Caring for Individuals with Dementia and Cognitive Impairment, Not Dementia: Findings from the Aging, Demographics, and Memory Study

Abstract

OBJECTIVES To compare the characteristics and outcomes of dementia caregivers to caregivers of adults with cognitive impairment, not dementia (CIND). DESIGN Cross-sectional study SETTING In-home assessment for cognitive impairment and self-administered caregiving questionnaire. PARTICIPANTS 169 primary family caregivers of participants in the ADAMS (Aging, Demographics, and Memory Study). ADAMS participants were age 71 or older drawn from the nationally representative Health and Retirement Study. MEASUREMENTS Neuropsychological testing, neurologic examination, clinical assessment and medical history were used to assign a diagnosis of normal cognition, CIND, or dementia. Caregiving measures included caregiving time, functional limitations, depressive symptoms, physical and emotional strain, caregiving rewards, caregiver health, and demographic characteristics. RESULTS Dementia caregivers spent approximately 9 hours/day providing care, compared to 4 hours/day among CIND caregivers (p=0.001). 44% of dementia caregivers exhibited depressive symptoms, compared to 26.5% of CIND caregivers (p=0.033). Physical and emotional strains were similar in both groups of caregivers. Regardless of the strains, nearly all caregivers reported some benefits from providing care. Emotional strain experienced by CIND caregivers was partially explained by behavioral problems (p=0.01) and difficulty with IADLs (p=0.01) in persons with CIND. For those with dementia, behavioral problems predicted caregiver emotional strain (p<0.001) and depressive symptoms (p = 0.01). CONCLUSIONS While support services are available to dementia caregivers, CIND caregivers also expend considerable time and experience strains. The real caregiver burden of cognitive impairment in the US population may therefore be greatly underestimated if we focus exclusively on people who have reached the diagnostic threshold for dementia.

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