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PhD Research

LUCA School of Arts
KU Leuven 





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Immersion into the lives of people with dementia

Auto-etnographic reflection of contact moments with people with dementia 

At the start of the research Covid-regulations prohibited direct contact with PwD, thus secondary sources (e.g. movies, articles) were used to gain insight into the lives of PwD. Afterwards, the first author of this paper visited PwD for a year in different contexts (e.g. at home, a day care center and a care home; from early diagnosis to the more advanced stages; elderly and people with young onset dementia) in weekly sessions. These interactions, observations and interviews with PwD gave the first author, who had no prior contact with PwD, the opportunity to study her own development of an empathic understanding for PwD. Moments of auto-ethnographic reflections were documented via illustrations, photos and videos, which were later clustered to identify elements influencing this empathic understanding. 
An empathic understanding was established by going through a process of (1) discovering what it means to have dementia (i.e. through media), (2) having multiple encounters getting to know PwD and their network of (in)formal caregivers, to end with (3) an established empathic connection (i.e. designer-user relation) with PwD who she shared similarities with (e.g. same age as her parents). Media gave an insight into the progression of the disease and its influence on PwD and family, in comparison to the short encounters with PwD where only the current stage of dementia could be observed. However, media alone could not enhance an empathic understanding for PwD and during the first encounters it was still hard for the first author to connect. Only when the first author met PwD and family-members with similarities to herself, could she relate and internalize PwDs experiences. During this process of empathizing with PwD, the first author often needed moments of individual (e.g. drawing, writing down, editing photos and videos) and group reflection (i.e. conversations with others) to detach from the PwD and process the experiences. Reflecting on ‘what happened’ increased empathic understanding


Literature review

Literature was reviewed using search-terms like ‘handover approach’, ‘design for dementia’, ‘empathic design’, ‘transfer of experience' in Google Scholar. Papers were evaluated and included in the review on their ability to answer one of the following research questions: How can an empathic understanding for PwD be gained without having direct contact with the end-user? Which examples of tools and approaches transfer an empathic understanding for PwD? The final selection included 50 papers, which after clustering gave insight into three ways empathy is gained other than by having direct contact with the end-user. The first way is by using a designer's imagination in order to empathize with the end-user [13]. Second Smeenk, Sturm and Eggen describe the use of a representative of PwD, a ‘principal designer’, having direct contact with PwD and transfer these experiences to the design-team [23]. Choosing a principal designer from the design-team is beneficial in comparison to the use of an external proxy because of his/hers understanding of the team structure and company atmosphere [14, 22, 28]. Third an empathic understanding is established by going through four phases; (1) discovering the users world, (2) immersing into the users world, (3) connecting with the user and (4) detaching from the user in order to design for the end-user [21].  
In the 50 papers, 30 tools and approaches (i.e. tools used in the design context like a customer journey to visualize product-use, or in the dementia context like VR for health professionals to experience aspects of dementia themselves) were found and clustered. Three tools and one approach were selected for further research because of their potential to transfer an empathic understanding for PwD in the design context; (1) personas are a commonly used tool in design practice to keep in mind the user for the entire duration of the design process and literature suggests that empathy directed towards one person from the user-group can lead to an empathetic understanding towards the entire population [19], however the use of personas is often criticized for representing stereotype interpretations of the user-group [9, 16], (2) storyboards trigger designers to imagine product-use, combining the designers’ empathy towards the user with their own viewpoint as a designer [14], (3) life story boxes contain artefacts that physically represent the life of a care home resident for staff to gain a deeper understanding into the preferences and interests of the residents [4], and in (4) the empathic handover approach a principal designer has direct contact with PwD and transfers these insights to the design-team by making use of empathic questions (i.e. questions to relate to PwDs experiences) and role-play, followed by an ideation session [23]. In the expanded empathic handover approach an evaluation of the outcomes from the ideation session is added to the approach [25].


Iterative process in the educational context

During an iterative process, prototype handover approaches were evaluated on their ability to transfer an empathic understanding for PwD in the educational design context. Five workshops were organized in two different countries with groups of 4-16 student-designers with little to no prior experience with PwD. In all five workshops the first author of this paper took on the role as principal designer (i.e. defined in the research as one of the three ways to gain an empathic understanding for the user-group when direct contact isn’t possible) and one of the other authors (i.e. who have more than ten years of experience in the context of design for dementia) took on the role as the second principal designer. 
In the pilot workshop designers used empathic questions to compare their own experiences with those of PwDs, however the designers didn’t connect with PwD. The second and third online workshop combined empathic questions with personas (i.e. biography, stories, photos, handmade drawings and videos) based on PwD the first author met during ethnographic research, and showed the challenges of establishing an empathic understanding during one short moment. The fourth handover workshop made use of handover boxes (i.e. boxes containing biographies, stories, photos, videos and objects made or used by PwD), which encouraged the designers to imagine and connect with the user-group. Lastly an online session using empathic questions, was followed by a workshop with the handover boxes. Dividing the handover into two workshops gave designers more time to reflect and develop an empathic understanding.