Living with a person with young onset dementia – spousal experience

ABSTRACT

Purpose

Being of working age while at the same time needing to help a partner with young onset dementia has specific consequences for spouses. Research to date has been sparse concerning this particular group of spouses. The aim of the study was to explore spouses’ everyday experiences when living with a person with young onset dementia.

Method

The study had a descriptive qualitative design with semi-structured interviews with nine spouses. The interviews were analysed using content analysis.

Result

The interviewed spouses experienced emotions that varied from feelings of loneliness, frustration, and worry to peace of mind. They said that they used coping strategies, which included adopting a positive mindset, adapting to inabilities, adopting an avoidant approach, and finding ways to recharge. Spouses also felt that they could use more support, both formal and informal.

Conclusion

The spouse of a person with young onset dementia has a range of emotional experiences and has resourceful ways of handling everyday life. Various types of support are offered to spouses, however, they seemed to desire more from health care services.

KEYWORDS:

• Young onset dementia
• everyday life
• spouse
• experience
• emotional impact

Acknowledgments

The authors acknowledge the spouses whose participation has helped give insight into this overlooked group.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Ethical considerations

The study was performed according to the Helsinki Declaration, and was approved by the Swedish Ethical Review Authority (Dnr. 2020–00571).

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/17482631.2024.2330233

Additional information

Funding

This study was funded by the Municipality of Varberg and Halmstad University.

Notes on contributors

Tania Håkansson

Tania Håkansson is a Licentiate student in Nursing Science at the School of Health and Welfare, Halmstad University. She has an associate degree in nursing at Broward Community College, Florida. Furthermore, she has received a bachelor’s degree in nursing science as well as a master’s degree in psychiatric nursing at Halmstad University. She is also part of a specialized team in the municipal of Varberg which provides educational seminars for healthcare providers.

Hilda Svensson

Hilda Svensson is an assistant Professor in Nursing Science at the School of Health and Welfare, Halmstad University. She is one of the assistant professors at the master’s programme in nursing science with the aim district nursing. She also teaches on bachelor’s level towards nursing science. Hilda Svensson’s research involves women’s health. She also is also in the field of elderly, dementia, person-centred care and palliative care.

Staffan Karlsson

Staffan Karlsson is a Professor in Nursing Science at the School of Health and Welfare, Halmstad University. Further, he is affiliated as a professor in Health Science at Kristianstad University. He teaches on bachelor, master and post graduate level in nursing science and research ethics. Professor Karlsson’s research include older peoples´ care and service, dementia care, welfare technology and preventive interventions for older people. In addition, he is scientific secretary in the Swedish Ethical Review Authority.