Qualitative analysis on needs of family caregivers for people with dementia

Abstract

AbstractBackgroundDementia is a public health challenge worldwide. Caring for a person with dementia affects different caregivers in different ways. The objective of this study was to explore the role caregivers (FCGs) for people with dementia play, along with their needs and the stress they experience, as a means of understanding their overall experience of caring. Second, to identify coping strategies employed by FCGs and to explore positive aspects of the caring relationship in relation to their quality of life, information needs, day care and respite care, and emotional support. Third, to develop a medical‐social collaboration model from socio‐ecological perspectives to provide support services to older adults with mild to moderate dementia and their FCGs at the community level.MethodDifferent support groups for older adults with dementia include hospital caregivers’ support groups, district‐based dementia care networks, and community non‐government organizations participating in this project. Through four focus groups for FCGs, qualitative data were collected.ResultFrom December 2018 to March 2019, 80 FCGs were recruited through purposeful sampling. They shared similar demographic and socio‐demographic backgrounds. Addressing the first two objectives involves exploring the role, needs, and stress of FCGs and identifying their coping strategies. Five major themes relating to FCGs’ experiences were identified through the focus groups on caregiving for older adults with dementia: a) seeking understanding, b) stabilization, c) preparation, d) implementation, and e) adaptation. In addressing the third objective, with reference to Bronfenbrenner’s Ecological Systems theory (Bronfenbrenner, 1977, Bronfenbrenner and Ceci, 1994), a medical‐social model was developed and to provide support services to FCGs at the community level. The facilitators and barriers identified by thematic analysis.ConclusionMany of the barriers and facilitators identified are echoed by findings from previous studies. Individuals’ needs must be integrated into future service planning and decision‐making processes.