Journal of Multidisciplinary Healthcare (Aug 2023)
Family Members’ Experiences of Young-Onset Dementia: Becoming Responsible Yet Feeling Powerless
Abstract
Malin Aspö,1,2 Leonie NC Visser,1,3,4 Miia Kivipelto,1,2,5,6 Anne-Marie Boström,2,6,7 Berit Seiger Cronfalk7 1Division of Clinical Geriatrics, Center for Alzheimer Research, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden; 2Theme Inflammation and Aging, Karolinska University Hospital, Stockholm, Sweden; 3Department of Medical Psychology, Amsterdam UMC Location AMC, University of Amsterdam, Amsterdam, the Netherlands; 4Amsterdam Public Health Research Institute, Quality of Care, Amsterdam, the Netherlands; 5Neuroepidemiology and Ageing Research Unit, School of Public Health, Imperial College London, London, UK; 6Stockholms Sjukhem, Research & Development Unit, Stockholm, Sweden; 7Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Stockholm, SwedenCorrespondence: Malin Aspö, Theme Inflammation and Aging, Karolinska University Hospital, Stockholm, 171 64, Sweden, Tel +4672-582 32 39, Email [email protected]: Dementia is often associated with old age but can also occur in midlife. The latter is commonly referred to as young-onset dementia (YOD). The diagnosis not only has an impact on the persons with YOD but also on their family members. For family members, the diagnosis changes their lives, as responsibilities and roles alter when the care and wellbeing of the relative increasingly come into focus. The aim of this study was to explore family members’ experiences of sharing lives with a relative diagnosed with YOD – from onset of symptoms until the person relocated to a nursing home.Patients and Methods: The study has a qualitative approach with in-depth interviews. In total, the study included 15 family members aged ≥ 18 years participated, all with a relative diagnosed with dementia before the age of 65. At the time of the interview, all had a relative living in a nursing home. The interviews were analyzed using thematic analysis.Results: Two key themes were identified: Becoming responsible and Dealing with the situation. Family members found themselves increasingly responsible for many parts of their relatives’ lives and forced to make decisions on their behalf. This was experienced as being lonely, as family members wished to share their responsibility. Despite of their efforts to control and deal with their situation, family members reported a lack of power to influence certain factors, such as access to appropriate healthcare services, causing feelings of distress.Conclusion: These findings emphasize the need of improved and tailored support and guidance for family members of persons with YOD. Further, the findings highlight the importance of increased knowledge and awareness among social workers and other healthcare professionals regarding support to family members of persons with YOD.Keywords: YOD, relative, psychosocial support, qualitative, health care system
