@article {13588, title = {Decision Making for Patients With Severe Dementia Versus Normal Cognition Near the End of Life.}, journal = {Innovation in Aging}, volume = {7}, year = {2023}, pages = {igad081}, abstract = {

BACKGROUND AND OBJECTIVES: The clinical progression of severe dementia frequently leads to situations where surrogate decision makers must quickly make choices about potentially burdensome treatments that offer limited clinical benefit. We examined whether the number of decision makers and their access to advance directives were related to treatment choice for patients with severe dementia in comparison to those with normal cognition.

RESEARCH DESIGN AND METHODS: We retrospectively linked survey responses about end-of-life treatment decisions to Medicare claims for Health and Retirement Study respondents dying between 2002 and 2015 whose next-of-kin reported a need for surrogate decision making. We estimated multivariable logistic regression models to study measures of aggressive care in the last 6 months of life; in-hospital death, burdensome transfers, and burdensome treatments.

RESULTS: Compared to patients who were cognitively normal near the end of life ( = 1 198), patients with severe dementia ( = 722) were less likely to experience burdensome treatments (18\% [95\% confidence interval {CI} 14-21] vs 32\% [95\% CI 29-35]), burdensome transfers (20\% [95\% CI 17-24] vs 30\% [95\% CI 27-33]), and in-hospital death (24\% [95\% CI 20-28] vs 30\% [95\% CI 26-33]) when surrogates were involved. Rates of burdensome treatments, transfers, or in-hospital death for decedents with severe dementia did not vary with single versus multiple decision makers or when decision makers were informed by advance directives. However, among decedents with normal cognition, a single decision maker informed by an advance directive was associated with the lowest rates of burdensome treatments and in-hospital death.

DISCUSSION AND IMPLICATIONS: Surrogate decision makers made similar choices around end-of-life care for patients with severe dementia regardless of the number of decision makers and availability of advance directives. However, both advance directives and single decision makers were associated with less aggressive care for cognitively normal decedents.

}, keywords = {Advance care planning, cognitive impairment, family caregivers}, issn = {2399-5300}, doi = {10.1093/geroni/igad081}, author = {Nicholas, Lauren Hersch and Halpern, Scott D and David R Weir and Baum, Micah Y and Nolan, Marie and Gallo, Joseph and Kenneth M. Langa} } @article {11842, title = {Family Care Availability And Implications For Informal And Formal Care Used By Adults With Dementia In The US.}, journal = {Health Affairs}, volume = {40}, year = {2021}, pages = {1359-1367}, abstract = {

Despite the important role that family members can play in dementia care, little is known about the association between the availability of family members and the type of care, informal (unpaid) or formal (paid), that is actually delivered to older adults with dementia in the US. Using data about older adults with dementia from the Health and Retirement Study, we found significantly lower spousal availability but greater adult child availability among women versus men, non-Hispanic Blacks versus non-Hispanic Whites, and people with lower versus higher socioeconomic status. Adults with dementia and disability who have greater family availability were significantly more likely to receive informal care and less likely to use formal care. In particular, the predicted probability of a community-dwelling adult moving to a nursing home during the subsequent two years was substantially lower for those who had a co-resident adult child (11~percent) compared with those who did not have a co-resident adult child but had at least one adult child living close (20~percent) and with those who have all children living far (23~percent). Health care policies on dementia should consider potential family availability in predicting the type of care that people with dementia will use and the potential disparities in consequences for them and their families.

}, keywords = {Dementia, family caregivers, formal care, Informal care}, issn = {1544-5208}, doi = {10.1377/hlthaff.2021.00280}, author = {Choi, Hwajung and Michele M Heisler and Edward C Norton and Kenneth M. Langa and Cho, Tsai-Chin and Cathleen M. Connell} } @article {11353, title = {Family caregiving and place of death: Insights from cross-national analysis of the Harmonized End of Life Data.}, journal = {The Journals of Gerontology: Series B }, volume = {76}, year = {2021}, pages = {S76-S85}, abstract = {

OBJECTIVES: Family is largely overlooked in research on factors associated with place of death among older adults. We determine if family caregiving at the end of life is associated with place of death in the United States and Europe.

METHODS: We use the Harmonized End of Life data sets developed by the Gateway to Global Aging Data for the Survey of Health, Ageing and Retirement in Europe (SHARE) and the Health and Retirement Study (HRS). We conducted multinomial logistic regression on 7,113 decedents from 18 European countries and 3,031 decedents from the United States to determine if family caregiving, defined based on assistance with activities of daily living, was associated with death at home versus at a hospital or nursing home.

RESULTS: Family caregiving was associated with reduced odds of dying in a hospital and nursing home, relative to dying at home in both the United States and Europe. Care from a spouse/partner or child/grandchild was both more common and more strongly associated with place of death than care from other relatives. Associations between family caregiving and place of death were generally consistent across European welfare regimes.

DISCUSSION: This cross-national examination of family caregiving indicates that family-based support is universally important in determining where older adults die. In both the United States and in Europe, most care provided during a long-term illness or disability is provided by family caregivers, and it is clear families exert tremendous influence on place of death.

}, keywords = {Activities of Daily Living, Aging, Disability, family caregivers, Nursing homes, SHARE, spouse, Terminally Ill}, issn = {1758-5368}, doi = {10.1093/geronb/gbaa225}, author = {Jennifer A Ailshire and Osuna, Margarita and Wilkens, Jenny and Jinkook Lee} }