Abstract
Quality of life (QOL) has become a focus of research in dementia. In measuring QOL, the views of people with dementia often have not been considered as researchers have proposed that they may not be able to articulate their opinions. This paper counters this belief, presenting a study using a grounded theory methodology to explore the issues that people with dementia felt were important for their QOL. Further, we propose a model of QOL including hypothesised links between important issues (including family and health), QOL and other variables. Twenty-five participants took part in one of nine focus groups. The groups included participants with mild to severe dementia with ages ranging from 49 to 93 years. Results indicate that most of the participants were willing and able to talk about their QOL. Of the 25 participants, only two said that their cognitive problems affected their QOL. Twenty-two issues were discovered through analysis to contribute to QOL, including continuingto live in your own home, independence, spouse and other family, feeling happy and feeling useful. People with dementia used social comparisons in talking about their QOL, as well as direct evaluation of their own happiness. A model of QOL based on theories of coping and response shift is suggested. The fact that so few of the participants talked about disease-orientated issues challenges the large cognitive components included in many QOL measures for use with people with dementia.
Similar content being viewed by others
References
M Farquhar (1995) ArticleTitleElderly people’s definitions of quality of life Soc Sci Med 41 1439–1446 Occurrence Handle1:STN:280:DyaK287jtFynsg%3D%3D Occurrence Handle8560312 Occurrence Handle10.1016/0277-9536(95)00117-P
DL Patrick P. Erickson (1993) Health status and health policy: Quality of life in health care evaluation and resource allocation Oxford University Press New York
Bond J. Quality of life of people with dementia and their informal caregivers: Is this a measurable outcome in clinical trials? 5th Annual Conference of the International Society for Quality of Life Research. 1998, 4-9-1999 (Ref Type: Electronic Citation).
Albert SM. Progress in assessing health-related quality of life in people with Alzheimer’s disease. Qual Life Newslett 1998; 13.
MD Walker SS Salek AJ Bayer (1998) ArticleTitleA review of quality of life in Alzheimer’s disease – part 1; issues in assessing disease impact Pharmacoeconomics 14 499–530 Occurrence Handle1:STN:280:DyaK1M7js1Ojsg%3D%3D Occurrence Handle10344915 Occurrence Handle10.2165/00019053-199814050-00004
InstitutionalAuthorNameWHOQOL Group (1998) ArticleTitleThe World Health Organisation Quality of Life Assessment (WHOQOL): Development and general psychometric properties Soc Sci Med 46 IssueID12 1569–1585 Occurrence Handle10.1016/S0277-9536(98)00009-4
MP Lawton (1997) ArticleTitleAssessing quality of life in Alzheimer disease research Alz Dis Assoc Disord 11 IssueIDSuppl 6 91–99
H Byrne D MacLean (1997) ArticleTitleQuality of life: Perceptions of residential care Int J Nurs Pract 3 IssueID1 21–28 Occurrence Handle1:STN:280:DyaK2svhvFOjtA%3D%3D Occurrence Handle9274212
M Brod AL Stewart L Sands P Walton (1999) ArticleTitleConceptualization and measurement of quality of life in dementia: The dementia quality of life instrument (DQoL) Gerontologist 39 IssueID1 25–35 Occurrence Handle1:STN:280:DyaK1M7ltlWntg%3D%3D Occurrence Handle10028768 Occurrence Handle10.1093/geront/39.1.25
SC Smith J Murray S Banerjee et al. (2005) ArticleTitleWhat constitutes health-related quality of life in dementia? Development of a conceptual framework for people with dementia and their carers Int J Geriatr Psychiat 20 889–895 Occurrence Handle10.1002/gps.1374
L Thorgrimsen A Selwood A Spector et al. (2003) ArticleTitleWhose quality ofl ife is it anyway? The validity and reliability of the Quality of Life – Alzheimer’s Disease (QOL-AD) Scale Alz Dis Assoc Disord 17 IssueID4 201–208 Occurrence Handle1:STN:280:DC%2BD3srns1aisQ%3D%3D Occurrence Handle10.1097/00002093-200310000-00002
CG Mozley P Huxley C Sutcliffe H Bagley (1999) ArticleTitleNot knowing where I am doesn’t mean I don’t know what I like Int J Geriatr Psychiat 14 IssueID9 776–784 Occurrence Handle1:STN:280:DyaK1MvhtVKmsQ%3D%3D Occurrence Handle10.1002/(SICI)1099-1166(199909)14:9<776::AID-GPS13>3.0.CO;2-C
MP. Lawton (1991) A multidimensional view of quality of life in frail elders JE Birren JE Lubben Chichowlas Rowe J DE Deutchman (Eds) The Concept and Measurement of Quality of Life in the Frail Elderly Academic Press, Inc. San Diego 3–23
R DeJong O Osterland G Roy (1989) ArticleTitleMeasurement of quality of life changes in patients with Alzheimer’s disease Clin Ther 11 IssueID4 545–554 Occurrence Handle1:STN:280:DyaL1Mzns1Chug%3D%3D Occurrence Handle2776169
MF Folstein SE Folstein PR McHugh (1975) ArticleTitleA practical method for grading the cognitive state of patients for the clinician J Psychiat Res 12 189–198 Occurrence Handle1:STN:280:DyaE28%2FntFKjtw%3D%3D Occurrence Handle1202204 Occurrence Handle10.1016/0022-3956(75)90026-6
HE Nelson J Willison (1991) National Adult Reading Test (NART). Test Manual Including New Data Supplement NFER-NELSON Windsor
JC Morris (1993) ArticleTitleThe Clinical Dementia Rating (CDR): Current version and scoring rules Neurology 43 2412–2414 Occurrence Handle1:STN:280:DyaK2c%2FltVKnuw%3D%3D Occurrence Handle8232972 Occurrence Handle10.1212/WNL.43.11.2412-a
RA. Krueger (1994) Focus Groups: A Practical Guide for Applied Research EditionNumber2 Sage Newbury Park
LMT Byrne RS Bucks GK Wilcock (2000) ArticleTitleMini-Mental State Examination Lancet 9200 314–315 Occurrence Handle10.1016/S0140-6736(05)72308-4
A Strauss J Corbin (1998) Basics of Qualitative Research EditionNumber2 Sage Thousand Oaks
Byrne-Davis LMT. The measurement of quality of life in dementia. University of Bristol, 2004 (Ref Type: Thesis/Dissertation).
RS Lazarus S Folkman (1984) Stress Appraisal and Coping Springer New York
FX Gibbons (1999) ArticleTitleSocial comparisons as a mediator of response shift Soc Sci Med 48 1517–1530 Occurrence Handle1:STN:280:DyaK1MzisFynsw%3D%3D Occurrence Handle10400254 Occurrence Handle10.1016/S0277-9536(99)00046-5
SE Taylor (1983) ArticleTitleAdjustment to threatening events: A theory of cogntive adaptation Am Psychol 38 1161–1173 Occurrence Handle10.1037/0003-066X.38.11.1161
SM Skevington (1994) ArticleTitleSocial comparisons in cross-cultural quality of life assessment Int J Ment Health 23 IssueID2 29–47
Beaumont G, Kenealy PM. Quality of Life of Healthy Older People: Residential Setting and Social Comparison Processes. Go Findings, ESRC, 2003; 20 (Ref Type: Pamphlet).
RH Moos JA Schaefer (1984) The crisis of physical illness: An overview and conceptual approach RH Moos (Eds) Coping with Physical Illness: New Perspectives Plenium Press New York 3–25 Occurrence Handle10.1007/978-1-4684-4772-9_1
MAG Sprangers CE Schwartz (1999) ArticleTitleIntegrating response shift into health-related quality of life research: A theoretical model Soc Sci Med 48 1507–1515 Occurrence Handle1:STN:280:DyaK1MzisFynsg%3D%3D Occurrence Handle10400253 Occurrence Handle10.1016/S0277-9536(99)00045-3
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Byrne-Davis, L.M.T., Bennett, P.D. & Wilcock, G.K. How are Quality of Life Ratings Made? Toward a Model of Quality of Life in People with Dementia. Qual Life Res 15, 855–865 (2006). https://doi.org/10.1007/s11136-005-5416-9
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11136-005-5416-9