In my project, Designing for people with dementia, we purposefully decided to break away from the above mentioned approach in HCI and design, we embraced the critical dementia lens, affirming that the use of technology and design for PwDs should adopt “the emotional, embodied, and cultural aspects of interaction with technology” (Lazar et al., 2017). These are some of my reflections of our process.

Ethical considerations

As Hendriks et al. (2013) denote, PwDs have “rarely been directly involved in the design process and most technology development has been done via proxies”, like their informal caregivers (usually partners or close family), friends, etc. Given the fact that PwDs’ informal caregivers are more vocal, their needs end up being met instead of that of PwDs (Astell, 2019). Additionally, pervading societal views around PwDs place them as “deficient and declining” individuals (Lazar et al., 2017). Thus, it’s no surprise that a trend in the Human- Computer Interaction (HCI) and design fields is to use technology to fill a gap caused by impairment or “help” improve the lives of PwDs (Rogers et al., 2013). This compassionate approach, though well-intentioned and altruistic, posits questions: designing to “help can inadvertently create a power dynamic that frames people with disabilities as worse off” (Lazar et al., 2017). Indeed, design and technology have had a 3rd person perspective when creating technological interventions that have a functional goal to “help”, further problematizing disabilities or emphasizing frailty. An example is the design of Ambient Assisted Living (AAL) systems, where technology is targeted as an “assistive” monitor or keeps an eye on the person using it while sharing the data with family or carers. As life-saving or well-intentioned this design can be, they also raise ethical & moral questions around consent and as to who the technology is really serving. This also helps maintaining the rhetoric that PwDs and, more generally, people with disabilities, are a burden of care or financial burden for, forgetting their needs & wants: “and that they might be more interested in having social contact with others, a sense of belonging to a community, a sense of giving something back to society, and ways to be actively engaged in their lives than having their health and movements monitored” (Rogers et al., 2013).

We decided to deviate from this trend and instead, focus on creating engagement through a meaningful leisure activity. As we decided to break away from the above mentioned approach in HCI and design, we embraced the critical dementia lens, affirming that the use of technology and design for PwDs should adopt “the emotional, embodied, and cultural aspects of interaction with technology” (Lazar et al., 2017). This helped us focus on the well being and quality of life of young PwDs first and foremost and, only afterwards, that of informal carers. From this perspective, situating design and technology to a meaning-making context would help us shift from a functional approach to an emotional and relation-building approach, a direction that supports the idea that PwDs are people first of all and that they are not to be viewed as a clinical subject. Through this lens, multisensory experiences, embracing emotion, having a physical and embodied interaction while creating meaning are at the core of design.

This is the reason why we created the Touchbox, a connection & musical interface. It invites a PwD and their informal carer to sit together and generate music through physical contact, embedding a multisensorial experience while connecting both stakeholders on an emotional level. The interface consists of 2 sensors at the top of the box, close to each other. It generates the music when both the PwD and their informal carer put their hands on top of them, if the hands are removed it stops playing. It creates thus an embodied form of participation that establishes a physical connection and sense of togetherness in order to collaboratively play the music.

To know more about our research & design process, read the study case.