“To be, or not to be”: experiencing deterioration among people with young-onset dementia living alone

ABSTRACT

Having dementia before the age of 65 (YOD) represents a radical break from an age-normative and expected life course. The disease afflicts the person’s identity, threatens the self-image and self-confidence, and erodes the person’s plans. The aim of the study was toexamine how people living alone with YOD perceive the course of dementia, their needs, and coping strategies, with a focus on narrating everyday life experiences. A longitudinal study using a qualitative approach was used. Five interviews, each with 10 informants, took place every 6 months from 2014 to 2017. The main theme is the person’s experiences of changes of identity over time. The most significant aspects of their experiences of the dementia affecting them and their reactions are these: the initial signs, coping efforts, concealing the diagnosis, social retraction, existential anxiety, revival of the self, worse and worse, and health personnel as background. The study concluded thatpeople with dementia are able to describe their experiences and needs for a long time during the progression of dementia. Their voices should be listened to for planning of services. Personalized care should be used to support them in order to preserve their identity in a normalized everyday life as far as possible.

KEYWORDS:

• Coping
• existential needs
• health care
• health promotion
• longitudinal qualitative study
• subjective experiences
• young people

Acknowledgments

First, the authors wish to thank the participants for sharing their experiences, along with the Research Council of Norway, who supported the study. Second, the authors want to thank Anne-Lise Eriksen, who transcribed the interviews.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by the Norges Forskningsråd (NO)22900 [229002].

Notes on contributors

Aud Johannessen

Aud Johannessen, Knut Engedal and Per Kristian Haugen designed the study, and K.E. and P.K.H. supervised the data collection. A.J. collected the data. A.J. and Kirsten Thorsen were principally responsible for the analysis. The co-author Marcia C. N. Dourado contributed to the drafting of the manuscript and the final revision together with each of the other four authors.