Affiliation:
1. National Institute of Public Health University of Southern Denmark Copenhagen Denmark
2. Section for Health Services Research, Center for Medical Science and Technology Studies, Department of Public Health University of Copenhagen Copenhagen Denmark
Abstract
AbstractAimTo explore home‐dwelling people with dementia and family members' perceptions of the feasibility and acceptability of an intervention using dementia‐related literature excerpts to facilitate conversations on ethical issues related to living with dementia.BackgroundEthical issues in dementia care emerge throughout the illness. In the early stages, they may involve decisions about disclosing the illness to the family, shifting roles and responsibilities, and considerations of transitioning to a nursing home. Addressing ethical issues and providing adequate support to home‐dwelling people with dementia and their families are often lacking.DesignAn exploratory‐descriptive qualitative study.MethodsWe conducted eight interviews with 14 home‐dwelling persons with dementia and their family caregivers. Six were dyadic interviews, and two were individual interviews with family caregivers. We analysed the interview data using template analysis. We adhered to the COREQ checklist in reporting this study.ResultsUsing excerpts from dementia‐related literature was a feasible and acceptable way of initiating discussions on ethical issues among home‐dwelling persons with dementia and family caregivers. However, engaging the families of newly diagnosed individuals was challenging due to emotional distress. The intervention provided peer support, including identifying with others and sharing experiences. Moreover, participating couples found intimacy and relational attunement through shared reflections.ConclusionBased on the findings, it appears that the participants in this study felt that using excerpts from dementia‐related literature to deliberate on ethical issues was feasible and acceptable. Deliberating on ethical issues with peers and family caregivers offers valuable social support and opportunities for strengthening relationships.Implications for patient careThis study makes an important contribution by providing valuable insights into how ethical issues related to living with dementia can be addressed using related literature and suggests how the intervention can be integrated into existing care initiatives for home‐dwelling people with dementia and their families.Reporting methodWe have adhered to relevant EQUATOR guidelines with the COREQ reporting method.Patient or public contributionA healthcare professional working as a so‐called dementia coordinator (a title used in the Danish context) was involved in the conduct of this study by being responsible for the recruitment of home‐dwelling people with dementia and their family members. Moreover, she had joint responsibility for facilitating the intervention along with the first author.