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

Autor: Johannessen A; a Norwegian National Advisory Unit on Ageing and Health , Vestfold Hospital Trust , Tønsberg , Norway.; b University of South-Eastern , Vestfold , Norway., Engedal K; a Norwegian National Advisory Unit on Ageing and Health , Vestfold Hospital Trust , Tønsberg , Norway., Haugen PK; a Norwegian National Advisory Unit on Ageing and Health , Vestfold Hospital Trust , Tønsberg , Norway., Dourado MCN; c Center for Alzheimer's Disease and Related Disorders, Institute of Psychiatry , Universidade Federal do Rio de Janeiro , Rio de Janeiro , Brazil., Thorsen K; a Norwegian National Advisory Unit on Ageing and Health , Vestfold Hospital Trust , Tønsberg , Norway.; d Oslo Metropolitan University , Oslo , Norway.
Jazyk: angličtina
Zdroj: International journal of qualitative studies on health and well-being [Int J Qual Stud Health Well-being] 2018 Dec; Vol. 13 (1), pp. 1490620.
DOI: 10.1080/17482631.2018.1490620
Abstrakt: 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.
Databáze: MEDLINE
Externí odkaz:
Nepřihlášeným uživatelům se plný text nezobrazuje