Doctoral thesis

Navigating the landscape of dementia care : iSupport Swiss as a case study

  • 2023

PhD: Università della Svizzera italiana

English This PhD dissertation aims to shed light on the intricate mosaic of informal caregivers of people with dementia, along with the secondary aim of locally adapting and implementing iSupport, a WHO digital intervention to support caregivers. To reach these aims, we employed mixed methods and techniques, including cross-sectional surveys, focus group discussions and a systematic review. Chapter 2 serves as a compass, providing a summary of the pivotal themes central to this thesis. It includes a review of the literature on 1) dementia and its relevance at a public health level; 2) the prevalence and characteristics of informal care; 3) the existing traditional and digital interventions dedicated to caregivers; 4) the challenges of implementation science; and 5) the background and structure of iSupport. Based on the findings of a published cross-sectional study, chapter 3 presents an exploration of the mental health of informal caregivers of people with dementia living in Switzerland (Ticino) and Italy. Specifically, the work explored symptoms of burden, stress, anxiety, depression, and loneliness experienced by caregivers during the initial wave of the COVID-19 pandemic. Chapter 4 is a published qualitative study on the attitudes of informal caregivers towards support interventions and seeking help behaviours. It offers a perspective on the potential barriers and facilitators to the access and adoption of support measures. Chapter 5 is a recently submitted systematic review that focused on the adoption of participatory methods in designing and developing digital interventions dedicated to informal caregivers. Chapter 6 is a mixed-methods study, submitted and currently under revision, describing the cultural adaptation process of iSupport in Ticino. This study provides insights into the integration of a community-based participatory approach and offers preliminary results of the iSupport adaptation process. In Chapter 7 we summarized the main findings across the studies, drawing overarching conclusions and offering recommendations for future research endeavours. Finally, Chapter 8 (appendix) serves as a showcase, illustrating examples of the outputs and materials related to iSupport Swiss. This section provides concrete examples of the process of adaptation and dissemination of iSupport in Switzerland.
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