Moving With and Tuning In: A participatory mixed methods study to foster social inclusion of individuals with dementia and their carers

Renseignements sur le financement
Canadian Institutes of Health Research
  • Type de subvention: Subvention de fonctionnement: Inclusion sociale des personnes atteintes de démence et de leurs soignants
  • Années: 2016/17 à 2020/21
  • Financement total: $316,341
Mots clés
Chercheur(e) principal(e)

Sommaire du projet

One of the most insidious consequences of dementia is the rupture of relationships, which occurs both between the individual with dementia and his/her primary caregiver (the dyad), and between the dyad and other members of society. As a result, both members of the dyad suffer from a loss of personhood, and are likely to experience social exclusion. In this research program, we examine the effect of two interventions - Moving-With and Tuning-In - on perceptions of personhood and social inclusion/exclusion. We will first identify and characterize social situations and places where individuals with dementia and their primary caregivers have exceptional experiences of social inclusion and exclusion. We will then facilitate in ten Moving-With sessions, where dyads will be guided by a dance therapist in an embodied, partnered experience. Video and physiological data will be recorded, and used with retrospective interviews to 1) identify the active ingredients in the Moving-With intervention and 2) to train a physiological-based emotional classifier for individuals with dementia. Finally, we will use the trained emotion classifiers to sonify the physiological signals of individuals with dementia. This technology (Tuning-In), will be tested in three settings: 1) home; 2) places of identified social exclusion; and 3) institutions who have indicated their willingness to develop more inclusive practices. We will use physiological signal analysis and qualitative methods to characterize the effects of Tuning-In on experiences of social inclusion/exclusion for the dyad. Upon completion of this project, we expect to have developed and assessed two interventions that can be scaled up, created training manuals and online videos of best practices for each intervention, and used our understanding of the transformations in personhood to inform policy and recommendations for participatory research in the context of dementia care.

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