Hospice workers in Marion who work in close contact with Alzheimer’s and dementia patients have created a project called “Dementia Live,” helping people better understand the disease through conversations, interactions and a simulation. 

 Melise Oakley, who works for Hospice of Southern Illinois, said dementia is a symptom of Alzheimer’s disease, which typically leads to a severe loss of memory, language, problem solving and other mental abilities. 

There are over 400 different dementias, including a post-COVID dementia. 

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Oakley said Dementia Live is all about empathy, and it includes a simulation that allows people to feel what it is like to have Alzheimer’s. 

 “It immerses you into what it feels like to be cognitively impaired with your senses changed. The gear simulates specific changes that alters your eyesight, hearing and also your touch,” Oakley said. “It’s a very safe experience, but it’s powerful and it’s very effective to strengthen the understanding and empathy towards people that have this.’

 Oakley said she has a special connection with her Alzheimer’s patients, as she has a learning disability and understands how it feels to think a little differently from other people. 

She said people with Alzheimer’s often face frustration, anxiety and confusion even when doing simple tasks such as eating or brushing teeth.

 “When you’re going to Walmart, and you’re hurrying up, we look up and we’re like, ‘Why is this person going so slow?’ and you see them fumbling around, I learned to take a step back and be like ‘okay, this person can’t see as well as we do; their peripheral vision is deteriorating,” Oakley said. “It just makes you just more sympathetic and empathetic toward people that go through this.”

 In addition to giving the general population empathy for Alzheimer’s patients, the program also helps caregivers to connect with their patients or family members who are suffering from the disease. 

Deborah Hogg, the current director of Dementia Live, is passionate about the project because she lost her mother to Alzheimer’s. 

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She said many people do not fully understand how to care for people who struggle to communicate what they need and often end up causing more pain to the people they love because of this. 

 “The best thing that you can do,” Hogg said, referring to her mother, “is go to her world, not try to pull her into yours. Don’t correct her. If she’s doing something that you don’t think is normal, don’t say ‘don’t do that.’ If she wants to bake a cake with salt, let her bake it with salt instead of sugar, and when it’s finished, let her know how beautiful it is and how it’s great.”

 By traveling to schools, hospitals, prisons and other businesses, Dementia Live is opening the conversation about Alzheimer’s and dementia and reducing the stigma that prevents people from asking for help. 

 “What seems to be common with most is that as the disease is onset, the frustration and confusion that a patient feels, and the embarrassment of forgetting things. They try to hide it,” Hogg said. 

 Lessening this embarrassment is essential, as it encourages people to seek treatment as soon as symptoms appear. 

Oakley said there are currently 6 million people in the US who have Alzheimer’s; by 2050, it is projected 16 million people will have it. 

 While there is currently no cure and no known cause for Alzheimer’s, Oakley and Hogg stressed the importance of maintaining a healthy lifestyle, including balanced diets and both physical and mental exercise. 

 Hogg said COVID-19 has presented a great challenge to many Alzheimer’s patients, as the isolation and uncertainty that nearly everyone has had to overcome is amplified in their situation. 

For this reason, it is more important than ever that people take the opportunity to learn, she said. 

Dementia Live is always looking for more volunteers to help make a difference and change lives.  

 “I want to tell people,” Oakley said. “I get excited, and I love to do what I do. I can’t believe I’m in an organization that lets me do something like this, and I’m so passionate about it.”

Staff reporter Elena Schauwecker can be reached at [email protected].

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