Caring for individuals with dementia and cognitive impairment, not dementia: findings from the aging, demographics, and memory study

OBJECTIVES: To compare the characteristics and outcomes of caregivers of adults with dementia with those of caregivers of adults with cognitive impairment, not dementia (CIND). DESIGN: Cross‐sectional. SETTING: In‐home assessment for cognitive impairment and self‐administered caregiving questionnaire. PARTICIPANTS: One hundred sixty‐nine primary family caregivers of participants in the Aging, Demographics, and Memory Study (ADAMS). ADAMS participants were aged 71 and older drawn from the nationally representative Health and Retirement Study. MEASUREMENTS: Neuropsychological testing, neurological 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 per day providing care, compared with 4 hours per day for CIND caregivers (P=.001). Forty‐four percent of dementia caregivers exhibited depressive symptoms, compared with 26.5% of CIND caregivers (P=.03). Physical and emotional strains were similar in both groups of caregivers. Regardless of the strains, nearly all caregivers reported some benefits from providing care. Behavioral problems (P=.01) and difficulty with instrumental activities of daily living (P=.01) in persons with CIND partially explained emotional strain experienced by CIND caregivers. For those with dementia, behavioral problems predicted caregiver emotional strain (P<.001) and depressive symptoms (P=.01). CONCLUSION: Although 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 U.S. population may therefore be greatly underestimated if people who have reached the diagnostic threshold for dementia are focused on exclusively.