Seam — seaming memory and love with inclusive technology
Seam is a product-service system to connect individuals with early-stage Alzheimer’s and their loved ones through soft technology.
Both user groups can communicate with each other by creating a routine of exchanging memory through photos, videos and live video calls. As individuals with early-stage Alzheimer’s suffer due to their decline in cognitive and physical abilities, Seam helps them to connect with their loved ones remotely despite of their difficulties in using technological devices.
As humans, the need for communication is essential.
Over 800,000 individuals with early-stage Alzheimer’s live alone and they are more likely to experience faster cognitive decline compared to individuals living with a companion.
Through a rough remote user interview with people all around the world, we realized how the pandemic was affecting marginalized groups even worse. While COVID-19 opened up new opportunities for remote communication, some parts were still not technologically accessible for marginalized groups, including individuals with early Alzheimer’s. We discovered a mixed range of unfulfilled needs — a need for belonging, interacting and sharing meaningful experiences with loved ones — especially when they are alienated in the midst of social distancing.
We faced a lot of challenges, while learning more about the disease. Each day we discovered something new and redefining our own biases towards the phenomenon and how diverse a single disease can be.
“If you met a person with dementia, you’ve only met one person. In other words, each individual will talk, act, remember, and behave differently. Not simply because of the dementia stage, but because of how the disease will develop differently with each individual.”
_ Caregiver of a dementia patient
How might we support remote connectedness and togetherness between individuals with Alzheimer’s and their loved ones?
01. The proposal
A. Portal to the digital world
Seam consists of a portal and a camera connected to the TV set. While using the portal, users with Alzheimer’s can simply tap the button that lights up whenever they receive a message from their loved ones. This physical tapping experience allows them to easily enter the digital world. The loved ones can send either photos, films and voice recordings that can remind each other of past memories and help them keep in touch, effortlessly.
Due to Seam’s modular composition, loved ones can also have several usage options that they can choose from. They can only use a mobile app to connect or have the app and the portal as well, which provides a more connected experience with individuals with Alzheimer’s.
B. Combination of Asynchronous and Synchronous communication
“It's a communication with a different dynamic – it can be asynchronous and informal with occasional synchronous gatherings.” _ Niklas (Psychologist in Umeå Univesity)
The connection between users can be done both synchronously and asynchronously to create more space for voluntary participation and also to integrate the communication process into their everyday life in a more natural way.
Asynchronous way of communication
This asynchronous method of sending each other memories whenever they think of each other may not connect them exactly at the same time. However, this maintains both of them to constantly keep in touch by providing flexibility when it comes to communication.
Individuals with Alzheimer’s can record and send voice messages, while their loved ones can send voice messages, photos and video content. They can check the content received from their loved ones through a notification light in the portal device.
Both users are notified (in different ways because each use a different medium) whenever the other checks the content that they have sent. Loved ones who are comparatively younger than users with Alzheimer’s receive a notification on their mobile app that informs that users with Alzheimer’s are seeing what they have sent. They can also listen to the voice messages that their loved ones have sent and replay them as much as they want to.
After several tries of sending messages and connecting with each other asynchronously, they can enjoy their very moment of being together. When the two connect, they can enjoy different activities such as sing along, dance, or digital games based on their preferences. For example, users with Alzheimer’s can choose their favorite song and sing along with their loved ones. These activities can make up the absence of physical connectedness by building love and memory that create meaningful experiences between the two.
02. How did we do it remotely?
A. Step 1: Initial kickoff + debriefing the brief + ethnographic kit
We started off with 2 briefs, one from our course at Umeå Institute of Design called General Product Design and one from Microsoft Design Challenge. From the course, the focus was on creating togetherness at a distance in communities of practice, and from the Microsoft, our aim was to design for a healthier future.
Debriefing the brief:
In order to address both of the briefs, we interviewed medical staffs and patients who were in the non-COVID-19 field. Since most of the medical facilities were concentrated on COVID-19 patients, we wanted to focus on users who were “left behind” in this situation. We learned that if we start from marginalized groups and expand further, our concept could be applied to general users as well.
In total, we conducted 10 interviews with an ethnographic kit that was designed for a remote setting. This kit was used to help interviewees naturally express their daily life patterns in quarantine, especially related to their mental health.
Participants were journaling their activities for a day, taking photos and videos about their daily life during quarantine. Based on visual materials and notes, our team drew journey maps that illustrated their day.
This preparation step was used as preparation materials in our remote interview, when doing different activities such as Heaven & Hell Game and What-If? Framing.
As part of Heaven & Hell Game, participants were asked to place Heaven cards and Hell cards on their journey map. This helped us to identify both positive and negative parts that have changed before and after the outbreak of COVID-19. And for What-If? Framing, participants again placed What-If? cards on their journey map and were asked to imagine and construct the future after COVID-19. If you want to know more about the ethnographic kits and remote interviews methods — read more here.
B. Step 2 : Professional interviews + desktop research
After the interviews, we got a general overview of how individuals with health issues are coping with their diseases during this global pandemic. Among them, we found how pandemic situation was difficult for people with neurodegenerative diseases. They were severely affected since they could not continue with their therapy remotely.
Neurodegenerative diseases do not have an accurate cure, but can only delay the progression of the disease which makes regular therapy sessions even more important. Especially for people with Alzheimer’s, cognitive decline and depression is one of the key symptoms of isolation.
In order to know more specifically about Alzheimer’s, we interviewed various caregivers such as occupational therapists and family members of Alzheimer’s. We got involved in Facebook groups that support Alzheimer’s and Dementia, which mainly consists of caregivers and family members.
We also conducted vast amount of desk research because Alzheimer’s was a very specific field that was unfamiliar to us and complex in its nature. One of the most fruitful testimonies was The Spectrum of Hope by Gayatri Devi which was an optimistic view of the future of Alzheimer’s Disease. Along with basic symptoms and cure methods of Alzheimer’s, we also grasped a positive understanding of the disease. Trying to reinforce memory was not that important in terms of delaying the progression of Alzheimer’s, rather creating memorable memories with their loved ones was something more valuable.
We tried to differentiate our approach in focusing on what users with Alzheimer’s can do, instead of trying to enforce what they cannot do.
The other part of the research was about telepresence, inclusive design and aesthetics of interaction and how physical interaction and togetherness can be translated into the digital world.
C. Step 3 : Participatory Design + ethical questions
After our research phase about Alzheimer’s, we conducted a remote workshop with experts in this field. As we were structuring the workshop, we also realized how Alzheimer’s can be an extremely sensitive topic. Family members that experienced Alzheimer’s might feel reluctant to share stories that they have not yet fully recovered. The challenge for the project itself was the fact that users with mid to late stage Alzheimer’s were not cognitively stable enough to understand what they are going through if placed in a workshop setting, which leads to various ethical concerns.
As a result, we decided to involve ergotherapists and physical therapists who had previous experience working with their own Alzheimer’s patients suffering from the disease.
This workshop was not focused on generating ideas with participant — we put more emphasis on collecting different stories and diverse perspectives on Alzheimer’s. We asked participants to pick the most memorable patient and share related experiences. Each shared different therapy methods they tried and any particular stories they can remember with the patient. Then we conducted a future scenario session where professionals use Superpower Cards to propose any kind of new treatment methods that they practice for the same patient, if they were in this COVID-19 quarantine situation.
D. Step 4: Principles + Ideation
We’ve discovered that some common patterns were emerging as stories from interviews and workshops. We constructed following design principles to take into consideration during our next ideation step.
- The product-service system should create a shared experience that is positive, meaningful and memorable for all users.
- The interaction has to be intuitive, accessible and simple.
- The system should not discriminate users with age, disability or cognitive impairment.
- Users should not be required to have extensive prior knowledge to use the system.
- There should be no right or wrong way of using the product-service system.
- The interaction and appearance of the product-service system should look familiar, inviting users for interaction with prompting qualities.
Based on these design principles, we visualized our ideas using a program called Miro. Different ideas were narrowed down into two concepts and were used in our next step, which was involving users in a validation workshop with our initial stage concept.
E. Step 5 : Re-engaging participants + validation workshop
Our concept focused on how users with Alzheimer’s, especially those in their early stage can connect with their loved ones.
We created an interaction diagram of our proposal and a user story, indicating different stakeholders involved and how they interact with each other in different stages. Based on this diagram, we conducted a validation workshop with individuals whose family member is going through Alzheimer’s, ergotherapists and experts related to remote communication and interaction.
We first asked for a general feedback on the proposal and how they would use the service with their Alzheimer’s family member. This workshop was our prototyping testing stage, where we had a feasibility check of how our proposal could meet the needs of users in real life.
After a couple of form iterations, we also tested out different light feedbacks and color schemes that would match the interaction flow that will be suitable for users with Alzheimer’s.
F. Step 6: Prototyping with Arduino + 3D printed elements + textiles
In order to create a soft and approachable appearance for our final concept, we chose textile fabric as a cover material. We also used lights on the edges to make the product even more visually approachable. Instead of adding unnecessary interactions such as sound, lights were an additional factor that was not too disturbing but interesting enough for users with Alzheimer’s to respond.
The aim was to create an object that looks familiar, but at the same time having a clear connection to the technological world. The form resembles a radio, which creates affordance to push the button to record, send and receive messages. This created an intuitive and logical connection between the device and the TV, illustrating the difference of social presence and digital presence as well.
/adding a screenshot with a form exploration
G. Step 7: Video Storytelling
We used video as a storytelling tool to express our concept and convey our message.
What have we learned in 10 weeks?
- Language is power and it influences the way we think and act — being mindful of the words and labels we put is crucial for positive change in our society. It’s always a person with a condition — an individual with Alzheimer’s, not an “Alzheimer’s patient”.
- We learned that there is actually hope in this complex disease— it can be even preventable but people don’t seek help because they think that nothing can be done, that’s why is so important to spread awareness.
- Caregivers of Alzheimer’s who are often times family members, frequently report high level of mental stress. Thus caregivers had to be included as one of the stakeholders in our product-service system.
- How users interact with technology naturally exposed the cognitive state and this consequently illustrated how the disease progresses (without any other additional devices such as “tracking bracelets” or cameras around the house). As a result, there was no need to install or implement any other surveillance products that were present on the market.
- Conducting remote workshops was including an additional layer in communication. Although a remote setting expands the pool of participants that we can recruit, we had to consider the digital setting that may differ depending on each individual.