Thorgrimsen, Lene Marie Harkjaer; (2004) Quality of life in dementia. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Dementia is no longer perceived as an exclusively cognitive disorder, but encompassing other significant elements, such as functioning, the person's ability to cope with difficulties, and the person's subjective experience of her/his quality of life (QoL). As such, QoL is increasingly seen as one of the variables in need of identification and evaluation when assessing the outcomes of interventions for people with dementia. This thesis attempts to define and conceptualise QoL in dementia, and considers issues surrounding the assessment of this. This thesis investigates QoL in dementia in the context of an evidence-based psychological group therapy programme. It examines variables associated with QoL in dementia, as well as the effects of the intervention conducted on QoL in dementia. A conceptual model of QoL in dementia is proposed. Additionally, the thesis evaluates a standardised scale for the assessment of QoL in dementia in terms of its reliability, validity, and sensitivity to change. The thesis includes three studies conducted: (1) Factors Associated with Quality of Life in Dementia (n = 201); (2) Factors Associated with Change in Quality of Life in Dementia (n = 201); and (3) The Validity and Reliability of the Quality of Life - Alzheimer's Disease Scale (QOL-AD; n = 201 and n = 60). The results from these studies show that QoL in dementia is significantly correlated with functioning and depression, but not with cognitive abilities. They also show that QoL in dementia is significantly predicted by dementia severity. Furthermore, the results show that an evidence-based psychological group therapy programme had a significant positive effect on QoL for people with dementia. Change in QoL in dementia was found in the studies reported in this thesis to be significantly correlated with improvements in cognitive functioning, level of depression, communication abilities and baseline level of QoL, and to be significantly predicted by having a lower QoL at baseline and being female. Lastly, the QOL-AD was found to be valid, reliable and sensitive to change. As such, the evidence-based psychological group therapy programme was shown in a scientifically rigorous trial to make a significant difference to the QoL for people with dementia. Furthermore, the possibility of measuring QoL in dementia reliably, without proxy input, was demonstrated. Although some correlations between QoL and other variables in dementia was found, the results presented here suggest that QoL in dementia is a largely independent variable that needs to be measured in its own right.

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