Participants were able to complete items relating to feelings and evaluations of a range of QoL domains. The consistency of responses over a 2-week period suggests that self-reported QoL assessments are feasible and appropriate for people with mild to moderate dementia.
Objective Evidence suggests that people with dementia are able to respond accurately and consistently to questions about quality of life (QoL), although large discrepancies exist between patient and proxy ratings. This may be due, in part, to the reduced insight of the person with dementia. The aim of this study was to explore the predictors of QoL ratings in a sample of people with mild dementia, with a particular focus on the role of insight.
The SIPSO provides a brief, valid and reliable assessment of an individual's ability to reintegrate to a 'normal' lifestyle. The SIPSO differs from other measures in that it provides assessment of both quantity and quality of activities and interaction, reflecting an individual's ability to reintegrate to his/her own satisfaction. As a 10-item self-report questionnaire the SIPSO can be administered quickly and cheaply to large numbers of patients.
ObjectiveThe relationship between conventional indicators of Alzheimer's disease (AD) progression and quality of life (QoL) outcomes is unclear. Dependence on others has been recommended as a unifying construct in defining AD severity. This study examined the relationship between indicators of disease severity (including dependence) and changes in QoL and utility over 18-months.
MethodsA multi-centre, cohort study was conducted across 18 UK sites. One hundred and forty five patients with possible/probable AD and their caregivers completed assessments of disease severity (Dependence Scale, Mini-Mental State Examination, Neuropsychiatric Inventory, Disability Assessment for Dementia), dementia-specific QoL (DEMQOL, DEMQOL-Proxy) and generic healthrelated utility (EQ-5D) at both time points.
ResultsThere was evidence of individual change in QoL over 18 months, with over 50% of patients reporting either maintenance or improvement of life quality. The EQ-5D proxy suggested a mean decline in QoL whilst the DEMQOL-Proxy indicated overall improvement. In the subsample of people who selfreported QoL and utility, no mean change was evident. Changes in dependence did not explain changes on any QoL or utility outcome. There was a weak association between the EQ-5D proxy and changes in cognition, whereas changes on the DEMQOL-Proxy were partly explained by changes in behavioural disturbance.
ConclusionsThe natural progression of AD over 18-months does not lead to inevitable decline in QoL or utility. There are no clear or consistent direct relationships between changes in disease severity and QoL outcomes. The impact of increasing dependence and worsening disease severity is likely buffered by a combination of psychological, social and environmental factors.
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