A POPULATION-BASED ASSESSMENT OF THE IMPACT AND BURDEN OF CAREGIVING FOR LONG-TERM STROKE SURVIVORS

Background and Purpose Little attention has been focused on the demand s 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. Methods One-year stroke survivors with residual handicap (defined by the Oxford Handicap Scale) and thei r chief caregivers were interviewed as part of the follow-up activitie s for patients (n=492) registered with the Perth Community Stroke Stud y. We assessed emotional distress in caregivers using the Hospital Anx iety and Depression Scale and the 28-item General Health Questionnaire . Appropriate sections of the Social Behaviour Assessment Schedule wer e used to assess the patient's behavior and the impact on the caregive r's life. Other aspects of the patient's functional state were assesse d with the Barthel Index, the Mini-Mental State Examination, the Frenc hay Activities Index, and the Psychiatric Assessment Schedule (at 4 mo nths after stroke). Results Of 241 patients who survived to 1 year aft er stroke and were living outside of an institution, 103 patients (43% ; 95% confidence interval, 37% to 49%) were handicapped. Eighty-four p atient/caregiver units were assessed from this latter group. Almost al l caregivers reported adverse effects on their emotional health, socia l activities, and leisure time, and more than half reported adverse ef fects on family relationships. Forty-six caregivers (55%) showed evide nce 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 emot ional illness among caregivers and the degree of patients' physical di sability. Conclusions In this population, the high level of emotional distress among caregivers of stroke patients suggests that many caregi vers have unmet needs. Community services need to focus attention on t he neuropsychological aspects of stroke patients and the social functi oning of caregivers who support them.