Introduction: Previous studies exploring stroke caregiving have estimated that the average stroke survivor receives as many as 16 hours per week hours of informal caregiving at a societal cost of as much as $26.8 billion per year. However, these studies have focused on basic and instrumental activities of daily living, and have not included healthcare and transportation activities. We sought to determine whether, and at what cost, caregiving differs between stroke survivors and matched controls using an expanded definition of caregiving.
Methods: A total of 892 stroke survivors were drawn from the 2011 wave of the National Health and Aging Trends Study (NHATS), a nationally representative survey of Medicare beneficiaries. One-to-one propensity matching was performed on demographics and comorbidities to create a sample of matched non-stroke controls. Caregivers were identified by detecting all helpers for NHATS respondents who had help with self-care or mobility activities or with household activities due to health or functioning. Stroke survivors and controls were compared using survey-weighted chi-square tests and Wald tests. The annual cost of caregiving was estimated using reported paid caregiving data and estimates of informal caregiving costs.
Results: On average, stroke survivors received about 10 hours of additional caregiving per week compared to controls (22 hours vs. 12 hours, p<0.01). We estimate that the average annual cost for caregiving for an elderly stroke survivor is approximately $11,300. This extrapolates to a total cost of about $40 billion annually among all Medicare beneficiaries.
Conclusion: Our expanded definition of caregiving suggests that prior studies may underestimate both the time and costs invested in caregiving to older stroke survivors.