Family Members’ Experiences of Young-Onset Dementia: Becoming Responsible Yet Feeling Powerless

Abstract

Purpose

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

Abbreviations

YOD, young-onset dementia; AD, Alzheimer’s disease; FTD, Frontotemporal dementia; WKS, Wernicke-Korsakoff’s syndrome; LOD, Late-onset dementia.

Acknowledgments

The authors would like to thank all family members for sharing their personal experiences. Further, the authors wish to thank professor Åke Seiger for providing comments on the manuscript.

Disclosure

The authors declare no conflicts of interest with respect to the research, authorship and/or publication of this article.

Additional information

Funding

Funding for this study was received from Swedish Research Council, Alzheimerfonden, Center for Innovative Medicine (CIMED) at Karolinska Institutet South Campus, Stiftelsen Stockholms Sjukhem (Sweden), Hjärnfonden, Region Stockholm (ALF), Swedish Research Council for Health, Working Life and Welfare (FORTE).