SPRINGVILLE — It wasn't like Cheryl Hilliard's mother to be in the spotlight.

But when Hilliard's father was diagnosed with early onset Alzheimer's disease at 55 years old, it would be her mother — a shy, loving homemaker — who would assume the mantle of both caregiver and advocate.

"She was really a sweet, sweet woman and kind of got out of her comfort zone to do all that," said Hilliard.

In the 1970s, few resources were available. Mary Louise Davis — also known as "Grandma Lou," or as her great-grandchildren called her, "Grandma Boo" — became a leading advocate for Alzheimer's patients in the Santa Barbara, Calif. area, where she organized fundraisers, put together support groups and created educational programs for nurses on how to treat Alzheimer's patients with dignity.

Hilliard's father, who didn't speak again for the last five years of his life, eventually died from the disease. The spectre of Alzheimer's, once a fact of life for Hilliard and her close-knit family, subsided.

Decades later, Hilliard started noticing that her mother was forgetting names and faces, falling behind on bills and even getting into car accidents.

A geriatric specialist confirmed the diagnosis: At age 79, Grandma Boo — an Alzheimer's advocate who had won awards for her service — became a patient.

A new start

Hilliard and her daughter, Michelle Gardner, became involved in the Utah chapter of Alzheimer's Association after Grandma Boo passed away three years ago.

It's a way for them to make sense of what seems to be a cruel twist of fate.

Last year, the association helped revive a state plan to tackle Alzheimer's disease — conceived by state lawmakers in 2012 — that was passed and then largely forgotten.

"There were no dollars appropriated to it," said Alzheimer's Association Utah chapter director Ronnie Daniel, who "found this plan in the drawer and dusted it off."

"Everybody felt good about 'Hey, we got this plan,' but nothing happened," he said.

In the most recent legislative session, after a push from Daniel, lawmakers assigned the state health department to take charge of the plan and allocated $161,000 in recurring funding.

At the inaugural meeting on Sept. 17, a coalition of health officials, representatives from the University of Utah Alzheimer's Center, the Utah Division of Aging and Adult Services and other researchers and caregivers met to discuss the plan.

Utah has the second highest growth rate of Alzheimer's prevalence in the nation and is expected to have the highest growth rate by 2025.

Currently, 29,000 Utahns and 5 million Americans are living with Alzheimer's. By 2050, 13 million to 16 million Americans are projected to have the disease.

But Alzheimer's disease doesn't get the same attention as breast cancer or HIV/AIDS, Daniel said.

"I really think that Alzheimer's disease is where cancer was 20 or 30 years ago," he said, pointing out that the National Institute of Health spends $5 billion a year on cancer research compared to $400 million on Alzheimer's disease.

Hilliard said people reacted to her father's diagnosis in the '70s as "an embarrassing thing. It was like having a mental disease," she said. "We know now that it's not. It's a physical disease that affects the brain."

By the time Grandma Boo was diagnosed, the disease had become less stigmatized but was just as devastating, family members said.

"She's one of my most favorite people ever," said Gardner, Hilliard's daughter. Her grandmother rarely missed a concert, dance recital or road trip. She was a confidante and a friend. "She has this laugh that was, like" — Gardner takes a deep breath and erupts in cackles — "but she was more of an introverted person — but so sweet."

Hilliard, who later moved to Provo so she could put her mother in a local nursing facility, recalled enlisting the entire family to help care for Grandma Boo, battling with doctors to keep her on memory medication, observing every small sign of memory loss like landmarks on an irreversible journey.

She said patients and their families need better-educated caregivers and more support.

"It was like constantly having to be on guard," Hilliard said. "And that's what she went through with my dad. That's the hardest part."

Heather Borski, the bureau director for health promotion at the health department, said the department is making Alzheimer's a priority after not taking a "strong focus" on it in past years.

"Given how many people are affected by it and the impact Alzheimer's disease has on our health system, it is a public health issue and it is critical for the Department of Health to be playing a leading role in the topic," said Borski, who is a member of the coalition.

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Alzheimer's has ravaged generations of Dean DeMoe's family — his grandmother, father, siblings — all in their 40s and 50s.

Borski said the group will focus on raising public awareness about the disease and training doctors to better recognize its symptoms.

The council also hopes to improve support for caregivers, she said. Family and friends like Hilliard and Gardner reported providing 17.9 billion hours of unpaid care to those with Alzheimer's and other dementias last year.

"Part of the challenge is with only $160,00 allocated there's only so much that can be done each year, but part of the process is [deciding] 'What are the priorities here that might need more legislative action?'" Daniel said.

The walk

Gardner and Hilliard know that among the top ten causes of death in the U.S., Alzheimer's, at number six, is the only one that can't be prevented, cured or slowed.

Both have declined genetic testing for the disease, knowing there is no way of stopping its progress.

"Some people could say we're living in denial, but I honestly would rather not know," said Gardner. "The best thing we can do is just raise money so we can keep doing research and raise awareness."

So they walk.

After Grandma Boo died three years ago, the family began attending the annual walks organized by the Alzheimer's Association in her honor.

They have regularly been top fundraisers. Saturday in Provo was no different. "Team Boo" raised $4,340 toward Alzheimer's prevention, easily taking the top spot.

"This," said Gardner, "is for my grandmother." Email: dchen@deseretnews.com Twitter: DaphneChen_

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