Further longitudinal investigation is warranted to determine if self-efficacy might be usefully considered a target in future interventional studies to alleviate symptoms of burden and depression in Alzheimer's caregivers.
Interventions which seek to reduce caregiver desire to institutionalize should adopt a multifactorial approach to reduce symptoms of burden and depression in caregivers.
Given the strength, consistency, and predictable characteristics of the relationships, the algorithms appear to provide valuable and valid methods to estimate utilities from IBDQ scores (but not CDAI) in trials of Crohn's disease patients that have collected IBDQ scores but not utilities.
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.
The costs of care for patients with AD in Spain are substantial, with informal care accounting for the greatest part. Dementia severity, measured by CDR score, showed that with increasing severity of the disease, direct medical, social care, informal care and total costs augmented.
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