Hostname: page-component-8448b6f56d-jr42d Total loading time: 0 Render date: 2024-04-23T16:52:34.019Z Has data issue: false hasContentIssue false

How do Chinese patients with dementia rate their own quality of life?

Published online by Cambridge University Press:  17 September 2007

Philip Lin Kiat Yap*
Affiliation:
Department of Geriatric Medicine, Alexandra Hospital, Singapore
Jenny Yen Ni Goh
Affiliation:
Department of Medical Social Service, Alexandra Hospital, Singapore
Linda Mary Henderson
Affiliation:
Department of Nursing, Alexandra Hospital, Singapore
Pei Min Han
Affiliation:
Department of Occupational Therapy, Nanyang Polytechnic School of Health Sciences, Singapore
Kui Shin Ong
Affiliation:
Department of Occupational Therapy, Nanyang Polytechnic School of Health Sciences, Singapore
Serene Si Ling Kwek
Affiliation:
Department of Occupational Therapy, Nanyang Polytechnic School of Health Sciences, Singapore
Elizabeth Yi Hui Ong
Affiliation:
Department of Occupational Therapy, Nanyang Polytechnic School of Health Sciences, Singapore
Donus Pui Kwan Loh
Affiliation:
Department of Behavioral Science, Nanyang Polytechnic School of Health Sciences, Singapore
*
Correspondence should be addressed to: Dr. Yap Lin Kiat Philip, Consultant Geriatrician, Department of Geriatric Medicine, Alexandra Hospital, Singapore159964. Phone: +65 64722000; Fax: 65 63793996. Email: philip_yap@alexhosp.com.sg.

Abstract

Objective: This study examines the psychometric properties and clinical experience in using the Mandarin translation of the Quality of Life–Alzheimer's Disease (QoL-AD) instrument in Chinese patients with dementia in Singapore.

Methods: A Mandarin version of QoL-AD was established following standard guidelines for transcultural adaptation of QoL measures. The instrument was administered to 70 patient-carer dyads; patients with severe dementia (MMSE < 10) were excluded. Reliability by internal consistency and test-retest, and construct validity by correlating the known domains of QoL-AD with validity measures for the respective domains, was performed. Guidelines for Rating Awareness Deficits (GRAD) measured patients' insight into their deficits.

Results: Three patients were not able to complete the QoL-AD. Internal consistency (Cronbach's α) was high for both patient (0.9) and carer (0.8) QoL-AD ratings, as was test-retest reliability, intraclass correlation coefficient (ICC) 0.7 and 0.8 respectively. Correlation of QoL-AD with domain measures was moderate for carer ratings (0.21 < r < 0.51) and poor for patient (−0.17 < r < 0.13). Patient self-rated QoL correlated poorly with, and was significantly higher than, carer-rated QoL. Correlation between patient and carer QoL-AD was stronger in patients with better insight (GRAD 3–4).

Conclusions: The results suggest that while the Mandarin version of QoL-AD can be used reliably in our population, patients' self perceived QoL can be different from carer ratings and from objective QoL measures. The disparity can be attributed to patients' poor insight, denial, fear of “losing face,” normalization and accommodation of standards with aging. The patients' lack of education and seclusion from Western cultural exposure are also contributory.

Type
Research Article
Copyright
Copyright © International Psychogeriatric Association 2007

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Albert, S. M. et al. (1999). Proxy-reported quality of life in Alzheimer's patients: comparison of clinical and population-based samples. Journal of Mental Health and Aging, 5, 4958.Google Scholar
Albert, S. M. et al. (2001). Longitudinal study of quality of life in people with advanced Alzheimer's disease. American Journal of Geriatric Psychiatry, 9, 160168.CrossRefGoogle ScholarPubMed
American Psychiatric Association (1987). Diagnostic and Statistical Manual of Mental Disorders, 3rd edn. Washington, DC: American Psychiatric Association.Google Scholar
Baro, F. (2002). Psychosocial interventions for dementia: a review. In Maj, M. and Sartorius, N. (eds.), Dementia, 2nd edn (pp. 279340). Singapore: John Wiley & Sons (Asia).CrossRefGoogle Scholar
Beaton, D. E. et al. (2000). Guidelines for the process of cross-cultural adaptation of self-report measures. Spine, 25, 31863191.CrossRefGoogle ScholarPubMed
Bond, J. and Corner, L. (2004). Quality of Life and Older People. Buckingham: Open University Press/McGraw Hill Medical.Google Scholar
Brod, M. et al. (1999). Conceptualisation and measurement of quality of life in dementia: the dementia quality of life instrument (DQoL). The Gerontologist, 39, 2535.CrossRefGoogle ScholarPubMed
Chan, T. S. F., Lam, L. C. W. and Chiu, H. F. K. (2005). Validation of the Chinese version of the Zarit Burden Interview. Hong Kong Journal of Psychiatry, 15, 913.Google Scholar
Clare, L. (2002). We'll fight as long as we can: coping with the onset of Alzheimer's disease. Aging and Mental Health, 6, 139148.CrossRefGoogle Scholar
Dröes, R-M. et al. (2006). Quality of life in dementia in perspective. Dementia, 5, 533558.CrossRefGoogle Scholar
Ferri, C. P. et al. (2005). Global prevalence of dementia: a Delphi consensus study. Lancet, 366, 21122117.CrossRefGoogle ScholarPubMed
Fletcher, A. E., Dickinson, E. J., Philip, I. (1992). Review: audit measures: quality of life instruments for everyday use with elderly patients. Age and Aging, 21, 142150.CrossRefGoogle ScholarPubMed
Folkman, S. and Stein, N. L. (1996). A goal-process approach to analyzing narrative memories for AIDS-related stressful events. In Stein, N. et al. (eds.), Memory for Everyday and Emotional Events (pp. 113137). Hillsdale, NJ: Lawrence Erlbaum.Google Scholar
Folstein, M. F., Folstein, S. E. and McHugh, P. R. (1975). “Mini-mental state”: a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189198.CrossRefGoogle ScholarPubMed
Fuh, J. L. et al. (1999). Revised memory and behavioral problems checklist in Taiwanese patients with Alzheimer's disease. International Psychogeriatrics, 11, 181189.CrossRefGoogle ScholarPubMed
Gao, G., Kao, K. and Ting-Toomey, S. (1998). Communicating Effectively with the Chinese (pp. 5360). Thousand Oaks, CA: Sage Publications.CrossRefGoogle Scholar
Goldberg, D. P. et al. (1997). The validity of two versions of the GHQ in the WHO study of mental illness in general health care. Psychological Medicine, 27, 191197.CrossRefGoogle ScholarPubMed
James, B. D., Xie, S. X. and Karlawish, J. H. T. (2005). How do patients with Alzheimer diseases rate their overall quality of life? American Journal of Geriatric Psychiatry, 13, 484–280.CrossRefGoogle ScholarPubMed
Lawton, M. P. (1994). Quality of life in Alzheimer disease. Alzheimer Disease and Associated Disorders, 8, 138150.CrossRefGoogle ScholarPubMed
Lawton, M. P. (1997). Assessing quality of life in Alzheimer disease research. Alzheimer Disease and Associated Disorders, 11, 9199.Google ScholarPubMed
Lawton, M. P. and Brody, E. M. (1969). Assessment of older people: self-maintaining and instrumental activities of daily living. The Gerontologist, 9, 179186.CrossRefGoogle ScholarPubMed
Lawton, M. P., Van Haitsma, K. S. and Klapper, J. A. (1996). Observed affect in nursing home residents. Journal of Gerontology: Psychological Sciences, 51B, P3P14.CrossRefGoogle Scholar
Logsdon, R. G. et al. (2002). Assessing quality of life in older adults with cognitive impairment. Psychomatic Medicine, 64, 510519.CrossRefGoogle ScholarPubMed
Mozley, C. G. et al. (1999). “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. International Journal of Geriatric Psychiatry, 14, 776783.3.0.CO;2-C>CrossRefGoogle ScholarPubMed
Ott, B. R. et al. (1996). Impaired awareness of deficits in Alzheimer's disease. Alzheimer Disease and Associated Disorders, 10, 6876.CrossRefGoogle Scholar
Rabins, P. V. (2000). Measuring quality of life in persons with dementia. International Psychogeriatrics, 12 (Suppl.), 4749.CrossRefGoogle Scholar
Rabins, P. V., Kasper, J. D., Kleinman, L., Black, B. S. and Patrick, D. L. (1999). Concepts and methods in the development of the ADRQL: an instrument for assessing quality of life in persons with Alzheimer's disease. Journal of Mental Health and Aging, 5, 3348.Google Scholar
Ready, R. E. and Ott, B. R. (2003). Quality of Life measures for dementia. Health and Quality of Life Outcomes, 1, 11. Available online at http://www.hqlo.com/content/1/1/11.CrossRefGoogle ScholarPubMed
Russell, C. (1996). Passion and heretics: meaning in life and quality of life of persons with dementia. Journal of the American Geriatrics Society, 44, 14001401.CrossRefGoogle ScholarPubMed
Sands, L. P. et al. (2004). What explains differences between patients' and their caregivers' ratings of patients' quality of life? American Journal of Geriatric Psychiatry, 12, 272280.CrossRefGoogle ScholarPubMed
Schulz, R. and Decker, S. (1985). Long-term adjustment to physical disability: the role of social support, perceived control and self-blame. Journal of Personality and Social Psychology, 48, 11621172.CrossRefGoogle ScholarPubMed
Selai, C. and Trimble, M. R. (1999). Assessing quality of life in dementia. Aging and Mental Health, 3, 101111.CrossRefGoogle Scholar
Stewart, A. L. et al. (1988). The MOS 36-Item Short-Form Health Survey: reliability and validity in a patient population. Medical Care, 26, 724732.CrossRefGoogle Scholar
Tay, M. W. J. (1984). Trends in Language, Literacy and Education in Singapore. Census Monograph no. 2. Singapore: Department of Statistics.Google Scholar
Teri, L. et al. (1992). Assessment of behavioral problems in dementia: the Revised Memory and Behavioral Problems Checklist. Psychology of Aging, 7, 622631.CrossRefGoogle ScholarPubMed
Verhey, F. R. J. et al. (1993). Depression, insight and personality changes in Alzheimer's disease and vascular dementia. Journal of Geriatric Psychiatry and Neurology, 8, 2327.Google Scholar
Verhey, F. R. J. et al. (1995). Dementia, depression and awareness. International Journal of Geriatric Psychiatry, 8, 851856.CrossRefGoogle Scholar
Walker, M. D., Salek, S. and Bayer, A. J. (1998). A review of quality of life in Alzheimer's disease. Pharmacoeconomics, 14, 499530.CrossRefGoogle ScholarPubMed
Whitehouse, P. J. and Rabins, P. V. (1992). Quality of life and dementia. Alzheimer Disease and Associated Disorders, 6, 135137.CrossRefGoogle ScholarPubMed
Whitehouse, P. J. et al. (1997). Quality of life assessment in dementia drug development. Alzheimer Disease and Associated Disorders, 11, 5660.Google ScholarPubMed
WHO-QOL (1995). World Health Organization Quality of Life-100. Report No. 100. Geneva: Division of Mental Health, World Health Organization.Google Scholar
Zarit, S. H., Reever, K. E. and Bach-Peterson, J. (1980). Relatives of the impaired elderly: correlates of feelings of burden. The Gerontologist, 20, 649655.CrossRefGoogle ScholarPubMed