In a dementia-friendly community, people with dementia are treated with understanding, respect and patience by businesses, police, doctors, bus drivers, waitstaff, etc. It can also be one where the built environment is easier to navigate and understand, with the goal of allowing people with dementia to live as independently as possible, to continue to be a part of their communities and social networks, and to receive support where necessary. In this blog, I will discuss the ways that businesses and communities can become dementia-friendly in the areas of support, training and understanding. The second blog on this topic will focus on ways our built environments can be more suitable for people with dementia.
Estimates show that there are as many as 50 million people worldwide living with dementia today (some diagnosed, some not). This number will nearly double every 20 years, reaching 75 million in 2030 and 130 million in 2050. In the U.S., that number is 5.5 million today, and in Wisconsin, it is between 110,000 and 115,000—equivalent to a city the size of Green Bay. By 2040, that number is expected to be 242,000, equivalent to the population of Madison. Even more alarming are studies that show that dementia affects one in two people over the age of 80. With the baby boom generation approaching that age, given increases in life expectancy, this is cause for major concern.
Being dementia-friendly can take on many forms. It might mean a restaurant server who is willing to repeat menu items, speak in simpler terms and not lose patience. It might mean a first responder who stays calm and asks the right questions. It might mean a bus driver who helps a rider know where and when to exit. It might mean a cashier who helps a customer count his or her money. Though simple, when not done, these acts may cause a person with dementia to become embarrassed, confused and agitated, and to experience sensory overload.Being dementia-friendly also means that a community has resources and services available for people with dementia and their caregivers. A community that strives to become dementia-friendly must first determine what services already exist, who is providing them, and whether they are working or not. From there they can determine the gaps in services or support. These services may come from a local aging and disability resource center (ADRC), a senior center, a hospital or a clinic; they may also be provided by local businesses and government entities.
Chippewa Falls Main Street Director Teri Ouimette has been involved for several years in local efforts to make Chippewa Falls dementia-friendly. When beginning such an initiative in your community, she recommends surveying local businesses regarding their interest in becoming dementia-friendly. She also urges communities to utilize local and state partners, such as nursing homes, hospitals, clinics, the county or regional ADRC, the Wisconsin Department of Health Services, the Alzheimer’s and Dementia Alliance of Wisconsin (ADAW), and the Greater Wisconsin Alzheimer’s Association (GWAA). It is also very important to have individuals with dementia AND their caregivers at the table. They know best what they need. Having the various individuals and organizations take on different parts of the work plan makes it more manageable and gets more people involved in the cause. Social media updates, press releases, training events, brochures, and presentations to service clubs and chambers of commerce are a few ways to build support as well. Ouimette is currently working on an initiative to get certified businesses and communities into a searchable online database, beginning with Chippewa County and hopefully to be replicated statewide.
The ADAW and GWAA can provide training to individual businesses, organizations, government agencies and communities. This training helps a business’s staff and management be able to recognize the signs and symptoms of dementia and learn how to approach, interact with, respond to, and communicate with the person appropriately and productively. For a business or organization to become dementia-friendly, it must have all management and at least 50 percent of frontline staff attend such training. The business or organization must appoint a liaison/leader, be open to physical changes to their place of business, and share training with new hires. Once certified, they are able to display the “purple angel” sticker on their window, indicating that they are dementia-friendly.
Many county or regional ADRCs have taken the lead in starting dementia-friendly initiatives in their regions. In Wisconsin, hundreds of businesses and communities are certified. These communities organize training programs, memory cafes, memory care kits, caregiver and employer toolkits, resource fairs, art and music events, in-home care coaching, long-term care outreach and more. Businesses and organizations that have gone through the training include restaurants, retail shops, pharmacies, hospitals, clinics, post offices, libraries, banks, police/fire stations and city halls. In Beloit, even the farmers’ market is certified.
In addition to training businesses and organizations, the various county, regional and statewide groups can work with your community to provide or co-sponsor events and services aimed at helping the very people living with dementia. ADAW provides education (Crossing Bridges), discussion groups (Meeting of Minds) and social gatherings (Memory Cafés) for people with early-stage dementia. They also do memory screenings and financial/legal planning seminars. GWAA provides a helpline, in-person care consultations, support group meetings, advocacy and a statewide conference.
It’s important to remember, however, that a business or community should not just stop at training on how to communicate with customers, but should also address how to interact with their own employees who might have dementia—and never forget that dementia affects the caregivers nearly as much as the person with dementia. Employers who understand this and are willing to provide some leeway in time off, scheduling, and other support for family caregivers is vitally important in becoming truly dementia-friendly. The Fox Valley Memory Project has made this one of their priorities with their Workplace Enrichment Initiative.
Marshfield has helped family caregivers with their Tiny Tiger Intergenerational Center. They provide child and adult daycare, using student volunteers who learn how to interact and care for children and adults. This also helps family caregivers by providing them with some respite to be able to work or run errands, or take time for themselves.
The transit systems in both Beloit and Janesville have earned dementia-friendly certification, meaning their drivers can provide better recognition and empathy and are able to identify passenger needs. This can be a vital step in allowing people with dementia to get to doctor appointments, the grocery store and the pharmacy, often meaning they can live independently at home longer.
Middleton, Chippewa Falls and Portage are just a few examples of communities that began dementia-friendly efforts as early as 2013 or 2014. Many others have followed their lead. A few examples in just the past year include La Crosse County providing dementia training for law enforcement, Aurora Health Care providing a dementia summit in Oshkosh, Stoughton Hospital providing training to their employees and volunteers as well as family caregivers, and the ADAW hosting an annual slate of trainings that can be found on their website.
A collaborative effort among several regional and statewide entities resulted in a toolkit called Building Dementia-Friendly Communities, available on the Wisconsin Department of Health Services website. Also on this website are links to dementia-friendly guidelines for entities such as grocers, pharmacists, restaurateurs, law enforcement and first responders.