The meaningfulness of participating in support groups for informal caregivers of older adults with dementia

Background: While the positive aspects of care such as fulfilment and companionship should not be overlooked, informal caregivers, often family members, experience multiple negative consequences when performing care-related tasks around-the-clock for older adults with dementia at home. The consequences, such as the perception of taking on a stressful responsibility that eventually will lead to a meaningless existence, depression, stress, anxiety and fatigue, are all identified risk factors for premature death among informal caregivers. These multiple challenges are often referred to as “the caregiver’s burden”. The Public Health Care Systems in western counties consider support groups for informal caregivers to be an effective and economical way to relieve the caregivers’ stress and burden. It is, however, unclear if or how participating in support groups produces a meaningful outcome for the caregivers.

Aim: To explore how informal caregivers in urban and rural settings respectively, perceive the meaningfulness of participating in support groups as a means to release stress and to ease the transition of the afflicted partner to respite care.
Method: The aim will be explored in three studies; I. A meta-synthesis is produced based on a peer-reviewed protocol. II. Ethnographic participant observation studies of support group meetings in rural and urban settings. III. Semi-structured individual interviews of informal caregivers in rural and urban settings. Content analyses based on the ICF model are performed on the qualitative data in both study II and study III.