Development of a Handover Approach in Design for Dementia

The need for a handover in design for dementia

To design products for PLWD 1, designers have to foster an understanding for the PLWDs experiences 2. The involvement of PLWD in the design process enables designers to establish a deep designer-user relation resulting in a more successful outcome 3, 4. However there are limitations to their involvement; the vulnerability of PLWD, impairments of dementia, the lack of empathy of the designer… 5, 6. These limitations can result in an unbalanced designer-user relation that can burden PLWD 7, 8, 9. In addition, literature suggests that including PLWD in the design process requires an additional investment in time and resources 10, 11,12

Although the inclusion of PLWD should always be considered, handover approaches are needed when it’s hard to include PLWD in the design process, or in times when contact with PLWD is denied (e.g. Covid-19). There are existing means (e.g. marketing data, quantitative reports, stereotype interpretations about PLWD) to communicate about PLWD to designers, but giving them little understanding into the lives of PLWD 13, 14. The aim of the doctoral research is to develop accessible handover approaches to transfer the experiences from PLWD, to members of the design team who are unable to meet PLWD.

Ethnographic research and literature review

The doctoral research started with ethnographic research and a literature study to provide a framework for the creation of handover approaches. PLWD were visited on a weekly basis within different contexts (e.g. at home, a day care center, a care home; from early diagnosis to more advanced stages; elderly and people with young onset dementia). Through these interactions, observations and interviews, insights were gained into multiple aspects of the everyday life of PLWD. These lived experiences were visualized with illustrations providing moments of auto-ethnographic reflection.

Simultaneously literature was reviewed, focusing on relevant topics to the doctoral study (e.g. dementia, empathy in design, handover tools). Commonalities were identified with the insights from the ethnographic research. Both addressed several points of concern in the design of handover approaches mainly due to the diversity and complexity inherent to dementia. These concerns were categorised and three main challenges emerged;

1. The first identified challenge revolved around the influence of the designer on the transferred experience

The principal designer (i.e. the designer with experience with PLWD) has the task to develop a relation with PLWD and transfer these experiences to other members of the design team. The principal designer has to understand the structure of the design team in order to tailor the handover approach and represent PLWD at design-team meetings 15, 16. Since not all designers possess these skills, a challenge is deciding who will perform this task.

2. The uniqueness of each experience with PLWD

A successful transfer of experiences is difficult to achieve 21, but transferring experiences with PLWD makes it even more challenging 22. During the weekly visits with PLWD an ‘uniqueness’ with each PLWD was perceived. The differences (e.g. personality, context, stage of dementia) between PLWD, turns every designer-user relation into an unique experience 23, 24, 25. The second concern deals with the uniqueness of each PLWD, opposite to the design of products for a wide user-group of PLWD. Should the handover approach transfer this uniqueness? Or would it be beneficial to generalize experiences with PLWD?

3. The search for approaches that are able to transfer these experiences

Which approaches support the transfer of experiences with PLWD from the principal designer to other designers? Future research will experiment with different media (e.g. literature, documentaries, video, storyboards, personas), and existing handovers; experience prototyping 26, handover meetings 27, ideation workshops 28, and the use of an external specialist 29. These existing approaches lack testing in the context of dementia. The only tool known to handover insights from PLWD to designers is the empathic handover approach 30, but further research is needed for this approach to be used in the design process of products with PLWD as the main user 31.

A framework for handover approaches

The initial research provides a framework that supports the design of ways to handover experiences with PLWD. In this paper the focus lies on the creation of a 10 min video, as a handover tool. This choice will be explained using the framework of the three challenges;

1. The influence of the designer on the transferred experience

A video format was chosen to transfer the experiences from the principal designer during the ethnographic research. To stay as close to the original experience of the PLWD as possible, first an empathic understanding between the designer and PLWD was established by regular visits. Secondly, video footage without heavy alterations shows the original experience, opposite to illustrations visualizing an interpretation of an experience. And thirdly, a video can show the multiple sides of dementia instead of focusing on the stereotype interpretations often seen in the media. Instead of contributing to the stigma surrounding dementia 32, the aim of the video is to transfer insights into the lives of PLWD.

2. The uniqueness of each experience with PLWD

Literature suggests that when empathy is built towards one representative, this can lead to an empathic attitude towards the entire group 33. Designing for one results in an individual outcome, but often this outcome can be scaled to a wider group of PLWD 34, or the empathic attitude provides inspiration for more general products 35, 36, 37). On the other hand the video can generalize some similar aspects of the larger group of PLWD (e.g. user and care requirements) 38.
The video became a combination of the two; portraying the general aspects of dementia (e.g. stages, contexts, requirements), while recognising the personhood of each PLWD (e.g. personality, interests, aesthetics). Additionally by showing multiple PLWD in the video, the risk of confronting the viewer with one person that might evoke specific feelings, is avoided 40.

3. The search for approaches that are able to transfer these experiences

A video leaves room for flexibility to be used in many professional design contexts (i.e. number of designers, company atmosphere, product category) 41. The format can be easily integrated into the already existing design practice 42 or as part of existing handover approaches. Taking Covid-19 restriction into consideration, a video installation is suitable for both physical and online purposes.

CONCLUSION

In this paper a framework of three challenges was presented for the creation of handover approaches. A 10 min video43 was made as a concrete example to tackle the three concerns raised in the framework. The panel members from the CA²RE / CA²RE+ Ljubljana conference watched the video as a materialisation of a handover approach to start a larger discussion on the topic at the conference. The panel members agreed that the video transferred an overall respect and dignity for PLWD, while showing the uniqueness of each case of dementia (i.e. 2nd concern). By not showing the faces of the PLWD in the video, a viewer establishes an empathic band with the PLWD portrayed and automatically fills in the gaps with their own relatable experiences. However the video was influenced by the designer; use of framing, color, background sounds, pace of talking… (i.e. 1st concern). The main feedback from the panel members was to analyse the PhD students' own way of communicating about PLWD and transferring her experiences with PLWD. This analysis will provide a better understanding into the abilities of approaches to transfer experiences (3rd concern).