Premium
What constitutes health‐related quality of life in dementia? Development of a conceptual framework for people with dementia and their carers
Author(s) -
Smith Sarah C.,
Murray Joanna,
Banerjee Sube,
Foley Beth,
Cook Joanna C.,
Lamping Donna L.,
Prince Martin,
Harwood Rowan H.,
Levin Enid,
Mann Anthony
Publication year - 2005
Publication title -
international journal of geriatric psychiatry
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.28
H-Index - 129
eISSN - 1099-1166
pISSN - 0885-6230
DOI - 10.1002/gps.1374
Subject(s) - dementia , psychology , quality of life (healthcare) , conceptual framework , qualitative research , gerontology , cognition , proxy (statistics) , conceptual model , perspective (graphical) , disease , medicine , psychiatry , psychotherapist , sociology , computer science , social science , pathology , database , machine learning , artificial intelligence
Background The evaluation of multi‐dimensional outcomes such as health‐related quality of life (HRQL) is particularly relevant in dementia where the disease can compromise all areas of functioning. The nature of dementia can make self‐report difficult, yet the subjective nature of HRQL makes the value of proxy reports limited. Previous work suggests that there are domains of HRQL that are unique to dementia. We aimed to develop a conceptual framework of HRQL in dementia from the perspective of people with dementia and their carers and to examine differences in the reports of the HRQL of these two groups. Methods We combined existing literature and new qualitative data to develop the conceptual framework and analysed qualitative data using content analysis. Results We identified five domains: daily activities and looking after yourself, health and well‐being, cognitive functioning, social relationships and self‐concept, and each was defined by specific descriptive components. There were differences between people with dementia and carers in the way they described these domains. Conclusions We have developed a conceptual framework of HRQL in dementia that incorporates the views of people with dementia and their carers. This provides the basis for the development of a new measure of HRQL in dementia (DEMQOL). Copyright © 2005 John Wiley & Sons, Ltd.