Change and continuity in quality of life in dementia

Student thesis: Doctoral ThesisDoctor of Philosophy


Background: In the absence of a known cure in dementia, there is growing value in developing care practices and interventions that maintain good quality of life for people with dementia. To measure the efficacy of these therapies, understanding change in subjective quality of life in dementia becomes necessary. -- Methods: Study 1 was a longitudinal study over six months, measuring change in self-rated and carer-rated quality of life in dementia using the DEMQOL and DEMQOL Proxy. At Time 1, 121 people with dementia and 121 carers were interviewed; not all were matched pairs. At Time 2, 77 people with dementia and 75 carers were followed up. Study 2 was a qualitative Interpretative Phenomenological study, and explored in-depth the lived experience of dementia and techniques used to manage change. Nine people with dementia and nine carers were interviewed. -- Results: Study 1 found minimal significant change on DEMQOL and DEMQOL Proxy, suggesting that over six months, QoL remained stable. No significant predictors of change were identified in regression models. A secondary finding was limited correlation between DEMQOL and DEMQOL Proxy at Timel, at Time2, and between change scores. Study 2 identified a strong theme of continuity in narratives of people with dementia. Retained abilities were discussed and a variety of coping techniques were demonstrated. A sense of continuity was found to be associated with positive life quality. Carers talked more in terms of change and reasons for this are explored. -- Conclusions: Over six months, subjective quality of life in dementia appears to remain stable, as people with dementia focus on continuity and attempt to maintain preserved abilities and characteristics. The concept of continuity is suggested as a framework to understand the significance of coping mechanisms in relation to QoL measurement.
Date of Award2011
Original languageEnglish
Awarding Institution
  • King's College London
SupervisorJoanna Price (Supervisor) & Subrata Banerjee (Supervisor)

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