Hi I'm Emma Dixon and I'm presenting our work taking care of myself as long as I can how
people with dementia configure self-management systems.
Self-management in HCI has been defined as managing the symptoms treatment physical and
psychosocial consequences and lifestyle changes that are often involved with a chronic condition.
Researchers have studied technology to support self-management by identifying symptom triggers,
tracking daily activities and providing clinicians with data to personalize care plans in conditions
such as rosacea heart failure and arthritis.
Very little research has focused to understand technology used for the self-management of
progressive conditions. This might be because the goal of self-management technology is often to
regulate symptoms and facilitate behavior change so that individuals can cease using the technology .
In this study, we center the experience of living with dementia a condition where there are not
necessarily behavioral changes that will cease the need for self-management - as dementia is a
condition with no medical treatment or lifestyle change to indefinitely stop the progression.
We interviewed 17 tech-savvy people with mild to moderate dementia
We focus on tech-savvy individuals as a way to discover the potential benefits of technologies
that might exist if adopted by a broader audience. Interviews lasted approximately one hour and were
audio recorded. We conducted constructivist grounded theory to develop the findings.
Our paper describes the ways that people with dementia configure self-management
systems using everyday technologies. I'll share one participant's daily routine with technology
to provide an example of what this looks like.
Arthur's daily routine starts the night before, where he's programmed his Amazon Alexa voice assistant
to remind him to refill his teapot.
The teapot connected to a smart plug heats up each morning at a pre-specified time
at which point his Alexa wakes him up by saying "Arthur, your tea is ready". With his tea in hand
Arthur then receives his flash briefing from Alexa with his preferred news sources
Following his news briefing, Arthur does a mindful exercise with his Alexa to
"get rid of the cobwebs" Arthur has a background in programming which he uses to include reminders
each day that use non-standard phrases such as, "Arthur you need to have a shower or you will smell!"
When Arthur is ready to leave his home, he takes his tablet enabled with Alexa with him,
creating a single portable system.
Now that you've seen one example of the ways participants with dementia in our study utilize technology to support the management of
their daily lives, I'll briefly describe three central considerations in participants design of self-management systems.
First, people design systems in order to future proof. As Frank describes it future proofing is
"any advancements I can do now I do even though I don't necessarily need them now
because then it would be natural in the future when I do need it but couldn't learn it ."
For example, some participants started to use smart home technologies for reminders to get
used to receiving reminders from these systems before they actually needed those reminders.
The window of time for someone living with a progressive condition to future proof is finite.
Therefore, it's key for people with dementia to start using technology early in the condition.
Next people design with the social world in mind, often this included participants using technology
to fit in and project normalcy to others around them. For example, one participant, Helen,
looks at her phone in public places to blend in when she's feeling lost.
Our findings highlight the interconnected nature of how individuals social worlds shape their technology usage
and how technology shapes what it means to live in society.
Third they design systems to maintain control, avoiding certain technologies for fear of being
intentionally deceived due to their impaired judgment
and utilizing technologies in order to protect against well-intended others.
For example, Helen stated "If i don't use those tools then I have to hire somebody to come and caretake for me,
now somebody else is doing things for me not with me for me."
David expresses the potential risk of letting even well-intended others help in his self-management system,
as they could force you to go into assisted living or group home by reporting you are not able to live in your home anymore.
This shows participants seemingly simple design consideration to maintain control over their self-management systems have high stakes,
potentially life-altering implications.
These three points linked to the experience of dementia and broaden the notion of
self-management systems to include future oriented, sociotechnical, and self-determinate designs
In centering the work and perspective of people with dementia we aim for this paper to shift HCI
towards viewing people with dementia as capable consumers and inventive creators of their own
self-management systems.
For design recommendations and further details please see our paper.
Thank you!