Dementia, Isolation and Social Health

In our last blog post, we presented a story about people living in the community who also have a diagnosis of dementia. These individuals gathered regularly at a community-based day program. People attending the program were supervised by staff who offered a cup of coffee and a snack when they arrived and then, over the course of the next few hours, led them through gentle exercises, as well as engagement in crafts or word games.

Christmas at the mall

Source: SoQ - ChristmasTree@ifcMall

The story we shared in the last post relayed a more extensive activity planned and implemented by staff at the day program. This activity involved staff taking people attending the day program out to the mall for Christmas shopping. The activity was designed to simulate a little slice of “real life,” something harder to achieve in the institutionalized space of the day program setting itself.

The trip to the mall can be understood as a strategy implemented by staff to enhance social health for day program participants. Enhancing social health in community-based dementia support programs reflects an awareness on the part of staff that social networks and social support are important across population groups and that “those diagnosed with dementia and those who provide care and support often feel socially isolated with limited opportunities to engage in social groups increasing the potential for loneliness and further isolation” (Innes, 2022, p. e1375).

Researching social health as a complex relationship

Research into social health and dementia, according to Vernooij-Dassen and colleagues (2018) seeks “to study how social aspects influence the dynamic balance between opportunities and limitations in dementia” (p. 775). This field of study differs from more typical dementia research that is guided by biomedical approaches where direct interactions are the focus, such as between a drug and an improved score on a memory test. Research on social health involves investigating a much more complex relationship.

For instance, we draw your attention to the notion of a “dynamic balance of opportunities and limitations.” Taking the example of the trip to the mall as a focus, we witnessed the staff struggling to balance opportunities for day program participants against the limitations they saw as possible dangers in events as they unfolded at the mall. Adopting the research strategy advocated by Vernooij-Dassen and her colleagues affords a framework for recording as much as possible about how everyone participating in the event (e.g. day program participants, day program staff, staff at the mall and even the physical layout of the mall) works to make some things possible while placing limits on other activities.

Vernooij-Dassen and her colleagues note that researching the idea of social health can help us see ways in which some of the challenges of living with dementia might be the “result of negative social responses” (p. 775) rather than an expression of the disease itself. This takes us back to the invocation we left off at in our last blog post. We asked readers to consider the rules that seem to operate during the trip to the mall and think about those as ways in which interactions between day program participants, day program staff and everyone at the mall structures those spaces. As we learn to focus on how everyday interactions are structured, we might also see how opportunities to shape the mall as a space where social health might be fully actualized or, as in some of the examples we shared last time, how opportunities are constrained.

Alone in a crowd

Source: akahawkeyefan/Creative Commons

For instance, in planning the outing, staff members saw the opportunity of the trip to the mall as offering participants in the day program the chance to be part of the excitement of Christmas shopping, the chance to see a wide range of beautiful seasonal decorations. But staff members also expressed anticipatory concerns that, if not monitored closely, negative incidents such as day program participants taking goods from shops without paying, might occur. In the end, the worst that happened was that one participant wanted to purchase a calendar for the woman who was selling them while other participants engaged in animated conversation with a woman who was seeking to encourage passersby into her store to purchase soaps.

Balancing opportunities and limitations

What the example of the trip to the mall did a good job of illustrating was the significant efforts of program staff to create an experience that mimicked everyday life for program participants. But if so much effort is required to create a particular experience of being at the mall, does this signal that the experience might be counterproductive to the goals of enhancing social health? As Vernooij-Dassen and her colleagues note, “(b)eing treated as an ‘other’ or a ‘lesser being’ exacerbates the sense of ‘being an outcast.’ This type of social pathology contributes considerably to suffering in dementia” (2018, p. 775). If activities designed to enhance social health for people living with dementia are so prescribed, limiting people’s opportunities to enjoy the experience of being in the mall, do these activities in fact show us how dementia does not belong out in the community?

We do not think this has to be the outcome of such interventions. But it should encourage us to ask questions like, does the trip to the mall have to go a particular way? Could it simply be “an experience” that might be referred to in discussions with day program participants—or not—later? The story is powerful in how it shows us how program participants, as members of the community, live their lives at home, mostly alone, and then a tiny bit of their life at the day program together and, on occasion, they are taken somewhere in the community and, not so much let loose as much as they are enabled to live for a short while with anonymous others, letting life roll out in largely unstaged, and only gently managed, ways.

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Challenging the constraining impact of social rules

For those concerned with the way dementia places constraints on social health, the example propels a consciousness of how social rules place constraints on all participants in public settings, like shopping malls, to conform.

But for observers of social encounters, we might be struck by the way dementia removes constraints on what we saw as the typical non-engagement with soap sellers that most of us observe. And if someone is interested enough to sell calendars, why would we not think and act—as though they would also enjoy receiving one as a gift! In asking these questions we are responding to the innovative way of thinking we have found in Isabelle Stengers's work and particularly in her inducement to “try to listen to that which insists” (2009/2015). Notable in the story about the trip to the mall are those many movements that day program participants make to get close to, to engage with, others at the mall. Staff demonstrate concern about these movements towards others and some of these engagements. But is the movement toward others something we should “listen to” as “that which insists”? And if so, are there ways we could, in order to address that dynamic balance between opportunity and limitation, step back and enable those movements, those engagements, rather than limiting them too soon and inadvertently causing suffering?