Objective: The aim of this study was to identify the factors associated with differences between how Alzheimer’s disease (AD) patients and their caregivers rate the patient’s health-related quality of life (QoL). Methods: Cross-sectional, multicentre study. Patients were 65 years or more, suffering from mild to moderate AD, native French speakers, with a main caregiver. Interrater agreement of the QoL-AD was assessed using the intraclass coefficient. A generalised linear model was used to identify factors related to the difference in health-related QoL scores between patients and their caregivers. Results: The 122 patients of the study were 82 ± 6 years old and mainly women (69%). Independent factors related to the difference between patients and caregivers were: Mini Mental State Exam score (β = 0.32; 95% CI = 0.05–0.59); instrumental activities of daily living score (β = –0.61; 95% CI = –1.14 to –0.07); total Neuropsychiatric Inventory score (β = 0.10; 95% CI = 0.05–0.59), and Zarit’s burden score (β = 0.09; 95% CI = 0.01–0.17). Conclusion: Practitioners must take into account the trend towards underestimation when health-related QoL is rated by caregivers or proxies.

1.
Institut national de la santé et de la recherche médicale (INSERM): Maladie d’Alzheimer: enjeux scientifiques, médicaux et sociétaux. Paris, INSERM, 2007.
2.
World Alzheimer Report 2009. London, Alzheimer’s Disease International, 2009.
3.
Ferri CP, Prince M, Brayne C, Brodaty H, Fratiglioni L, Ganguli M: Global prevalence of dementia: a Delphi consensus study. Lancet 2005;336:2112–2117.
4.
Ready RE, Ott BR: Quality of life measures for dementia. Health Qual Life Outcomes 2003;1:11.
5.
Logsdon RG, Gibbons LE, McCurry SM, Teri L: Quality of life in Alzheimer’s disease: patient and caregivers reports. J Ment Health Aging 1999;5:21–32.
6.
Logsdon RG, Gibbons LE, McCurry SM, Teri L: Assessing quality of life in older adults with cognitive impairment. Psychosom Med 2002;64:510–519.
7.
Wolak A, Novella JL, Drame M, Guillemin F, Di Pollina L, Ankri J, Aquino JP, Morrone I, Blanchard F, Jolly D: Transcultural adaptation and psychometric validation of a French-language version of the QoL-AD. Aging Ment Health 2009;13:593–600.
8.
Spirduso WW, Asplund LA: Physical activity and cognitive function in the elderly. Quest 1995;47:395–410.
9.
Novella JL, Jochum C, Jolly D, Morrone I, Ankri J, Bureau F, Blanchard F: Agreement between patients’ and proxies’ reports of quality of life in Alzheimer’s disease. Qual Life Res 2001;10:443–452.
10.
Novella J-L, Jolly D, Ankri J Vitry F, Guillemin F, Canas F, Montani C, Dejace A, Metais P, Geoge M, Blanchard F: Analyse préliminaire des propriétés psychométriques du profil de santé de Duke sur un échantillon de 148 sujets atteints de démence. Ann Gérontol 1999;13:144–155.
11.
Kiyak HA, Teri L, Borson S: Physical and functional health assessment in normal aging and in Alzheimer’s disease: self-report versus family report. Gerontologist 1994;34:324–330.
12.
Coen RF, O’Boyle CA, Coakley D, Lawlor BA: Individual quality of life factors distinguishing low-burden and high-burden caregivers of dementia patients. Dement Geriatr Cogn Disord 2002;3:164–170.
13.
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;12:272–280.
14.
Burgener S, Twigg P: Relationship among caregiver factors and quality of life in care recipients with irreversible dementia. Alzheimer Dis Assoc Disord 2002;16:88–102.
15.
Novella JL, Boyer F, Jochum C, Jovenin N, Morrone I, Jolly D, Bakchine S, Blanchard F: Health status in patients with Alzheimer’s disease: an investigation of inter-rater agreement. Qual Life Res 2006;15:811–819.
16.
Boyer F, Novella JL, Morrone I, Jolly D, Blanchard F: Agreement between dementia patient report and proxy reports using the Nottingham Health Profile. Int J Geriatr Psychiatry 2004;19:1026–1034.
17.
American Psychiatric Association: Diagnostic and Statistical Manual Mental Disorders, ed 4. Washington, American Psychiatric Association, 1994.
18.
McKhann B, Drachman D, Folstein MF, Katzman R, Price D, Stadlan EM: Clinical diagnosis of Alzheimer’s disease: report of the NINCDS-ADRDA Work group under the auspices of Department of Health and Human Services Task Force on Alzheimer’s disease. Neurology 1984;34:939–944.
19.
Folstein MF, Folstein SE, McHugh PR: ‘Mini-mental state’. Practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 1975;12:189–198.
20.
Cummings JL, Mega M, Gray K, Rosenberg-Thompson S, Carusi DA, Gornbein J: The Neuropsychiatric Inventory: comprehensive assessment of psychiatry in dementia. Neurology 1994;44:2308–2314.
21.
Alexopoulos GS, Abrams RC, Young RC, Shamoian CA: Cornell scale for depression in dementia. Biol Psychiatry 1988;23:271–284.
22.
Barberger-Gateau P, Commenges D, Gagnon M, Letenneur L, Sauvel C, Dartigues JF: Instrumental activities of daily living as a screening tool for cognitive impairment and dementia in elderly community dwellers. J Am Geriatr Soc 1992;40:1129–1134.
23.
Charlson ME, Pompei P, Ales KL, MacKenzie CR: A new method of classifying prognostic comorbidity in longitudinal studies: development an validation. J Chronic Dis 1987;40:373–383.
24.
Zarit SH, Todd PA, Zarit JM: Subjective burden of husbands and wives as caregivers: a longitudinal study. Geronotologist 1986;26:260–266.
25.
Nunnally J: Psychometric Theory. New York, McGraw-Hill, 1978.
26.
Bland JM, Altman DG: Statistical methods for assessing agreement between two methods of clinical measurement. Lancet 1986;327:307–310.
27.
Osoba D, Pater J: Assessing quality of life in clinical trials. Ann Oncol 1993;4:520.
28.
Thorgrimsen L, Selwood A, Spector A, Royan L, de Madariaga Lopez M, Woods RT, Orrell M: 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;17:201–208.
29.
Galeone F, Pappalardo S, Chieffi S, Lavarone A, Carlomagno S: Anosognosia for memory deficit in amnestic mild cognitive impairment and Alzheimer’s disease. Int J Geriatr Psychiatry 2011;26:695–701.
30.
Vogel A, Mortensen EL, Hasselbalch SG, Andersen BB, Waldemar G: Patient versus informant reported quality of life in the earliest phases of Alzheimer’s disease. Int J Geriatr Psychiatry 2006;21:1132–1138.
31.
Fuh JL, Wang SJ: Assessing quality of life Taiwanese patients with Alzheimer’s disease. Int J Geriatr Psychiatry 2006;21:103–107.
32.
Matsui T, Nakaaki S, Murata Y, Sato J, Shinagawa Y, Tatsumi H, Furukawa TA: Determinants of the quality of life in Alzheimer’s disease patients as assessed by the Japanese version of the Quality of life-Alzheimer’s disease scale. Dement Geriatr Cogn Disord 2006;21:182–191.
33.
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;49:1066–1070.
34.
Tatsumi H, Nakaaki S, Torii K, Shinagawa Y, Watanabe N, Murata Y, Sato J, Mimura M, Furukawa TA: Neuropsychiatric symptoms predict change in quality of life of Alzheimer disease patients: a two-year follow-up study. Psychiatry Clin Neurosci 2009;63:374–384.
35.
Karttunen K, Karppi P, Hiltunen A, Vanhanen M, Välimäki T, Martikainen J, Valtonen H, Sivenius J, Soininen H, Hartikainen S, Suhonen J, Pirttilä T: Neuropsychiatric symptoms and quality of life in patients with very mild and mild Alzheimer’s disease. Int J Geriatr Psychiatry 2011;26:473–482.
36.
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;19:256–265.
37.
Hurt C, Bhattacharyya S, Burns A, Camus V, Liperoti R, Marriott A, Nobili F, Robert P, Tsolaki M, Vellas B, Verhey F, Byrne EJ: Patient and caregiver perspectives of quality of life in dementia. An investigation of the relationship to behavioural and psychological symptoms in dementia. Dement Geriatr Cogn Disord 2008;26:138–146.
38.
Hoe J, Katona C, Orrell M, Livingston G: Quality of life in dementia: care recipient and caregiver perceptions of quality of life in dementia: the LASER-AD study. Int J Geriatr Psychiatry 2007;22:1031–1036.
Copyright / Drug Dosage / Disclaimer
Copyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher.
Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug.
Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.
You do not currently have access to this content.