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- Title
Developing dementia: The existential experience of the quality of life with young-onset dementia – A longitudinal case study.
- Authors
Thorsen, Kirsten; Dourado, Marcia Cristina Nascimento; Johannessen, Aud
- Abstract
Background: Cognition and the ability to take care of daily activities and oneself gradually declines among people with dementia. Studies are scarce, especially regarding how people with young-onset dementia (YOD) (<65 years) experience the quality of their lives with the progression of dementia. People with dementia living alone face special challenges. Aim: To examine the experience of the quality of life with YOD as a single person. Method: The study presents a longitudinal case study with in-depth interviews exploring the experiences of a person with YOD. Individual interviews were conducted seven times over a period of three years from 2014 to 2017. Findings: We examined if and how seven themes concerning the quality of life and well-being were fruitful for understanding the experiences of dementia in the everyday life of a single individual. The study explored needs and challenges during the development of dementia, and how the person reacted over time, set in context. The themes significant for well-being are: identity, connectedness, security, autonomy, meaning, growth and joy. Conclusion: The study shows how treatment, support, and services must be individualized when dementia develops in order to support identity, resources and mastering capacity, and promote well-being.
- Subjects
DIAGNOSIS of dementia; AGE factors in disease; COGNITION; HEALTH promotion; INTERVIEWING; LONGITUDINAL method; CASE studies; QUALITY of life; ACTIVITIES of daily living; WELL-being; PATIENTS' attitudes
- Publication
Dementia (14713012), 2020, Vol 19, Issue 3, p878
- ISSN
1471-3012
- Publication type
Article
- DOI
10.1177/1471301218789990