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104 - Awareness of Dementia and Coping to Preserve Quality of Life: A Five-Year Longitudinal Narrative Study

Published online by Cambridge University Press:  04 November 2020

K. Thorsen ,
M. C. N. Dourado  and
A. Johannessen
K. Thorsen
Affiliation:
Vestfold Hospital Trust, Norwegian National Advisory Unit on Ageing and Health, Norway Norwegian Social Research (NOVA), Oslo Metropolitan University, Norway
M. C. N. Dourado
Affiliation:
Center for Alzheimer’s Disease and Related Disorders, Institute of Psychiatry, Universidade Federal do Rio de Janeiro, Rio de Janeiro, RJ, Brazil
A. Johannessen
Affiliation:
Vestfold Hospital Trust, Norwegian National Advisory Unit on Ageing and Health, Norway University of South-Eastern Norway
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Abstract

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Background:

Awareness of dementia is examined in different scientific fields as significant for assessment of diagnosis, and for treatment and adaptation to the disease. There are very few longitudinal studies of individual experiences of awareness among people with dementia, related to quality of life.

Aim:

To examine how younger people (< 65 years) with dementia (YOD) express awareness of the dementia and how, over time, they seem to handle awareness as a strategy to preserve quality of life.

Method:

A longitudinal qualitative study with individuals with YOD was performed with interviews every six months over five years for a maximum of ten interviews. The interviews were analysed by modified grounded theory.

Findings:

Awareness is a complex, multidimensional concept. Awareness of dementia is predisposed by personality, life history and established coping styles. The main coping styles – live in the moment, ignore the dementia, and make the best of it – seem to be rather consistent throughout the progression of the disease. Transitions in life situation, such as moving to a nursing home, may change the individual’s awareness of dementia.

Conclusion:

Unawareness of dementia may have an important adaptive function to preserve quality of life. To increase awareness must be approached with reflexivity and the utmost sensitivity.

Keywords

awarenesscopingdementiaearly onset dementialongitudinalqualitative narrative studyquality of lifeyoung onset dementia
Type
Abstract
Information
International Psychogeriatrics , Volume 32 , Issue S1 , October 2020 , pp. 8
Copyright
© International Psychogeriatric Association 2020