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

TitleFamily caregiving in the community up to 8-years after onset of dementia
Publication TypeJournal Article
Year of Publication2020
AuthorsJutkowitz, E, Gaugler, JE, Trivedi, A, Mitchell, LL, Gozalo, P
JournalBMC Geriatrics
ISBN Number1471-2318
KeywordsAlzheimer’s disease and related dementias, Community based long-term care, Health Services, Public Health

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.

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.

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.

Community-dwelling persons with ADRD receive a substantial amount of caregiving over the first 8-years after disease onset.

Citation Key10854