Hostname: page-component-78c5997874-lj6df Total loading time: 0 Render date: 2024-11-17T00:20:09.806Z Has data issue: false hasContentIssue false
  • English
  • Français

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

Published online by Cambridge University Press:  14 March 2012

Trevor Buckley ,
Elizabeth B. Fauth ,
Ann Morrison ,
JoAnn Tschanz ,
Peter V. Rabins ,
Kathleen W. Piercy ,
Maria Norton  and
Constantine G. Lyketsos
Trevor Buckley
Affiliation:
Center for Epidemiologic Studies, Utah State University, Logan, Utah, USA
Elizabeth B. Fauth
Affiliation:
Center for Epidemiologic Studies, Utah State University, Logan, Utah, USA Department of Family, Consumer and Human Development, Utah State University, Logan, Utah, USA
Ann Morrison
Affiliation:
Department of Psychiatry, Johns Hopkins Bayview and School of Medicine, Johns Hopkins University, Baltimore, Maryland, USA
JoAnn Tschanz
Affiliation:
Center for Epidemiologic Studies, Utah State University, Logan, Utah, USA Department of Psychology, Utah State University, Logan, Utah, USA
Peter V. Rabins
Affiliation:
Department of Psychiatry, Johns Hopkins Bayview and School of Medicine, Johns Hopkins University, Baltimore, Maryland, USA
Kathleen W. Piercy
Affiliation:
Center for Epidemiologic Studies, Utah State University, Logan, Utah, USA Department of Family, Consumer and Human Development, Utah State University, Logan, Utah, USA
Maria Norton
Affiliation:
Center for Epidemiologic Studies, Utah State University, Logan, Utah, USA Department of Family, Consumer and Human Development, Utah State University, Logan, Utah, USA Department of Psychology, Utah State University, Logan, Utah, USA
Constantine G. Lyketsos*
Affiliation:
Department of Psychiatry, Johns Hopkins Bayview and School of Medicine, Johns Hopkins University, Baltimore, Maryland, USA
*
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: [email protected].
Get access Rights & Permissions [Opens in a new window]

Abstract

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.

Keywords

caregiverdementiaproxy-reportquality of lifeself-report
Type
Research Article
Information
International Psychogeriatrics , Volume 24 , Issue 7 , July 2012 , pp. 1094 - 1102
Copyright
Copyright © International Psychogeriatric Association 2012

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, 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, 1342–1347.CrossRefGoogle ScholarPubMed
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. 215–228). London: Edward Arnold Publishers.Google ScholarPubMed
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, 161–162.Google Scholar
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, 31–39.Google Scholar
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, 2394–2400. doi:10.1111/j.1532-5415.2010.03170.x.CrossRefGoogle ScholarPubMed
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, 2308–2314.CrossRefGoogle ScholarPubMed
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, 311–320.CrossRefGoogle ScholarPubMed
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, 487–491.Google Scholar
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, 189–198.CrossRefGoogle ScholarPubMed
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, 337–344. doi:10.1177/1403494811405093.CrossRefGoogle Scholar
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, 353–358. doi:10.3399/bjgp09X453990.CrossRefGoogle ScholarPubMed
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, 1031–1036. doi:10.1002/gps.1786.CrossRefGoogle ScholarPubMed
Hurt, C. et al. (2008). Patient and caregiver perspectives of quality of life in dementia. Dementia and Geriatric Cognitive Disorders, 26, 138–146. doi:10.1159/000149584.CrossRefGoogle ScholarPubMed
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, 1066–1070. doi:10.1046/j.1532-5415.2001.49210.x.CrossRefGoogle ScholarPubMed
Katsuno, T. (2005). Dementia from the inside: how people with early-stage dementia evaluate their quality of life. Ageing & Society, 25, 197–214. doi:10.1017/S0144686X0400279X.CrossRefGoogle Scholar
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. 3–27). San Diego, CA: Academic Press.CrossRefGoogle Scholar
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, 510–519.CrossRefGoogle ScholarPubMed
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, 572–572. doi:10.1016/S0924-9338(10)70567-8.CrossRefGoogle Scholar
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, 308–309.Google Scholar
Morris, J. C. (1997). Clinical Dementia Rating: a reliable and valid diagnostic and staging measure for dementia of the Alzheimer type. International Psychogeriatrics, 9, 173–176. doi:10.1017/S1041610297004870.CrossRefGoogle ScholarPubMed
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, 395–403. doi:10.1017/S1041610210001262.CrossRefGoogle ScholarPubMed
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, 129–136.CrossRefGoogle ScholarPubMed
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, 443–452. doi:10.1023/A:1012522013817.CrossRefGoogle ScholarPubMed
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, 367–377. doi:10.1159/000095640.CrossRefGoogle ScholarPubMed
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, 272–280.CrossRefGoogle ScholarPubMed
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, 1–8. doi:10.1186/1471-2377-10-48.CrossRefGoogle ScholarPubMed
The WHOQOL Group (1995). The World Health Organization Quality of Life Assessment (WHOQOL): Position paper from the World Health Organization. Social Science & Medicine, 10, 1403–1409.Google Scholar
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, 532–542. doi:10.1097/JGP.0b013e3181faec23.CrossRefGoogle Scholar
Weyerer, S. and Schäufele, M. (2003). The assessment of quality of life in dementia. International Psychogeriatrics, 15, 213–218. doi:10.1017/S1041610203009475.CrossRefGoogle ScholarPubMed