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SALT LAKE CITY — Vern Gillmore was in the Marine Corps and fought in the Korean War. He taught high school and became principal of a school for at-risk teens.
But the biggest battle Gillmore has faced is the one he is now fighting in his head.
"I call him 'Big Al.' It's short for Alzheimer's, you know, and Alzheimer's is in your head. It's in your brain," he said. "I know, sooner or later, I'm going to die with Alzheimer's. Big Al will win. But I'm going to show him a thing or two."
Gillmore is one of 28,000 Utahns with Alzheimer's disease, the highest per capita prevalence of the mind-crumbling disease in the country.
Because Utahns live longer and are healthier people overall, it is projected that Alzheimer's will double its prevalence by 2025, leaving many more individuals and families to grapple with its effects and exponential costs for decades to come, according to Utah Alzheimer's Association Director Ronnie Daniel.
"While there's still no way to cure, prevent or even slow down Alzheimer's, people still need to have access to support groups and other available resources that will make it easier to navigate this big life change," Daniel said. "It is a critical issue that we need to pay attention to."
The local chapter of the Alzheimer's Association was behind dozens of meetings that helped to develop and lead Utah lawmakers in 2012 to adopt a state plan for addressing the disease. It was approved as a Senate Joint Resolution, recognizing that Alzheimer's was an "ever-growing health concern among Utah families," according to the bill.
But not much has been done with the state plan since.
"No state agency has taken ownership," Daniel said of the plan that contains more than 90 identified strategies to help Utahns cope with Alzheimer's. He hopes the rubber will meet the road with HB175, which designates Alzheimer's as a public health concern and assigns the responsibility of implementation to the Utah Department of Health.
"It's terrible. It's been two years, and we've gotten nowhere," said Gillmore, who was diagnosed a year after Utah's action plan was approved. "It's like we almost win the battle, but then got kicked out of it.
"You always hear about cancer and lung disease, but you don't hear about Alzheimer's," he said. "Alzheimer's takes a tremendous emotional toll on the family."
Gillmore, 82, used to spend almost all of his free time volunteering for various groups or organizations, including the American Red Cross. He served at multiple disaster sites across the country and had just returned from three weeks on the East Coast following the wreckage of Hurricane Sandy in the fall of 2012.
"I realized there that my brain just was not functioning very properly," he said. "That was a terrible feeling because I've been a quick thinker and responder all my life."
After multiple doctor visits, a neurologist confirmed Gillmore was in the early stages of Alzheimer's disease, a progressive mental deterioration that eventually leads to complete cognitive decline.
"I was ashamed. I was shocked and confused. I was terribly depressed," he said.
Gillmore said he was upset that he might not be able to keep volunteering at the numerous places he had for so many years.
"I love volunteering. I've done that all my life, and I thought, 'My life has come to an end,'" he said. "There's nothing more I could do than sit home and feel sorry for myself."
But Gillmore, who looks and acts nothing like his age, decided to give "Big Al" a run for his money.
"I know darn well that I can make a difference," he said.
And Gillmore is one of the Alzheimer's Association's biggest advocates, locally and nationally, sharing with anyone and everyone he meets how early diagnosis can impact health outcomes.
He exercises an hour a day, six days a week, and says he will do that and keep himself mentally active "at least until I'm 90."
"Big Al knows he's got to go back into his cave," Gillmore said.
And while the Stanford graduate is still occasionally embarrassed by his forgetfulness and his lack of problem-solving skills, he's determined to "keep at it."
Bonnie Shepherd, a Salt Lake City resident who participated in the creation of the state plan, said her husband, Ned, was diagnosed at a young age and ultimately died with the disease.
"The burden that dementia puts on a family, especially if it is a young family, is huge," she told members of Utah's House Health and Human Services Standing Committee on Wednesday. "Right now, Alzheimer's and related dementias is like cancer was. People don't talk about it. They're embarrassed about it."
Shepherd said she hopes further action from legislators will help reduce the social stigma associated with the disease.
"You still love them. You care about them. You're bonded to them, but your life is very different," she said.
Additional support that would come from increased awareness of Alzheimer's, Shepherd said, would make life easier for her and the more than 132,000 caregivers in the state who provide help for the 80 percent of patients who live at home with their disease.
"How in the heck do you turn on a darn computer?" Gillmore joked.
Fortunately for him, he said, his wife knows a thing or two about computers.
"I have a good handle on it, but I also know it's in my head and I'm going to die with it," Gillmore said.
HB175, sponsored by Rep. Paul Ray, R-Clearfield, aims to get the ball rolling on a multi-faceted plan that will increase awareness of Alzheimer's among Utah residents and the medical community to help doctors better deal with diagnosis and treatment of the disease, as well as eventually improve access to services for people with Alzheimer's disease and their families.
It will empower caregivers through a supportive network of resources and help the general public deal with people who exhibit symptoms of cognitive decline because of the disease.
Accepting Alzheimer's as an officially recognized public health concern will also open doors to future research that could lead to new treatments and diagnostic tools.
The public is invited to the state Capitol on Thursday for Alzheimer's Association advocacy, during which Daniel will issue a call to action, and patients and caregivers will talk about their perspective of the disease.
For more information, visit www.alz.org/utah. Email: wleonard@deseretnews.com Twitter: wendyleonards
