self-neglect of 18.8 percent and 13.6 percent among men and women, respectively. In a survey of 101 caregivers for people with Alzheimer's disease, 15 percent of the care recipients reported experiencing financial exploitation...Some studies have reported mutual abuse, in which the victim of abuse directs abusive behaviors toward the perpetrator. In one study, 35 percent of eighty-two caregivers of patients with dementia reported experiencing mutual verbal abuse with the care recipients, and 6 percent reported experiencing mutual physical abuse with them.There's not much basis here to make a meaningful comparison between the two settings, but these studies are consistent with the idea that abuse, including neglect, is more common in informal care settings where the caregivers are both busier with their own children and careers (hence the 20.2 percent neglect rate), elders are unable to care for themselves (18.8 to 13.6 percent self-neglect rate), and under considerable stress (35% mutual physical abuse), compared to 12.6 percent abuse rate in nursing homes, where there is a dedicated staff with training in nursing care. Moreover, this would seem to confirm my suspicion:
"As noted above, abuse is also prevalent in long-term care settings. In a study of 816 US households with care recipients who received long-term care services, 12.6 percent of people with cognitive problems had experienced elder abuse. Resident-to-resident abuse in long-term care settings is especially common. A study of 294 resident-to-resident elder abuse cases found that 95.6 percent of the cases involved people with cognitive impairment."
"Older adults who spent more days residing with the perpetrators also were at higher risk for abuse."If you're wondering how family members and other caregivers could end up abusing an elder with dimentia while providing informal care, then you must read this narrative, also in this issue of health affairs, that details one family's experience, and offers a window in to the irreconcilable stress of dealing with a disease like Alzheimer's.
Preventing elder abuse isn't merely a matter of love and support, as this episode reveals:
"...she also had episodes where she'd feel persecuted and frightened. She would get angry. Usually she was happy when I visited, but one day she turned to me, hostile in a way she'd never been, and told me: 'You've changed, and I'm very disappointed. It's time for you to leave.' A few minutes later, she'd forgotten about it and was happy to have me stay. This went on for weeks. We tried keeping Sylvia busy with activities she enjoyed, such as outings to meals and the gym. We brought in more clinicians and started her on new medications. But one morning Sylvia was struck with severe terror. Believing Ed to be an intruder, she ran from the house to a neighbor's, who did not understand the situation and called the police."Providing care to an Alzheimer's patient requires a great deal more than love and support. It also requires a great deal of patience, tact, and occasionally, fast reflexes. It's a complicated matter that can sometimes break even the most loving of families who aren't able to adapt. As the author of the piece reflected:
"But in that moment, being on the inside, seeing how high the stakes were for everyone, it became clear that treatment for the patient with dementia is just one facet of good care. Dementia also takes a toll on the family caregivers—a toll that cannot be discounted."
All of this reminds me of a recently accepted manuscript in Journal of Health Economics that estimated the effect of informal care-giving on the quality of life of the care givers, finding that each hour of informal care-giving reduced life satisfaction by the equivalent of a 78.12 to 105.02 Australian Dollar decrease in income, which works out to between roughly $54,000 and $73,000 USD per year for a family providing 20 hours a week of informal care. This study was not restricted to seniors with Alzheimer's, and one can only guess the estimates would be higher if it had been. And none of that even included the potential cost to the seniors themselves, who may suffer from lower quality care and more abuse in informal settings than in a good nursing home.
This is all to say that the stakes are quite high on this issue, and we need both more research and more research-directed policy on long-term care for seniors with Alzheimer's and dementia.