Skip to main content Accessibility help

Predictors of quality of life ratings for persons with dementia simultaneously reported by patients and their caregivers: the Cache County (Utah) Study

  • Trevor Buckley (a1), Elizabeth B. Fauth (a1) (a2), Ann Morrison (a3), JoAnn Tschanz (a1) (a4), Peter V. Rabins (a3), Kathleen W. Piercy (a1) (a2), Maria Norton (a1) (a2) (a4) and Constantine G. Lyketsos (a3)...


Background: Quality of life (QOL) is frequently assessed in persons with dementia (PWD) through self- and/or proxy-report. Determinants of QOL ratings are multidimensional and may differ between patients and caregiver proxies. This study compared self- and proxy-reported QOL ratings in a population-based study of PWD and their caregivers, and examined the extent to which discrepancies in reports were associated with characteristics of the PWD.

Methods: The sample consisted of 246 patient/caregiver dyads from the initial visit of the Cache County Dementia Progression Study, with both members of the dyad rating PWD QOL. PWD age, gender, cognitive impairment (Mini-Mental State Examination), neuropsychiatric symptoms (Neuropsychiatric Inventory; NPI), dementia severity (Clinical Dementia Rating), medical comorbidities (General Medical Health Rating), and functional impairment (Dementia Severity Rating Scale) were examined as correlates of self- and proxy-reported QOL ratings and the differences between the QOL reports.

Results: Self- and proxy-reported PWD QOL ratings were only modestly correlated. Medical comorbidity was associated with self-report whereas NPI was associated with proxy-report. Dementia severity was associated with discrepancies in self- and proxy-report, with worse patient cognition associated with poorer proxy-reported QOL ratings.

Conclusions: PWD self- and proxy-reported QOL ratings are associated with different variables. Discrepancies between PWD and caregiver perceptions of PWD QOL should be recognized, particularly in cases of more severe dementia.


Corresponding author

Correspondence should be addressed to: Constantine G. Lyketsos, MD, MHS, Department of Psychiatry, Johns Hopkins Bayview and School of Medicine, Johns Hopkins University, 5300 Alpha Commons Drive, Baltimore, Maryland 21224, USA. Phone: 410-550-0062; Fax: 410-550-1407. Email:


Hide All
Albert, M. et al. (1996). Quality of life in patients with Alzheimer's disease as reported by patient proxies. Journal of the American Geriatrics Society, 44, 13421347.
Black, B. S. and Rabins, P. V. (2005). Quality of life in dementia: conceptual and practical issues. In Burns, A., Ames, D. and O'Brien, J. (eds.), Dementia, 3rd edn. (pp. 215228). London: Edward Arnold Publishers.
Breitner, J. et al. (1999). APOE-epsilon4 count predicts age when prevalence of Alzheimer's disease increases, then declines: the Cache County Study. Neurology, 55, 161162.
Clark, C. M. and Ewbank, D. C. (1996). Performance of the dementia severity rating scale: a caregiver questionnaire for rating severity of Alzheimer's disease. Alzheimer's Disease and Associated Disorders, 10, 3139.
Cordner, Z., Blass, D. M., Rabins, P. V. and Black, B. S. (2010). Quality of life in nursing home residents with advanced dementia. Journal of the American Geriatrics Society, 58, 23942400. doi:10.1111/j.1532-5415.2010.03170.x.
Cummings, J., Mega, M., Gray, K., Rosenberg-Thompson, S., Carusi, D. and Gornbein, J. (1994). The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. Neurology, 44, 23082314.
de Boer, A. M. et al. (2004). Is a single-item visual analogue scale as valid, reliable and responsive as multi-item scales in measuring quality of life? Quality of Life Research, 13, 311320.
Esteban y Pena, M., Jimenez Garcia, R. and Diaz Olalla, J. M. (2009). Impact of the most frequent chronic health conditions on the quality of life among people aged >15 years in Madrid. European Journal of Public Health, 47, 487491.
Folstein, M., Folstein, S. and McHugh, P. (1975). “Mini-mental state”: a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189198.
Helvik, A., Engedal, K., Krokstad, S. and Selbæk, G. (2011). A comparison of life satisfaction in elderly medical inpatients and the elderly in a population-based study: Nord-Trøndelag Health Study 3. Scandinavian Journal of Public Health, 39, 337344. doi:10.1177/1403494811405093.
Heyworth, T. M., Hazell, M. L., Linehan, M. L. and Frank, T. L. (2009). How do common chronic conditions affect health-related quality of life? British Journal of General Practice, 59, 353358. doi:10.3399/bjgp09X453990.
Hoe, J., Katona, C., Orrell, M. and Livingston, G. (2007). Quality of life in dementia: care recipient and caregiver perceptions of quality of life in dementia. The LASER-AD study. International Journal of Geriatric Psychiatry, 22, 10311036. doi:10.1002/gps.1786.
Hurt, C. et al. (2008). Patient and caregiver perspectives of quality of life in dementia. Dementia and Geriatric Cognitive Disorders, 26, 138146. doi:10.1159/000149584.
Karlawish, J. H., Casarett, D., Klocinshi, J. and Clark, C. M. (2001). The relationship between caregivers’ global ratings of Alzheimer's disease patients’ quality of life, disease severity, and the caregiving experience. Journal of the American Geriatrics Society, 49, 10661070. doi:10.1046/j.1532-5415.2001.49210.x.
Katsuno, T. (2005). Dementia from the inside: how people with early-stage dementia evaluate their quality of life. Ageing & Society, 25, 197214. doi:10.1017/S0144686X0400279X.
Lawton, M. P. (1991). A multidimensional view of quality of life in frail elders: the concept and measurement of quality of life in the frail elderly. In Birren, J. E., Lubben, J. E., Rowe, J. C. and Deutchman, D. E. (eds.), The Concept and Measurement of Quality of Life in the Frail Elderly (pp. 327). San Diego, CA: Academic Press.
Logsdon, R. G., Gibbons, L. E., McCurry, S. M. and Teri, L. (2002). Assessing quality of life in older adults with cognitive impairment. Psychosomatic Medicine, 64, 510519.
Lucas Carrasco, R. R. and March, J. J. (2010). Overall quality of life among Spanish patients with mild cognitive impairment and dementia. European Psychiatry, 25, 572572. doi:10.1016/S0924-9338(10)70567-8.
Lyketsos, C. G. et al. (1999). The General Medical Health Rating: a bedside global rating of medical comorbidity in patients with dementia. Journal of the American Geriatrics Society, 6, 308309.
Morris, J. C. (1997). Clinical Dementia Rating: a reliable and valid diagnostic and staging measure for dementia of the Alzheimer type. International Psychogeriatrics, 9, 173176. doi:10.1017/S1041610297004870.
Mougias, A. A., Politis, A., Lyketsos, C. G. and Mavreas, V. G. (2011). Quality of life in dementia patients in Athens, Greece: predictive factors and the role of caregiver-related factors. International Psychogeriatrics, 23, 395403. doi:10.1017/S1041610210001262.
Norton, M. C. et al. (2006). Gender differences in the association between religious involvement and depression: the Cache County (Utah) Study. Journals of Gerontology B: Psychological Sciences, 61, 129136.
Novella, J. L. et al. (2001). Agreement between patients’ and proxies’ reports of quality of life in Alzheimer's disease. Quality of Life Research, 10, 443452. doi:10.1023/A:1012522013817.
Pavlik, V. N., Doody, R. S., Massman, P. J. and Chan, W. (2006). Influence of premorbid IQ and education on progression of Alzheimer's disease. Dementia and Geriatric Cognitive Disorders, 22, 367377. doi:10.1159/000095640.
Sands, L., Ferreira, P., Stewart, A., Brod, M. and Yaffe, K. (2004). What explains differences between dementia patients’ and their caregivers’ ratings of patients’ quality of life? American Journal of Geriatric Psychiatry, 12, 272280.
Schiffczyk, C., Romero, B., Jonas, C., Lahmeyer, C., Müller, F. and Riepe, M. W. (2010). Generic quality of life assessment in dementia patients: a prospective cohort study. BMC Neurology, 10, 18. doi:10.1186/1471-2377-10-48.
The WHOQOL Group (1995). The World Health Organization Quality of Life Assessment (WHOQOL): Position paper from the World Health Organization. Social Science & Medicine, 10, 14031409.
Tschanz, J. T. et al. (2011). Progression of cognitive, functional, and neuropsychiatric symptom domains in a population cohort with Alzheimer dementia: the Cache County Dementia Progression Study. American Journal of Geriatric Psychiatry, 19, 532542. doi:10.1097/JGP.0b013e3181faec23.
Weyerer, S. and Schäufele, M. (2003). The assessment of quality of life in dementia. International Psychogeriatrics, 15, 213218. doi:10.1017/S1041610203009475.
Recommend this journal

Email your librarian or administrator to recommend adding this journal to your organisation's collection.

International Psychogeriatrics
  • ISSN: 1041-6102
  • EISSN: 1741-203X
  • URL: /core/journals/international-psychogeriatrics
Please enter your name
Please enter a valid email address
Who would you like to send this to? *



Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed