Designing for Social Citizenship in the Everyday Human Built Environment

Abstract:

This article proposes moving toward a strengths-based view of aging, which recognizes that older adults can enact their social citizenship through participation in activities and places in the public space that they perceive as being culturally, personally, and socially meaningful. Using a Stockholm-based case study, it considers the need for spaces, places, and tools accessible to people who have cognitive decline to enable social citizenship, including age- and dementia-friendly communities. The case study, empirical research, and policy are discussed in relation to tools for mapping participation in a “smart” and digitalized society.

Key Words:

age-friendly, dementia-friendly, design, technology, occupational therapy, social citizenship, social participation

… “the city could be considered as a text … its user could be defined as the interpreter of urban space … the city-text is made of people and things, of their relations and interactions.”

(Greimas, 1979, as cited in Terzoglou, 2018, p. 122)

Designs for public spaces, places, and tools construct a storyline or script for how Johan (from the case study below), and all members of society participate in their everyday lives in the public space (i.e., outside the home). Such storylines influence not only the way we speak about aging but also can enable or disable older adults like Johan from participating in activities in the public space to enact their social citizenship. Social citizenship refers to “a relationship, practice or status, in which a person with dementia is entitled to experience freedom from discrimination, and to have opportunities to grow and participate in life to the fullest extent possible” (Bartlett, 2016, p. 37).

Case Study: Johan Finding and Losing His Way

Johan, age 68, was diagnosed with Alzheimer’s disease 2 years ago. He is a widower with two children who live far away, so he cannot rely on them to help him with the everyday activities of managing the home, finances, or grocery shopping. “I love my apartment in the city, I’ve lived here for years, and I want to keep my independence as long as I can,” Johan says, although he is aware that the disease is progressing. He loves doing activities outside the home, including going for walks, meeting with friends, and visiting museum exhibits. Going out daily in his local neighborhood has become increasingly important as he is no longer able to travel the long distance to visit family.

Lately, however, finding his way around has become doubly problematic. First, while he uses landmarks to find his way, those landmarks once thought stable are changing, a new block of apartments has replaced the community center, the post office closed, and there are several new stores that he no longer recognizes.

Second, everyday activities such as grocery shopping are increasingly challenging. He has difficulties finding the groceries he prefers, especially when products are rearranged, or when the layout of local stores change. Previously, Johan could manage these minor changes easily without much thought, however, he doesn’t feel as quick as he once was and with the increase of technologies such as self-service checkouts at stores, online banking, telemedicine, and automated travel passes on smartphones for public transport, he worries he will not be able to keep up.

Modern technology, rather than enhancing accessibility, is making things more complicated and his neighborhood less accessible. Johan’s daughter suggested that he get his medicine delivered and even have his groceries and newspaper delivered. But Johan enjoys going out, getting fresh air, choosing the groceries himself, and speaking with the store assistants.

Recently, Johan’s daughter has bought him a smartphone and a smartwatch to help him find his way and keep in contact with her. Johan wonders, “Will this really help? I’ll have to remember to charge and take the smartphone and smartwatch with me every time I go out, there are so many steps to make sure they work and I’m not sure how I feel about being tracked.”

Johan exemplifies the multiple ways the powerful unspoken language of human-built designs (from urban environments to devices) affords or hinders the ability of older persons to maintain full adult personhood and social citizenship. Social citizenship highlights the inherent need to participate in culturally, personally, and socially meaningful activities and places in the public space. It also expresses our ideals of freeing older persons from discrimination, whether explicit or implicit. While recently the “normal” script for participation has been adapted to consider affordances for physical accessibility in design and language, there remains a gap in evidence-based knowledge needed to inform interventions and design that accommodate cognitive impairments. This article addresses this issue, and the emerging discourse on the need for spaces, places, and tools that recognize the importance of cognitive accessibility to enable social citizenship, including age- and dementia-friendly communities.

The Problem with Age- and Dementia-friendly Communities

Parallel discourses influence how older adults enact their social citizenship through participation and interactions with human-built technologies in the public space (i.e., spaces, places, services, tools, and technologies), and in turn, older adults’ interactions shape the design and development of the public space. When we talk about aging, there is an ongoing tension between the ethos of universal design of inclusive communities for all members of society, and the adaptions and affordances for communities tailored to specific groups, i.e., age- and dementia-friendly communities. The former foregrounds “smart” technological solutions that promote cognitive accessibility according to our interactions with the technological environment. The latter emphasizes physical accessibility of the built environment in which technology is neglected or assumes a subsidiary role.

On the one hand, international policies and legislation emphasize the need to promote equitable participation and inclusion for all members of society (e.g., the United Nations’ [2015] Agenda 2030 Sustainable Development Goal 3: Ensure healthy lives and promote well-being for all at all ages; Goal 11: Make cities and human settlements inclusive, safe, resilient and sustainable).

Digitalization is positioned as an integral part of creating more intuitive, inclusive, and “smart” cities and communities (European Commission, 2022). In cities such as Stockholm, there is a drive to make them “smart,” meaning cognitively and digitally intuitive places that promote connectivity through accessible data and digital platforms that communicate with each other via sensors and other technologies. In Johan’s case this means the ticket office is gone and there are fewer staffers at the public transport station to answer his questions, his senior travel pass is on an app on his smartphone (requiring a PIN), which he taps on a sensor to use public transport. The “smart” city makes Johan’s life more difficult.

On the other hand, age- and dementia-friendly communities have become a policy goal for national governments and intergovernmental organizations (e.g., the European Commission and the World Health Organization), due to the increasing prevalence of people in their communities who are aging and living with dementia. Age- and dementia-friendly communities share a common goal to enable social engagement, confidence, health, and well-being, by compensating for disability through environmental adaptations and affordances. The design of age- and dementia-friendly communities has focused on physical accessibility (e.g., signage, lighting, seating, wayfinding) and some dementia awareness programs (van Hoof & Marston, 2021).

In Johan’s Stockholm neighborhood, as in many other cities, there are ramps and lifts to enable access for wheelchairs, prams, and other mobility aids. But, when Johan faces cognitive challenges, such as remembering the directions to where he needs to go or the PIN for his smartphone to access his travel pass, there’s little assistance or support available. He feels embarrassed to ask for help from strangers. Branding places and services as age- and dementia-friendly can help to raise awareness but these initiatives have been criticized for not actively including people with lived experiences in their design and/or development, and everyday technologies have been neglected or presented as subsidiary and neutral.

A More Holistic View of Cognitive and Physical Aspects of Accessibility

Contemporary debates on inclusive (age- and dementia-friendly) communities have tended to emphasize physical aspects of accessibility at the expense of cognitive considerations. Thus, there is a need to reconcile a more holistic view beyond the mind-body, corporeal-cerebral, cognitive-physical accessibility dichotomies, that considers physical and cognitive aspects, especially when it comes to designing increasingly “smart” and digital public spaces, places, and tools.

During the pandemic, it became evident that digitalization in policymaking and research on age- and dementia-friendly communities had been overlooked (Reuter et al., 2020). The subsidiary role of technology for older adults has largely focused on assistive technology, such as memory aids or brain-training applications to decrease and/or prevent cognitive decline. These place the burden of responsibility on the older individual but have not been developed with the older adult user in mind. And research has revealed insufficient cognitive accessibility of privacy policies for health/wellness apps and websites in Sweden, the UK, and the Netherlands (Neal et al., 2023).

As communities become increasingly reliant upon technology, patterns of behavior, habits, and social norms associated with everyday technology use are evolving (Gaber, 2020; Peine & Neven, 2021). Increasingly, research challenges the assumption that technology performs a subsidiary or neutral role in the lives of older adults living with or without dementia (Gaber, 2020; Peine & Neven, 2021). Literature suggests that older adults, especially those who have dementia, experience increased challenges using everyday technologies in their activities of daily living and thus everyday technologies perform an important role in facilitating and/or disabling participation (Gaber, 2020; Hedman et al., 2017). Longitudinal research shows that decreasing everyday technology use is associated with decreasing participation in places in the public space among older adults living with dementia (Hedman et al., 2017).

Without due consideration of older adults as mainstream technology users, like other members of society, there is a risk of segregating older adults into diagnostic/age-specific communities, which could exclude them from being involved in the ongoing discourse, design, and development of technologies and places they interact with every day.

Designing Public Spaces, Places, and Tools Through the Lens of Social Citizenship

A framework of social citizenship provides a better way to think about these issues, a lens through which to understand the ways older adults (including those living with dementia) enact their agency and citizenship though participation in “ordinary places” in their community (Ward et al., 2021).

Social citizenship adopts a strengths-based view of participation, whereby places in public space are viewed as zones of mastery, opportunity, and challenge (Ward et al., 2021). Older adults participate in places and activities in public space for various reasons (Brorsson, 2013), including health and well-being benefits such as social interaction (Livingston et al., 2020), mental health promotion (Odzakovic et al., 2020), cognitive stimulation (Evans et al., 2019), physical activity, and mobility (Odzakovic et al., 2020).

However, health and well-being are not only individual concerns, because they are also socially constructed and relational (Gaber, 2020; Ward et al., 2021). Thus, older adults’ participation is not only motivated by functional, health, or mobility reasons. Participation in activities and places is also a way for older adults living with and without dementia to enact their social citizenship (Gaber, 2020).

Social citizenship underscores that older adults living with and without dementia are active agents with personal autonomy, competencies, histories, rights, and responsibilities., which link the person to a community and country of residence (e.g., sense of familiarity, meaning, and place-making; Bartlett, 2016; Gaber et al., 2022). An older adult living with dementia can express their agency and self-determination through varying degrees of participation and this contrasts with the traditional, more biomedical views of dementia where the person with dementia is regarded as a passive victim of an inaccessible and shrinking world (Ward et al., 2021). Instead, the person with dementia’s changing participation reflects their sense of agency and choice to participate in some places within the public space but not in others. Agency also is linked to an older adult living with dementia’s use and non-use of different types of everyday technologies.

Social citizenship transcends the view of citizenship as a status bestowed upon people, in favor of the idea that citizenship is dynamic and enacted through participation in everyday and “ordinary places” and activities, such as Johan walking and socializing in his neighborhood. Earlier studies have explored everyday activities such as visiting a hair salon (Ward et al., 2016) or engaging in a social activity group as ways of co-constructing a sense of citizenship through shared interactions with the neighborhood and other people (Phinney et al., 2016).

Tools for Mapping Participation in a “Smart” and Digitalized Society

The meaning of participation cannot be reduced to discrete units of analysis, rather the focus should be on the dynamic and ongoing transactions between people, the activities they perceive as meaningful, and their environments (Brorsson, 2013; Margot-Cattin et al., 2019). Transactions occur in multiple spatiotemporal planes and degrees of complexity. Measurements of existing age- and dementia-friendly communities are needed to push the narrative forward (van Hoof & Marston, 2021). There is a specific need when developing age-friendly communities to include the perspectives of older adults living with and without dementia (Brorsson, 2013; Gaber, 2020; van Hoof & Marston, 2021).

Two tools to better understand age- and dementia-friendly communities, including technological considerations, include the Participation in ACTivities and Places OUTside Home Questionnaire (ACT-OUT; Margot-Cattin et al., 2019) and the Everyday Technology Use Questionnaire (ETUQ; Nygård et al., 2016). The ACT-OUT Questionnaire aims to capture detailed information on places and activities in combination, specifically identifying participation restrictions and pointing out barriers and facilitators in different contexts (Margot-Cattin et al., 2019). The ETUQ assesses the participant’s perceived ability and relevance using more than 90 everyday technologies (Nygård et al., 2016).

The ACT-OUT Questionnaire and the ETUQ have been used to educate students (e.g., occupational therapy and other healthcare students), clinicians, service providers, designers, and the public about the need to consider cognitive accessibility when designing public space, for example through a short film (https://vimeo.com/362114355).

More recently, a cross-national study (Gaber et al., 2022) using the ACT-OUT showed that both diagnosis of dementia and country of residence had significant effects on levels of participation in activities and places in public space and thus, opportunities to enact social citizenship. Older adults living with dementia participated in significantly fewer activities and places than those without dementia. Participation was significantly lower among older adults living with dementia in the following 10 types of places:

• mall, supermarket
• dentist’s office
• small store
• senior center, social club
• pharmacy
• entertainment, cultural place
• bank, post office
• forest, mountain, lake, sea
• doctor’s office
• sports facility

These community locations map a starting point to focus development of targeted supports and programs, policies, and built environments to support older adults to enact their social citizenship (Gaber et al., 2022).

Conclusion

Human-built technologies, in the form of public spaces, places, and tools, directly but subtly shape the kinds of habits, routines, places for living, and experiences of older adults in ways that are not yet fully recognized or addressed in design. Thus, possibilities for a better future for aging remain challenging. This article proposes moving toward a strengths-based view of aging that recognizes older adults can enact their social citizenship through participation in activities and places in the public space they perceive as being culturally, personally, and socially meaningful. This requires a greater consideration of cognitive aspects of accessibility to reconcile the corporeal-cerebral dichotomies that have influenced biomedical approaches to healthcare, design, and service delivery. As a starting point, we call for increased involvement of older adults living with and without dementia in the design and development of human-built technologies, targeting those 10 places as well as everyday technologies that are perceived as particularly challenging.

Sophie Gaber, PhD, MSc, Reg OT, is an occupational therapist and postdoctoral researcher at the Department of Healthcare Sciences at Marie Cederschiöld University, in Stockholm, Sweden. She is also affiliated to research at the Department of Women’s and Children’s Health, Healthcare Sciences and e-Health at Uppsala University, Uppsala, Sweden. Anna Brorsson, PhD, Reg OT, is an assistant professor at the Department of Neurobiology, Care Sciences and Society, Division of Occupational Therapy, Karolinska Institutet, Sweden. She is a member of the research group CACTUS (Cognitive Accessibility and Technology Use when Ageing in home and Society) and Everyday Matters.

Photo credit: Shutterstock/DisobeyArt

References

Bartlett, R. (2016). Scanning the conceptual horizons of citizenship. Dementia, 15(3), 453–461. https://doi.org/10.1177/1471301216644114

Brorsson, A. (2013). Access to everyday activities in public space: Views of people with dementia [Doctoral thesis] Karolinska Institutet.

European Commission. (2022). European Declaration on Digital Rights and Principles.

Evans, I. E. M., Martyr, A., Collins, R., Brayne, C., & Clare, L. (2019). Social isolation and cognitive function in later life: A systematic review and meta-analysis. Journal of Alzheimer’s Disease, 70(s1), S119–144. https://doi.org/10.3233/JAD-180501

Gaber, S. N. (2020). The participation of older people with and without dementia in public space, through the lens of everyday technology use [Doctoral thesis]. Karolinska Institutet.

Gaber, S. N., Thalén, L., Malinowsky, C. W., Margot-Cattin, I., Seetharaman, K., Chaudhury, H., Cutchin, M., Wallcook, S., Kottorp, A., Brorsson, A., Biglieri, S., & Nygård, L. (2022). Social citizenship through out-of-home participation among older adults with and without dementia. Journal of Applied Gerontology, 41(11), 2362–73. https://doi.org/10.1177/07334648221112425

Hedman, A., Nygård, L., & Kottorp, A. (2017). everyday technology use related to activity involvement among people in cognitive decline. The American Journal of Occupational Therapy, 71(5), 7105190040p1–7105190040p8. https://doi.org/10.5014/ajot.2017.027003

Livingston, G., Huntley, J., Sommerlad, A., Ames, D., Ballard, C., Banerjee, S., Brayne, C., Burns, A., Cohen-Mansfield, J., Cooper, C., Costafreda, S. G., Dias, A., Fox, N., Gitlin, L. N., Howard, R., Kales, H. C., Kivimäki, M., Larson, E. B., Ogunniyi, A., … Mukadam, N. (2020). Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. The Lancet, 396(10248), 413–446. https://doi.org/10.1016/S0140-6736(20)30367-6

Margot-Cattin, I., Kuhne, N., Kottorp, A., Cutchin, M., Öhman, A., & Nygård, L. (2019). Development of a questionnaire to evaluate out-of-home participation for people with dementia. The American Journal of Occupational Therapy, 73(1), 7301205030p1–7301205030p10. https://doi.org/10.5014/ajot.2019.027144

Neal, D., Gaber, S., Jodell, P., Brorsson, A., Dijkstra, K., & es, R.-M. (2023). Read and accepted? Scoping the cognitive accessibility of privacy policies of health apps and websites in three European countries. Digital Health, 9. https://doi.org/10.1177/20552076231152162

Nygård, L., Rosenberg, L., & Kottorp, A. (2016). User's manual: Everyday technology use questionnaire (ETUQ) everyday technology in activities at home and in society. Karolinska Institutet.

Odzakovic, E., Hellström, I., Ward, R., & Kullberg, A. (2020). “Overjoyed that I can go outside”: Using walking interviews to learn about the lived experience and meaning of neighbourhood for people living with dementia. Dementia, 19(7), 2199–2219. https://doi.org/10.1177/1471301218817453

Peine, A., & Neven, L. (2021). The co-constitution of ageing and technology—A model and agenda. Ageing and Society, 41(12), 2845–2866. https://doi.org/10.1017/S0144686X20000641

Phinney, A., Kelson, E., Baumbusch, J., O’Connor, D., & Purves, B. (2016). Walking in the neighbourhood: Performing social citizenship in dementia. Dementia, 15(3), 381–94. https://doi.org/10.1177/1471301216638180

Reuter, A., Liddle, J., & Scharf, T. (2020). Digitalising the age-friendly city: Insights from participatory action research. International Journal of Environmental Research and Public Health, 17(21), 8281. https://doi.org/10.3390/ijerph17218281

Terzoglou, N-I. (2018). Architecture as meaningful language: Space, place and narrativity. Linguistics and Literature Studies, 6(3),120–32. https://doi.org/10.13189/lls.2018.060303

United Nations. (2015). Transforming our world: The 2030 agenda for sustainable development. A/RES/70/1. United Nations Department of Economic and Social Affairs. 

van Hoof, J., & Marston, H. R. (2021). Age-friendly cities and communities: State of the art and future perspectives. International Journal of Environmental Research and Public Health, 18(4), 1644. https://doi.org/10.3390/ijerph18041644

Ward, R., Campbell, S., & Keady, J. (2016). “Gonna make yer gorgeous”: Everyday transformation, resistance and belonging in the care-based hair salon. Dementia, 15(3), 395–413. https://doi.org/10.1177/1471301216638969

Ward, R., Rummery, K., Odzakovic, E., Manji, K., Kullberg, A., Keady, J., Clark, A., & Campbell, S. (2021). Beyond the shrinking world: Dementia, localisation and neighbourhood. Ageing and Society, 42(12), 2892–2913. https://doi.org/10.1017/S0144686X21000350