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Quality of Life in Dementia

Published online by Cambridge University Press:  02 December 2014

Gary Naglie*
Affiliation:
The Division of General Internal Medicine, University Health Network
*
Toronto Rehabilitation Institute, 1008-550 University Avenue, Toronto, Ontario, M5G 2A2, Canada.
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Abstract

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There is a growing consensus that quality of life (QOL) is an important outcome for assessing the effectiveness of interventions for dementia, but there is no agreement about how to best measure it. Various approaches to QOL assessment have been employed to measure the QOL of persons with dementia, including patient self-report, caregiver proxy report and observational assessment by trained observers. Furthermore, several dementia-specific measures of QOL have been developed, and several generic measures of QOL have been used to assess QOL in dementia. However, to date, QOL has rarely been included as an outcome measure in clinical trials of pharmacotherapy for dementia. This manuscript reviews the current state of knowledge about QOL assessment in dementia.

Résumé:

RÉSUMÉ:

La qualité de vie (QDV) est de plus en plus reconnue comme étant importante dans l'évaluation de l'efficacité des interventions dans la démence. Cependant il n'existe pas de consensus sur la meilleure façon de la mesurer. Différentes approches ont été utilisées pour l'évaluer chez des patients déments, dont l'auto-évaluation, l'évaluation indirecte par le soignant et l'évaluation par des observateurs entraînés. De plus, plusieurs instruments de mesure de la QDV spécifiques de la démence ont été développés et plusieurs mesures génériques de la QDV ont été utilisées pour évaluer la QDV dans la démence. Cependant, la QDV a rarement été incluse comme critère d'évaluation dans les essais cliniques en pharmacothérapie de la démence jusqu'à maintenant. Ce manuscrit revoit les connaissances actuelles sur l'évaluation de la QDV dans la démence.

Type
Original Articles
Copyright
Copyright © The Canadian Journal of Neurological 2007

References

1. Logsdon, RG. Making the most of every day: quality of life in Alzheimer’s disease. In: Harris, PB, editor. The person with Alzheimer’s disease: pathways to understanding the experience. Baltimore: Johns Hopkins Press; 2002: p. 7587.Google Scholar
2. Mack, JL, Whitehouse, PJ. Quality of life in dementia: state of the art - report of the International Working Group for Harmonization of Dementia Drug Guidelines and the Alzheimer’s Society satellite meeting. Alzheimer Dis Assoc Disord. 2001; 15:6971.CrossRefGoogle Scholar
3. Selai, C, Trimble, MR. Assessing quality of life in dementia. Aging & Mental Health. 1999; 3:10111.CrossRefGoogle Scholar
4. Ready, RE, Ott, BR. Quality of life measures for dementia. Health Qual Life Outcomes. 2003; 1:119.Google Scholar
5. WHOQOL. Measuring quality of life. Geneva: The World Health Organization. 1997: 18.Google Scholar
6. Guyatt, GH, Feeny, DH, Patrick, DL. Measuring health-related quality of life. Ann Intern Med. 1993; 118:6229.CrossRefGoogle ScholarPubMed
7. Torrance, GW. Measurement of health state utilities for economic appraisal. J Health Econ. 1986; 5:130.Google Scholar
8. Silberfeld, M, Rueda, S, Krahn, M, Naglie, G. Content validity for dementia of three generic preference based health related quality of life instruments. Qual Life Res. 2002; 11:719.Google Scholar
9. Whitehouse, PJ. Alzheimer’s disease: past, present, and future. Eur Arch Psychiatry Clin Neurosci. 1999; 249 Suppl 3:S435.CrossRefGoogle ScholarPubMed
10. Weyerer, S, Schaufele, M. The assessment of quality of life in dementia. Int Psychogeriatr. 2003; 15:2138.Google Scholar
11. Brod, M, Stewart, AL, Sands, L. Conceptualization of quality of life in dementia. J Mental Health Aging. 1999; 5:719.Google Scholar
12. Mozley, CG, Huxley, P, Sutcliffe, C, Bagley, H, Burns, A, Challis, D, et al. ‘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. 1999; 14:77683.Google Scholar
13. Logsdon, RG, Gibbons, LE, McCurry, S, Teri, L. Assessing quality of life in older adults with cognitive impairment. Psychosom Med. 2002; 64:5109.Google Scholar
14. Brod, M, Stewart, AL, Sands, L, Walton, P. Conceptualization and measurement of quality of life in dementia: the dementia quality of life instrument (DQoL). Gerontologist. 1999; 39:2535.CrossRefGoogle ScholarPubMed
15. Novella, J, Ankri, J, Morrone, I, Guillemin, F, Jolly, D, Jochum, C, et al. Evaluation of the quality of life in dementia with a generic quality of life questionnaire: the Duke Health Profile. Dement Geriatr Cogn Disord. 2001; 12:15866.Google Scholar
16. Novella, JL, Jochum, C, Ankri, J, Morrone, I, Jolly, D, Blanchard, F. Measuring general health status in dementia: practical and methodological issues in using the SF-36. Aging-Clinical & Experimental Research. 2001; 13:36249.CrossRefGoogle ScholarPubMed
17. Naglie, G, Tomlinson, G, Tansey, C, Irvine, J, Ritvo, P, Black, S, et al. Utility-based quality of life measures in Alzheimer’s disease. Qual Life Res. 2006; 15:63143.Google Scholar
18. Ready, RE, Ott, BR, Grace, J. Patient versus informant perspectives of quality of life in mild cognitive impairment and Alzheimer’s disease. Int J Geriatr Psychiatry. 2004; 19:25665.CrossRefGoogle ScholarPubMed
19. Sands, LP, Ferreira, P, Stewart, AL, Brod, M, Yaffe, K. What explains differences between dementia patients’ and their caregivers’ ratings of patients’ quality of life? Am J Geriatr Psychiatry. 2004; 12:27280.CrossRefGoogle ScholarPubMed
20. Novella, JL, Jochum, C, Jolly, D, Morrone, I, Ankri, J, Bureau, F, et al. Agreement between patients’ and proxies’ reports of quality of life in Alzheimer’s disease. Qual Life Res. 2001; 10:44352.Google Scholar
21. Coucill, W, Bryan, S, Bentham, P, Buckley, A, Laight, A. EQ-5D in patients with dementia an investigation of inter-rater agreement. Med Care. 2001; 39:76071.Google Scholar
22. Karlawish, JH, Casarett, D, Klocinski, J, Clark, CM. The relationship between caregivers’ global ratings of Alzheimer’s disease patients’ quality of life, disease severity, and the caregiving experience. J Am Geriatr Soc. 2001; 49:106670.Google Scholar
23. Spranger, MA, Aaronson, NK. The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: a review. J Clin Epidemiol. 1992; 45:74360.Google Scholar
24. Logsdon, RG, Gibbons, LE, McCurry, SM, Teri, L. Quality of life in Alzheimer’s disease: patient and caregiver reports. J Mental Health Aging. 1999; 5:2132.Google Scholar
25. Boyer, F, Novella, J-L, Morrone, I, Jolly, D, Blanchard, F. Agreement between dementia patient report and proxy reports using the Nottingham Health Profile. Int J Geriatr Psychiatry. 2004; 19:102634.Google Scholar
26. DeJong, R, Osterlund, OW, Roy, GW. Measurement of quality-of-life changes in patients with Alzheimer’s disease. Clin Ther. 1989; 11:54554.Google ScholarPubMed
27. Demers, L, Oremus, M, Perrault, A, Champoux, N, Wolfson, C. Review of outcome measurement instruments in Alzheimer’s disease drug trials: psychometric properties of functional and quality of life scales. J Geriatr Psychiatry Neurol. 2000; 13:17080.Google Scholar
28. Lawton, MP. Quality of life in Alzheimer disease. Alzheimer Dis Assoc Disord. 1994; 8 Suppl 3:S13850.CrossRefGoogle ScholarPubMed
29. Assessing quality of life in Alzheimer’s disease. Albert, SM, Logsdon, RG, editors. New York: Springer Publishing Company, Inc; 2000.Google Scholar
30. Ready, R, Ott, B, Grace, J, Fernandez, I. The Cornell-Brown scale for quality of life in dementia. Alzheimer Dis Assoc Disord. 2002; 16:10915.Google Scholar
31. Burgener, S, Twigg, P. Relationships among caregiver factors and quality of life in care recipients with irreversible dementia. Alzheimer Dis Assoc Disord. 2002; 16:88102.Google Scholar
32. Weiner, M, Martin-Cook, K, Svetlik, D, Saine, K, Foster, B, Fontaine, CS. The quality of life in late-stage dementia (QUAL-ID) Scale. J Amer Med Dir Assoc. 2000; 1:1146.Google ScholarPubMed
33. Fossey, J, Lee, L, Ballard, C. Dementia care mapping as a research tool for measuring quality of life in care setting: psychometric properties. Int J Geriatr Psychiatry. 2002; 17:106470.Google Scholar
34. Albert, SM, Del Castillo-Castaneda, C, Sano, M, Jacobs, DM, Marder, K, Bell, K, et al. Quality of life in patients with Alzheimer’s disease as reported by patient proxies. J Am Geriatr Soc. 1996; 44:13427.CrossRefGoogle ScholarPubMed
35. Coon, D, Mace, N, Weaverdyck, S. Resident behaviour/life quality inventory. In: Coon, D, Mace, N, editors. Quality of life in longterm care. New York: Haworth Press; 1996.Google Scholar
36. Selai, CE, Trimble, MR, Harvey, RJ. Assessing quality of life in dementia: preliminary psychometric testing of the Quality of Life Assessment Schedule (QOLAS). Neuropsychological Rehabilitation. 2001; 11:21943.Google Scholar
37. Rabins, PV, Kasper, JD, Kleinman, L, Black, BS, Patrick, DL. Concepts and methods in the development of the ADRQL: An instrument for assessing health-related quality of life in persons with Alzheimer’s disease. Journal of Mental Health and Aging. 1999; 5:3348.Google Scholar
38. Albert, SM, Marks, J, Barrett, V, Gurland, B. Home health care and quality of life of patients with Alzheimer’s disease. Am J Prev Med. 1997; 13:638.CrossRefGoogle ScholarPubMed
39. Edelman, P, Fulton, BR, Kuhn, D. Comparison of dementia-specific quality of life measures in adult day centres. Home Health Care Services Quarterly. 2004; 23:2542.Google Scholar
40. Thorgrimsen, L, Selwood, A, Spector, A, Royan, L, de Madariaga Lopez, M, Woods, RT, et al. Whose quality of life is it anyway? The validity and reliability of the quality of life-Alzheimer’s disease (QOL-AD) scale. Alzheimer Dis Assoc Disord. 2003; 17:2018.CrossRefGoogle ScholarPubMed
41. Gonzalez-Salvador, T, Lyketsos, CG, Baker, A, Hovanec, L, Roques, C, Brandt, J, et al. Quality of life in dementia patients in long-term care. Int J Geriatr Psychiatry. 2000; 15:1819.Google Scholar
42. Bureau-Chalot, F, Novella, JL, Jolly, D, Ankri, J, Guillemin, F, Blanchard, F. Feasibility, acceptability and internal consistency reliability of the Nottingham Health Profile in dementia patients. Gerontology. 2002; 48:2205.CrossRefGoogle ScholarPubMed
43. Mador, J, Clark, M, Crotty, M, Hecker, J. Utility-weighted measures of quality of life in Alzheimer disease. Alzheimer Dis Assoc Disord. 2002; 16:2023.CrossRefGoogle ScholarPubMed
44. Sano, M, Albert, SM, Tractenberg, R, Schittini, M. Developing utilities: quantifying quality of life for stages in Alzheimer’s disease as measured by the clinical dementia rating. In: Albert, SM, Logsdon, R, editors. Assessing quality of life in Alzheimer’s disease. New York: Springer Publishing; 2000: p. 8192.Google Scholar
45. Kerner, DN, Patterson, TL, Grant, I, Kaplan, RM. Validity of the quality of well-being scale for patients with Alzheimer’s disease. J Aging Health. 1998; 10:4461.Google Scholar
46. Neumann, PJ, Kuntz, KM, Leon, J, Araki, SS, Hermann, RC, Hsu, MA, et al. Health utilities in Alzheimer’s disease: a cross-sectional study of patients and caregivers. Med Care. 1999; 37:2732.CrossRefGoogle ScholarPubMed
47. Ankri, J, Beaufils, B, Novella, J-L, Morrone, I, Guillemin, F, Jolly, D, et al. Use of the EQ-5D among patients suffering from dementia. J Clin Epidemiol. 2003; 56:105563.CrossRefGoogle ScholarPubMed
48. Santaguida, P, Raina, P, Booker, L, Patterson, C, Baldassarre, F, Cowan, D, et al. Pharmacological treatment of dementia: evidence report/technology assessment no. 97 (Prepared by McMaster University Evidence-based Practice Center under contract no. 290-02-0020). AHRQ Publication No. 04-E018-2. Rockville, MD: Agency for Healthcare Research and Quality. April 2004.Google Scholar
49. Blau, TH. Quality of life, social indicators, and criteria of change. Professional Psychology. 1977:464-73.Google Scholar
50. Rogers, SL, Doody, RS, Mohs, RC, Friedhoff, LT, the Donepezil Study Group. Donepezil improves cognition and global function in Alzheimer disease. Arch Intern Med. 1998; 158:102131.Google Scholar
51. Burns, A, Rossor, M, Hecker, J, Gauthier, S, Petit, H, Moller, HJ, et al. The effects of donepezil in Alzheimer’s disease - results from a multinational trial. Dement Geriatr Cogn Disord. 1999; 10:23744.CrossRefGoogle ScholarPubMed
52. Rogers, SL, Friedhoff, LT. The efficacy and safety of donepezil in patients with Alzheimer’s disease: results of a US Multicentre, randomized, double-blind, placebo-controlled trial. The Donepezil Study Group. Dementia. 1996; 7:293303.Google ScholarPubMed
53. Rogers, SL, Farlow, MR, Doody, RS, Mohs, R, Friedhoff, LT. A 24-week, double-blind, placebo-controlled trial of donepezil in patients with Alzheimer’s disease. Donepezil Study Group. Neurology. 1998; 50:13645.Google Scholar
54. Knapp, MJ, Knopman, DS, Solomon, PR, Pendlebury, WW, Davis, CS, Gracon, SI. A 30-week randomized controlled trial of high-dose tacrine in patients with Alzheimer’s disease. The Tacrine Study Group. JAMA. 1994; 271:98591.Google Scholar
55. Winblad, B, Engedal, K, Soininen, H, Verhey, F, Waldemar, G, Wimo, A, et al. A 1-year, randomized, placebo-controlled study of donepezil in patients with mild to moderate AD. Neurology. 2001; 57:48995.Google Scholar
56. Corey-Bloom, J, Anand, R, Veach, J. A randomized trial evaluating the efficacy and safety of ENA 713 (rivastigmine tartrate), a new acetylcholinesterase inhibitor, in patients with mild to moderately severe Alzheimer’s disease. Int J Geriatr Psychopharm. 1998; 1:5565.Google Scholar
57. Rosler, M, Anand, R, Cicin-Sain, A, Gauthier, S, Agid, Y, Dal-Bianco, P, et al. Efficacy and safety of rivastigmine in patients with Alzheimer’s disease: international randomized controlled trial. BMJ. 1999; 318:6338.Google Scholar
58. Wilkinson, D, Murray, J. Galantamine: a randomized, double-blind, dose comparison in patients with Alzheimer’s disease. Int J Geriatr Psychiatry. 2001; 16:8527.Google Scholar
59. Spector, A, Thorgrimsen, L, Woods, B, Royan, L, Davies, S, Butterworth, M, et al. Efficacy of an evidence-based cognitive stimulation therapy programme for people with dementia. Br J Psychiatry. 2003; 183:24854.Google Scholar
60. Cohen, J. Statistical power analysis for the behavioural sciences. London: Academic Press; 1969.Google Scholar
61. Chapman, SB, Weiner, MF, Rackley, A, Hynan, LS, Zientz, J. Effects of cognitive-communication stimulation for Alzheimer’s disease patients treated with donepezil. J Speech Lang Hear Res. 2004; 47:114963.CrossRefGoogle ScholarPubMed
62. Feldman, H, Gauthier, S, Hecker, J, Vellas, B, Emir, B, Mastey, V, et al. Efficacy of donepezil on maintenance of activities of daily living in patients with moderate-to-severe Alzheimer’s disease and the effect on caregiving burden. J Am Geriatr Soc. 2003; 51:73744.Google Scholar
63. Bullock, R. The needs of the caregiver in the long-term treatment of Alzheimer disease. Alzheimer Dis Assoc Disord. 2004; 18: S1723.CrossRefGoogle ScholarPubMed
64. Markowitz, JS, Guterman, EM, Sadik, K, Papadopoulos, G. Healthrelated quality of life for caregivers of patients with Alzheimer disease. Alzheimer Dis Assoc Disord. 2003; 17:20914.Google Scholar
65. Busschbach, JJ, Brouwer, WB, van der Donk, A, Passchier, J, Rutten, FF. An outline for a cost-effectiveness analysis of a drug for patients with Alzheimer’s disease. Pharmacoeconomics. 1998; 13:2134.Google Scholar
66. Fillit, HM, Gutterman, EM, Brooks, RL. Impact of donepezil on caregiving burden for patients with Alzheimer’s disease. Int Psychogeriatr. 2000; 12:389401.Google Scholar
67. Schulz, R, O’Brien, A, Czaja, S, Ory, MG, Norris, R, Martire, LM, et al. Dementia caregiver intervention research: in search of clinical significance. Gerontologist. 2002; 42:589602.Google Scholar
68. Walker, MD, Salek, SS, Bayer, AJ. A review of quality of life in Alzheimer’s disease. Issues in assessing disease impact. Pharmacoeconomics. 1998; 14: (pt1) 499530.Google Scholar
69. Feldman, H, Gauthier, S, Hecker, J, Vellas, B, Subbiah, P, Whalen, E, et al. A 24-week, randomized, double-blind study of donepezil in moderate to severe Alzheimer’s disease. Neurology. 2001; 57:61320.Google Scholar