DOI: 10.1002/alz.082674 ISSN: 1552-5260

Living with a person with young onset dementia ‐ spousal experience

Tania Håkansson, Staffan Karlsson, Hilda Svensson
  • Psychiatry and Mental health
  • Cellular and Molecular Neuroscience
  • Geriatrics and Gerontology
  • Neurology (clinical)
  • Developmental Neuroscience
  • Health Policy
  • Epidemiology

Abstract

Background

Being of working age, and simultaneously needing to help a person with young onset dementia has specific consequences for spouses. Research to date has been sparse concerning this specific group of spouses.

Method

Nine spouses were included and interviewed in the study. The interviews were analyzed using content analysis.

Result

The results showed that the spouses experienced an emotional impact that varied from feelings of loneliness, frustration, and worry, to peace of mind. They expressed 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 experienced a call for support from informal as well as formal support.

Conclusion

The spouse of a person with young onset dementia goes through a range of emotional experiences and has resourceful ways of handling everyday life. The degree of support is varied which leaves more to be desired from healthcare providers.

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