Persisting gaps in dementia carer wellbeing and education: A qualitative exploration of dementia carer experiences

Abstract

AbstractAimsTo explore the emotional wellbeing of dementia carers in the lead up to and during transition of a person living with dementia to a residential aged care facility.DesignAn interpretative qualitative study.MethodsSemi‐structured interviews were conducted with informal carers of person living with dementia between February and June 2023. Data were analysed using an inductive thematic approach and resulted in three themes.ResultsThe majority of carers were adult children (n = 19) and six were wives. Carers lived across metropolitan (n = 20) and regional settings (n = 5) in the most populous state of Australia. Three themes were identified which were attributed to different aspects of the carer role: (1) Carer emotional journey as dementia progresses – impacted by knowledge and lack of support; (2) Questioning decision making–underpinned by knowledge and confidence; and (3) Challenges in re‐establishing identity – impacted by ongoing concerns.ConclusionAs dementia progresses carers of person living with dementia consistently reported gaps in knowledge including how to access support. Specifically, this study identified the need for more to be done to help carers to develop the skills needed for their role, including participation in care planning and identifying care preferences for the future. Nurses can play a key role in promoting referral to services that support carers. Findings offer practical solutions to ameliorate carer stress and promote shared decision making.Reporting MethodThis research was guided by the Consolidated Criteria for Reporting Qualitative Research.