Objectives: Efforts to improve quality of life (QOL) in dementia depend on its accurate conceptualization and assessment. We employed a data-driven network approach to examine the structure of relationships between individual QOL items. This approach allowed us to capture the complexity and multidimensional nature of QOL from the perspective of the person with dementia and their carer.
Method: Participants with dementia (n = 128) and carers completed the Quality of Life in Alzheimer's Disease questionnaire (QOL-AD), and measures of depressive symptoms, cognition, and functional abilities of the person with dementia, and carer burden. Gaussian graphical models with regularized partial correlations of QOL-AD items were estimated and compared, and item communities were detected.
Results: Central elements that emerged in both self and carer-reported networks included Ability to do Things for Fun, Energy, and Life as a Whole. Memory and Money were less central. Distinct differences were also evident between self- and carer-networks. Whilst Self as a Whole was relatively more central in the self-reported network, Ability to Do Chores and Family were more central in the carer-reported network. Moreover, different communities were detected in the networks, corresponding to domains including socioeconomic, daily, self-referential, and instrumental functioning, with differential correlations to key clinical outcome variables.
Conclusion: QOL in dementia is inherently multidimensional and differs when assessed from the viewpoint of the person living with dementia versus their carer. Network approaches offer the granularity required to ensure that targeted interventions can be tailored toward these complementary perspectives.
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