Poster presentation at the 17th International Engaging Dementia Conference in Athlone, Ireland

Background: Limited work explores digital technology adoption (e.g., internet of things devices, wearables, and smart devices) by informal dementia caregivers to document the needs and activities of people with dementia (e.g., activity levels, sleep, nutrition, medication, affect, etc.). Deployment of digital technologies by caregivers to support people with dementia also raises unaddressed ethical issues around digital surveillance and informed consent. 

Aims: The overarching aim of the Dementia Data Reciprocity Project (DDRP) is to reduce recordkeeping burdens experienced by informal dementia caregivers. It also seeks to find solutions to ethical challenges associated with the use of digital technologies by people with dementia and caregivers.

Ethical Considerations: To ensure safety of vulnerable participants, future data collection activities involving people with dementia will be conducted with caregiver-patient dyads.

Future Work: Future work will: (1) use fieldwork to conduct environmental scans of the technological infrastructure and uses within the homes of caregivers and people with dementia; (2) consult with a variety of dementia stakeholders including health care providers, dementia-related nonprofits, academic dementia researchers, and firms that design assistive technologies for people with dementia and caregivers about the value of data about people with dementia, and (3) conduct a series of participatory design sessions to design educational products that inform dementia caregivers about opportunities and privacy risks associated with digital technologies in dementia caregiving.