Living with a person with young onset dementia: spousal experience

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.