The Unknown

Just diagnosed with Alzheimer’s, a man feels embarrassed—even though he shouldn’t be—and he doesn’t want anyone except his family to know.

Caught early, the man doesn’t show obvious symptoms, so they aren’t facing immediate problems, but fear clouds his and his family’s future. What are they going to do when symptoms are unmistakable? Even more frightening, what will they do when he is totally incapable of caring for himself?

“There’s so much fear wrapped up in it. The fear of the unknown, of not understanding the course of the disease, not knowing where to get assistance and help,” says Kristi Wick, Vicki B. Gregg Chair of Gerontology and assistant professor in the UT Chattanooga School of Nursing.

Giving hope to people in those situations is one of the main goals of engAGING Communities, a statewide program started in 2019 by Wick and Jessica Freeman, assistant professor in the UTC Department of Communication.
Funded by a $1.5 million grant from the Tennessee Department of Health, the program collaborates with faith-based and religious communities as well as advocates for aging adults to build an Intrastate Network to Deliver Equity and Eliminate Disparities (INDEED) system.

“We know that religious and faith-based communities look to those leaders for trusted information and resources,” says Wick, recently presented with the Community Hero Award at a Southeast Tennessee Area Agency on Aging and Disability. “Being able to tap into that leadership and earn their trust and explain the need, they are able to learn how to serve not only their congregations but eventually their neighborhoods and communities as well.”

The goal is to create a network of volunteers who can offer informational resources, training materials and emotional support to those dealing with dementia issues.

To extend its reach and spread the word, engAGING Communities has partnered with seven organizations around the Southeast: the Tennessee Department of Health, Tennessee Chapter of the Alzheimer’s Association, Tennessee Alliance for Legal Services, Honoring Choices Tennessee, Chattanooga’s CIT (Crisis Intervention Team) Connect, as well as Atlanta’s Alter and Heart Tones in Raleigh, North Carolina, both of which focus on the Black communities.

In 2022, workshops have been held in Chattanooga, Kingsport, Knoxville, Nashville and Memphis. Visits to more rural regions in the state are scheduled.

“We will be going back to the major cities/regions again, but we will also go to Northwest, Upper Cumberland and South Central, where rates are high,” Wick says.

Clay, Overton and Hancock counties in the Northeast and Lauderdale, Crockett, Gibson and Carroll counties in the West have at least 12 percent or more of their residents suffering from some form of dementia or Alzheimer’s, according to data from the state Department of Health.

Faith-based institutions such as churches are a trusted source for information on many subjects, says Fayron Epps, founder of Alter.

“A lot of our members are in the Bible Belt and are disproportionately impacted by cardiovascular disease, and that leads to vascular dementia,” Epps says. “So that’s why it was very interesting to me, knowing about this program for the state of Tennessee and how great this would be if I can become a partner and bring resources, in particular to the Black communities.”

Bringing faith leaders into engAGING Communities “just seemed like a nice fit,” says Sally Pitts, director of the Tennessee Department of Health. “What we saw were the faith leaders and faith communities were often leading the COVID-19 response. They were the ones identifying and supporting the most vulnerable populations within their communities.”

After receiving the INDEED grant, Wick and Freeman traveled across Tennessee, presenting five-hour workshops which, to date, have been attended by almost 400 people.

In each case, the information they present has resulted in wide-eyed amazement from 100 percent of the participants, Wick says. Questions are asked nonstop.

“The ‘what ifs’ or ‘what does this mean?’ Even just explaining what the word ‘dementia’ means. Understanding the difference between Alzheimer’s disease and dementia and that there are different types of dementia.

“We have this five-hour workshop and probably could have gone 12 hours,” she says.

Pitts describes the situation succinctly: “They don’t know what they don’t know.”

Next steps include returning to the regions where the workshops have been held to help new programs get up and running to address dementia issues in their communities, Wick says. Connecting advocacy groups with information and resources is key.

“We’re basically taking everyone that’s attended the open houses and saying, ‘OK, what is it that you’re interested in?’ then plugging them into those things,” Wick says. “The idea being that, after we’re gone, people are able to meet those resources that are there in their local community.”