The Dementia Friendly Bloomington-Normal Task Force is seeking community input on how people living with dementia and their caregivers can be best supported in the Twin Cities.
The East Central Illinois Area Agency on Aging [ECIAAA] and the University of Illinois Extension are seeking feedback through a survey open to the entire community through June 15.
Responses will be used to build a dementia-friendly community, one of ECIAAA’s top priorities. Dementia is a syndrome characterized by symptoms affecting memory, thinking and social abilities severely enough to interfere with daily functioning.
“Once someone is diagnosed with dementia, people with dementia can live active, normal lives, especially in the early stages of dementia,” said Kathryn Johnson, community liaison at ECIAAA. “We also want to bring attention to family caregivers and bring support to them.”
Johnson said providing education and support to families will hopefully teach them they do not have to be afraid of the syndrome.
Health and Family Educator with the Extension Sara Attig said the new initiative does not believe Bloomington-Normal is not already dementia-friendly. She said the concern surrounding dementia exists, but there is still a sense of stigma.
“But that’s one of the focuses of the task force is really to look at where are we as a community in Bloomington-Normal,” she said. “Where are those gaps, and what can we do to really make a difference in the lives of our community members?“
Attig said the group wants to bring a sense of community to the syndrome, because it affects family, workplace and civil communities at the same time.
"It’s something we want to help now and in the future. Help those who are touched by dementia [so they] can really continue to feel part of the community and feel as if they’re connected and respected,” she said.
Johnson said the national dementia-friendly movement separates a community into sectors for a task force to bring into the loop on their resources. A key group is first responders, who she said often interact with someone in a dementia-related crisis.
Dementia misconceptions
Johnson said one of the biggest misconceptions surrounding dementia comes from its relation to age.
“Many people believe that dementia is a normal part of aging, and that’s false,” she said. “Dementia is a disease, and there is a higher incidence of perhaps someone having dementia in older age, but it’s not a normal part of aging.”
Johnson said that it results in stigma around age. Just because someone is in their 80s, for example, does not mean they automatically have some progression of dementia.
Some talk about dementia centers around how treatable or curable it is. While few types of dementia are curable, according to the Mayo Clinic, most treatment focuses on managing symptoms.
“Alzheimer’s is one of the most common forms of dementia that is diagnosed, but there are over 120 different types of dementia and I think that people will automatically assume, well, if you have dementia, it must be Alzheimer’s,” said Johnson. “Well, there’s other diseases that cause it. Frontal lobe dementia, like Bruce Willis has, or Lewy body dementia, others like that.”
Naturally, many aging adults are interested in ways to reduce their risk of dementia. Attig recommends incorporating lifestyle changes and habits, like brain health and healthy aging, a program area she works in.
“We really focus on what can we do to keep our brains health and active, and there are various pillars of brain health,” she said. “So, a lot of [Extension’s] programming really focuses on those things, on maintaining social connections, because that’s so important for our brain health, as well as challenging our brains with intellectual challenge.”
Survey responses
Once the survey closes June 15, Johnson, Attig and the rest of the task force will meet to review the answers and identify goals to earn a designation of Bloomington-Normal as a dementia friendly community.
It comes from the national organization of Dementia Friendly America.
“It’s a part of the USAging and we submit our application to become and explain all the steps we went through to become the dementia-friendly community, who’s been on our task force, what our goals are for the next year,” Johnson said.
If successful, the task force would become permanent and look for additional goals to meet in the Twin Cities.
“I think this is such an important aspect of our community, especially as our community’s aging, that this really does need to be ongoing, evolving reach for our community to help strengthen and support those members of the community who are touched by dementia,” Attig said.
The designation is more or less a status a community can earn, but Attig said it is most important for those within a given community.
“I know some of the communities who have this designation have maybe signage in certain businesses or organizations that let people know that the employees, that this particular business understands some of the unique concerns of those with dementia or caring for those with dementia, so it helps them to feel more comfortable,” she said.
According to ECIAAA, about 10% of those over age 65 are likely to have some form of dementia. In Bloomington-Normal, roughly 2,000 people are affected by dementia and 4,500 family caregivers exist.
