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Informal caregivers’ experiences of caring for persons with dementia in Estonia: A narrative study
Author(s) -
Varik Merle,
Medar Marju,
Saks Kai
Publication year - 2020
Publication title -
health and social care in the community
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.984
H-Index - 68
eISSN - 1365-2524
pISSN - 0966-0410
DOI - 10.1111/hsc.12877
Subject(s) - dementia , narrative , empowerment , psychology , thematic analysis , qualitative research , narrative inquiry , lived experience , medicine , psychotherapist , sociology , social science , linguistics , philosophy , disease , pathology , political science , law
This paper presents the results of a qualitative study aimed at exploring the experiences and needs of informal caregivers of persons with dementia and identifying caregiver expectations for support. The research was based on phenomenological and social constructionist approaches; it also took experience‐centred and culturally oriented approaches to narratives. It was conducted in Estonia in 2017 by means of unstructured in‐depth interviews with 16 informal caregivers who had relatives with dementia. The narrative approach used in this study proved to be an appropriate and valuable method to understand the situations of the caregivers of the people with dementia, in identifying their needs and expectations, and in developing social understanding for caregivers. The results are divided under four thematic headings: awareness of dementia; process of caregiving and different caregiving roles; influence of caregiving on personal life; and expectations of empowerment. We found that it is necessary to raise public awareness of dementia and develop person‐centred support services for the people living with dementia.