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. 2020 Jun 19;20(1):216.
doi: 10.1186/s12877-020-01613-9.

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

Eric Jutkowitz  1   2 , Joseph E Gaugler  3 , Amal N Trivedi  4   5 , Lauren L Mitchell  6 , Pedro Gozalo  4   5
Affiliations

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

Eric Jutkowitz et al. BMC Geriatr. .

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.

Keywords: Alzheimer’s disease and related dementias; Community based long-term care; Health services; Longitudinal; Public health.

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Conflict of interest statement

All authors report no conflicts of interest.

Figures

Fig. 1
Fig. 1
Derivation of Sample
Fig. 2
Fig. 2
Hours of Care Received, Number of Caregiving Days, and Number of Caregivers
See this image and copyright information in PMC

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