Living with dementia yields a heteronomous and lost existence

Rune Svanström, Karin Dahlberg
Western Journal of Nursing Research 2004, 26 (6): 671-87
The purpose of this study was to investigate the lived experience of dementia for spouses where one of them is diagnosed as having dementia. The study has been conducted using a phenomenological approach. Unstructured interviews were chosen in order to investigate the informants' lived experiences of dementia, both for the person with dementia and for his or her spouse. The essence of the phenomenon, the lived experience of dementia, is that the persons with dementia and their spouses live in a heteronomous existence in which they are lost and are strangers in their own world. The result of this is a life without coherence and a new but unknown meaning that can make them feel uncertain and puts them in a quandary. Whatever those with dementia and their spouses do, they have no real influence over their situation, which leads to feelings of awkwardness, perplexity, and futility.

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