Burden of responsibility experienced by family caregivers of elderly dementia sufferers

Abstract

Eight family caregivers of elderly dementia sufferers participated in in‐depth interviews regarding their experiences of giving care. They were selected according to strain, isolation, disappointment and emotional involvement, measured on a ‘caregiver burden’ scale. Structural analyses of the interviews identified six categories reflecting the feelings and experiences of the caregivers. The first symptom of dementia noted by caregiving husbands was a change in personality, whereas other relatives first observed impaired memory. The dementia sufferers were deemed to be helpless, vulnerable and anxious. The quality of the relationship preceding the onset of dementia had a bearing on the carer's situation. All caregivers felt a heavy burden, especially early in the dementia process. Husbands sustained the heaviest burden; they expressed anger, worry, weariness, guilt, distress and isolation. The caregivers used different problem‐ and emotion‐focused strategies to cope with their situation. Visits to the homesof the elderly, for instance by the district nurse or home help, which should include interviews with close relatives, are recommended in order to disclose early signs of dementia and to prepare further individual support for the family caregivers and their relatives suffering from dementia.