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A review of quality of life instruments used in dementia

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Abstract

Objective: To provide an overview of QOL measures applicable for research in dementia, the scale content, method of data collection, and their psychometric properties. Method: Literature research. Results: Six dementia-specific QOL measures were identified, eight generic measures were used in a demented population, and three dementia-specific measures related to QOL are described as well. Measures vary considerably in scale content, and method of data collection. Reliability indexes were always available, support of instrument validity was often reported, but reports of responsiveness to change were found only for two dementia-specific QOL measures. Conclusion: When the interest is primarily on people with dementia, a dementia-specific instrument is to be preferred. Further clarification of the concept of QOL and particularly its relation to disease severity is required.

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References

  • Health Council of the Netherlands. Dementia. (report num: 2002/04). 2002. The Hague, Health Council of the Netherlands.

  • PG Clark (1995) ArticleTitleQuality of life, values, and teamwork in geriatric care: Do we communicate what we mean? Gerontologist 35 IssueID3 402–411

    Google Scholar 

  • MP Lawton (1997) ArticleTitleAssessing quality of life in Alzheimer disease research. Alzheimer Dis Assoc Disord 11 IssueIDSuppl. 6 91–99

    Google Scholar 

  • SM Hunt (1997) ArticleTitleThe problem of quality of life. Qual Life Res 6 IssueID3 205–212

    Google Scholar 

  • C Selai MR Trimble (1999) ArticleTitleAssessing quality of life in dementia. Aging Ment Health 3 IssueID2 101–111

    Google Scholar 

  • MP Lawton (1991) A multidimensional view of quality of life in frail elders. JE Birren JE Lubben JC Rowe DE Deutchman (Eds) The Concept and Measurement of Quality of Life in the Frail Elderly Academic Press, Inc. San Diego 3–27

    Google Scholar 

  • InstitutionalAuthorNameThe WHOQOL Group (1998) ArticleTitleDevelopment of the World Health Organization WHOQOL-BREF quality of life assessment. Psychol Med 28 IssueID3 551–558

    Google Scholar 

  • M Brod AL Stewart L Sands (1999) ArticleTitleConceptualization of quality of life in dementia. J Ment Health Aging 5 IssueID1 7–20

    Google Scholar 

  • PV Rabins (2000) ArticleTitleMeasuring Quality of Life in persons with dementia. Int Psychogeriatr 12 IssueIDsuppl. 1 47–49

    Google Scholar 

  • RE Ready BR Ott J Grace I Fernandez (2002) ArticleTitleThe cornell-brown scale for quality of life in dementia. Alzheimer Dis Assoc Disord 16 IssueID2 109–115

    Google Scholar 

  • M Silberfeld S Rueda M Krahn G Naglie (2002) ArticleTitleContent validity for dementia of three generic preference based health related quality of life instruments. Qual Life Res 11 71–79 Occurrence Handle10.1023/A:1014406429385

    Article  Google Scholar 

  • H Katschnig (1997) ArticleTitleHow useful is the concept of quality of life in psychiatry? Curr Opin Psychiatry 10 IssueID4 337–345

    Google Scholar 

  • DL Streiner GR Norman (2002) Health Measurement Scales: A Practical Guide to Their Development and Use. EditionNumber3 Oxford University Press Inc. New York

    Google Scholar 

  • KO McGraw SP Wong (1996) ArticleTitleForming Inferences About Some Intraclass Correlation Coefficients *1. Psychol Meth 1 IssueID1 30–46

    Google Scholar 

  • P Schuck (2004) ArticleTitleAssessing reproducibility for interval data in health-related quality of life questionnaires: Which coefficient should be used? Qual Life Res 13 IssueID3 571–585

    Google Scholar 

  • CB Terwee FW Dekker WM Wiersinga MF Prummel PMM Bossuyt (2003) ArticleTitleOn assessing responsiveness of health-related quality of life instruments: Guidelines for instrument evaluation. Qual Life Res 12 IssueID4 349–362

    Google Scholar 

  • L Teri RG Logsdon (1991) ArticleTitleIdentifying pleasant activities for Alzheimer’s disease patients: The pleasant events schedule-AD. Gerontologist 31 IssueID1 124–127

    Google Scholar 

  • AC Hurley BJ Volicer PA Hanrahan S Houde L Volicer (1992) ArticleTitleAssessment of discomfort in advanced Alzheimer patients. Res Nurs Health 15 IssueID5 369–377

    Google Scholar 

  • T Perrin (1997) ArticleTitleThe positive response schedule for severe dementia. Aging Ment Health 1 184–197

    Google Scholar 

  • SM Albert C Del Castillo-Castaneda M Sano et al. (1996) ArticleTitleQuality of life in patients with Alzheimer’s disease as reported by patient proxies. J Am Geriatr Soc 44 IssueID11 1342–1347

    Google Scholar 

  • S Zank B Leipold (2001) ArticleTitleThe relationship between severity of dementia and subjective well-being. Aging Ment Health 5 IssueID2 191–196

    Google Scholar 

  • SM Albert DM Jacobs M Sano et al. (2001) ArticleTitleLongitudinal study of quality of life in people with advanced Alzheimer’s disease. Am J Geriatr Psychiatry 9 IssueID2 160–168

    Google Scholar 

  • T Kitwood K Bredin (1992) ArticleTitleA new approach to the evaluation of dementia care. J Adv Health Nurs Care 1 IssueID5 41–60

    Google Scholar 

  • D Brooker N Foster A Banner M Payne L Jackson (1998) ArticleTitleThe efficacy of Dementia Care Mapping as an audit tool: Report of a 3-year British NHS evaluation. Aging Ment Health 2 IssueID1 60–70

    Google Scholar 

  • J Fossey L Lee C Ballard (2002) ArticleTitleDementia care mapping as a research tool for measuring quality of life in care settings: Psychometric properties. Int J Geriatr Psychiatry 17 IssueID11 1064–1070

    Google Scholar 

  • D Brooker L Duce (2000) ArticleTitleWellbeing and activity in dementia: A comparison of group reminiscence therapy, structured goal-directed group activity and unstructured time. Aging Ment Health 4 IssueID4 354–358

    Google Scholar 

  • K Bredin T Kitwood J Wattis (1995) ArticleTitleDecline in quality of life for patients with severe dementia following a ward merger. Int J Geriatr Psychiatry 10 IssueID11 973–976

    Google Scholar 

  • C Ballard J O’Brien I James et al. (2001) ArticleTitleQuality of life for people with dementia living in residential and nursing home care: The impact of performance on activities of daily living, behavioral and psychological symptoms, language skills, and psychotropic drugs. Int Psychogeriatr 13 IssueID1 93–106

    Google Scholar 

  • A Innes C Surr (2001) ArticleTitleMeasuring the well-being of people with dementia living in formal care settings: The use of Dementia Care Mapping. Aging Ment Health 5 IssueID3 258–268

    Google Scholar 

  • PV Rabins JD Kasper L Kleinman BS Black DL Patrick (1999) ArticleTitleConcepts and methods in the development of the ADRQL: An instrument for assessing health-related quality of life in persons with Alzheimer’s disease. J Ment Health Aging 5 IssueID1 33–48

    Google Scholar 

  • S Terada H Ishizu Y Fujisawa et al. (2002) ArticleTitleDevelopment and evaluation of a health-related quality of life questionnaire for the elderly with dementia in Japan. Int J Geriatr Psychiatry 17 IssueID9 851–858

    Google Scholar 

  • T Gonzalez-Salvador CG Lyketsos A Baker et al. (2000) ArticleTitleQuality of life in dementia patients in long-term care. Int J Geriatr Psychiatry 15 IssueID2 181–189

    Google Scholar 

  • CG Lyketsos T Gonzales-Salvador JJ Chin A Baker B Black P Rabins (2003) ArticleTitleA follow-up study of change in quality of life among persons with dementia residing in a long-term care facility. Int J Geriatr Psychiatry 18 IssueID4 275–281 Occurrence Handle10.1002/gps.796 Occurrence Handle12673600

    Article  PubMed  Google Scholar 

  • RG Logsdon LE Gibbons SM McCurry L Teri (1999) ArticleTitleQuality of life in Alzheimer’s disease: Patient and caregiver reports. J Ment Health Aging 5 IssueID1 21–32

    Google Scholar 

  • RG Logsdon LE Gibbons SM McCurry L Teri (2002) ArticleTitleAssessing quality of life in older adults with cognitive impairment. Psychosom Med 64 IssueID3 510–519

    Google Scholar 

  • C Selai A Vaughan RJ Harvey R Logsdon (2001) ArticleTitleUsing the QOL-AD in the UK. Int J Geriatr Psychiatry 16 IssueID5 537–538

    Google Scholar 

  • 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

    Google Scholar 

  • GS Alexopoulos RC Abrams RC Young CA Shamoian (1988) ArticleTitleCornell Scale for Depression in Dementia. Biol Psychiatry 23 271–284

    Google Scholar 

  • RG Logsdon L Teri (1997) ArticleTitleThe Pleasant Events Schedule-AD: Psychometric properties and relationship to depression and cognition in Alzheimer’s disease patients. Gerontologist 37 IssueID1 40–45

    Google Scholar 

  • LI Hoogendoorn S Kamp CA Mahomed HJ Ader ME Ooms JT Steen Particlevan der (2001) ArticleTitleThe role of observer for the reliability of Dutch version of the Discomfort Scale–Dementia of Alzheimer Type (DS-DAT). Tijdschr Gerontol Geriatr 32 IssueID3 117–121

    Google Scholar 

  • JT Steen ParticleVan der ME Ooms G Wal Particlevan der MW Ribbe (2002) ArticleTitleMeasuring discomfort in patients with dementia. Validity of a Dutch version of the Discomfort Scale–dementia of Alzheimer type (DS-DAT). Tijdschr Gerontol Geriatr 33 IssueID6 257–263

    Google Scholar 

  • C Hadley S Brown A Smith (1999) ArticleTitleEvaluating interventions for people with severe dementia: Using the positive Response Schedule. Aging Ment Health 3 IssueID3 234–240

    Google Scholar 

  • CE Selai MR Trimble MN Rossor RJ Harvey (2001) ArticleTitleAssessing quality of life in dementia: Preliminary psychometric testing of the Quality of Life Assessment Schedule (QOLAS). Neuropsychol Rehab 11 IssueID3–4 219–243

    Google Scholar 

  • CA O’Boyle (1994) ArticleTitleThe schedule for the evaluation of individual quality of life (SEIQoL). Int J Mental Health 23 IssueID3 3–23

    Google Scholar 

  • CJ Schölzel-Dorenbos (2000) ArticleTitleMeasurement of quality of life in patients with dementia of Alzheimer type and their caregivers: Schedule for the Evaluation of Individual Quality of Life (SEIQoL). Tijdschr Gerontol Geriatr 31 IssueID1 23–26

    Google Scholar 

  • T Struttmann M Fabro G Romieu et al. (1999) ArticleTitleQuality-of-life assessment in the old using the WHOQOL 100: Differences between patients with senile dementia and patients with cancer. Int Psychogeriatr 11 IssueID3 273–279

    Google Scholar 

  • T Pettit G Livingston M Manela G Kitchen C Katona A Bowling (2001) ArticleTitleValidation and normative data of health status measures in older people: The Islington study. Int J Geriatr Psychiatry 16 IssueID11 1061–1070

    Google Scholar 

  • J Novella J Ankri I Morrone et al. (2001) ArticleTitleEvaluation of the quality of life in dementia with a generic quality of life questionnaire: The Duke Health Profile. Dement Geriatr Cogn Disord 12 IssueID2 158–166

    Google Scholar 

  • F Bureau-Chalot JL Novella D Jolly J Ankri F Guillemin F Blanchard (2002) ArticleTitleFeasibility, acceptability and internal consistency reliability of the nottingham health profile in dementia patients. Gerontology 48 IssueID4 220–225

    Google Scholar 

  • JL Novella C Jochum D Jolly et al. (2001) ArticleTitleAgreement between patients’ and proxies’ reports of quality of life in Alzheimer’s disease. Qual Life Res 10 IssueID5 443–452

    Google Scholar 

  • PJ Neumann KM Kuntz J Leon et al. (1999) ArticleTitleHealth utilities in Alzheimer’s disease: A cross-sectional study of patients and caregivers. Med Care 37 IssueID1 27–32

    Google Scholar 

  • PJ Neumann EA Sandberg SS Araki KM Kuntz D Feeny MC Weinstein (2000) ArticleTitleA comparison of HUI2 and HUI3 utility scores in Alzheimer’s disease. Med Decis Making 20 IssueID4 413–422

    Google Scholar 

  • AJ Carr IJ Higginson (2001) ArticleTitleAre quality of life measures patient centred? Br Med J 322 IssueID7298 1357–1360

    Google Scholar 

  • CG Mozley P Huxley C Sutcliffe et al. (1999) ArticleTitle‘Not knowing where I am doesn’t mean I don’t know what I like’: Cognitive impairment and quality of life responses in elderly people. Int J Geriatr Psychiatry 14 IssueID9 776–783

    Google Scholar 

  • RG Logsdon SM Albert (1999) ArticleTitleAssessing quality of life in Alzheimer’s disease: Conceptual and methodological issues. J Ment Health Aging 5 IssueID1 3–6

    Google Scholar 

  • B Jennings (1999) ArticleTitleA life greater than the sum of its sensations: Ethics, dementia, and the quality of life. J Ment Health Aging 5 IssueID1 95–106

    Google Scholar 

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Correspondence to Teake P. Ettema.

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Ettema, T.P., Dröes, RM., Lange, J.d. et al. A review of quality of life instruments used in dementia. Qual Life Res 14, 675–686 (2005). https://doi.org/10.1007/s11136-004-1258-0

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