Co-founder of the Fox Valley Memory Project, Susan McFadden, Ph.D., believes dementia friendly communities benefit everyone. Here’s why — and what communities can do to become more dementia friendly.
WAM: In your new book, Dementia-Friendly Communities: Why We Need Them and How We Can Create Them, you lay out the reasons dementia friendly communities benefit us all. Can you describe why you think families not dealing with the dementia may want to get on board with creating a more dementia-friendly world? What’s the loveliest aspect of living in a community that is more dementia friendly?
McFadden: I like to say that we are all living with dementia. Sometimes people assume dementia is just an old people’s problem and that everyone with dementia lives in a nursing home. On the contrary, most people with dementia do not live in some kind of congregate care community. They are our beloved relatives, our neighbors, the people we encounter in our shops, libraries, and parks, etc. When we create community programs and environments that are welcoming to people with diagnosis and their care partners, we benefit the whole community. For example, dementia care is very expensive and if we can help families keep their loved ones at home by being sensitive to their needs, we help them emotionally as well as financially. Wouldn’t we want everyone in our community to be patient and respectful toward others, regardless of cognitive ability?
WAM: What are the first things a community needs to do to become more dementia friendly—and how have you seen ideas implemented that did not require huge financial investments?
McFadden: It is helpful for communities to convene a small, diverse group of interested citizens to examine how welcoming and hospitable various sectors of the community are to people with memory loss and other challenges associated with dementia. These groups should always include persons living with the condition and their care partners. They can ask some pertinent questions, like whether first responders have received training in how to handle people with dementia, or whether the local businesses are providing customer services for those with dementia and their caregivers. There are many excellent resources available to help communities do this. One place to start is with the Dementia Friendly America organization. It has a free online toolkit to help communities get started in becoming more dementia friendly. See https://www.dfamerica.org/community-toolkit-introduction.
But there are plenty of things we can all do as individuals. Maybe it’s speaking to the local library or coffee shop about offering a place for those with dementia and their caregivers to meet for support and friendship. One of the most difficult aspects for families is that living with dementia can be isolating and lead to loneliness. We can all do something about that by reaching out to neighbors and their caregivers with friendly support and an offer to help pick up groceries or shovel snow. A friendly question about whether you can help someone navigate a crosswalk won’t be taken amiss whether or not a person has dementia. That’s just building a community that’s friendly for us all!
WAM: What is the most dramatic/effective outcome you have seen when creating dementia friendly communities or events?
McFadden: It is so important to reduce the stigma and shame associated with dementia in order for people with the condition to live with joy, meaning, and purpose in their lives. I used to see this all the time at our in-person memory café gatherings and now I observe how people living with dementia interact happily with one another during our Zoomed cafés. I also have seen the commitment of our dementia chorus members who used to meet in person to practice for concerts but who now get together on Zoom once a week. They are proud of the chorus and eager for the day when once again they can perform for the whole community. Many of the people who come to memory cafés, chorus, and our other activities recommend businesses and community organizations for our Purple Angel dementia-friendly trainings. They get satisfaction from making positive contributions to help our community be more dementia friendly.
WAM: What are the largest hurdles to overcome, and do you suggestions—or examples—of how communities have been nimble and gotten over the challenges?
McFadden: There is still so much stigma associated with dementia. When I tell people about my work, they often say, “isn’t that depressing?” or “wouldn’t you rather work with children?” Some have the idea that people having dementia are all mean, live in nursing homes, and have lost selfhood. We need a lot of community education and it should start in schools because children often know family members and others living with dementia. There are many excellent free resources available online to help all kinds of community organizations and businesses be supportive and helpful to those with dementia. First, however, they need to critically examine their assumptions about what makes a good community for all persons. They also need to be reminded that long-term care residences are part of their community and that the people who live and work there deserve their support to live as well as possible.
WAM: There is tremendous value placed on inter-generational living. Why?
McFadden: Children bring great joy to elders and vice versa. However, sometimes they need some assistance and support in order to interact meaningfully. For example, one time Fox Valley Memory Project (the nonprofit I helped to start) had a community arts day. First, we educated a middle school class about dementia. Then the students came to a local senior center on a Saturday and were paired with people living with dementia and their care partners. They sat together at tables placed in a large room and on the tables were piles of blank paper and colored pencils. We gave the children some questions to ask the elders (for example, “what is your favorite food?”) and then together, they drew pictures that captured some of the answers. Our chorus also performed that day so the children saw people with dementia having fun singing together. We often put on silly hats or other simple costumes for our songs and people are surprised when we sing tunes like “Surfin’ USA” and “Sweet Caroline.” Children and people with dementia can often be less inhibited than the rest of us and actually enjoy “being in the moment” in a way that is truly filled with joy. Providing them the environment to do so safely is a gift to both generations!