Where Does Dementia Belong?

In the recent book Dementia and Place (2021), authors Richard Ward and colleagues ask “is there somewhere that dementia belongs?” This provocative question points us to a key challenge of community inclusion for people living with dementia and leads us to reflect on the issue of place for people living with dementia. Many years ago, Rowles (1978), a geographer, noted that many older people with cognitive impairments become ‘prisoners of space’, that is, their freedom to move around in the spaces of life was increasingly restricted.

We have seen this in our own work. As the ability of a family member to remember how to return home when out on errands become a focus of concern, plans are implemented to ensure the person with memory loss is carefully ‘contained’ in their home, awaiting someone to assist with outside activities so the person never leaves home alone.

While increasing family and friend contact during planned activities, such care practices can create social isolation in the home environment as well as forms of ‘containment’ even when away from home as activities become constrained to just the task at hand. It is known that social isolation can affect anyone’s health in a negative way. It is concerning that strategies to help maintain or improve social health for people living with dementia are limited.

Dementia and Community

In a recent ethnographic study of care in the community, Holly followed four people living with dementia at home who were also using a day program. Her interest was to see how the day program fit into the family arrangements for care and community living. Day programs have been proposed as a solution, providing both respite for caregivers and a space of social life for people living with dementia. While Holly’s observations took place mainly in day programs and homes, it was difficult not to notice that the larger community was, in many respects, ‘missing’ from daily interactions.

In this blog, we tell a story of one of Holly’s participants to show how a person living with dementia comes into relation with their broader community. In our next blog, we will use this example to reflect on what might be done to address the issue of social health for people living with dementia.

An Outing to the Mall

Peg (a pseudonym) is an 86-year-old woman living with dementia at home. She was recently widowed and began attending the Oak Room Day Program when the family became concerned about her limited opportunities for social interaction. It seemed that Peg’s memory problems made some of her usual activities harder to do. She was aware of her memory issues and avoided settings such as playing bridge and going to book clubs where her memory issues would become obvious. To the family, the day program offered a place for Peg to socialize with others and be ‘known’ by people outside her family.

At the Oak Room, Peg participated twice a week in chair exercises, crafts and game activities, as well as having coffee and lunch. In an effort for both staff and clients to have other experiences to look forward to, the Oak Room plans for a community outing every few months. These outings involve visits to common landmarks or cultural and seasonal events. There is much to plan for as the outings are a step away from the familiar routine for both staff and clients.

Due to the unique needs of the people using the program, careful planning is required. In observing a planning meeting for a Christmas Shopping trip to the mall, Holly noted how the staff’s conversation revealed what were seen as the risks of leaving the protective space where the day program operates: people might get anxious, they might not follow the norms of behavior expected, they might shoplift, become incontinent or get lost.

The staff also must plan for the challenges of the space. For example, there are few accessible bathrooms. Despite these risks, the staff justified these outings as important ways for clients to participate in their community. Taking all this into account, the program staff works to build a structure for the outing in a way that lessens the risks and enables the clients to function in and tolerate these less-familiar settings.

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Social relations in the Mall

Source: Kampus Productions/Pexels

The actual outing was a whirlwind mall tour lasting three hours. Peg and other women from the program strolled through the mall accompanied by staff. They tried on hats, sipped coffee, talked to strangers, and had lunch. Complications inevitably arose. One woman got caught in a bathroom stall; another tried to buy a calendar for the salesclerk at the calendar kiosk. Holly also noted new types of interactions with people as seen in this excerpt from her notes:

We walk together with Peg and another woman living with dementia, Marie. Eventually, we encounter a woman with a smile plastered across her face greeting us in an overly familiar voice and offering soap samples. “Helloooo Ladies!” she calls to us. I have seen these salespeople before, so I try to ignore her and shift my gaze forward and keep walking, but then see that Marie and Peg have stopped to see - they take the samples and say “mmmm nice,” “thank-you” and the soap seller tells them warmly “you are the nicest ladies I have met today”.

Breaches of Social Norms

As they make their way through the mall, Peg comes into relation to the space, materials and people there. There are some relations that are familiar and easy to participate in like trying on hats or sipping coffee. Other interactions create breaches to expected public interactions that the people at the mall, Peg, Marie, and the staff need to adjust around. The day program staff work to support Peg and others to ‘get out’ and conform to the norms of expected activity. Those they encounter respond and engage in different ways to the presence of strangers who do not always maintain the expected civil inattention.

Sometimes these breaches create tension but sometimes they create new opportunities for recognition of people typically ignored, like soap sellers. These relations and their tinkering make for a different stroll in the mall; it is a stroll that takes work and brings to light some of the taken-for-granted ‘rules’ social interactions public spaces require but also how people living with dementia bring new ways of interacting into public spaces.

We invite readers to consider those rules that structure interactions in public spaces – and particularly the challenges that such rules impose for people living with dementia and all those who wish to improve their opportunities for social health. We will explore these ideas further in our next blog.