Does Caregiving Strain Increase as Patients with and without Dementia Approach the End of Life?

CONTEXT: Family caregivers play critical and demanding roles in the care of persons with dementia through the end of life. OBJECTIVES: To determine whether caregiving strain increases for dementia caregivers as older adults approach the end of life, and secondarily, whether this association differs for non-dementia caregivers. METHODS: Participants included a nationally representative sample of community-living older adults receiving help with self-care or indoor mobility and their primary caregivers (3,422 dyads). Older adults' death within 12-months of survey was assessed from linked Medicare enrollment files. Multivariable logistic regression was used to assess the association between dementia and end-of-life status and a composite measure of caregiving strain (range: 0-9, using a cut point of 5 to define "high" strain) after comprehensively adjusting for other older adult and caregiver factors. RESULTS: The prevalence of dementia in our sample was 30.1%; 13.2% of the sample died within 12-months. The proportion of caregivers who experienced high strain ranged from a low of 13.5% among non-dementia, non-end-of-life caregivers to a high of 35.0% among dementia caregivers of older adults who died within 12-months. Among dementia caregivers, the odds of high caregiving strain was nearly twice as high (aOR = 1.94, 95% CI: 1.10-3.45) for those who were assisting older adults nearing end of life. Among non-dementia caregivers, providing care near the end of life was not associated with high strain. CONCLUSION: Increased strain toward the end of life is particularly notable for dementia caregivers. Interventions are needed to address the needs of this population.