Ageing and Society

Dementia from the inside: how people with early-stage dementia evaluate their quality of life

a1 Department of Nursing Sciences, Tokyo Metropolitan University of Health Sciences.

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katsuno t   [PubMed][Google Scholar] 


The purposes of this study were to explore the self-rated and objectively measured quality of life of people with early-stage dementia and to describe their personal experiences and reactions to the negative public view of dementia. Information was collected from 23 participants who lived in a mid-western United States metropolitan area. Self-ratings were collected by semi-structured and structured interviews, and the objective measures were the Quality of Life Index (QLI) and the Single Item Quality of Life Scale (SIQLS). It was found that 21 of the participants perceived their current QOL as ‘good’ or better, and that the mean scores for the QLI and the SIQLS were 22.8 and 7.3 respectively. Triangulation of the subjective and objective data established their congruence. The QLI scores suggested that people with early-stage dementia often perceived their current life as good and that the participants were as satisfied with their life as the general population. Their accounts also revealed that many had experienced stigma and that this appreciably affected their psychosocial wellbeing. The findings of this study provide new insights into the ways in which health-care professionals and the general public can and should view and treat people with dementia.

(Accepted July 17 2004)

Key Words: Alzheimer's disease; stigma; perceived quality of life; triangulation.

c1 Towako Katsuno, Department of Nursing Sciences, Tokyo Metropolitan University of Health Sciences, 7-2-10 Higashiogu, Arakawa-ku, Tokyo, 116-8551 Japan e-mail: