I'm Connie Guan with the Healthcare Robotics lab at UC San Diego.
Our work explores the design of embodied technology for people with
dementia and their caregivers with a community health lens.
Dementia is a category of diseases characterized by progressive impairments in cognitive function,
which can lead to isolation and loss of agency in people with dementia.
Informal caregivers provide the majority of support, yet worldwide,
are overburdened by a huge lack of social and financial support.
Researchers across many disciplines are exploring new ways to support both populations.
Current HCI research adopts a critical dementia lens, which examines dementia's social
construction to understand embodied expressions of personhood via music, art, and other experiences.
Meanwhile in public health, researchers consider how social determinants of health,
such as racism, classism, sexism, and ableism, can impact health equity for
both caregivers and people with dementia and explore methods to address them.
Our question then is "What lies at
the intersection of these two approaches to dementia care?"
With this framing our first research question is "How can we design sensory and embodied
technologies to promote agency in people with dementia and alleviate caregiver burden?"
Second, "How can we incorporate community health care practices
into dementia technology design to advance health equity?"
Over a year and a half we engaged in a three-phase research process.
From our prior work we knew that meal times can be very difficult,
as people with dementia may need repeated reminders or assistance to eat.
With this as our initial problem space, we iterated on designs and
finally settled on a radio design probe intended to help during meals.
It plays music to incorporate music therapy, has a robotic arm to mimic an eating motion,
and resembles a familiar radio design.
We use this probe in our later two stages of research to get participants
to reflect on their care practice and then envision future technology.
We conducted a thematic analysis of our data,
which yielded four themes, which I'll briefly introduce.
The first theme was that professional caregivers structure interactions to
affirm the self-agency of the person with dementia.
They might ask "How do you feel about breakfast?" rather than "What did you eat for breakfast?" to
let someone with dementia express themselves without having to rely on their memory.
There's an opportunity here to design interactions that are
similarly tailored to reinforce the agency of the person with dementia.
The second theme was that emotional well-being and task assistance are interdependent concepts.
One of the hardest aspects of dementia care is supporting the
emotional well-being of the person with dementia during care tasks.
A person with dementia might get frustrated at being told what to do,
which frustrates the caregiver, and now with two frustrated and stressed people,
the care task is only harder to accomplish.
Care technology could use a sensory experience like music to keep the person with dementia
calm during tasks and relieve some of that burden from the caregiver.
Alternatively, it could provide prompts to the caregiver to help them reorient
themselves and the person with dementia back to the care task in ways that are more effective.
The third theme is the importance of using non-verbal embodied cues
to communicate with people with dementia.
Educators teach caregivers to use action mimicry cues
instead of verbal explanations as these are better understood in late stage dementia.
For example seeing a caregiver eating can often jumpstart their
actions and help them follow along in ways that verbal prompts can't.
Technology designs can employ non-verbal cues
to help communicate actions with people with dementia.
Finally, our participants envisioned various roles that technology could
serve to support the dynamics between the caregiver and person with dementia.
For example, mediating interactions as a motivator to promote positive interactions
or as a respite provider to give caregivers a break.
Technology could also support conducting specific tasks
either as a facilitator that helps people with dementia perform tasks themselves
or as an educator for caregivers to model useful caregiving practice.
There are two key takeaways from our work,
first is the importance of designing technology for non-verbal and embodied communication.
This allows technology to adapt to changes in the brain as language can be difficult in later
stages of dementia, but sensory and embodied experiences are retained for much longer.
Building this kind of community care practice into technology is one way
designers can align the use of technology with the work being done in community health.
Our second key takeaway is the opportunity to
address health equity by designing for the community health system.
We've identified three areas where technology can support the ecosystem of health workers.
The first is access, which we often view in terms of how technology can help
individuals access community resources.
Here we can envision how technology can make community resources like art therapy
or support groups available to people in their homes.
The second is education and supporting caregiver educators.
Perhaps educators could provide caregiver's technologies to guide
them during care tasks and help reduce their cognitive load.
Finally, the third area is expanding the reach of the community system where technology can
expand the ability of community workers to scale their existing support programs.
Ultimately, we hope our work can provide one of many starting points for future design
research to draw on community health frameworks to tackle complex social issues like health equity.
I'd like to thank my collaborators and sponsors and i'm happy to take questions.