Leave a message:
“Design for living and dying” is a studio class led by John Bruce and Patricia Berine. It explores how design might shape our systems of care, specifically as it relates to the stages of the end of life, questioning our relationship to death and dying that affect us throughout our life.
This project is a small gesture in the emotionally complex journey of people who suffer from Alzheimer and loved ones. We designed a phone that offers access. A phone that allows you to connect with people, even those whom you may no longer have access to beyond the living world just by leaving a message.
Team:
Paula Awakami,
Javiera Arenas.
My roles:
Concept Development,
Design Researcher,
Interview & workshop facilitation
Background & Research:
The group project ‘Leave a message’ was developed during a Studio course that focused on Design for living and dying. The studio explored the social, emotional, political, and spatial constructs that shape our relationship and experience of dying.
After diving into literature and mapping problem areas, as a class, we conducted a series of multi-stakeholder workshops designed to help better understand the different issues, experiences, expectations attached to the experience of dying. The workshops engaged patients, their families and friends, doctors, nurses, psychologists, social workers, hospice volunteers, and healthcare strategists from Memorial Sloan Kettering Hospital.
World cafe & wheel of reasoning (tool by FreedomLab).
Video ethnographic scenario workshop.
After the workshops as a group, we documented the outcomes, analyzed them and identified interesting areas, tensions, insights to follow through as we formed groups to move forward.
For our team we identified two guiding questions specifically as it relates to Alzheimer patients:
HMW facilitate meaningful interactions between caregivers and their loved ones when adjusting to radical change?
HMW create a safe space for patients without constraining their self- expression?
Synthesis and concept development:
My team started the project with a curiosity to understand the tensions between wanting to be in-control versus letting go and being in the moment. This interest led us to focus on the journey of patients suffering from Alzheimer and their caregivers.
According to the caregivers and family members, we interviewed in our research we came across many examples of patients either wanting to talk to people who are not there anymore, imagining dogs in the basement or feeling like they were kids again and wanted to talk to their parents.
In moments like these caregivers usually, end up responding in two general ways: they either validate their feelings and play along or they correct them
THREE MAIN CHALLENGES THE DESIGN AIMS TO ADDRESS
1. DENIAL and hoping that person you knew might come back.
2. LINGERING, even though Alzheimer patients forget an event, they still keep the feeling with them.
3. ISOLATION, when people are uncomfortable, a common response is withdrawal.
How it Works:
The caregiver and patient can easily program the phone by inserting the names/numbers of the people the patient would like to keep in contact with. When Gloria would like to send a message the voice recognition service asked her whom she wants to leave a message to. If the name
is in the speed dial then the message is sent. When Gloria asks to reach someone who is not around anymore, for example, her sister Mary, she will not the voice will still tell her to leave a message instead of telling her that the number is not registered.
This is a platform that can leverage many inexpensive telecommunication technologies that already exists.
Design Principles:
FOSTERING INTENTIONAL ATTENTION:
Everyday we fight stimulus and are constantly faced with a lot of information. Imagine the daily struggle patients with Alzheimer's go through having to keep up with all the social norms of being part of society. Designing spaces that allow escape and distraction from everyday pressures becomes essential.
FACILITATING CONNECTIONS AMONG THE DISCONNECTED:
As we mentioned before, having fluid conversations are difficult when you don’t know what to say. In occasions that are too confrontational, sometimes families members end up not making time to call because they feel they are on a distant relation.
PORTAL TO NON-JUDGMENTAL SPACES:
It’s important for us to consider safe spaces for Alzheimer patients. Spaces without judgement and pressures that social stigma invites.
Our intervention invites multiple truths, where patients can have more autonomy and access this portal where they express their feelings, thoughts and reflections to whoever they wish, in a non judgemental way and regardless what is real or not.
Take for instance what happens when you pray or think out loud or meditate, these are all ways of connecting with yourself - we want this to happen through our device.