Burden of responsibility experienced by family caregivers of elderly dementia sufferers: Analyses of strain, feelings and coping strategies

Research output: Contribution to journalArticle


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 homes of 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.


  • Ann Margret Samuelsson
  • Lena Annerstedt
  • Sölve Elmståhl
  • Sven Mårten Samuelsson
  • Margareta Grafström
External organisations
  • Skåne University Hospital
  • Karolinska Institutet
  • Lund University
Research areas and keywords

Subject classification (UKÄ) – MANDATORY

  • Nursing


  • Burden, Coping strategies, Dementia, Family caregivers, Feelings, General strain
Original languageEnglish
Pages (from-to)25-33
JournalScandinavian Journal of Caring Sciences
Issue number1
Publication statusPublished - 2001 Jan 1
Publication categoryResearch