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

Eric Jutkowitz, Joseph E. Gaugler, Amal N. Trivedi, Lauren L. Mitchell, Pedro Gozalo

Research output: Contribution to journalArticlepeer-review

14 Scopus citations


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.

Original languageEnglish (US)
Article number216
JournalBMC Geriatrics
Issue number1
StatePublished - Jun 19 2020

Bibliographical note

Funding Information:
This work was supported by grants from National Institute on Aging (1R21AG059623–01 and 1R01AG060871–01 to EJ) and from the Brown School of Public Health (EJ). The sponsors had no role in the design, methods, subject recruitment, data collections, analysis and preparation of paper.

Funding Information:
The Health and Retirement Study is produced and distributed by the University of Michigan with funding from the National Institute on Aging (grant number NIA U01AG009740) Ann Arbor, MI.

Publisher Copyright:
© 2020 The Author(s).


  • Alzheimer's disease and related dementias
  • Community based long-term care
  • Health services
  • Longitudinal
  • Public health


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