Former Family Carers’ Subjective Experiences of Burden

Abstract

The general knowledge of family caregivers’ experience of burden during the continuing care of a close relative with dementia is incomplete. Several types of care settings are available today, and, for carers, modalities of burden probably differ between these settings. The aim of this study was to explore whether burden differed significantly between former family caregivers (FFCs) to people with dementia who were in group living care (GLC), a small home-like unit for six to eight people, compared with people with dementia in nursing homes (NH). Twenty-six FFCs to people with dementia living in GLC and 17 FFCs to people with dementia living in NHs participated in the study. Validated scales were used to assess symptoms of dementia and provide a picture of caregiver burden, including factors such as strain, emotional involvement and environmental burden. We found that FFCs to people with dementia in NH care had a significantly higher degree of total burden, strain and environmental burden compared with FFCs to people with dementia in GLC. A significant percentage of FFCs also reported receiving insufficient information about dementia and support services. It is suggested that by adjusting physical and psychosocial settings to the cognitive state of the resident, as was done in the GLC approach, may explain the feelings of reduced burden experienced in these group of FFCs.