Caring for aging parents in the last years of life

Abstract

Background: Adult children provide a large portion of end-of-life caregiving for older adults and make up the majority of caregivers for adults with dementia. Yet research has been limited to the hours of care that primary caregivers provide, neglecting the other ways adult children provide caregiving support. This study aims to describe the caregiving support adult children provide to their parents at the end of life and characterize differences by race and ethnicity and dementia status.

Methods: We conducted a retrospective study using survey responses from the Health and Retirement Study between 2002 and 2018. The sample population (n = 8040) included decedents aged 65 with at least one living adult child at their time of death. Caregiving support was defined as providing financial support, providing help with basic or instrumental activities of daily living (ADLs or IADLs), or coresiding with the care recipient. Respondents were stratified by self-identified race and ethnicity as Hispanic, non-Hispanic White, or non-Hispanic Black. Respondents were further stratified by dementia and marital status.

Results: Black and Hispanic respondents without dementia were more likely to report receiving financial help from (28.0% and 25.9%) or coresiding with their adult children (38.9% and 49.7%) compared to White respondents (15.0% receiving financial help and 23.3% coresiding) (p < 0.05). Among respondents with dementia, 47.1% of both Black and Hispanic respondents reported coresiding with their adult children, compared to only 24.6% of White respondents (p < 0.05). Notably, married Black and Hispanic respondents reported significantly higher rates of all support types compared to married White respondents (p < 0.05).

Conclusions: The majority of older adults at the end of life receive some form of care and support from their adult children, with Black and Hispanic older adults receiving particularly high rates of care and support from their adult children regardless of dementia or marital status.

Keywords: caregiving; end of life; informal care.