COSMIN database

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

Authors:
Bowling, A., Rowe, G., Adams, S., Sands, P., Samsi, K., Crane, M., Joly, L., and Manthorpe, J.
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.
DOI:
10.1080/13607863.2014.915923
URL:
https://www.ncbi.nlm.nih.gov/pubmed/24881888
Journal:
Aging Ment Health
issn:
1364-6915 (Electronic)
Publication year:
2015
pages:
13-31
Functional status:
Cognitive/mental functioning
Physical functioning
Role functioning
Social functioning
General health perceptions / HRQoL:
Health-related quality of life
Self-rated health
Overall quality of life:
Overall quality of life
Age:
Adults (18-65)
Seniors (65+)
Disease:
Diseases of and symptoms related to the nervous system
PRO / non-PRO:
Non-patient Reported Outcome
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
2 - Interviews
6 - Clinical rating scales
7 - Observations
Instrument:
A&A - Activity and Affect rating scales
ADRQL - Alzheimer’s Disease Related Quality of Life
BASQUID - Bath Assessment of Subjective Quality of Life in Dementia
CBS - Cornell–Brown Scale for Quality of Life in Dementia
DCM - Dementia Care Mapping   Logozuyd
DEMQOL-U and/or DEMQOL-Proxy-U - Dementia Quality of Life questionnaire-U or proxy-U
DQOL - Dementia Quality Of Life
OQOLDA - Observing Quality of Life for Dementia Advanced
OQOLD - Observing Quality of Life in Dementia
PDS - Progressive Deterioration Scale
PES-AD - Pleasant Events Schedule Alzheimer's Disease
PWB-CIP - Psychological Well-Being in Cognitively Impaired Persons
QOL-AD - Quality of Life in Alzheimer’s Disease
QOLAS - Quality of Life Assessment Schedule
QOL-D - Quality of Life for Dementia
QUALIDEM (+ QUALIDEM German translation)
QUALID - Quality of Life in Late-stage Dementia Scale