Family caregiving in the community up to 8-years after onset of dementia

Abstract Background Persons with Alzheimer’s disease and related dementias (ADRD) receive care from family/friends, but how care changes from the onset of dementia remains less understood. Methods We used the Health and Retirement Study (2002–2012) to identify community-dwelling individuals predicted to have incident ADRD. We investigated the amount of caregiving received for activities of daily living in the 8-years after disease onset. Results At incidence (n = 1158), persons with ADRD received 151 h (SD = 231) of caregiving a month, 25 (SD = 26) caregiving days a month and had 1.3 (SD = 1.4) caregivers a month. By 8-years post incidence, 187 (16%) individuals transitioned to a nursing home and 662 (57%) died in the community. Community-dwelling persons with ADRD at 8-years post incidence (n = 30) received 283 h (SD = 257) of caregiving, 38 (SD = 24) caregiving days, and had 2.2 (SD = 1.3) caregivers. Conclusions Community-dwelling persons with ADRD receive a substantial amount of caregiving over the first 8-years after disease onset.