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Assessing quality of life of nursing home residents with dementia: feasibility and limitations in patients with severe cognitive impairment

Published online by Cambridge University Press:  10 June 2013

María Crespo ,
Carlos Hornillos  and
M. Mar Gómez
María Crespo*
Affiliation:
Clinical Psychology Department, Complutense University, Madrid, Spain
Carlos Hornillos
Affiliation:
Clinical Psychology Department, Complutense University, Madrid, Spain
M. Mar Gómez
Affiliation:
Clinical Psychology Department, Complutense University, Madrid, Spain
*
Correspondence should be addressed to: María Crespo, PhD, Facultad de Psicología, Universidad Complutense de Madrid, Campus de Somosaguas s/n, 28223, Madrid, Spain. Phone: +34-913943122; Fax: +34 91-394-31-89. Email: mcrespo@psi.ucm.es.
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Abstract

Background:

The Quality of Life-Alzheimer's Disease Scale (QOL-AD) is a reliable and valid self-report measure for assessing quality of life (QoL) in people with dementia in long-term care settings, but little is known yet about the number of patients with severe cognitive impairment who are able to complete this measure, and the characteristics of those unable to do so. The aim of the study is to advance knowledge of these issues.

Methods:

Data on residents with dementia were collected from 11 nursing homes. The QOL-AD residential version was directly applied to residents with dementia diagnosis and Mini-Mental State Examination scores under 27, randomly selected in each center. Residents’ QoL was further assessed from the perspective of some close relative and some staff member. Altogether, 102 data sets from residents, 184 from relatives, and 197 from staff members were collected. An analysis of the characteristics of completers versus non-completers regarding levels of cognitive impairment was carried out.

Results:

People with dementia in long-term care are able to report their QoL. The QOL-AD completion rate decreases as the cognitive impairment level increases; non-completion is associated with greater overall impairment. About 30% of residents with severe cognitive impairment could self-report on their QoL with acceptable reliability.

Conclusions:

QoL self-rating should be the first-line option when assessing residents with severe cognitive impairment. For those that are not able to complete self-report measures, proxies’ report could be an alternative, although the development of other assessment procedures (e.g. observational) should be considered.

Keywords

quality of lifedementiapsychological assessmentcognitive impairmentlong-term care
Type
Research Article
Information
International Psychogeriatrics , Volume 25 , Issue 10 , October 2013 , pp. 1687 - 1695
Copyright
Copyright © International Psychogeriatric Association 2013 

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References

Alexopoulos, G. A., Abrams, R. C., Young, R. C. and Shamoian, C. A. (1988). Cornell Scale for depression in dementia. Biological Psychiatry, 23, 271–284. doi:10.1016/0006-3223(88)90038-8.CrossRefGoogle ScholarPubMed
Beer, C.et al. (2010). Factors associated with self and informant ratings of the quality of life of people with dementia living in care facilities: a cross sectional study. PLoS One, 5, e15621. doi:10.1371/journal.pone.001562.CrossRefGoogle ScholarPubMed
Cohen-Mansfield, J. (1986). Agitated behaviors in the elderly II. Preliminary results in the cognitively deteriorated. Journal of the American Geriatrics Society, 34, 722–727.CrossRefGoogle ScholarPubMed
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. American Journal of Geriatric Psychiatry, 24, 585–594. doi:10.1002/gps.216.CrossRefGoogle ScholarPubMed
Conde-Sala, J. L.et al. (2013). Severity of dementia, anosognosia and depression in relation to the quality of life of patients with Alzheimer's disease: discrepancies between patients and caregivers. American Journal of Geriatric Psychiatry (published online ahead of print). doi:10.1016/j.jagp.2012.07.001.CrossRefGoogle Scholar
Crespo, M., Bernaldo de Quirós, M., Gómez, M. M. and Hornillos, C. (2012). Quality of life of nursing home residents with dementia: comparison of perspectives of residents, family and staff. The Gerontologist, 52, 56–65. doi:10.1093/geront/gnr080.CrossRefGoogle ScholarPubMed
Crespo, M., Hornillos, C. and Bernaldo de Quirós, M. (2013). Factors associated with quality of life in dementia patients in long-term care. International Pyschogeriatrics, 25, 577–585. doi:10.1017/S1041610212002219.CrossRefGoogle ScholarPubMed
Edelman, P., Fulton, B. R., Kuhn, D. and Chang, C. H. (2005). A comparison of three methods of measuring dementia-specific quality of life: perspectives of residents, staff, and observers. The Gerontologist, 4, 27–36. doi:10.1093/geront/45.suppl_1.27.CrossRefGoogle Scholar
Edelman, P., Fulton, B. R., Kuhn, D., Gallager, M., Dougherty, J. and Long, C. O. (2007). Assessing quality of life across the dementia continuum: two new observational tools for researchers and practitioners. Alzheimer's Care Today, 8, 332–343. doi:10.1097/01.ALCAT.0000297154.97526. bd.Google Scholar
Hoe, J., Katona, C., Roch, B. and Livingston, G. (2005). Use of the QOL-AD for measuring quality of life in people with severe dementia – the LASER-AD study. Age and Ageing, 34, 130–135. doi:10.1093/ageing/afi030.CrossRefGoogle ScholarPubMed
Hoe, J., Hancock, G., Livingston, G. and Orrell, M. (2006). Quality of life in people with dementia in residential care homes. British Journal of Psychiatry, 188, 460–464. doi: 10.1192/bjp.bp.104.007658.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
Hoe, J.et al. (2009). Changes in the quality of life of people with dementia living in care homes. Alzheimer Disease and Associated Disorders, 23, 285–290. doi:10.1097/WAD.0b013e318194fc1e.CrossRefGoogle ScholarPubMed
Katona, C.et al. (2007). International Psychogeriatric Association consensus statement on defining and measuring treatment benefits in dementia. International Psychogeriatrics, 19, 345–354. doi:10.1017/S1041610207005145.CrossRefGoogle ScholarPubMed
Lawton, M. P. (1991). A multidimensional view of quality of life in frail elders. In Birren, J. E., Lubben, J. E., Rowe, J. C. and Deutchman, G. E. (eds.), The Concept and Measurement of Quality of Life in the Frail Elderly (pp. 4–27). New York: Academic Press.Google Scholar
León-Salas, B., Logsdon, R. G., Olazarán, J., Martínez-Martín, P. and The, MSU-ADRU. (2011a). Psychometric properties of the Spanish QoL–AD with institutionalized dementia patients and their family caregivers in Spain. Aging and Mental Health, 15, 775–783. doi:10.1080/13607863.2011.562183.CrossRefGoogle ScholarPubMed
León-Salas, B., Olazarán, J., Muñiz, R., González- Salvador, M. T. and Martínez-Martín, P. (2011b). Caregivers’ estimation of patients’ quality of life (QoL) in Alzheimer's disease (AD): an approach using the ADRQL. Archives of Gerontology and Geriatrics, 53, 13–18. doi:10.1016/j.archger.2010.05.021.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., 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
Mack, J. L. and Whitehouse, P. J. (2001). Quality of life in dementia: state of the art – report of the International Working Group for Harmonization of Dementia Drug Guidelines and the Alzheimer's Society satellite meeting. Alzheimer Disease and Associated Disorders, 15, 69–71. doi:10.1097/00002093-200104000-00005.CrossRefGoogle Scholar
Mahoney, F. I. and Barthel, D. W. (1965). Functional Evaluation: the Barthel Index. Maryland Medical Journal, 14, 61–65.Google ScholarPubMed
Méndez, M. F., Martin, R. J., Smith, K. and Whitehouse, P. J. (1990). Psychiatric symptoms in Alzheimer's disease. Journal of Neuropsychological and Clinical Neuroscience, 2, 228–233.Google Scholar
Moniz-Cook, E.et al. (2008). A European consensus on outcome measures for psychological intervention research in dementia care. Aging and Mental Health, 12, 14–29. doi:10.1080/13607860801919850.CrossRefGoogle ScholarPubMed
Reisberg, B., Ferris, S. H., de Leon, M. J. and Crook, T. (1982). The Global Deterioration Scale for assessment of primary degenerative dementia. The American Journal of Psychiatry, 139, 1136–1139.Google ScholarPubMed
Selai, C. E., Trimble, M. R., Rossor, M. N. and Harvey, R. J. (2001). Assessing quality of life in dementia: preliminary psychometric testing of the Quality of Life Assessment Schedule (QOLAS). Neuropsychological Rehabilitation, 11, 219–243. doi:10.1080/09602010042000033.CrossRefGoogle Scholar
Spector, A. and Orrell, M. (2006). Quality of life (QoL) in dementia: a comparison of the perceptions of people with dementia and care staff in residential homes. Alzheimer Disease and Associated Disorders, 20, 160–165. doi:10.1097/00002093-200607000- 00007.CrossRefGoogle ScholarPubMed
Thorgrimsen, L.et al. (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. doi:10.1097/00002093-200310000-00002.CrossRefGoogle ScholarPubMed
Whitehouse, P. J. and Rabins, P. V. (1992). Quality of life in dementia. Alzheimer Disease and Associated Disorders, 6, 135–137. doi:10.1097/00002093-199206030- 00001.CrossRefGoogle Scholar
Winzelberg, G. S., Williams, C. S., Preisser, J. S., Zimmerman, S. and Sloane, P. D. (2005). Factors associated with nursing assistant quality of life ratings for residents with dementia in long-term care facilities. The Gerontologist, 4 (special issue I), 106–114. doi:10.1093/geront/45.suppl_1.106.CrossRefGoogle Scholar
Zimmerman, S.et al. (2005). Dementia care and quality of life in assisted living and nursing homes. The Gerontologist, 4 (special issue I), 133–146. doi:10.1093/geront/45.suppl_1.133.CrossRefGoogle Scholar