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Quality of life in dementia: a systematically conducted narrative review of dementia-specific measurement scales

Quality of life in dementia: a systematically conducted narrative review of dementia-specific measurement scales
Quality of life in dementia: a systematically conducted narrative review of dementia-specific measurement scales
Objectives: ascertaining the quality of life (QoL) in people with dementia is important for evaluating service outcomes and cost-effectiveness. This paper identifies QoL measures for people with dementia and assesses their properties.

Method: a systematic narrative review identified articles using dementia QoL measures. Electronic databases searched were AMED, CINAHL, EMBASE, Index to Theses, IBSS, MEDLINE, PsycINFO, Sociological Abstracts, and Web of Science. All available years and languages (if with an English language abstract) were included.

Results: searches yielded 6806 citations; 3043 were multiple duplicates (759 being true duplicates). Abstracts were read; 182 full papers were selected/obtained, of which 126 were included as relevant. Few measures were based on rigorous conceptual frameworks. Some referenced Lawton's model (Dementia Quality of Life [DQOL] and Quality of Life in Alzheimer's Disease [QOL-AD]), though these tapped part of this only; others claimed relationship to a health-related QoL concept (e.g. DEMQOL), though had less social relevance; others were based on limited domains (e.g. activity, affect) or clinical opinions (Quality of Life in Late-Stage Dementia [QUALID]). Many measures were based on proxy assessments or observations of people with dementia's QoL, rather than their own ratings. The Bath Assessment of Subjective Quality of Life in Dementia (BASQID) was developed involving people with dementia and caregivers, but excluded some of their main themes. All measures were tested on selective samples only (ranging from community to hospital clinics, or subsamples/waves of existing population surveys), in a few sites. Their general applicability remains unknown, and predictive validity remains largely untested.

Conclusion: the lack of consensus on measuring QoL in dementia suggests a need for a broader, more rigorously tested QoL measure.
dementia, cognitive impairment, quality of life, measurement scale, measures, psychometrics
1360-7863
13-31
Bowling, Ann
796ca209-687f-4079-8a40-572076251936
Rowe, Gene
59f8beaf-c7bb-4929-84f5-2129cc646712
Adams, Sue
f974678d-5a26-4a75-9762-3ed8b67093c7
Sands, Paula
a0cff5c9-3d81-4fd4-8dad-cf4196bb6f46
Samsi, Kritika
eda2f99a-f4eb-4ca8-9606-28eb035e076e
Crane, Maureen
8ff64469-c353-41ed-958f-0aefd4cb5de9
Joly, Louise
d8bcb488-1c3f-4b65-a5ae-03523f76f4d5
Manthorpe, Jill
202eae30-f95b-46f2-9c65-b6a86b71263b
Bowling, Ann
796ca209-687f-4079-8a40-572076251936
Rowe, Gene
59f8beaf-c7bb-4929-84f5-2129cc646712
Adams, Sue
f974678d-5a26-4a75-9762-3ed8b67093c7
Sands, Paula
a0cff5c9-3d81-4fd4-8dad-cf4196bb6f46
Samsi, Kritika
eda2f99a-f4eb-4ca8-9606-28eb035e076e
Crane, Maureen
8ff64469-c353-41ed-958f-0aefd4cb5de9
Joly, Louise
d8bcb488-1c3f-4b65-a5ae-03523f76f4d5
Manthorpe, Jill
202eae30-f95b-46f2-9c65-b6a86b71263b

Bowling, Ann, Rowe, Gene, Adams, Sue, Sands, Paula, Samsi, Kritika, Crane, Maureen, Joly, Louise and Manthorpe, Jill (2014) Quality of life in dementia: a systematically conducted narrative review of dementia-specific measurement scales. Aging & Mental Health, 19 (1), 13-31. (doi:10.1080/13607863.2014.915923). (PMID:24881888)

Record type: Article

Abstract

Objectives: ascertaining the quality of life (QoL) in people with dementia is important for evaluating service outcomes and cost-effectiveness. This paper identifies QoL measures for people with dementia and assesses their properties.

Method: a systematic narrative review identified articles using dementia QoL measures. Electronic databases searched were AMED, CINAHL, EMBASE, Index to Theses, IBSS, MEDLINE, PsycINFO, Sociological Abstracts, and Web of Science. All available years and languages (if with an English language abstract) were included.

Results: searches yielded 6806 citations; 3043 were multiple duplicates (759 being true duplicates). Abstracts were read; 182 full papers were selected/obtained, of which 126 were included as relevant. Few measures were based on rigorous conceptual frameworks. Some referenced Lawton's model (Dementia Quality of Life [DQOL] and Quality of Life in Alzheimer's Disease [QOL-AD]), though these tapped part of this only; others claimed relationship to a health-related QoL concept (e.g. DEMQOL), though had less social relevance; others were based on limited domains (e.g. activity, affect) or clinical opinions (Quality of Life in Late-Stage Dementia [QUALID]). Many measures were based on proxy assessments or observations of people with dementia's QoL, rather than their own ratings. The Bath Assessment of Subjective Quality of Life in Dementia (BASQID) was developed involving people with dementia and caregivers, but excluded some of their main themes. All measures were tested on selective samples only (ranging from community to hospital clinics, or subsamples/waves of existing population surveys), in a few sites. Their general applicability remains unknown, and predictive validity remains largely untested.

Conclusion: the lack of consensus on measuring QoL in dementia suggests a need for a broader, more rigorously tested QoL measure.

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Quality of Life in dementia - Dementia review.doc - Accepted Manuscript
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More information

Accepted/In Press date: 13 April 2014
e-pub ahead of print date: 2 June 2014
Published date: 2 June 2014
Keywords: dementia, cognitive impairment, quality of life, measurement scale, measures, psychometrics
Organisations: Faculty of Health Sciences

Identifiers

Local EPrints ID: 365526
URI: http://eprints.soton.ac.uk/id/eprint/365526
ISSN: 1360-7863
PURE UUID: be6da7e6-4f9a-4463-a77d-136bf71517df

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Date deposited: 09 Jun 2014 13:15
Last modified: 14 Mar 2024 16:56

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Contributors

Author: Ann Bowling
Author: Gene Rowe
Author: Sue Adams
Author: Paula Sands
Author: Kritika Samsi
Author: Maureen Crane
Author: Louise Joly
Author: Jill Manthorpe

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