Skip to main content Accessibility help

Quality of life in dementia: the role of non-cognitive factors in the ratings of people with dementia and family caregivers

  • Maria Fernanda Barroso Sousa (a1), Raquel Luiza Santos (a1), Cynthia Arcoverde (a1), Pedro Simões (a2), Tatiana Belfort (a1), Isabel Adler (a1), Camila Leal (a1) and Marcia Cristina Nascimento Dourado (a1)...


Background: The validity of self-reported quality-of-life (QoL) assessments of people with dementia (PWD) is a critical issue. We designed this study to determine the non-cognitive factors that are associated with self-reported QoL and PWD QoL as rated by family caregivers.

Methods: Using a cross-sectional study, we assessed QoL of 41 people with mild Alzheimer's disease (AD). The individuals with AD and their family caregivers completed the Quality of Life in Alzheimer's Disease Scale (QoL-AD), the Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD), the Mini-Mental State Examination (MMSE), the Clinical Dementia Rating (CDR) scale, the Cornell Scale for Depression in Dementia (CSDD), the Pfeffer Functional Activities Questionnaire (FAQ), and the Zarit Burden Interview (ZBI). Univariate and multivariate regression analyses were conducted to examine the contribution of the various cofactors.

Results: We observed a significant difference (t = 3.292, p < 0.01, d = 0.727) in the QoL measures of PWD after comparing self-reported assessments with the assessments of family caregivers. Linear regression analysis demonstrated that awareness of disease was related to PWD QoL-AD scores. Both the education levels of family caregivers and the depressive symptoms in PWD were related to the family caregivers’ ratings of PWD QoL.

Conclusions: The difference between self-reported QoL and family caregivers’ ratings of QoL in people with mild dementia indicated that cognitive impairment was not the primary factor that accounted for the differences in the QoL assessments. Our findings suggested that non-cognitive factors, such as awareness of disease and depressive symptoms, played an important role in the differences between the self-reported AD QoL ratings and the caregivers’ AD QoL ratings. A major implication is that discrete measures such as cognition or level of function are likely to miss important factors that influence QoL.


Corresponding author

Correspondence should be addressed to: Maria Fernanda Barroso Sousa, PhD, Rua Doutor Catrambi 161/102, Alto da Boa Vista, Rio de Janeiro 20531-005, RJ, Brazil. Phone: +55 21 88490677. Email:


Hide All
Alexopoulos, G. S., Abrams, R. C., Young, R. C. and Shamoian, C. A. (1988). Cornell scale for depression in dementia. Biological Psychiatry, 23, 271284. doi:10.1016/0006-3223(88)90038-8.
American Psychiatric Association (2000). Diagnostic and Statistical Manual of Mental Disorders – Text Revision, 4th edn (DSM-IV-TR). Washington, DC: American Psychiatric Association.
Banerjee, 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 & Psychiatry, 77, 146148. doi:10.1136/jnnp.2005.072983.
Bertolucci, P. H., Brucki, S. M., Campacci, S. R. and Juliano, Y. (1994). O Mini-exame do estado mental em uma população geral: impacto da escolaridade. Arquivos de Neuropsiquiatria, 52, 17. doi:10.1590/S0004-282X1994000100001.
Berwig, M., Leicht, H. and Gertz, H. J. (2009). Critical evaluation of self-rated quality of life in mild cognitive impairment and Alzheimer's disease – further evidence for impact of anosognosia and global cognitive impairment. The Journal of Nutrition Health and Aging, 13, 226230. doi:10.1007/s12603-009-0063-4.
Bosboom, P. R, Alfonso, H., Eaton, J. and Almeida, O. P. (2012). Quality of life in Alzheimer's disease: different factors associated with complementary ratings by patients and family cares. International Psychogeriatrics, 16, 114. doi:10.1017/S1041610211002493.
Buckley, al. (2012). Predictors of quality of life ratings for persons with dementia simultaneously reported by patients and their caregivers: the Cache County (Utah) Study. International Psychogeriatrics, 24, 10941102. doi:10.1017/S1041610212000063.
Carthery-Goulart, M. al. (2007). Brazilian version of the Cornell depression scale in dementia. Arquivos de Neuropsiquiatria, 65, 912915. doi:10.1590/S0004-282X2007000500037.
Clare, L. (2004). Awareness in early-stage Alzheimer's disease: a review of methods and evidence. The British Psychological Society, 43, 177196. doi:10.1348/014466504323088042.
Conde-Sala, J. L., Garre-Olmo, J., Turró-Garriga, O., López-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, 585594. doi:10.1002/gps.2161.
Dourado, M. C. N., Laks, J., Rocha, M., Soares, C., Leibing, A. and Engelhardt, E. (2005). Awareness of disease in dementia: preliminary results in patients with mild and moderate Alzheimer's disease. Arquivos de Neuropsiquiatria, 63, 114118. doi:10.1590/S0004-282X2005000100021.
Dourado, M. C. N., Marinho, V., Soares, C., Engelhardt, E. and Laks, J. (2007). Awareness of disease in Alzheimer's dementia: description of a mild to moderate sample of patient and caregiver dyads in Brazil. International Psychogeriatrics, 19, 733744. doi:10.1017/S1041610207005492.
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 Psychiatry Research, 12, 189198. doi:1016/0022-3956(75)90026-6.
Hurt, C. al. (2010). Insight, cognition and quality of life in Alzheimer's disease. Journal of Neurology, Psychiatry and Neurosurgery, 81, 331336. doi:10.1136/jnnp.2009.184598.
Karttunen, al. (2011). Neuropsychiatric symptoms and quality of life in patients with very mild and mild Alzheimer's disease. International Journal of Geriatric Psychiatry, 26, 473482. doi:10.1002/gps.2550.
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, 2132.
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. doi:0033-3174/02/6403-0510.
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 the Department of Health and Human Services Task Force on Alzheimer's disease. Neurology, 34, 939944. doi:10.1212/WNL.34.7.939.
Moreira, I. F. H., Lourenço, R. A., Soares, C., Engelhardt, E. and Laks, J. (2009). Cambridge cognitive examination: performance of healthy elderly Brazilians with low education levels. Caderno de Saúde Pública, 25, 17741780. doi:10.1590/S0102-311X2009000800013.
Morris, J. (1993). The CDR: current version and scoring rules. Neurology, 43, 24122414. doi:10.1212/WNL.43.11.2412-a.
Moyle, W. and O'Dwyer, S. (2012). Quality of life in people living with dementia in nursing homes. Current Opinion in Psychiatry, 25, 480484. doi:10.1097/YCO.0b013e32835a1ccf.
Novelli, M. M. P. C., Nitrini, R. and Caramelli, P. (2010). Validation of the Brazilian version of the quality of life scale for patients with Alzheimer disease and their caregivers (QOL-AD). Aging and Mental Health, 14, 624631. doi:10.1080/13607861003588840.
Pfeffer, R. I., Kurosaki, T. T., Harrah, C. H., Chance, J. M. and Filos, S. (1982). Measurement of functional activities in older adults in the community. The Journals of Gerontology, 37, 323329. doi:10.1093/geronj/37.3.323.
Ready, R., Ott, B. R. 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, 256265. doi:10.1002/gps.1075.
Scazufca, M. (2002). Brazilian version of the Burden Interview scale for the assessment of burden of care in carers of people with mental illnesses. Revista Brasileira de Psiquiatria, 24, 1217. doi:10.1590/S1516-44462002000100006.
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, 18. doi:10.1186/1471-2377-10-48.
Sousa, M. F. B., Santos, R. L., Arcoverde, C., Dourado, M. C. N. and Laks, J. (2011). Awareness of disease in Alzheimer's disease: preliminary results of a longitudinal study. Revista de Psiquiatria Clínica, 38, 5760. doi:10.1590/S0101-60832011000200003.
Starkstein, S. E., Jorge, R., Mizrahi, R. and Robinson, R. G. (2005). The construct of minor and major depression in Alzheimer's disease. The American Journal of Psychiatry, 162, 20862093. doi:10.1176/appi.ajp.162.11.2086.
Vogel, A., Mortensen, E. L., Hasselbalch, S. G., Andersen, 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, 11321138. doi:10.1002/gps.1619.
Zarit, S. H., Reever, K. E. and Bach-Peterson, J. (1980). Relatives of the impaired elderly: correlates of feeling of burden. The Gerontologist, 20, 649655. doi:10.1093/geront/20.6.649.


Quality of life in dementia: the role of non-cognitive factors in the ratings of people with dementia and family caregivers

  • Maria Fernanda Barroso Sousa (a1), Raquel Luiza Santos (a1), Cynthia Arcoverde (a1), Pedro Simões (a2), Tatiana Belfort (a1), Isabel Adler (a1), Camila Leal (a1) and Marcia Cristina Nascimento Dourado (a1)...


Altmetric attention score

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