Quality of Life in Dementia Patients and Their Proxies: A Narrative Review of the Concept and Measurement Scales

  • C. J. M. Schölzel-Dorenbos
  • P. F. M. Krabbe
  • M. G. M. Olde Rikkert


Dementia profoundly affects quality of life of patients as well as family and caregivers. Quality of life (QOL) refers to people’s emotional, social and physical wellbeing, and their ability to function in daily life. QOL measures attempt to evaluate directly the impact of dementia or interventions on people’s ability to function in life. Besides this global conceptualization of QOL there is a growing field of research on QOL measures focused on the measurement of health related quality of life (HRQL), i.e., a person’s satisfaction or happiness with domains of life insofar as they affect or are affected by the dementia. HRQL can be distinguished from QOL in that it concerns itself primarily with those factors that fall under the purview of health care providers and health care systems ( QOL/HRQL). QOL measurement provides a subjective evaluation that captures benefits and harms of interventions not detected by standard clinical outcomes. Three methods of QOL assessment are available: self-report, proxy-report and  proxy rating by direct observation of behavior assumed to be related to QOL. Acknowledging the problem of potential bias of proxy-reports, self-report methods are preferable if possible. If not, observational methods by an uninvolved professional are an acceptable alternative.

By content, QOL measurement scales also can be categorized into three groups: generic, domain-specific or disease-specific. Generic scales can be divided in health profiles and utility measurements. Health profiles classify subjects with respect to a broad spectrum of QOL domains, thus producing a descriptive profile from several health domains. Generic utility measures enable cost-utility analysis. Cost is measured in monetary units. Benefit is usually expressed in quality-adjusted life years (QALYs) or disability-adjusted life years (DALYs). Domain-specific questionnaires rate QOL on circumscript areas, such as mobility, physical restrictions, autonomy or mastery. Dementia-specific measures probably have a higher grade of  responsiveness, i.e., a higher ability to identify changes that relate to the natural course of dementia or treatment interventions.

QOL measurement methods in dementia are still facing important challenges. Measurement properties encompass reliability, validity and responsiveness. Responsiveness, the ability to detect relevant change over time in health status, is an essential property of outcome measures for intervention studies and still largely unclear in dementia research. Another important item is response shift, referring to the psychological adaptation of perception of QOL following a change in health status (e.g., progress of the dementia), which should also be addressed adequately. Next to the differential effects of dementia on the patients themselves, caring for people with dementia is often associated with increase in distress and decrease in mental health and wellbeing, thus affecting QOL of proxies as well. Therefore, despite the remaining scientific challenges in the field, it is highly recommendable to include QOL assessment of patients and proxies as endpoints in all dementia and MCI intervention trials.


Response Shift Minimal Important Difference Dementia Patient Utility Measure Proxy Rating 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

List of Abbreviations:


Activity and Affect Indicators of quality of life


Alzheimer’s disease


Alzheimer’s Disease health-Related Quality of Life scale


Bath Assessment of Subjective Quality of Life in Dementia


Cornell-Brown Scale for quality of life in dementia


cost-effectiveness analysis


cost-utility analysis


disability-adjusted life years


Dementia Care Mapping


Duke Health Profile


Dementia Quality of Life scale


Discomfort Scale-Dementia of Alzheimer Type


European Quality of life - 5 Dimensions


European Quality of life - 6 Dimensions


health related quality of life


Health Status Questionnaire


Health Utilities Index


Mild Cognitive Impairment


minimal important difference


Nottingham Health Profile


Progressive Deterioration Scale


patient reported outcome


person trade-off


Psychological Well-Being in Cognitively Impaired Persons


quality-adjusted life year


quality of life


Quality of Life-Alzheimer’s Disease scale


Quality of Life Assessment Schedule


Quality of Life for Dementia


Quality of Life in Late-Stage Dementia scale


Quality of Well-Being scale


responsiveness index


structural equation modeling


Schedule for the Evaluation of Individual Quality of Life


SF-36 revised into a six-dimensional health state classification: SF-36, Medical Outcomes Study 36-item Short Form Health Survey


Medical Outcomes Study 12-Item Short Form Health Survey


standard gamble


Sickness Impact Profile


time trade-off


visual analogue scale


World Health Organization Quality of Life 100


  1. Albert SM, Del Castillo-Castaneda C, Sano M, Jacobs DM, Marder K, Bell K, Bylsma F, Lafleche G, Brandt J, Albert M, Stern Y. (1996). J Am Geriatr Soc. 44: 1342–1347.PubMedGoogle Scholar
  2. Albrecht GL, Devlieger PJ. (1999). Soc Sci Med. 48: 977–988.PubMedCrossRefGoogle Scholar
  3. Anderson RT, Aaronson NK, Bullinger M, McBee WL. (1996). Pharmacoeconomics. 10: 336–355.PubMedCrossRefGoogle Scholar
  4. Andresen EM, Rothenberg BM, Kaplan RM. (1998). Med Care. 36: 1349–1360.PubMedCrossRefGoogle Scholar
  5. Ankri J, Beaufils B, Novella JL, Morrone I, Guillemin F, Jolly D, Ploton L, Blanchard F. (2003). J Clin Epidemiol. 56: 1055–1063.PubMedCrossRefGoogle Scholar
  6. Bergner M, Bobbitt RA, Carter WB, Gilson BS. (1981). Med Care. 19: 787–805.PubMedCrossRefGoogle Scholar
  7. Birks J. (2006). Cochrane Database Syst Rev. CD005593.Google Scholar
  8. Boyer F, Novella JL, Morrone I, Jolly D, Blanchard F. (2004). Int J Geriatr Psychiatry. 19: 1026–1034.PubMedCrossRefGoogle Scholar
  9. Brazier J, Deverill M, Green C, Harper R, Booth A. (1999). Health Technol. Assess. 3: i–164.PubMedGoogle Scholar
  10. Brazier J, Roberts J, Deverill M. (2002). J Health Econ. 21: 271–292.PubMedCrossRefGoogle Scholar
  11. Brazier J, Roberts J, Tsuchiya A, Busschbach J. (2004). Health Econ. 13: 873–884.PubMedCrossRefGoogle Scholar
  12. Brod M, Stewart AL, Sands L. (1999). J Ment Health Aging. 5: 7–20.Google Scholar
  13. Brooks R. (1996). EuroQol: the current state of play. Health Policy. 37: 53–72.PubMedCrossRefGoogle Scholar
  14. Bureau-Chalot F, Novella JL, Jolly D, Ankri J, Guillemin F, Blanchard F. (2002). Gerontology. 48: 220–225.PubMedCrossRefGoogle Scholar
  15. Burgener S, Twigg P. (2002). Alzheimer Dis Assoc Disord. 16: 88–102.PubMedCrossRefGoogle Scholar
  16. Coen R, O’Mahony D, O’Boyle C, et al. (1993). Ir J Psychology. 14: 154–163.Google Scholar
  17. Conner-Spady B, Suarez-Almazor ME. (2003). Med Care. 41: 791–801.PubMedCrossRefGoogle Scholar
  18. Councill W, Bryan S, Bentham P, Buckley A, Laight A. (2001). Med Care. 39: 760–771.CrossRefGoogle Scholar
  19. De Jong R, Osterlund OW, Roy GW. (1989). Clin Ther. 11: 545–554.Google Scholar
  20. Ettema TP, Droes RM, de Lange J, Mellenbergh GJ, Ribbe MW. (2005). Qual Life Res. 14: 675–686.PubMedCrossRefGoogle Scholar
  21. Ettema TP, Dröes RM, de Lange J, Mellenbergh GJ, Ribbe MW. (2007). Int J Geriatr Psychiatry. 22: 424–430.PubMedCrossRefGoogle Scholar
  22. Feeny D, Furlong W, Boyle M, Torrance GW. (1995). Pharmacoeconomics. 7: 490–502.PubMedCrossRefGoogle Scholar
  23. Furlong WJ, Feeny DH, Torrance GW, Barr RD. (2001). Ann Med. 33: 375–384.PubMedCrossRefGoogle Scholar
  24. Gonzalez-Salvador MT, Arango C, Lyketsos CG, Barba AC. (1999). Int J Geriatr Psychiatry. 14: 701–710.PubMedCrossRefGoogle Scholar
  25. Green C. (2001). Health Econ. 10: 233–243.PubMedCrossRefGoogle Scholar
  26. Guyatt G, Walter S, Norman G. (1987). J Chronic Dis. 40: 171–178.PubMedCrossRefGoogle Scholar
  27. Guyatt GH, Feeny DH, Patrick DL. (1993). Ann Intern Med. 118: 622–629.PubMedGoogle Scholar
  28. Guyatt GH, Kirshner B, Jaeschke R. (1992). J Clin Epidemiol. 45: 1341–1345.PubMedCrossRefGoogle Scholar
  29. Hurley AC, Volicer BJ, Hanrahan PA, Houde S, Volicer L. (1992). Res Nurs Health. 15: 369–377.PubMedCrossRefGoogle Scholar
  30. Jonsson L, Andreasen N, Kilander L, Soininen H, Waldemar G, Nygaard H, Winblad B, Jonhagen ME, Hallikainen M, Wimo A. (2006). Alzheimer Dis Assoc Disord. 20: 49–55.PubMedCrossRefGoogle Scholar
  31. Joyce CR. (1994). J Cardiovasc Pharmacol 23 Suppl. 3: S26–S33.Google Scholar
  32. Katona C, Livingston G, Cooper C, Ames D, Brodaty H, Chiu E. (2007). Int Psychogeriatr. 19: 345–354.PubMedCrossRefGoogle Scholar
  33. Kerner DN, Patterson TL, Grant I, Kaplan RM. (1998). J Aging Health. 10: 44–61.PubMedGoogle Scholar
  34. Kind P. (2003). In: Brooks R, Rabin R, Fd. Charro (ed.) The measurement and evaluation of health status using EQ-5D: A European perspective. Kluwer Academic Publishers.Google Scholar
  35. Kitwood T, Bredin K. (1992). J Adv Health Nurs Care. 1: 41–60.Google Scholar
  36. Korfage IJ, de Koning HJ, Essink-Bot ML. (2007). Qual Life Res. 16: 1627–1634.PubMedCrossRefGoogle Scholar
  37. Krabbe PF, Stouthard ME, Essink-Bot ML, Bonsel GJ. (1999). J Clin Epidemiol. 52: 293–301.PubMedCrossRefGoogle Scholar
  38. Lamers LM, Bouwmans CA, van Straten A, Donker MC, Hakkaart L. (2006). Health Econ. 15: 1229–1236.PubMedCrossRefGoogle Scholar
  39. Logsdon RG, Gibbons LE, McCurry SM, Teri L. (2002). Psychosom. Med. 64: 510–519.PubMedGoogle Scholar
  40. Mack JL, Whitehouse PJ. (2001). Alzheimer Dis Assoc Disord. 15: 69–71.PubMedCrossRefGoogle Scholar
  41. Marra CA, Marion SA, Guh DP, Najafzadeh M, Wolfe F, Esdaile IM, Clarke AE, Gignac MA, Anis AH. (2007). J Clin Epidemiol. 60: 616–624.PubMedCrossRefGoogle Scholar
  42. McDonough CM, Tosteson AN. (2007). Pharmacoeconomics. 25: 93–106.PubMedCrossRefGoogle Scholar
  43. McGee HM, O’Boyle CA, Hickey A, O’Malley K, Joyce CR. (1991). Psychol Med. 21: 749–759.PubMedCrossRefGoogle Scholar
  44. Miguel RS, Lopez-Gonzalez AM, Sanchez-Iriso E, Mar J, Cabases JM. (2007). Pharm World Sci. 30: 154–160.PubMedCrossRefGoogle Scholar
  45. Missotten P, Ylieff M, Di Notte D, Paquay L, De Lepeleire J, Buntinx F, Fontaine O. (2007). Int J Geriatr Psychiatry. 22: 1201–1207.PubMedCrossRefGoogle Scholar
  46. Naglie G. (2007). Can J Neurol Sci 34 Suppl. 1: S57–S61.Google Scholar
  47. Naglie G, Tomlinson G, Tansey C, Irvine J, Ritvo P, Black SE, Freedman M, Silberfeld M, Krahn M. (2006). Qual Life Res. 15: 631–643.PubMedCrossRefGoogle Scholar
  48. Neumann PJ, Kuntz KM, Leon J, Araki SS, Hermann RC, Hsu MA, Weinstein MC. (1999). Med Care. 37: 27–32.PubMedCrossRefGoogle Scholar
  49. Novella J, Ankri J, Morrone I, Guillemin F, Jolly D, Jochum C, Ploton L, Blanchard F. (2001). Dement Geriatr Cogn Disord. 12: 158–166.PubMedCrossRefGoogle Scholar
  50. Nowels D, McGloin J, Westfall JM, Holcomb S. (2005). Qual Life Res. 14: 95–105.PubMedCrossRefGoogle Scholar
  51. O’Boyle CA, McGee H, Hickey A, O’Malley K, Joyce CR. (1992). Lancet. 339: 1088–1091.PubMedCrossRefGoogle Scholar
  52. Pettit T, Livingston G, Manela M, Kitchen G, Katona C, Bowling A. (2001). Int J Geriatr Psychiatry. 16: 1061–1070.PubMedCrossRefGoogle Scholar
  53. Pinto Prades JL. (1997). Health Econ. 6: 71–81.PubMedCrossRefGoogle Scholar
  54. Porzsolt F, Kojer M, Schmidl M et al. (2004). Health Qual Life Outcomes. 2: 10–18.PubMedCrossRefGoogle Scholar
  55. Rabins PV. (2000). Int Psychogeriatr. 12: 47–49.CrossRefGoogle Scholar
  56. Rabins PV, Kasper JD, Kleinman L et al. (1999). J Ment Health Aging. 5: 33–48.Google Scholar
  57. Räsänen P, Roine E, Sintonen H, Semberg-Konttinen V, Ryynanen OP, Roine R. (2006). Int J Technol Assess Health Care. 22: 235–241.PubMedCrossRefGoogle Scholar
  58. Ready RE, Ott BR, Grace J et al. (2002). Alzheimer Dis Assoc Disord. 16: 109–115.PubMedCrossRefGoogle Scholar
  59. Revicki D, Hays RD, Cella D, Sloan J. (2008). J Clin Epidemiol. 61: 102–109.PubMedCrossRefGoogle Scholar
  60. Sands LP, Ferreira P, Stewart AL, Brod M, Yaffe K. (2004). Am. J Geriatr Psychiatry. 12: 272–280.PubMedGoogle Scholar
  61. Santaguida PS, Raina P, Booker L, Patterson C, Baldassarre F, Cowan D, Gauld M, Levine M, Unsal A. (2004). Evid.Rep.Technol.Assess (Summ.) 1–16.Google Scholar
  62. Schölzel-Dorenbos CJ, Ettema TP, Bos J, Boelens-van der Knoop E, Gerritsen DL, Hoogeveen F, de Lange J, Meihuizen L, Droes RM. (2007a). Int J Geriatr Psychiatry. 22: 511–519.PubMedCrossRefGoogle Scholar
  63. Schölzel-Dorenbos CJ, van der Steen MJ, Engels LK, Olde Rikkert MG. (2007b). Alzheimer Dis Assoc Disord. 21: 172–178.PubMedCrossRefGoogle Scholar
  64. Schölzel-Dorenbos CJM. (2000). Tijdschr Gerontol Geriatr. 31: 23–26.PubMedGoogle Scholar
  65. Schwam EM, Abu-Shakra S, del Valle M, Townsend RJ, Carrillo MC, Fillit H. (2007). Alzheimers Dement. 3: 143–151.PubMedCrossRefGoogle Scholar
  66. Selai CE, Trimble MR. (2001). Neuropsychol Rehab. 11: 219–243.CrossRefGoogle Scholar
  67. Smith SC, Lamping DL, Banerjee S, Harwood R, Foley B, Smith P, Cook JC, Murray J, Prince M, Levin E, Mann A, Knapp M. (2005). Health Technol Assess. 9: 1–iv.Google Scholar
  68. Sörensen S, Duberstein P, Gill D, Pinquart M. (2006). Lancet Neurol. 5: 961–973.PubMedCrossRefGoogle Scholar
  69. Sprangers MA, Schwartz CE. (1999). Soc Sci Med. 48: 1507–1515.PubMedCrossRefGoogle Scholar
  70. Terada S, Ishizu H, Fujisawa Y, Fujita D, Yokota O, Nakashima H, Haraguchi T, Ishihara T, Yamamoto S, Sasaki K, Nakashima Y, Kuroda S. (2002). Int J Geriatr Psychiatry. 17: 851–858.PubMedCrossRefGoogle Scholar
  71. The EuroQol Group. (1990). Health Policy. 16: 199–208.Google Scholar
  72. The WHOQOL Group. (1998). Psychol Med. 28: 551–558.Google Scholar
  73. Thomas P, Lalloue F, Preux PM, Hazif-Thomas C, Pariel S, Inscale R, Belmin J, Clement JP. (2006). Int J Geriatr Psychiatry. 21: 50–56.PubMedCrossRefGoogle Scholar
  74. Trial Designs and Outcomes in Dementia Therapeutic Research. (2006). London and New York: Taylor & Francis Group.Google Scholar
  75. Trigg R, Jones RW, Skevington SM. (2007). Age Ageing. 36: 663–669.PubMedCrossRefGoogle Scholar
  76. Visser MR, Oort FJ, Sprangers MA. (2005). Qual Life Res. 14: 629–639.PubMedCrossRefGoogle Scholar
  77. Volicer L, Hurley AC, Camberg L. (1999). Journal of Mental Health and Aging. 5: 83–94.Google Scholar
  78. Ware JE Jr., Kosinski M, Bayliss MS, McHorney CA, Rogers WH, Raczek A. (1995). Med Care. 33: AS264–AS279.PubMedCrossRefGoogle Scholar
  79. Ware JE Jr., Sherbourne CD. (1992). Med Care. 30: 473–483.PubMedCrossRefGoogle Scholar
  80. Wee HL, Machin D, Loke WC, Li SC, Cheung YB, Luo N, Feeny D, Fong KY, Thumboo J. (2007). Value Health. 10: 256–265.PubMedCrossRefGoogle Scholar
  81. Weiner MF, Martin-Cook K, Svetlik DA, Saine K, Foster B, Fontaine CS. (2000). J Am Med Dir Assoc. 1: 114–116.PubMedGoogle Scholar
  82. Weisscher N, de Haan RJ, Vermeulen M. (2007). BMC Med Res Methodol. 7: 24.PubMedCrossRefGoogle Scholar
  83. Wolfs CA, Dirksen CD, Kessels A, Willems DC, Verhey FR, Severens JL. (2007). Health Qual Life Outcomes. 5: 33.PubMedCrossRefGoogle Scholar
  84. Zmud R, Armenakis AA. (1978). Acad Manage Rev. 3: 661–669.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media LLC 2010

Authors and Affiliations

  • C. J. M. Schölzel-Dorenbos
    • 1
  • P. F. M. Krabbe
    • 1
  • M. G. M. Olde Rikkert
    • 1
  1. 1.Multidisciplinary Memory Clinic Slingeland Hospital/Alzheimer Centre NijmegenUniversity Medical Centre NijmegenNashvilleThe Netherlands

Personalised recommendations