Care Received by Elderly US Stroke Survivors May Be Underestimated

Background and Purpose - Previous studies exploring stroke-related caregiving focused solely on informal caregiving and a relatively limited set of activities. We sought to determine whether, and at what cost, stroke survivors receive more care than matched controls using an expanded definition of caregiving and inclusion of paid caregivers. Methods - Data were drawn from the National Health and Aging Trends Study (NHATS), a nationally representative survey of Medicare beneficiaries. NHATS personnel conducted in-person interviews with respondents or proxies to determine the weekly hours of care received. We compared hours of assistance received between self-reported stroke survivors (n=892) and demography- and comorbidity-matched nonstroke controls (n=892). The annual cost of stroke caregiving was estimated using reported paid caregiving data and estimates of unpaid caregiving costs. Results - Of community-dwelling elderly stroke survivors, 51.4% received help from a caregiver. Stroke survivors received an average of 10 hours of additional care per week compared with demography- and comorbidity-matched controls (22.3 hours versus 11.8 hours; P<0.01). We estimate that the average annual cost for caregiving for an elderly stroke survivor is ≈$11 300 or ≈$40 billion annually, for all elderly stroke survivors, of which $5000 per person, or $18.2 billion annually, is specific to stroke. Conclusions - Although stroke survivors are known to require considerable caregiving resources, our findings suggest that previous assessments may underestimate hours of care received and hence costs.