Informal Caregiving for Stroke Survivors

Half of stroke survivors have residual physical and cognitive impairments and rely on informal caregiver assistance to perform activities of daily living (ADL) within the community. Without adequate support, stroke survivors are vulnerable to poor health outcomes. Within this dissertation, we explored the predictors of quantity and quality of caregiving; how informal caregiving mitigate adverse outcomes; and the available evidence of informal caregiver training that impacts physical function in stroke survivors. Using the National Health and Aging Trends Study (NHATS) data, we conducted observational studies with first-time community-dwelling stroke survivors from 2011-2020. Stroke survivors with 5-7 ADL limitations had 27 more weekly informal care hours than those with 0-1 ADL limitations. Stroke survivors with 6-7 ADL limitations were predicted to have 1 additional ADL limitation with inadequate assistance than those with 1-3 ADL limitations. Every 100 hours of weekly formal care was predicted to prevent 1 inadequately assisted ADL limitation. Two years following a stroke, stroke survivors with more ADL limitations experienced more adverse outcomes, such as a fall, hospitalization, or decline in functional mobility. However, the rate at which adverse outcomes occur varied by two factors: the stroke survivors' ADL limitations and how many informal weekly care hours were received. Stroke survivors with 3-7 ADL limitations receiving 27.2-350.4 weekly informal care hours experienced less adverse outcomes than those with the same number of ADL limitations receiving 0-5.7 weekly informal care hours. Among the available literature on informal caregiver training addressing physical function of stroke survivors, our scoping review of 21 studies revealed that most studies were conducted in non-US countries and had inconsistent caregiver demographic data reported. Stroke survivors with physical function improvement after caregiver training tended to have initially fewer cognitive and functional mobility limitations, and caregivers that received earlier and more intensive training. Our work advocates for informal caregivers to receive adequate support in order to address stroke survivors' ADL limitations so that stroke survivors may live safely in the community. Additionally, appropriate informal caregiver training may be an important element that supports caregivers' involvement in improving stroke survivors' physical function