Dementia looms as one of the most pressing health crises facing our communities.
More than 110,000 Indiana residents have been diagnosed with a form of dementia, including Alzheimer’s disease. Those numbers are only going to rise in coming years, as projections show diagnoses to increase to 130,000 cases by 2025.
Yet despite the prevalence of the condition, dementia remains mysterious, stigmatized and rarely talked about in society.
A group of advocates and local leaders have come together with a campaign to change that fact and help the community be better equipped to understand dementia. Dementia Friends Indiana has started a roll-out with Johnson County officials in healthcare, government and faith communities to offer training sessions and events to help create environments that are welcoming and conducive for those with dementia to navigate.
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"The fact that it’s still so misunderstood, and a lot of people don’t understand exactly about what it is and what it’s not, it has led to a lot of stigma and fear. The whole movement in general, we’re just looking to end all of that and better educate about what exactly dementia is, so that stigma is reduced," said Dustin Ziegler, vice president of community programs for CICOA who is spearheading the Dementia Friends effort. "Just in better educating people, it will create better and more welcoming environments for those living with the condition."
Dementia Friends is designed to be a grassroots movement, giving individual organizations and local groups the power to bring it to their communities as they see fit. About 4,000 people have become Dementia Friends in the last two years.
The next opportunities for Johnson County residents to become Dementia Friends comes on Nov. 20 and Dec. 4, when Northwood of Franklin apartment complex will host a training.
"We want our county to be inviting for those with dementia and their caregivers. Johnson County wants to increase the level of education and the understanding of dementia," said Wendy Sanders, service coordinator for Northwood of Franklin, in an email Wednesday.
In Johnson County, leaders with CICOA, as well as Johnson County Senior Services and the faith-based community, are helping provide information and organize sessions to train more people.
"We want the community to reach out to neighbors, leaders, churches, to get people engaged so they can learn about what this is, and let them do something about it," Ziegler said.
Dementia is often thought of as interchangeable with Alzheimer’s disease, and it is one of the most recognizable symptoms of the disease. But dementia is a general term for a decline of memory and mental ability, severe enough to interfere with daily life, Ziegler said.
Brain tumors, Huntington’s disease and AIDS can also cause dementia.
Incidences of dementia are growing across the world, with projections calling for the numbers of global cases to rise to 15 million from 5 million in the coming decades. The World Health Organization declared dementia to be a worldwide epidemic in 2016.
Experts estimate about 70 percent of people with dementia live in the community and interact with us everyday.
"It’s already an epidemic. It’s only going to compound and grow," Ziegler said.
Dementia Friends is a movement that has its roots in Great Britain, and has spread throughout the world, including to many states in the U.S., which has 22 chapters. The Indiana branch started in 2017.
Ziegler was instrumental in bringing the campaign to the Hoosier state, and CICOA, a central Indiana nonprofit providing information, advocacy and support services for older adults., is the administrator of the program in Indiana.
The goal of those involved in it is to raise awareness, reduce stigma and make life easier for those who have been diagnosed with dementia, as well as their caregivers.
"The bottom line is, we’re looking to rally our communities to be more welcoming of those living with the condition, and make things easier for those with the condition to navigate within our communities," Ziegler said.
In Indiana, Dementia Friends programs started in Hamilton County and spread throughout the state, including to Johnson County. Developments that have grown from that initial efforts include creating a community choir for those with dementia, training first-responders statewide and hosting Memory Cafés, or safe spaces, for individuals with dementia and their caregivers to interact and get out into the community.
Zed Day and his wife, Linda, have attended a number of the Memory Café events at Conner Prairie and the Hamilton East Public Library in Fishers. During an event in October at Compass Park, the northside couple shared how the events had been beneficial to them both. Linda Day was diagnosed with early stage Alzheimer’s disease about three years ago, and Zed Day is her primary caregiver.
"We’ve been married in December for 58 years, so this has been a new challenge for us to face," Zed Day said.
At the Memory Café events, the Days have made cornbread over an open hearth, churned butter and taken part in other activities planned at the history park.
"We do a lot of activities that keep us sharp and keep us socially interactive with other folks who are in similar circumstances to what we are going through," Zed Day said. "It’s a way to keep us socialized, and has been very beneficial to meet other folks who are going through a similar journey and interact with them, to share stories and tips and advice."
People who experience dementia can become withdrawn from friends, family and their community. They close themselves off, and often, their caregivers are isolated as well.
"One of the drawbacks of this condition is that as the disease progresses, people feel less and less comfortable or even welcome, not because people are mean, but they don’t understand the condition," Ziegler said.
The goal of Dementia Friends is to reverse that process.
Experts trained in dementia have led workshops with organizations, businesses and churches to pass on information about how to make communities more friendly for those with the condition, as well as for their caregivers. Sessions have been held at places such as the University of Indianapolis, Compass Park in Franklin and the Johnson County Council on Aging, among dozens of other civic groups and churches.
People can become Dementia Friends through a 30-minute online training, or through a more intensive 45 to 60-minute information session. Once they go through the training, there are a variety of ways they can pass on their knowledge and further the movement. Interactive components allow people to see what everyday life is like for those with dementia, which leads to better understanding.
Everything from engaging Dementia Friends Indiana on social media to spending some time with a neighbor or friend with dementia to hosting an information session helps, Ziegler said.
"It’s pretty simple in nature, but it can be hugely impactful overall," he said. "Because this condition affects everybody in every community sector in some way, shape or form, we see Johnson County as a really optimistic area to bring this to and get things moving."
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Dementia Friends Indiana
What: An outreach initiative designed to educate communities across the state about dementia, break down the stigma surrounding dementia, and implement practical changes that make life easier to navigate for those with dementia and for their loved ones.
Who: Part of a nationwide campaign to educate about dementia. In Indiana, it is overseen by CICOA.
Become a Dementia Friend: Dementia Friends help everyone in the community understand five key messages about dementia, how it affects people, and how we can make a difference in the lives of people living with the disease and their caregivers.
To become a Dementia Friend, you can either attend an in-person workshop in Indiana, or watch the online video session and complete the workbook on your own.
Go to https://www.dementiafriendsindiana.org/become-a-friend/
Upcoming Dementia Friends sessions in Johnson County:
6 p.m. Nov. 20 and Dec. 4, Northwood of Franklin clubhouse, 2018 Cedar Lane, Franklin; go to www.dementiafriendsindiana.org/events-calendar to register.
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