This research program was designed to address three objectives:
Objective 1: Identify social situations and and places where/when individuals with dementia and their primary carers experience exclusion in relationship to perceptions of personhood.
Dr. Rossio Motta Ochoa conducted nine-months of ethnographic fieldwork at AGI and at the homes of AGI’s clients to explore the points of view of 1) persons with dementia; 2) primary caregivers; and 3) staff members about situations, moments and places of social inclusion and exclusion. Forty-nine individuals were recruited for participant observation and ethnographic interviews, enabling spontaneous conversations to emerge in real-time, rather than relying on the memory of individuals with dementia. Dr. Motta Ochoa also conducted semi-structured interviews with a sub-group for triangulation. All data were analyzed thematically, with the input of partners from AGI for discussions about the interpretation and meaning of the findings.
Our first major finding was that the participant’s culture was inextricably linked to their experiences of social inclusion and exclusion. Participants reported how their culture affected the transformation of the person with dementia and the caregiver, the ways in which they participated in social networks and meaningful relations, and the styles of care provisions in health and social services. Cultural mandates prescribing practices of intergenerational care, and culturally specific notions associated with dementia shaped experiences of inclusion and exclusion. Our work also showed how engaging with the cultural elements of individuals with dementia was an effective and underexplored tool for fostering inclusion. These results are fully detailed in an article published in Transcultural Psychiatry: “‘When I hear my language, I travel back in time and I feel at home”: Intersections of culture with social inclusion and exclusion of persons with dementia and their caregivers”.
Our second major result was a description of the in-action practices of social inclusion of individuals with dementia, extending the research lens to capture the various ways in which social inclusion is pragmatically enacted. We focused on actions, which are imbued by the meaningfulness to and intended purpose of the agent, and acknowledges the knowledge that is tacit in action. We identified seven in-actions practices of effective inclusion: ensuring time for individual relationships, building schedules centered around flexibility, empowering decision-making, normalizing dementia-related behaviours, involving family members, soliciting and integrating persons with dementia’s feedback, and supporting persons with dementia to practice social inclusion. While many of our findings reflected principles that have been well-established in person-centered care, they highlighted two practices that have received little attention to-date: the contact solicitation of feedback from individuals with dementia; and the practices of social inclusion enacted by individuals with dementia with their peers and with staff. We also provide descriptions of all practices, aiming to facilitate their partial translation to other community-based organizations and multiple inclusive environments for persons with dementia. The full results are published in Clinical Gerontology: “‘You’re part of us and we’re happy to have you here”: Practices of social inclusion for persons with dementia”.
Objective 2: Tailor and implement Moving-With – a movement-based intervention for individuals with dementia and their carers.
To accomplish this objective, we partnered with Ariane Boulet and Je Suis Julio, who delivered movement-based programs called Mouvement de passage at AGI designed to foster moments of interpersonal connection between individuals with dementia and their carers. Dr. Rossio Motta Ochoa and Natalia Incio Serra used ethnographic methods — including participant observations and informal interviewers — to understand the relational effects of this program, conducted by two dancers and a musician. Eight sessions were delivered over the course of 4 months; sessions were videotaped, and the participants’ physiological signals were monitored using wearable technology.
Our analysis revealed that participants in Mouvement de passage experienced increasing numbers of connections over the course of the program, despite most participants not remembering the previous movement sessions. In particular, participants had increasing numbers of reciprocal interpersonal connections throughout the program. Participants explored new forms of moving and creatively transformed the movement structures proposed by the dancers. Our results demonstrated the effectiveness of this program in augmenting connections and fostering exploration and creativity in individuals with dementia, providing a template for other interventions targeting the relational dimensions of dementia. The full results are published in Dementia: “Mouvement de passage: Creating connections through movement among persons with dementia”.
During Mouvement de passage, we noticed how the movement program fostered expressions of agency in participants with dementia. We used the social science theories of interaction between structure and agency to examine how this arts-based movement program achieved this effect. Our results demonstrated that participants with dementia expressed their agency in three ways: 1) transforming the exercise’s structure according to their individual interests and desires; 2) resisting the exercise’s structure; and 3) improvising movements collectively. We also showed how the design of Mouvement de passage was effective in fostering agency, providing a template for developing future intervention to achieve similar effects. The full results are published in Arts and Health: “Enacting agency: movement, dementia and interaction”.
Objective 3: Tailor and implement Tuning-In – an emotion-recognition technology customized to particular individuals with dementia to increase perceptions of their personhood.
The BIAPT lab has invented Biomusic – a wearable technology that detects emotion-related changes in physiological signals and converts them to sonic output. In this objective, we wanted to determine if biomusic could be used by individuals with dementia and their caregivers to increase feelings of connection and personhood.
First, we determined that salient moments of connection could be detected from individuals with dementia using wearable technology. Using a finger sensor, we recorded three physiological signals — electrodermal activity, skin temperature, blood volume pulse — from individuals with dementia as they engaged in a movement program. We synchronized the physiological data with video data, and used salient physiological features (e.g. electrodermal reactions) to mark moments in the video which appeared physiologically significant to the participant. Immediately after the session, we showed a 30 second video clip containing the putative significant moment to the individual with dementia and their caregiver. Their verbal feedback confirmed that the physiological reactions corresponded with significant moments, validating the reliability of this method. The full results are published in Biomedical Engineering Online: “Wearable Technology for Detecting Significant Moments in Individuals with Dementia”.
We then tested biomusic in a series of participatory case studies with an individual with dementia and their caregiver. We involved the caregivers as co-designers, and iteratively tailored biomusic to meet their specific needs and contexts. Biomusic was used as a detector for negative emotions, which supported caregiver interpretations of the non-verbal behavior of the individual they were caring for. Most interestingly, biomusic was used in a “remote monitoring” setting, where a spouse was able to monitor the real-time physiological signals of her husband living in a long-term care home. These results were presented at the 2020 4S annual meeting: “Rethinking personhood and inclusive technologies: Biomusic as relational effect”, and is the subject of a forthcoming article.
As a result of this project, the biomusic Android app has evolved from a laboratory prototype to robust, stable software, with the ability to be customized to the individual needs of each user. We expect to release biomusic through our newly incorporated company, Expressiva, in the near future.