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While most people know of dementia, it’s still a widely misunderstood diagnosis.
Often people assume that someone living with dementia is unable to fend for themselves but in reality, there are people living with the disease who are self-sufficient in many ways. They go to the grocery store, handle their finances and are active members of their community.
A minority of those with dementia (about 30 percent) live in institutional care facilities. Instead, a majority live amongst the community.
That’s why issues can arise when misunderstandings create stereotypes that isolate and stigmatize those with dementia, which is why it’s crucial people, even those not directly impacted by the disease, become educated.
A grassroots movement helping to do just that is Dementia Friends Indiana, a world-wide organization looking to make a difference in the Hoosier state, including right here in Michiana.
“When you mention that diagnosis to someone, usually the feelings that it resonates are negative, sorrowful and secretive,” said Angel Baginske, the executive director of Alzheimer’s and Dementia Services of Northern Indiana. “Dementia Friends is really aiming to break that stigma and to enforce that people living with this diagnosis are still very valuable members of our community. They need to be involved, they need to be included and they might just need a little help to do so.”
Dementia Friends is a presentation program. Organizations, often local businesses, invite a Dementia Champion into their office to spend 45 minutes to an hour educating people on what life is like for people diagnosed with the disease. Once the presentation is completed, the new Dementia Friends are invited to create programs or initiatives in their own organization or community.
For instance, Baginske says that a group of friends in Indiana who decided to start a dementia-friendly choir, which invites people with the disease and their caregivers to have their own ensemble to participate in. Another example is Alzheimer’s and Dementia Services of Northern Indiana, which is starting a memory cafe geared toward people with dementia.
“Instead of just trying to leave them at home and do things on their own, we want to include them,” Baginske said. “There’s a restaurant in Indianapolis that is just started dementia-friendly hours and a change in menu. It’s a simplified menu, a brighter location. There are very simple changes that you can make to your organizations that can really enhance the experience for someone who’s living with that diagnosis.
“But we ask that you do something, don’t just come and listen to the presentation, but also turn it around in the community,” she said.
Currently, there are more than 5,000 Dementia Friends in the state of Indiana, but people may also become Dementia Champions themselves and do their own presentations.
All Dementia Friends presentations are free to the hosting organization and the Dementia Champion will come to them. While people are then encouraged to assist their community, there’s no actual commitment to do so. It’s up to the people who watch the presentation to be inspired to take action, using the necessary information they learned during the presentation.
“We’ve done many staff meetings and things like that, so we’re happy to do it and there is no cost or commitment to anyone,” Baginske said.
People without access to a Dementia Friends presentation may also watch a series of videos online.
Those interested in hosting a Dementia Friends presentation can contact Angel Baginske directly at 574-232-4121 or go through to the website of Alzheimer’s and Dementia Services of Northern Indiana.