Caregiving network precarity among community-living, dually enrolled persons with dementia

Most persons with dementia live in the community, relying on caregiving networks to meet their needs. Caregiving network precarity refers to insecurity or instability in these networks, defined as caregiver(s) being unable or unwilling to continue in their role. Given the importance of caregiving to aging in place and the high burden associated with dementia caregiving, we sought to identify factors associated with caregiving network precarity for community-living, dually enrolled persons with dementia.

We linked 2021-2022 administrative, claims, and clinical assessment (baseline and follow-up) data for a diverse sample of community-living, dually enrolled persons with dementia in New York State. We operationalized caregiving network precarity as having one or more caregivers report being unable or unwilling to continue providing care. We modelled incident caregiving network precarity as a function of care recipient characteristics, health services utilization, and caregiving network factors using multivariable logistic regression.

Declines in health status among care recipients were strongly associated with caregiving network precarity. Individuals were more likely to experience caregiving network precarity if they had recently experienced an increase in cognitive impairment (aOR: 2.98; 95% CI: 1.97-4.51), functional impairment (aOR: 1.71; 95% CI: 1.07-2.74), or bowel incontinence frequency (aOR: 2.33; 95% CI: 1.38-3.93), or began resisting care (aOR: 2.47; 95% CI: 1.69-3.61).

Findings highlight the importance of identifying and addressing shifts in care recipient status and offering targeted supports to caregivers during key inflection points in the care recipient's disease trajectory.