APPLYING TECHNOLOGY IN A HYBRID-FASHION TO CREATE DEMENTIA-INCLUSIVE COMMUNITY SPACES

Elaine Czech, University of Bristol, Bristol, England, elaine.czech@bristol.ac.uk

Abstract

While there is currently no cure for dementia, socially prescribing activities can enhance wellbeing for people living with dementia (PLWD). However, accessibility to such activities can be hindered by location, being unaware of activities, scheduling issues, or lack of interest in the specific activity. The COVID-19 pandemic further complicated accessibility and changed how coordinators of such programs thought about technology. This PhD research explores how technology can improve accessibility to community spaces and programs for PLWD and their informal carers. The first study involved understanding how technology used for social programs changed during the pandemic and developing guidelines for how program coordinators and technologists can adapt and develop technology for disseminating social programs. The current study aims to discover what elements may be necessary for spaces and programs to feel accessible for PLWD and how these elements can be translated or manifested through technology.

Introduction

Currently there is no cure for dementia [41]. Instead, medical professionals and those working for organizations that assist those living with dementia promote social and continued community engagement to slow the disease's progression [34]. Social prescribing is now considered a non-medical intervention that links "clinical practice with activities and support services within [a] community" [16].Some socially prescribed programs provide a cultural, historical, or social service to people with dementia (PLWD) and their informal carers. Such activities are important for both PLWD and their informal carers since social interactions within public spaces can provide them with "a sense of normality" [11] and prevent social isolation [1].

While such programs for PLWD have been around for more than fifteen years, social prescribing was only implemented as a form of care in the UK in 2019 [17]. Technology has played a significant part in expanding the outreach and recognition of such programs. Technology helped Meet Me at MoMA (The Museum of Modern Art in New York), one of the first pioneering social programs for PLWD, achieve national recognition [35] and disseminate a Web-based manual for other museums to hold similar programs [38]. Since the COVID-19 pandemic, the role of technology in social programs has only increased. Many organizations that provided in-person programs before the pandemic chose to adapt their programs to use technologies like videoconferencing. While some of the use of Zoom social programming has diminished since the need for lockdowns has ceased, many organizations have chosen to continue some form of virtual or online activities for disseminating social programs. While keeping some form of virtual or online provides an organization with program stability and flexibility should another pandemic happen, how to design and guarantee that such programs remain able to provide the same social benefits as in-person still requires further research.

As of writing, HCI research related to the impact of the pandemic on online social interactions for not only those living with dementia but older adults in general [42], is limited. Sin et al. [42] noted that even for those without cognitive impairments issues with access to digital devices and the requirement of technology to socialize can be detrimental. Mynatt et al. [32] researched how an in-person empowerment program for people with mild cognitive impairment was adapted to asynchronously online delivery. However, this had to evolve to include synchronous video calls over Zoom, and even with synchronous calls participants still required more facilitation to have meaningful interactions. Thus, there is still room to improve how social aspects of programs are designed for when the program is facilitated by technology.

Additionally, before the pandemic, Dai and Moffatt [11] looked at how technology could support a reminiscence activity in a public library for carers and their loved ones with dementia. While the pandemic put a pause on thinking about designing technology to complement in-person activities, the world is perhaps reaching a point where once again, social activities for PLWD are being held in public spaces. Moreover, within HCI, there is little exploration into technology used by those with mild to moderate dementia diagnosis. One exception is Dixon, Piper, and Lazar's [15] exploration into how people living with mild to moderate dementia use technology for self-management. This research suggests that societal pressures affect how PLWD use technology to navigate interpersonal relationships. This PhD project aims to build off these two examples by combining the knowledge gained during the pandemic to consider how to design technology that helps with the accessibility of public spaces and programs for people with mild or moderate dementia.

The objectives of this PhD project are:

• Identifying and highlighting the complexities related to designing social programs for PLWD.
• Providing a design checklist to assist with developing technology for disseminating social programs.
• Designing a technological solution that creates a hybrid community space inclusive of PLWD.
• Verifying items, on the checklists mentioned above, by implementing a technological solution in a community space.

Related Works

HCI and PLWD

Overall, dementia and HCI research has helped us to understand what type of interactions and designs are appropriate for those affected by dementia [19, 20, 29, 31, 46, 47]. Researchers have also advocated for approaches that allow the person living with dementia to have agency and express their personhood [5, 18, 27, 29]. However, most of the work thus far has focused on those with moderate to late-stage dementia living in a care home.

Hodge et al. [23] examined how a PLWD and their loved ones created new memories on public outings. Since they were in more advanced stages, the purpose of this research was to enrich the relationships between the person living with dementia and their loved ones and not the interactions between participants and the public. In the past few years, researchers have focused on encompassing a broader societal perspective and working with more people with mild to moderate dementia [12, 15].

Most recently, Dixon et al. [14] worked with those newly diagnosed or in the early stages of dementia to understand the barriers they face when accessing information on the internet. They found that more work is needed to make the online experience accessible for PLWD so they do not need to rely on a proxy. However, as Bennett et al. [4] and Storer and Branham [30] have pointed out, there are potential pitfalls to pushing an independence narrative onto assistive technology. Storer and Branham [30] found that the desire for creating independence has caused assistive technology to follow an institutional framework in which power is removed from people in care and their carers. While Bennett et al. [4] proposes that as no human is truly independent, it would be more beneficial to design for interdependency and support mutual dependence on others and technology. However, little work has been done on designing for the interdependent relationships that involve a PLWD.

HCI and Social Programs

Often social programs for PLWD involve art appreciation or making/crafting through an institution such as a museum or care home, although Kelson et al. [26] found that enjoyment of public art was also beneficial for PLWD. Their research suggests that social prescribing does not need to occur within an institutional setting and can be informal. However, Thomson et al. [44] found that museum-based interventions allowed participants to interact with a range of people not typically encountered. Compared to informal interactions, interventions occurring within a museum increased the likelihood of short-term or long-term bonding between participants.

While HCI has explored leveraging technology to make museums more accessible and interactive [7, 37, 45] there is little research on how to support the social aspects of visiting a museum for PLWD. Ryding [39] designed a two-person interactive app for museums and found that this social dynamic allowed participants to create a more bespoke experience and explore the museum more playfully. In contrast, Clarke et al.'s [9] research on interactive exhibition design explored distributed control, finding enforced cooperation allowed participants to have more enriched social interactions by getting them to focus on others. Benford et al.'s [2] work stimulated emotional responses and enabled art museum visitors to self-reflect by attaching narratives and provocative questions to artworks. Interestingly, while the technological integration received mixed emotional responses, postcard printouts, which displayed representations of each participant's emotional data, proved to be a powerful stimulus. However, beyond museums there is not enough research on the application of technology to improve the social accessibility of public spaces, not only for PLWD, but for older adults in general [36].

HCI and Community-Based Design

While research on improving the accessibility of public spaces for PLWD is still emerging, community-based research within HCI has helped designers develop strategies for working within and for a community. Although none of the participants had dementia, Harrington et al. [21] held design workshops with Older African American Adults at their residential living home. They found that the workshop's situated context allowed participants to focus on significant sociocultural issues that affected their community rather than individual solutions. Sabiescu et al.'s [40] work with the Kalderash Roma community similarly found that community-based participatory design is not only influenced by the participants' culture but can also affect local relations and power structures. The Kalderash Roma community maintains a social hierarchy that goes against the inherent nature of participatory design, which promotes equity.

When considering technology use within the community, Dillahunt et al.'s [13] research on community-based mentoring found that mentors often had to be flexible with their technology use since not all participants had stable access to devices. Such a range of technology use is often true for older adults. Richards et al. [36] and Sin et al. [42] found that during the COVID-19 pandemic, some older adults could adapt to using technology to remain connected to their community and loved ones while others struggled. Richards et al. [36] specifically found that even those that adapted to using technology like Zoom refuse to use it now that they no longer have to isolate themselves from others. Sin et al. [42] concluded that the pandemic exasperated the digital divide providing a glimpse of the future we may be heading towards as more organizations, such as banks [28], go fully digital. Therefore, research is further needed to understand the digital and sociocultural needs of older adults and PLWD within their community spaces.

Methodology

The aim of this PhD project is to understand the complexities of social programs and the technology used to disseminate them, in order to understand the design requirements for organizing, developing, and/or designing hybrid community spaces that are inclusive of PLWD and their informal carers. I define hybrid as a community space that is both online and in-person, but I do not necessarily mean that activities or programs are happening synchronously. For instance, this could refer to an online community forum that is in some way connected to an in-person program.

Study 1

The purpose of my first study was to answer the question: How might we design virtual spaces so that they provide for the social needs of those living with dementia?

By answering this question, I hoped to find out what allowed a social program to meet an individual's social needs, how those social needs were met via virtual delivery, and where technology might need to be better adapted to increase social benefits. I identified and characterized the interdependencies that assist with the delivery of social programs by interviewing program coordinators and holding two focus groups: one with PLWD and one with carers.

Six participants who self-identified as living with dementia and three of their carers were recruited through an Alzheimer’s Social Club. Since participation in the Social Club requires an early-to-mid-stage dementia diagnosis; participants were not asked to share their specific diagnoses. The participants were interviewed as a group since they were comfortable and felt safe discussing various topics with each other and encouraged each other to share. The group interview was also chosen so that it would mimic the feel of a Social Club gathering. Additionally, program coordinators from various social organizations were recruited to be interviewed. Coordinators were recruited from the US and UK due to having similar social services available for PLWD. Coordinators in the US were recruited via word of mouth, while those in the UK were found via groups listed on the Dementia Engagement and Empowerment Project UK [25], and were recruited via email invite. Fifteen semi-structured interviews were conducted with seven program coordinators from the UK and eight from the US. While each coordinator’s job role varied slightly, most oversaw managing and designing accessibility programming.

I applied a critical realist [6, 33] approach to gain a thorough understanding of social programs. To achieve this, I initially examined my data using constructivist grounded theory [8] in order to construct initial themes. The themes I identified in all aspects of social programs were Reliance and Support. I felt that these themes aligned with Bennett et al.'s [3] idea that all people form interdependencies by contributing and relying on community support and assistance. With Bennett et al.'s [3] interdependency framework, I then reexamined my data to look for causal mechanisms behind the interdependencies I had noticed during my first pass-through of the data.

The findings from Study 1 expanded upon Bennett et al.'s [3] interdependency framework in that I found that beyond interdependencies between individuals (which I categorized as social) there are also organizational interdependencies. Organizational interdependencies provide the context that determines the nature of a program and whether a program exists. While, person-centered strategies within dementia-specific programs led to social interdependence between the participants and program coordinators. "Technology," in a very broad sense of the word, was not only a point that can strengthen social interdependencies, as Bennett et al. [3] suggested, but potentially has the ability to cause these two types of interdependencies to overlap and influence one another. Besides expanding the interdependency framework, the findings from study one also provided a design checklist for designing programs and virtual spaces (see tables 1 and 2).

Action to be Done	Questions to Keep in Mind	Accomplishing this Action
Highlight location strengths	is the program in-person/ onsite?	- create greater social engagement -make it a sensory experience -raise awareness about the organization by bringing people in
	or virtual/online?	-Personalize -Customize -and localize content
Complementary Programs	does the program incorporate continuous use of in-person and virtual?	-participants should not be constrained by mobility, distance, or a lack of access to technology - program offering and accessibility should be reliable
	is there an overarching program narrative?	-celebrate repetition by building it into the program’s narrative

Action to be Done	Accomplishing this Action
Participant Share their Individual Sensory Experience	Participants engage with the space/objects around them and their senses
Objects and/or Technology Connect Different Locations	Objects are transported between locations creating a tangible memory or potentially asynchronous technologies create a link
Social Agendas that Appropriately Match the Locations	Focus on empowering PLWD during virtual and support bonding and inclusion of informal carers when in-person

My findings suggested two things: 1) we need to rethink how we design blended programs for PLWD and 2) we need to design virtual spaces so that they better promote appropriate blended programs.  From my findings I concluded that the concept of blended virtual/in-person programs needs to be reexamined in the context of social programs for PLWD. Virtual should not be thought of as simply a replacement or equivalent to in-person but as a complementary activity for building and sustaining interdependencies. The need for complementarity arises from the fact that both types of spaces have different strengths. Designing for complementary programs additionally allows for programs to meet participants' other needs (besides just social). For instance, providing program stability, flexibility, and even diminish stigma about the disease. Furthermore, since there has been little research on how to maximize the social benefits of virtual programs for PLWD, I also developed a short checklist to highlight how program coordinators and technologist can potentially adapt or redesign synchronous virtual programs to better suit the needs of PLWD. When organizations assume a one-to-one adaptation of an in-person program to any readily online platform will have similar positive effects this potentially limits social interactive for PLWD [24]. Such adaptations do not consider that readily available platforms are designed for a hyper-cognitive society [43].  Further information on my findings from this study are in the technical paper that is to be published at ASSETS '22 titled: “Just like meeting in person” - Examination of interdependencies in dementia-friendly virtual activities [10].

Study 2

The purpose of my second study is to answer the question: How might we design a hybrid community that includes people living with dementia and their informal carers?

By answering this question, I hope to find out how those living with dementia and their carers would like to engage with community spaces, what they envision makes a space inclusive of PLWD, and what role they envision technology could have in making a space inclusive. I will identify design requirements for making community spaces and programs more inclusive of PLWD through a research-through-design approach [48]. For the first phase, I conducted five exploratory workshops in various public spaces around a mid-sized Southwest UK city. These locations included a history museum, art museum, community farm, church, and virtually. Each location had two-five participants for a total of fourteen participants (6 PLWD/6 informal carers/2 social program coordinators, 7 women). To recruit participants, we sent flyers to various dementia and older adult associations around the city, attended dementia-specific programs (such as memory cafes) to present briefly our study, and we also relied on snowball recruitment. Those with early-stage dementia, their informal carers, dementia advocates, and dementia care coordinators were recruited since our focus was on those with some familiarity with technology and/or experience attending or promoting virtual programs at some point. After completing our exploratory phase, we then moved on to phase two: co-design. Participants for this phase were recruited with the aid of one dementia cafe program coordinator. Part one and two of the co-design phase were held at a location more readily accessible to participants while part three was then held at the locations for which participants were designing.

Phase 1: At the five locations we held a two-part workshop. Each part was done on separate days with at least two weeks between each of the dates. For each location we held parts one and two at the same time (either both in the morning or afternoon). For the virtual and the church spaces we condensed the two parts into one session due to availability constraints.  Part one looked at motivation within the context of the space by exploring what motivated PLWD, informal carers, and program coordinators to make certain choices in regards to that space (i.e., Why did they come to a space? Why did they come back?). Part two then looked at what role technology played in the participants lives and how it might fit into the location.

Phase 2: I chose three of the five locations to move forward with co-designing site-specific technological solutions (the art museum, history museum, and city farm). These locations were chosen because they seemed to have multiple potential design entry points since they offered more activity variety. Part one determined what design opportunities each location offered and then how technology could be designed to help these opportunities be manifested. Part two will then explore prototyping of these technological solutions. Part three will then be an evaluation of the prototypes onsite.

Study 3

The purpose of my third study will be to answer the question: how might we implement hybrid design into a space so that it improves community inclusivity? By answering this question, I aim to understand which design changes make crucial differences in improving people's sense of community belonging, how such changes affect the overall community, and what such changes mean for creating wellbeing and dementia awareness. I plan to choose one or two of the locations used in Study 2 to design either a program or space. The design work will be conducted through participatory design and, for continuity purposes, I plan to recruit from participants who joined Study 2.

Status of the Research

At the time of writing, I have completed Study 1 and have begun Study 2. Study 3 has yet to be determined as it will build directly off of Study 2. I will have more of a vision of how I plan to conduct Study 3 by mid-2023 as I plan to conclude Study 2 in May 2023.

Study 2 is still in progress, and as of writing I have completed of the first workshop parts and have move on to the co-design phase. However, it is too early for me to share any tentative findings. Thus, I still need to finish Study 2 and design and execute Study 3. I still have roughly one and a half years left in my program. At the Doctoral Consortium I discussed the tentative findings from the exploratory workshops I conducted. I received advice on how I might better frame my research and its importance to the HCI community.

Envisioned Contributions

Study 1 has already made three primary contributions to the ASSETS community by: 1) identifying and highlighting the complexities related to designing social programs for PLWD; 2) grounding and expanding the interdependency framework in this context; and 3) providing a design checklist to assist coordinators and the ASSETS community with developing technology for disseminating social programs. This study added to the substantial research already conducted with PLWD within HCI by focusing on people with early stage dementia. This study also focused on social programs designed for PLWD a subject that very few have studied. I hope that this research encourages others to explore such social programs and the growing ways technology is being used within them.

For Study 2, I aim to be able to contribute to the growing research on community-based design and methods for conducting similar workshops with early stage PLWD. I anticipate through the iterative design process of the workshop being able to provide designers with insights into what activities worked best. I plan to compare and contrast how different community spaces within one city envision dementia-inclusivity and outline ways designers can build in flexibility to form programs that match a space. I also intend with this study to contribute a set of design requirements for designing different types of technology to make community spaces more inclusive. Finally, I hope that this study generates examples of such technologies as designed with PLWD and their informal carers.

For Study 3, I aim to be able to provide an example of designing technology within a community context that is able to promote inclusivity. I plan to use participatory design methods [21], and add to this research body by focusing on members of the dementia community. Again, I anticipate that this work will add to the research already done on participatory design and dementia [22]. I also plan to  further develop the interdependency framework [3] to determine whether technology design is able to increase outreach and impact as outlined in Study 1. Thus, I believe this study will also help expand the ASSETS community's understanding of interdependency and the role of technology. 

Overall, I hope that my dissertation is able to contribute to accessible technology by expanding research on dementia by looking at community-based social programs. Such research is meant to further expand how technology can bring together and maintain community care models. I hope that by making implementing the design from Study 3 so that it is accessible to not only PLWD but a wider community  will raise awareness of the disease and decrease stigma. Additionally, I hope by expanding community outreach through technology this work will help communities understand and cope with the progressive nature of dementia. With this PhD project I hope that the design methodologies that I am able to produce will have value for designing programs or technologies for disseminating programs for not only PLWD but perhaps other neurodivergent populations as well.

Acknowledgments

I would like to thank my advisors, Oussama Metatla and Paul Marshall for their guidance and the EPSRC for funding my PhD.

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About the Authors