Literature DB >> 16116582

What constitutes health-related quality of life in dementia? Development of a conceptual framework for people with dementia and their carers.

Sarah C Smith1, Joanna Murray, Sube Banerjee, Beth Foley, Joanna C Cook, Donna L Lamping, Martin Prince, Rowan H Harwood, Enid Levin, Anthony Mann.   

Abstract

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 (c) 2005 John Wiley & Sons, Ltd.

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Year:  2005        PMID: 16116582     DOI: 10.1002/gps.1374

Source DB:  PubMed          Journal:  Int J Geriatr Psychiatry        ISSN: 0885-6230            Impact factor:   3.485


  19 in total

1.  How are quality of life ratings made? Toward a model of quality of life in people with dementia.

Authors:  L M T Byrne-Davis; P D Bennett; G K Wilcock
Journal:  Qual Life Res       Date:  2006-06       Impact factor: 4.147

2.  Quality of life of community-residing persons with dementia based on self-rated and caregiver-rated measures.

Authors:  Betty S Black; Deirdre Johnston; Ann Morrison; Peter V Rabins; Constantine G Lyketsos; Quincy M Samus
Journal:  Qual Life Res       Date:  2011-10-26       Impact factor: 4.147

3.  Improving the experience of dementia and enhancing active life--living well with dementia: study protocol for the IDEAL study.

Authors:  Linda Clare; Sharon M Nelis; Catherine Quinn; Anthony Martyr; Catherine Henderson; John V Hindle; Ian R Jones; Roy W Jones; Martin Knapp; Michael D Kopelman; Robin G Morris; James A Pickett; Jennifer M Rusted; Nada M Savitch; Jeanette M Thom; Christina R Victor
Journal:  Health Qual Life Outcomes       Date:  2014-11-30       Impact factor: 3.186

4.  Greater Independence in Activities of Daily Living is Associated with Higher Health-Related Quality of Life Scores in Nursing Home Residents with Dementia.

Authors:  Charice S Chan; Susan E Slaughter; C Allyson Jones; Adrian S Wagg
Journal:  Healthcare (Basel)       Date:  2015-06-30

5.  Developing a dementia-specific health state classification system for a new preference-based instrument AD-5D.

Authors:  Kim-Huong Nguyen; Brendan Mulhern; Sanjeewa Kularatna; Joshua Byrnes; Wendy Moyle; Tracy Comans
Journal:  Health Qual Life Outcomes       Date:  2017-01-25       Impact factor: 3.186

6.  DEMQOL and DEMQOL-Proxy: a Rasch analysis.

Authors:  A A Jolijn Hendriks; Sarah C Smith; Theopisti Chrysanthaki; Stefan J Cano; Nick Black
Journal:  Health Qual Life Outcomes       Date:  2017-08-22       Impact factor: 3.186

7.  Disease severity accounts for minimal variance of quality of life in people with dementia and their carers: analyses of cross-sectional data from the MODEM study.

Authors:  Nicolas Farina; Derek King; Clare Burgon; Sharne Berwald; Elizabeth Bustard; Yvonne Feeney; Ruth Habibi; Adelina Comas-Herrera; Martin Knapp; Sube Banerjee
Journal:  BMC Geriatr       Date:  2020-07-06       Impact factor: 3.921

8.  Item distribution, internal consistency, and structural validity of the German version of the DEMQOL and DEMQOL-proxy.

Authors:  Christian G G Schwab; Martin Nikolaus Dichter; Martin Berwig
Journal:  BMC Geriatr       Date:  2018-10-19       Impact factor: 3.921

9.  Validation study of the prototype of a disease-specific index measure for health-related quality of life in dementia.

Authors:  Carla J M Schölzel-Dorenbos; Alexander M M Arons; Joost J G Wammes; Marcel G M Olde Rikkert; Paul F M Krabbe
Journal:  Health Qual Life Outcomes       Date:  2012-09-25       Impact factor: 3.186

10.  Quality of life and factors affecting it in patients with Alzheimer's disease: a cross-sectional study.

Authors:  Burcu Akpınar Söylemez; Özlem Küçükgüçlü; Merve Aliye Akyol; Ahmet Turan Işık
Journal:  Health Qual Life Outcomes       Date:  2020-09-10       Impact factor: 3.186

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