Developing dementia: The existential experience of the quality of life with young-onset dementia – A longitudinal case study [2018]

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.

To examine the experience of the quality of life with YOD as a single person.

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.

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.

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.

Kirsten Thorsen, Marcia Cristina Nascimento Dourado, Aud Johannessen

Dementia, July 30, 2018