Abstract
BackgroundSelf-report quality of life (QoL) measures for people with dementia are widely used as outcome measures in trials of dementia care interventions. Depressed mood, relationship quality and neuropsychiatric symptoms predict scores on these measures, whereas cognitive impairment and functional abilities typically do not. This study examines whether these self-reports are influenced by personality and by the person’s awareness of his/her impairments. A strong negative association between QoL and awareness of deficits would have implications for the validity of self-report in this context and for therapeutic interventions aiming to increase adjustment and coping.MethodsParticipants were 101 individuals with early‒stage dementia and their family carers participating in the Memory Impairment and Dementia Awareness (MIDAS) Study. QoL was assessed using the QoL-AD scale, and awareness was assessed in relation to memory, activities of daily living and social functioning. Self-concept, conscientiousness, quality of relationship and mood were assessed and a brief neuropsychological battery administered. Carers rated their own stress and well-being and reported on neuropsychiatric symptoms. A series of regression analyses predicting QoL-AD were carried out, identifying key variables in each domain of assessment to take forward to an overall model.ResultsCognitive impairment was not related to QoL. The final model accounted for 57% of the variance in QoL-AD scores, with significant contributions from depressed mood, severity of irritability shown by the person with dementia, self-concept, quality of relationship (rated by the person with dementia) and male gender. The bivariate relationships of QoL-AD with awareness of memory function, awareness of functional abilities and conscientiousness were mediated by both depressed mood and self-concept.ConclusionsThis study reports the most comprehensive approach to evaluation of awareness to date. Most of the indices of awareness used are not related to self-reported QoL. Discrepancies in evaluative judgements of memory function and functional abilities between people with dementia and carers are related to QoL, but this relationship is mediated by both depressed mood and self-concept, which have a much stronger relationship with QoL. The validity of self-report measures of QoL in people with early stage dementia is supported by these results.
Highlights
Self-report quality of life (QoL) measures for people with dementia are widely used as outcome measures in trials of dementia care interventions
Having a diagnosis of Alzheimer’s remained in the model with the greatest predictive power, with a non-significant beta coefficient. Given that both functional activity discrepancy (FAD) and memory functioning discrepancy (MFD) had significant bivariate associations with QoL-Alzheimer’s disease (AD), we explored whether this relationship could be mediated by the major predictors, depression and self-concept
We have previously shown that a more positive selfconcept is related to greater discrepancies in reports of memory and social functioning between people with dementia and their carers [13], and the role of self-concept in mediating the relationship between some aspects of awareness and QoL-AD is clear from the current study
Summary
Self-report quality of life (QoL) measures for people with dementia are widely used as outcome measures in trials of dementia care interventions. The evaluation of outcomes for people with mild to moderate dementia has been transformed in recent years by the development of tailored self-report disease-specific quality of life (QoL) measures [1]. Such research can inform the continuing debate on the validity and meaningfulness of the self-report of quality of life by people with dementia. This would more fully address concerns that memory and other cognitive impairments as well as a lack of awareness of deficits potentially influence the ‘accuracy’ of reporting [2,3]. A proxy version is available, but here we will focus on self-report, as the person’s own perspective is fundamental to quality of life assessment
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