BUFORD, Ga. — Former President Jimmy Carter has been on home hospice care for more than three months now. It’s helping bust the myth that hospice care is only for the last few hours or days of someone’s life.
Now, hospice is also being used as a solution for another growing condition – dementia.
For Capstone Hospice, based out of Peachtree Corners, people living with dementia make up 60 percent of the 311 patients they currently serve.
“It’s the number one diagnosis on our program,” CEO Hugh Henderson said.
When Henderson first started in the hospice care business 30 years ago, he says cancer patients were the majority by far, but as treatments for cancer have gotten better, neurological illnesses have outpaced them.
It’s changing the way they need to provide care.
“Caring for someone with Alzheimer’s dementia is not the same as caring for someone with pancreatic cancer,” Henderson said.
To help better inform his staff, Henderson brought in the AGEucate Training Institute. Its trainers provide a powerful dementia simulation training to help people experience first-hand what it might be like to have dementia.
Participants wear headphones that play sounds to simulate the inability to filter out background noise, glasses to simulate the tunnel vision people with dementia often get, and gloves to make it harder to perform fine motor tasks like buttoning a shirt.
Then, with all of that, the trainer calls out instructions to follow.
Ann Germany provided the training for Capstone.
“Those ten minutes are so life-altering. People come out of that experience, and they go, ‘I had no idea. Literally, I had no idea,’” Germany said.
Even Henderson, who’s a veteran in the business, says it affected him.
“It was very headache producing. I was irritated, annoyed, lonely, and felt silly and foolish because I was given instructions, but I couldn’t really hear. I didn’t know what to do. To think that someone else is dealing with this 24/7? That is empathy overload,” Henderson said.
Empathy is exactly the goal.
The training aims to infuse more patience, compassion and understanding in the people tasked with taking care of the people who need help.
“The burden is on us, not on them,” Greer Thompson said, nurse and Staff Development Coordinator for Capstone.
Thompson does all the orientation and onboarding for new employees at Capstone. She’s also worked as an RN for nearly 30 years, ten of those in hospice.
The simulation training also helps create solutions to difficult problems.
After the immersive simulation experience, participants gather to talk about what affected them, how they felt, and what practical changes they could make to help someone in that situation.
Thompson says it’s already changed the way they provide care, specifically regarding bathing and eating, two activities hospice often helps with.
She says with bathing in particular, her team talked about how to lessen the sting of the shower.
“You don’t just put them in the shower and then turn it on. That is very disruptive. Then, the report is, ‘Well, I tried to bathe Ms. Smith but she just went crazy and wouldn’t let me.’ Well, what if we put a towel over her back? What if we kept her covered and then we get her in the shower? Maybe we’ve warmed up the shower before we put her in?” Thompson said.
The team also came up with possible solutions for mealtimes. Oftentimes, people will reach for someone else’s plate instead of the plate in front of them.
After wearing the glasses during the simulation, Thompson realized it might be connected to their vision changes.
“This kind of hit me like an aha moment, because what happens is they start reaching and the caregivers are like ‘No, no, no Ms. Smith. Your plate’s right here.’ But, she can’t see her plate. She can only see the plate over there,” Thompson said. “Maybe we need a bigger table because they just see the plate across the way. I was like, wow, that makes so much sense.”
They also discussed providing plates that are a different, high-contrast color than the table or placemat to help with depth perception.
Neurodegenerative diseases, like Alzheimer’s disease, affect much more than memory. They can affect speech, swallowing, walking, vision, hearing, and skin sensitivity.
“People think, oh, it's just a memory issue. But no, [this training] shows you the way the brain dies and how that affects them,” Thompson said. “People say, well, I just need to keep my mom walking. But when they really understand, they realize mom can't walk anymore, not because physically she can't do it, but her brain doesn't tell her she knows how to do it.”
Paul Angehr’s wife, Patricia, has been with Capstone Hospice for three years as she lives with late-stage dementia. Paul says bringing in the hospice team has been priceless.
“Three words: peace of mind,” he said. “The whole team showed up. It brought a wheelchair, a hospital bed, the pads, the pull ups, the lotions.”
Paul and his daughter also went through the simulation.
“My daughter came out crying and I came out shaking because no one realizes what may be going on in that person’s mind,” Angehr said.
Patricia now lives at Lia’s Personal Care home in Buford. The hospice team CNA comes by five days a week. Paul is grateful she’s under the care of people who have been trained for her specific condition since he can no longer care for her by himself.
“I think once you understand what this disease is really doing to that person, you’re more compassionate, you’re more patient, you’re more loving, you’re more giving,” he said. “In my mind, every neurologist, every nurse, every doctor, every caregiver, every personal care home, every assisted living, every memory care worker – everyone needs to go through this training.”
The leadership team says every new hire at Capstone will be trained.
“As people's physical lives are extended, we're going to see more and more Alzheimer's dementia. So, it's a proactive way for us to be prepared and to get ready for it,” Henderson said. “If you're not trained in it, it's going to be hard to facilitate a peaceful environment and a comforting environment.”