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

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.