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Quality of life in Alzheimer's disease: different factors associated with complementary ratings by patients and family carers

Published online by Cambridge University Press:  16 January 2012

Pascalle R. Bosboom ,
Helman Alfonso ,
Joanna Eaton  and
Osvaldo P. Almeida
Pascalle R. Bosboom*
Affiliation:
WA Centre for Health and Ageing, Centre for Medical Research, University of Western Australia, Perth, Australia School of Psychiatry and Clinical Neurosciences, University of Western Australia, Perth, Australia
Helman Alfonso
Affiliation:
WA Centre for Health and Ageing, Centre for Medical Research, University of Western Australia, Perth, Australia School of Psychiatry and Clinical Neurosciences, University of Western Australia, Perth, Australia
Joanna Eaton
Affiliation:
WA Centre for Health and Ageing, Centre for Medical Research, University of Western Australia, Perth, Australia School of Psychiatry and Clinical Neurosciences, University of Western Australia, Perth, Australia
Osvaldo P. Almeida
Affiliation:
WA Centre for Health and Ageing, Centre for Medical Research, University of Western Australia, Perth, Australia School of Psychiatry and Clinical Neurosciences, University of Western Australia, Perth, Australia Department of Psychiatry, Royal Perth Hospital, Perth, Australia
*
Correspondence should be addressed to: Pascalle R. Bosboom, MA, MAPS, WA Centre for Health and Ageing (M573), University of Western Australia, 35 Stirling Highway, Crawley, Perth, WA 6009, Australia. Phone: +61-8-9224 2855; Fax: +61-8-9224 8009. Email: [email protected].
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Abstract

Background: Quality of life (QoL) in dementia is a complex construct and factors that predict QoL ratings are unclear. We designed this study to determine: (1) the agreement in QoL ratings between community-dwelling patients with mild to moderate dementia and family carers; and (2) the factors associated with self-reported and two types of carer-reported QoL ratings: carer–carer perspective and carer–patient perspective.

Methods: A cross-sectional study was carried out of 80 community-dwelling patients with the diagnosis of probable Alzheimer's disease (AD) of mild or moderate severity according to NINCDS-ADRD criteria, and their 80 family carers. The QoL-AD was the primary outcome measure. We collected patients’ self-reported QoL ratings and two types of carer-reported QoL ratings: carer–patient and carer–carer perspectives. Explanatory variables included demographics, lifestyle, and clinical information from patients and carers, along with cognition, awareness, psychopathology, burden-of-care, and functionality in daily life. Bland-Altman plots guided the interpretation of agreement by visualizing the distribution of all the ratings. Univariate and multivariate regression analyses were conducted to examine the contribution of candidate explanatory factors.

Results: Patients and their carers showed good agreement in their QoL ratings, although the total scores of carers (regardless of perspective) were lower than the scores of patients. Depression, insight and use of anti-dementia agents were associated with QoL self-ratings, whereas cognitive function was directly associated and depression inversely associated with carers’ QoL ratings.

Conclusion: Mild to moderate community-dwelling AD patients and their carers (with different perspectives) agree within an acceptable range in QoL ratings but the ratings are driven by different factors, and consequently are not interchangeable but complementary. They provide valuable information when used separately, not in a composite score.

Keywords

Health Related Quality of Life (HR-QoL)Quality of Life-AD (QoL-AD)depressioncognitive functionbehavioral and psychological symptoms of dementiainsightcholinesterase inhibitorsmemantine
Type
Research Article
Information
International Psychogeriatrics , Volume 24 , Issue 5 , May 2012 , pp. 708 - 721
Copyright
Copyright © International Psychogeriatric Association 2012

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References

Albrecht, G. L. and Devlieger, P. J. (1999). The disability paradox: high quality of life against all odds. Social Science & Medicine, 48, 977–988.Google Scholar
American Psychiatric Association (1994). Diagnostic and Statistical Manual of Mental Disorders, 4th edn (DSM-IV). Washington, DC: American Psychiatric Association.Google Scholar
Banerjee, S. et al. (2006). Quality of life in dementia: more than just cognition. An analysis of associations with quality of life in dementia. Journal of Neurology, Neurosurgery and Psychiatry, 77 (2), 146–148.CrossRefGoogle ScholarPubMed
Banerjee, S. et al. (2009). What do we know about quality of life in dementia? A review of the emerging evidence on the predictive and explanatory value of disease specific measures of health related quality of life in people with dementia. International Journal of Geriatric Psychiatry, 24 (1), 15–24.CrossRefGoogle ScholarPubMed
Birks, J. (2006). Cholinesterase inhibitors for Alzheimer's disease. Cochrane Database of Systematic Reviews, 1, Art. No. CD005593. doi: 10.1002/14651858.CD005593.Google Scholar
Clare, L., Wilson, B. A., Carter, G., Breen, K., Berrios, G. E. and Hodges, J. R. (2002). Depression and anxiety in memory clinics attenders and their carers: implications for evaluating the effectiveness of cognitive rehabilitation interventions. International Journal of Geriatric Psychiatry, 17, 962–967.CrossRefGoogle ScholarPubMed
Conde-Sala, J. L., Garre-Olmo, J., Turro-Garriga, O., Lopez-Pousa, S. and Vilalta-Franch, J. (2009). Factors related to perceived quality of life in patients with Alzheimer's disease: the patient's perception compared with that of caregivers. International Journal of Geriatric Psychiatry, 24, 585–594.Google Scholar
Cummings, J. L. (1997). The Neuropsychiatric Inventory: assessing psychopathology in dementia patients. Neurology, 48 (Suppl. 6), S10–S16.CrossRefGoogle ScholarPubMed
Cummings, J. L., Mega, M., Gray, K. and Rosenberg-Thompson, S. (1994). The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. Neurology, 44, 2308–2314.CrossRefGoogle ScholarPubMed
Edelman, P., Fulton, B. R., Kuhn, D. and Chang, C. (2005). A comparison of three methods of measuring dementia-specific quality of life: perspectives of residents, staff and observers. The Gerontologist, 45, 27–36.CrossRefGoogle ScholarPubMed
Flint, A. J. and Rifat, S. L. (2002). Relationship between clinical variables and symptomatic anxiety in late-life depression. American Journal of Geriatric Psychiatry, 10, 292–296.CrossRefGoogle ScholarPubMed
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, 189–198.CrossRefGoogle ScholarPubMed
Fossey, J., Lee, L. and Ballard, C. (2002). Dementia Care Mapping as a research tool for measuring quality of life in care settings: psychometric properties. International Journal of Geriatric Psychiatry, 17, 1064–1070.CrossRefGoogle ScholarPubMed
Garre-Olmo, J., Lopez-Pousa, S., Vilalta-Franch, J., Turon-Astrada, A., Hernandez-Ferrandiz, M. and Lozano-Gallego, M. (2002). Carer's burden and depressive symptoms in patients with Alzheimer's disease: state after twelve months. Revue Neurologique, 34, 601–607.Google ScholarPubMed
Hoe, J., Hancock, G., Livingston, G. and Orrell, M. (2006). Quality of life of people with dementia in residential care homes. British Journal of Psychiatry, 188, 460–464.Google Scholar
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.CrossRefGoogle ScholarPubMed
Hurt, C. S. et al. (2010). Insight, cognition and quality of life in Alzheimer's disease. Journal of Neurology, Neurosurgery and Psychiatry, 81, 331–336.CrossRefGoogle ScholarPubMed
James, B. D., Xie, S. X. and Karlawish, J. H. T. (2005). How do patients with Alzheimer disease rate their overall quality of life? American Journal of Geriatric Psychiatry, 13, 484–490.CrossRefGoogle ScholarPubMed
Jorm, A. F. (1994). A short form of the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE): development and cross-validation. Psychological Medicine, 24, 145–153.CrossRefGoogle Scholar
Jorm, A. F. and Jacomb, P. A. (1989). The Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE): socio-demographic correlates, reliability, validity and some norms. Psychological Medicine, 19, 1015–1022.Google Scholar
Karlawish, J. H., Casarett, D., Klocinski, 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.Google Scholar
Katz, S. (1983). Assessing self-maintenance: activities of daily living, mobility, and instrumental activities of daily living. Journal of the American Geriatrics Society, 31, 721–727.CrossRefGoogle ScholarPubMed
Katz, S., Ford, A. B., Moskowitz, R. W., Jackson, B. A. and Jaffe, M. W. (1963). Studies of illness in the aged – the index of ADL: a standardized measure of biological and psychosocial function. Journal of the American Medical Association, 185, 914–919.CrossRefGoogle Scholar
Kaufer, D. I. et al. (1998). Assessing the impact of neuropsychiatric symptoms in Alzheimer's disease: the neuropsychiatric inventory caregiver distress scale. Journal of the American Geriatrics Society, 46, 210–215.CrossRefGoogle ScholarPubMed
Knafelc, R. et al. (2003). The combination of cognitive testing and an informant questionnaire in screening for dementia. Age and Ageing, 32, 541–547.Google Scholar
Lawton, M. P. and Brody, E. M. (1969). Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist, 9, 179–186.Google Scholar
Livingston, G., Cooper, C., Woods, J., Milne, A. and Katona, C. (2008). Successful ageing in adversity: the LASER-AD longitudinal study. Journal of Neurology, Neurosurgery and Psychiatry, 79, 641–645.CrossRefGoogle ScholarPubMed
Logsdon, R. G., Gibbons, L. E., McCurry, S. M. and Teri, L. (1999). Quality of life in Alzheimer's disease: patient and caregiver reports. Journal of Mental Health and Aging, 5, 21–32.Google Scholar
Logsdon, R. G. et al. (2002). Assessing quality of life in older adults with cognitive impairment. Psychosomatic Medicine, 64, 510–519.CrossRefGoogle ScholarPubMed
Mack, J. L. and Whitehouse, P. J. (2001). Quality of life in dementia – state of the art: report of the International Working Group for the Harmonization of Dementia Drug Guidelines and the Alzheimer's Society satellite meeting. Alzheimer Disease and Associated Disorders, 15, 69–71.CrossRefGoogle Scholar
McKhann, G., Drachman, D., Folstein, M., Katzman, R., Price, D. and Stadlan, E. M. (1984). 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, 34, 939–944.CrossRefGoogle ScholarPubMed
Migliorelli, R., Petracca, G., Tesón, A., Sabe, L., Leiguarda, R. and Starkstein, S. E. (1995). Neuropsychiatric and neuropsychological correlates of delusions in Alzheimer's disease. Psychological Medicine, 25, 505–513.CrossRefGoogle ScholarPubMed
Mykletun, A., Stordal, E. and Dahl, A. A. (2001). Hospital Anxiety and Depression (HAD) scale: factor structure, item analyses and internal consistency in a large population. British Journal of Psychiatry, 179, 540–544.CrossRefGoogle ScholarPubMed
Perneczky, R., Wagenpfeil, S., Komossa, K., Grimmer, T., Diehl, J. and Kurz, A. (2006). Mapping scores onto stages: mini-mental state examination and clinical dementia rating. American Journal of Geriatric Psychiatry, 14, 139–144.CrossRefGoogle ScholarPubMed
Pickard, A. S. and Knight, S. J. (2005). Proxy evaluation of health-related quality of life: a conceptual framework for understanding multiple proxy perspectives. Medical Care, 43, 493–499.CrossRefGoogle ScholarPubMed
Rabins, P. V. and Black, B. S. (2007). Measuring quality of life in dementia: purposes, goals, challenges and progress. International Psychogeriatrics, 19, 401–407.CrossRefGoogle ScholarPubMed
Ready, R. E. and Ott, B. R. (2003). Quality of life measures for dementia. Health and Quality of Life Outcomes, 23, 1–11.Google Scholar
Ready, R. E., Ott, B. and Grace, J. (2004). Patient versus informant perspectives of quality of life in mild cognitive impairment and Alzheimer's disease. International Journal of Geriatric Psychiatry, 19, 256–265.Google Scholar
Ready, R. E., Ott, B. R. and Grace, J. (2006). Insight and cognitive impairment: effects on quality-of-life reports from mild cognitive impairment and Alzheimer's disease patients. American Journal of Alzheimer's Disease & Other Dementias, 21, 242–248.CrossRefGoogle ScholarPubMed
Richmond, R. L., Law, J. and Kay-Lambkin, F. (2011). Physical, mental, and cognitive function in a convenience sample of centenarians in Australia. Journal of the American Geriatric Society, 59, 1080–1086.CrossRefGoogle Scholar
Roth, M., Huppert, F. A., Mountjoy, C. Q. and Tym, E. (1998). CAMCOG-R: The Cambridge Examination. Cambridge: Cambridge University Press.Google Scholar
Sands, L. P., Ferreira, P., Stewart, A. L., 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. BioMed Central Neurology, 10, 48.Google Scholar
Schwartz, C. E., Andresen, E. M., Nosek, M. A. and Krahn, G. L. (2007). Response shift theory: important implications for measuring quality of life in people with disability. Archives of Physical Medicine and Rehabilitation, 88, 529–536.CrossRefGoogle ScholarPubMed
Selwood, A., Thorgrimsen, L. and Orrell, M. (2005). Quality of life in dementia: a one-year follow up study. International Journal of Geriatric Psychiatry, 20, 232–237.CrossRefGoogle ScholarPubMed
Smith, S. C. et al. (2005a). What constitutes health-related quality of life in dementia? Development of a conceptual framework for people with dementia and their carers. International Journal of Geriatric Psychiatry, 20, 889–895.CrossRefGoogle ScholarPubMed
Smith, S. C. et al. (2005b). Measurement of health-related quality of life for people with dementia: development of a new instrument (DEMQOL) and an evaluation of current methodology. Health Technology Assessment, 9 (10), 1–93.CrossRefGoogle Scholar
Snow, A. L., Dani, R., Souchek, J., Sullivan, G., Ashton, C. and Kunik, M. (2005). Comorbid psychosocial symptoms and quality of life in patients with dementia. American Journal of Geriatric Psychiatry, 13, 393–401.CrossRefGoogle ScholarPubMed
Starkstein, S. E., Jorge, R., Mizrahi, R. and Robinson, R. G. (2006). A diagnostic formulation for anosognosia in Alzheimer's disease. Journal of Neurology, Neurosurgery and Psychiatry, 77, 719–725.CrossRefGoogle ScholarPubMed
Thorgrimsen, L., Selwood, A. and Spector, A. (2003). Whose quality of life is it anyway? The validity and reliability of the Quality of Life-Alzheimer's Disease (QoL-AD) scale. Alzheimer Disease and Associated Disorders, 17, 201–208.Google Scholar
Verhey, F. R., Rozendaal, N., Ponds, R. W. and Jolles, J. (1993). Dementia, awareness and depression. International Journal of Geriatric Psychiatry, 8, 851–856.Google Scholar
Vittengl, J. R., White, C. N., McGovern, R. J. and Morton, B. J. (2006). Comparative validity of seven scoring systems for the instrumental activities of daily living scale in rural elders. Aging and Mental Health, 10, 40–47.CrossRefGoogle ScholarPubMed
Vogel, A., Mortensen, E. L., Hasselbalch, S. G., Anderson, B. B. and Waldemar, G. (2006). Patient versus informant reported quality of life in the earliest phases of Alzheimer's disease. International Journal of Geriatric Psychiatry, 21, 1132–1138.CrossRefGoogle ScholarPubMed
Whitehouse, P. J., Patterson, M. B. and Sami, S. A. (2003). Quality of life in dementia: ten years later. Alzheimer Disease and Associated Disorders, 17, 199–200.CrossRefGoogle ScholarPubMed
Zanetti, O. et al. (1999). Insight in dementia: when does it occur? Evidence for a nonlinear relationship between insight and cognitive status. Journals of Gerontology: Series B: Psychological Sciences and Social Sciences, 54, P100–P106.Google Scholar
Zigmond, A. S. and Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67, 361–370.Google Scholar