Enriching social sharing for the dementia community: Technological opportunities
Bibliographic record
Abstract
Dementia affects cognition, behaviour, and physical ability, posing serious challenges for maintaining active social interactions. Community-based activities are well-positioned to leverage the strengths and capacities of people with dementia and support social inclusion. A growing body of human-computer interaction (HCI) research is exploring technological opportunities for social activities at home and care facilities; however, comparatively less work has focused on community settings. This thesis helps fill this critical gap in HCI research on supporting community-based social sharing for people with dementia, both in-person and virtual. Through on-site fieldwork, virtual fieldwork, and methodological self-reflection, this thesis makes empirical contributions to dementia-related HCI research, as well as methodological contributions to HCI research in dementia and broader accessibility settings.Situating our on-site fieldwork in Tales & Travels, a storytelling and socializing program in the Montreal dementia community, we interviewed dyads of people living with early-middle stage dementia and their primary family caregivers, individual caregivers, and Tales & Travels facilitators (librarians and Alzheimer Society coordinators). Concurrently, we observed Tales & Travels sessions. Through thematic analysis on the interview transcripts and observation notes, this work identifies factors that aid in achieving positive outcomes and proposes new avenues for social technologies to diversify the range of social spaces in community settings.Building upon our on-site fieldwork, our virtual fieldwork investigates remote social activities explored by the same community in response to the impacts of the COVID-19 pandemic. We conducted follow-up interviews with a subset of caregivers and facilitators who participated in our previous study. Then, we reflected on our volunteering and facilitation experience at virtual Tales & Travels. Through thematic analysis on the interview transcripts and reflexive facilitation notes, this work deepens the understanding of virtual social sharing for the dementia community and proposes new avenues for reimagining community social spaces, affirming agency in people with dementia and caregivers, and diversifying HCI support across communities.Critically reflecting on our on-site fieldwork, we re-analyzed our interview transcripts and observation notes, as well as the process of study design, data collection, and data analysis. We examined how we succeeded and failed to capture the perspective of people with dementia while involving proxies (i.e., caregivers and facilitators). Through qualitative content analysis, this work contributes practical approaches to effective inclusion of proxy stakeholders in qualitative HCI work in sensitive settings. We further propose a set of guidelines recommending 1) extended engagement with the community and multifaceted research design in preliminary work, 2) open and flexible research settings, power dynamics management and intervention, and verbal and nonverbal communication in data collection, and 3) awareness of imbalanced voices and triangulation across sources in data analysis
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.002 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.003 | 0.001 |
| Research integrity | 0.000 | 0.002 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".