Bemidji, Redwood Falls, Mankato, Paynesville, Chippewa Falls, Fort Atkinson, Watertown, Green Bay…
What does this list of communities in Minnesota and Wisconsin have in common other than their interesting names? They have all been on a mission to make their communities dementia friendly. When I first heard about this growing movement, it took me by surprise. Not because I question the merits of their goal, but because the word “dementia” is front and center here. There is no code word used- no softening of the term. The the use of the word itself in the designation is progress!
At the heart of this endeavor is the goal to foster a better quality of life for people with dementia and their caregivers. It also allows people who are in the earlier stages of the disease to potentially maintain their independence for a longer period of time, which benefits them and their families. It provides support for them and their caregivers when they are out in the community. All of these communities, like so many in the country, are experiencing increasing numbers of people with dementia living in their midst. These numbers are expected to continue to increase. Alzheimer’s alone (the most common form) is expected to rise 40% over the next decade, to 7.1 million from 5.1 million in the U.S.*
A dementia-friendly community is one in which a person with dementia is able to do normal activities, such as go to the grocery store and do some shopping, go to the bank and make a deposit, or go to a coffee shop and order a latte’, even if they have trouble completing all the steps of these activities. They are able to do these normal activities because there are trained people within the business or other volunteers available to help them, if they need it. This is a new approach for thinking about how to include people with dementia in the community and help them feel comfortable in everyday settings, instead of leaving them isolated in their homes.
Paynesville, Minnesota, a small town of about 2,400 began its journey to become dementia friendly in 2013. The co-chair of the Paynesville initiative, Linda Musel was the president of the local Senior Center, and they were looking for a way to draw people in. They saw material available through the statewide initiative in Minnesota, the ACT on Alzheimer’s. It’s an innovative collaborative that provides among other things, a toolkit and resources to guide communities in becoming dementia friendly.
Paynesville formed a committee and began by surveying the community to understand the needs first. They even surveyed teens- “We were advised to include teenagers,” Linda said in a recent phone conversation. This turned out to be very important. The survey feedback from teens was that they wanted to be part of their grandparents’ lives and not kept in the dark. They wanted a say in this effort and did not want to take a back seat. Following the survey they began their planning with two goals in mind: 1) to educate the community at large about dementia with the goal of reducing the stigma and 2) to support those with dementia and their caregivers.
Some of the activities Paynesville has engaged in to achieve these goals include “Dementia Friends” training and also training businesses to be dementia friendly (Business Dementia Friends). A Dementia Friend is a person who has learned to think, talk, and act about dementia in a way that assists in reducing the stigma. By February of this year, over 200 dementia friends will be trained in Paynesville (over 8% of the population).
Training a business to be dementia friendly involves teaching the staff to understand how to become supportive of persons with dementia, including knowing how to interact with them. Training also includes what to do if issues arise when a person with dementia is shopping in their business. For example, a person may give the cashier too little money. What is the best way to talk to that person about the right amount they need? The training addresses this. And what if, after doing that, the person doesn’t agree and becomes upset- how does the cashier deal with a situation that escalates? Linda said they’ve tailored their training for the environment of the business by constructing scenarios that are particular to that business. Paynesville has trained 15 businesses to date. In addition to training, Paynesville also sponsors general education of the broader community on dementia. Every Wednesday volunteers show up at the local grocery store. They assist with shopping if needed or sit with a person with dementia to let the caregiver shop. The volunteers hand out bookmarks that list the 10 signs of dementia to customers. They answer questions.
In Green Bay, Wisconsin, the Brown County Dementia Friendly Community Coalition started as an initiative with a small group of people in 2014 and covers the entire county- a population of over 250,000. The mission of the coalition is to “develop cooperative partnerships which raise awareness, educate, and engage all to create a dementia friendly community that enhances the quality of life for everyone.” The coalition is made up of representatives from a wide variety of stakeholders within the county including local and state agencies that support people with dementia, emergency response personnel, businesses, the health care system, caregivers and those with dementia.
The coalition is working through subcommittees on the following four initiatives: 1) implementing memory cafés, 2) dementia friendly awareness and training for businesses, 3) training for emergency and crisis responder personnel (police and firefighters) and 4) strategies on how to better respond to community members with both Down Syndrome and Alzheimer’s disease. There is a tool kit available at the state level put out by the Wisconsin Department of Health Services, and the coalition is also working closely with Appleton (35 miles down the road), learning from “The Fox Valley Memory Project” championed by John and Susan McFadden. The sister-community is a little further along and they’ve shared strategies, materials and lessons learned. Dementia Care Specialist Nicolette Miller is a member of the coalition and sees that their work will improve the environment in the community for people with dementia and their caregivers. She’s worked on the memory café, which was launched in October of 2015 with an average of 16 participants each month. The café provides a fun, comfortable environment where people with early stage memory loss and their companion can relax and engage in activities with others who are on the same journey. A new subcommittee on schools will be added in the future. This subcommittee will focus on the needs of children living with parents with early onset Alzheimer’s and on children living with grandparents with dementia.
Paynesville and Green Bay are two different communities with two different organizational structures and action plans to become dementia friendly. Paynesville has over a year under its belt and Green Bay is just beginning. The paths are indeed different, but the goal of dementia friendly is the same. That’s what matters. They are both striving to make their communities better places to live for people with dementia and their caregivers. By tailoring their plans to their own unique communities, they are likely to be more successful than using a one size fits all approach. They are two examples from the over 45 other communities in both Minnesota and Wisconsin that are working towards the same end. The movement is also getting attention at the national level. The White House Conference on Aging joined this grass roots effort recently and is partnering with a new organization called Dementia Friendly America. Together they have launched dementia friendly pilot programs in Tempe, Ariz.; Santa Clara County, Calif.; Denver; Prince George’s County, Md.; Knoxville, Tenn.; the state of West Virginia.
Dementia-friendly community – coming soon to a community like yours!
–Therese Barry-Tanner, Producer