A Population-Based Assessment of the Impact and Burden of Caregiving for Long-term Stroke Survivors

Abstract

Little attention has been focused on the demands on caregivers in stroke outcome research. A major aim of this study was to identify factors in patients associated with emotional distress in caregivers 1 year after stroke. One-year stroke survivors with residual handicap (defined by the Oxford Handicap Scale) and their chief caregivers were interviewed as part of the follow-up activities for patients (n = 492) registered with the Perth Community Stroke Study. We assessed emotional distress in caregivers using the Hospital Anxiety and Depression Scale and the 28-item General Health Questionnaire. Appropriate sections of the Social Behaviour Assessment Schedule were used to assess the patient's behavior and the impact on the caregiver's life. Other aspects of the patient's functional state were assessed with the Barthel Index, the Mini-Mental State Examination, the Frenchay Activities Index, and the Psychiatric Assessment Schedule (at 4 months after stroke). Of 241 patients who survived to 1 year after stroke and were living outside of an institution, 103 patients (43%; 95% confidence interval, 37% to 49%) were handicapped. Eighty-four patient/caregiver units were assessed from this latter group. Almost all caregivers reported adverse effects on their emotional health, social activities, and leisure time, and more than half reported adverse effects on family relationships. Forty-six caregivers (55%) showed evidence of emotional distress on either of the two screening instruments, particularly if they were caregiving for patients with dementia and/or abnormal behavior. There was no significant relationship between emotional illness among caregivers and the degree of patients' physical disability. In this population, the high level of emotional distress among caregivers of stroke patients suggests that many caregivers have unmet needs. Community services need to focus attention on the neuropsychological aspects of stroke patients and the social functioning of caregivers who support them.