Scoping our Focus Area
Week Six: 2/20– 2/26
02/20: Expert Interview with Dr. William Klunk
We met with Dr. William Klunk, who is the co-director of the Alzheimer Disease Research Center at UPMC as well as a professor of psychiatry and neurology at the University of Pittsburgh to learn about the extreme user group. In a nutshell, we talked to him about the following topics based on his expertise in the area of cognitive decline:
- Aging and memory loss
- Memory as function
- Impact on identity
- Personality
- Losing memory & impact on family
- Impacting how we create new memories things?
- Practices people use to work around debilitations in Alzheimer’s?
- Coping skills?
- Current technologies & media in treatments of Alzheimer’s patients?
Dr. Klunk talked at length about what role memory plays in day to day life and how different people had different reactions when they are diagnosed with Alzheimers.
“The whole idea of being at risk gets them into Depression… People are most often in a state of denial”
He expressed that it’s not just the patients who are affected, sometimes it hits really hard more for people who having been caring for them and also, to people who have seen someone suffer from the same disease. It hurts most when people start losing independence, and when they fear about not being able to recognize their family and loved ones.
He explained how short-term memory goes first and losing identity comes close to the end. People tend to encode memories for themselves which deteriorates with age and get twisted in time. At some point, people need all the functioning they need as these transitions are very hard. For coping this fatal disease, people device their own mechanisms- taking notes about people around them, but he believes that it’ll become increasingly technological. For e.g, he sees value in advancements like self-driving cars, since these might be able to restore the independence they would otherwise lose. He adds,
“Phones have become everyone’s memory”
02/25: Scoping from exploratory research
In preparation for our generative research phase, we were tasked with narrowing down our focus based off of the feedbacks received in the exploratory research presentation. Keeping all the design implications in mind, and following Bruce’s advice, we started swapping words in and out of our research question,
HMW enable families to document and share their stories in a curated way.
As a team, we have been talking a lot about who should our stakeholders be. From all the research we have done so far, family context has been central to everyone while they made memories. The urge to remain connected and document experiences to share with their families are at a high when they people stay away from their families. Our discussions around our own experiences of living remote from our families revolved a lot around three main heads; Space, Time and Activity.
- SPACE- The context of the space you might be in, private or public, have a role in guiding the kind of conversation you have. For a lot of people, talking at home is more preferable than talking in public due to regulations of social norms.
- TIME- The geographic locations and time differences between different parts of the world do not always allow sharing of experiences in the real time.
- ACTIVITY- With remote distances, it is impossible to know if the person is in the best condition to talk to you or not, until you contact them. Not being able to predict the mental state of the other party proves to be discouraging sometimes.
We reframed our questions as,
HMW help families stay close even when they’re far apart?
Surrounding this discussion, we decided to explore the dynamics in various scenarios and various age groups that make the families feel left out. We honed in to three categories as our jumping off point:
- Families with children
- Families with a remote parent
- Adults living far from aging parents
As our next steps, we would look at three different age groups of young adults and grandparents; 25–40 years, 40–65 years and 65+ years; and to study how they connect to each other remotely as well as how might mixed reality change the area we are exploring? As a next step, it would be important for us to form generative workshops to know more about:
- CONTENT- What is that they want to share?
- MEDIUM- What medium do they use to connect with their families?
- ACTIVITY- Does the medium suffice their needs, and if not, what is it that they are missing?
For our workshop, we want to include people from all walks of life and various backgrounds. For this, we’re recruiting participants ranging from 25–55 years-old who have used online banking services on Craigslist, Reddit as well as connecting with the people with we know beyond CMU. We would also be conducting private in-person interviews with people from the three age groups.
