The Impact of Stroke on Unpaid Caregivers: Results from the Auckland Regional Community Stroke Study, 2002–2003

BACKGROUND: Few studies have assessed the longitudinal impact of providing unpaid care for stroke survivors. We aimed to describe the positive and negative impact of providing unpaid care and to identify independent predictors of poor carer outcome. METHODS: The Auckland Regional Community Stroke study was a prospective population-based stroke incidence study conducted in Auckland, New Zealand, over a 12-month period in 2002-2003. Stroke survivors and their unpaid carers were assessed at 6 and 18 months after stroke onset using the Short Form 36 questionnaire and the Bakas Caregiving Outcomes Scale. RESULTS: Data were available from 167 stroke survivor-carer pairs at 6 months and 62 pairs at 18 months. Unpaid carers reported lower health-related quality of life at 6 months after stroke than their age- and sex-matched counterparts in the New Zealand population. The impact of providing care was predominantly negative; however, approximately one third of the carers had improved relationships with the stroke survivor. No reliable predictors of carer burden were identified. CONCLUSIONS: This study re-emphasises the heavy burden of stroke on unpaid carers but was unable to identify factors that predicted carers at the greatest risk of experiencing a poor outcome. Effective strategies are needed to reduce the burden of providing unpaid care.