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Keywords:

  • Alzheimer’s disease;
  • informal caregivers;
  • interview;
  • nursing;
  • phenomenology;
  • quality of life

Abstract

Title. Quality of life for caregivers of people with Alzheimer’s disease

Aim.  This paper is a report of a study to describe the meaning of quality of life for caregivers of patients with Alzheimer’s disease and to identify factors that affect their quality of life.

Background.  The burden for informal caregivers and change in their quality of life can lead to patients being placed in nursing homes. Factors found to worsen caregivers’ quality of life include strained finances, poor family functioning, difficult patient behaviour, financial burdens and the amount of time caregivers spend caring for family members with Alzheimer’s disease.

Method.  A hermeneutic phenomenological design was used to study 32 informal caregivers of patients with Alzheimer’s disease. Data were collected using interviews between November 2004 and June 2005.

Findings.  Caregivers associated good quality of life with serenity, tranquility, psychological well-being, freedom, general well-being, good health and good financial status. Factors that caregivers said improved their quality of life were good health of the patient, independence from the patient, and more help in caregiving. Factors that worsened their quality of life were worries about the future and progression of the patient’s illness and stress.

Conclusion.  Our findings may help healthcare professionals have a deeper understanding of the meaning caregivers give to quality of life and thereby aid in the design of strategies to maintain or improve quality of life. Intervention research is needed for caregivers in countries where this has not yet been performed. Researchers should also investigate whether different types of caregivers (spouse, adult child and friend) have different needs or problems.