Both of you were caregivers for a person who had dementia. How did that experience give rise to this guide?

Ong Ker-Shing (OKS): Before this project, we had already been designing for users who are not the typical clients one imagines when entering practice… After completing  A Different Class, a book of ideas pushing the envelope on preschool designs, we began discussing with Lien Foundation what to work on next. Dementia came up as a pressing concern, and it was not just academic, but personal for us as my late father suffered from it…

From the initial discussions, we wanted to look at how to democratise design so people feel they can do it too. Our experience caring for my father taught us that dementia is unfortunately a one-way street at the moment. It is decline. It is inevitable. It is constantly changing. There are no design solutions that are generalised enough to help with all the changes to a person with dementia…

We noticed our family constantly came up with solutions that were motivated by our love for and knowledge of our father. A lot of other caregivers do that too and even share their solutions with others. There is so much of such innovation in care that is under the radar of big ‘D’ design. We wanted to create a book to highlight these solutions and this attitude.

Joshua Comaroff (JC): We noticed a lack of guides outside of the medical space on how to care for dementia patients. There are many great books with high-level design principles for dementia care, such as be patient centric, keep engagement active, make a space that is visually clear… but how do you actually do that? … [B]etween the design principles and actual experience, caregivers were already coming up with their own solutions by hacking.

Our idea was to marry the design principles with this treasure trove of inventiveness that has come out of necessity from all these caregivers who are underequipped and underpaid in every capacity. We wanted to create a primer to help people who are going through this process of caring for someone with dementia.

The guide is styled like a furniture and product catalogue, and many of the hacks are based on products that are commonly owned. How did your team come up with this approach and why was it appropriate?

JC: The sense was we needed something that was very general and accessible. If dementia designs and principles are arcane and expensive, how do we present them in a way that is affordable and available to more people? What is a byword of accessibly in design? That was when we arrived at the idea of the IKEA furniture catalogue. We mocked up a sample for a meeting with Lien Foundation’s CEO Lee Poh Wah. Before we could show it to him, he said: “We need something like an IKEA catalogue.” That was the moment when it was, “Boom!” It was incontrovertible alignment.

OKS: We also always turned to IKEA for our solutions. My father suffered from frontotemporal dementia and one of the symptoms was that he started losing connection to a sign and what it signifies. He didn’t know a knife was for cutting. He started associating water with his IKEA tumbler and only drank from it. These tumblers are cheap and accessible and so my aunts and uncles got them for their houses so my father could drink water when we visited with him.

The IKEA furniture catalogue is also highly recognisable. Everybody likes thumbing through the catalogue, and it was very important that our guide was not seen as elite or disempowering so that people would pick it up too.

A key part of your process was testing prototypes of the hacks with other caregivers. How did their input shape the final designs?

JC: There were two aspects of testing. One was learning from the experience of the caregivers, which was really important. A lot of the hacks were things that people had already tried. For example, we learnt from Shing’s mother to have two twin beds next to each other – one wrapped with a shower curtain – to manage a person with dementia wetting the bed. This way, you can just switch the person to another bed when it happens and handle the mess later.

Another form of testing was letting other caregivers try our hacks. The cool thing about hacking is that you are tweaking and not designing entirely from scratch. It was a very lively process of adjusting things for different conditions, bodies, and preferences. This was really the ethos of the project. It was a way of going against the notion of design as delivering final products, but rather thinking of it as a process of ongoing engagement with the physical world and objects.

The guide organises the hacks around two main themes of “Microworlds” and “Daily Rituals”. There are also interviews with healthcare professionals and caregivers. How do the contents of the guide address the needs of your audiences?

JC: The “Daily Rituals” theme addresses the temporal sequence of care. Someone once said that warfare is long stretches of boredom punctuated with short periods of terror. Care is very much like that. So, the hacks offer a structure of activities that becomes really important. The “Microworlds” section is about hacking the spatial relations of the objects with the environment, which is very important too. You could design a wonderfully efficient care station, but it could be marginalised if it is just isolated in the corner of the room.

OKS: We really believe that environment matters. It affects the way you feel and perform, and this guide makes that argument. Josh mentioned earlier that my father was incredibly sensitive to the environment. Everybody is. It becomes apparent when you are focusing on how they respond to certain things. The fact that the hacks in the guide can be done by anybody shows how you can improve your environment in many small ways. In this way, I think the guide reaches beyond the subject of dementia care, too.

Instead of experts offering ready-made solutions, your team served as facilitators by “helping caregivers to think like designers”. Is this an outcome more designs should aim for?

JC: On the one hand, we don’t believe that everybody is a designer. Design is really hard. The more you engage with design as research, the more you understand the complexity you are designing for. But we also want to acknowledge the adjacency of design intelligence to a natural human ingenuity. There are certain things that people who have not gone to design school do that are very, very close to how designers solve problems. With this guide, we acknowledge that there are these forms of design and creativity happening organically. As designers, we can draw them out, talk about why they work, and situate them. It is really design at its best: mediating spheres that don’t normally talk to each other…

OKS: I don’t think it’s about making everyone into a designer, but about rethinking the designer as a provider and the people who use design as just recipients. This guide is not about providing a set of instructions to carry out to have a perfect outcome. It’s about a thought process and empowering people with a mentality of hacking. With projects of this type, what’s really important is getting conversations going. Who would have thought we could talk about dementia and its unglamorous effects, like wetting a bed, in the context of the P*DA? What’s really important is that it becomes okay to talk about these things, because frankly all of us know somebody who is going through dementia.