What contributes to a good quality of life in early dementia? awareness and the QoL-AD: a cross-sectional study

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.

Individual cognitive stimulation therapy for dementia: a clinical effectiveness and cost-effectiveness pragmatic, multicentre, randomised controlled trial

“…Relationship quality, rated by the person with dementia, has been shown to be an important contributor to quality of life for people with dementia and is the cornerstone of relationship-centred care. 75 We also found that health-related quality of life for family carers significantly increased, indicating that carer involvement in cognitive-based interventions may increase carer well-being. This may be related to the fact that, although iCST was developed largely as a home-based, carer-led, individual cognitive stimulation approach, the intervention incorporated additional psychoeducational elements such as communication, opportunities to increase pleasant events for both carers and people with dementia, which are components less likely to be incorporated in group CST-based approaches.…”

Quality of Life in People with Young-Onset Alzheimer’s Dementia and Frontotemporal Dementia

“…The lack of self-reports for group comparison could allow differences in the dyad composition in the two populations to cause systematic proxy bias. Informants consistently rate QOL in people with dementia poorer than the self-reported QOL, and the reports on QOL of individuals with severe dementia, most reliant on their proxy voice, show the greatest discrepancy [29, 62, 65-67]. Proxy reports are also biased by informant-related factors, especially caregiver burden [68, 69], and dyad characteristics [70].…”

Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice

“…In addition, unravelling the relationship between needs and QOL is, of course, a more complex task than our relatively simply model can perform. Including predictors, such as depressed mood, quality of relationship and self-concept, in the model might account for a large percentage of the variance (Woods et al, 2014) This complexity will be investigated with the longitudinal data of this cohort. The strengths of this study are the size and variability of the cohort, as it represents people from eight European countries.…”