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

Abstract

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).

Helping carers to care—The 10/66 dementia research group's randomized control trial of a caregiver intervention in Russia

“…NPI-Q has shown to have adequate test-retest and inter-rater reliability as well as good concurrent validity (Kaufer et al, 2000). (b) DEMQOL (Smith et al, 2005a(Smith et al, , 2005b) is an interviewer-administered self-rated measure of dementia-specific health related quality of life, it has 28 items and is completed by the person with dementia themselves, it has good psychometric properties for people with mild to moderate dementia.…”

“…We have followed these recommendations. One innovative element of the 10/66 trials is the inclusion of a dementia-specific measure of health related quality of life, DEMQOL (Smith et al, 2005a(Smith et al, , 2005b. In this paper we present the results from the first 10/66 Dementia Research group caregiver intervention randomized controlled trial which was conducted in Moscow, Russia.…”

Helping carers to care: the 10/66 dementia research group's randomized control trial of a caregiver intervention in Peru

“…2) Quality of life of the person with dementia The DEMQOL [24][25][26] is a self-rated measure of dementia-specific health-related quality of life, comprising 29 items, each one with a four-point response option. Total scores range from 0 (worst possible QoL) to 116 (best possible QoL).…”

The Stroud/ADI dementia quality framework: a cross‐national population‐level framework for assessing the quality of life impacts of services and policies for people with dementia and their family carers

“…Other studies have generated conceptual frameworks for the understanding and measurement of quality of life in dementia (Rizzo Parse et al, 1996;Brod et al, 1999;Silberfeld et al, 2002;Smith et al, 2005), confirming that there are domains of HRQL that are of particular salience in dementia. However, all studies of HRQL in dementia to date have been focused at the level of the individual.…”

“…In developing DEMQOL, we derived a five domain model: daily activities and looking after yourself; health and well being; cognitive functioning; social relationships; and self-concept (Smith et al, 2005); this is typical. Here, we have generated a systems model of factors that can affect quality of life for people with dementia.…”