It's hard to be the breadwinner, the mom, the dad, the taxi driver, the financial planner, the disciplinarian. I never thought I'd be a full-time caregiver at 36 to a spouse. —Jamie Gordon

SALT LAKE CITY — Jamie Gordon takes her children to school every day.

The 36-year-old West Jordan woman goes to work for a few hours, then returns home to take care of her 39-year-old husband.

"It's hard to be the breadwinner, the mom, the dad, the taxi driver, the financial planner, the disciplinarian" Gordon said. "I never thought I'd be a full-time caregiver at 36 to a spouse."

Gordon's husband, Jaren, was diagnosed with metachromatic leukodystrophy in 2006 — a lack of an enzyme that leads to a breakdown of the myelin sheath. That resulted in damage to the frontal lobe of his brain, or frontotemporal dementia.

"My dad acts like a 2-year-old, and sometimes it's funny," 9-year-old Braxton Gordon said. "He loves video games more than anything in the world."

Jamie Gordon and her two other children, ages 12 and 14, spoke Monday at an advocacy day at the state Capitol to increase support and awareness for those with dementia and Alzheimer's disease.

The number of Utahns with Alzheimer's disease or other forms of dementia is the highest per capita in the nation, according to the Alzheimer's Association.

In 2000, there were 22,000 Utahns living with dementia. That number is expected to increase by 86 percent in 2020 and 127 percent in 2025.

It is estimated that 132,000 Utah families provide care for their loved ones at home. In 2010, those families provided more than 150 million hours of care at home, according to the Alzheimer's Association. Eighty percent of dementia patients live at home.

Ronnie Daniel, executive director for the Alzheimer's Association, said the Alzheimer's State Plan Task Force was adopted during the 2012 legislative session. The task force has five goals and 93 specific strategies to help those with dementia in the Beehive State.

"Since 2012, nothing has happened to institute any of those specific recommendations," Daniel said, adding that the key to creating a world without Alzheimer's disease is public policy and advocates.

Gordon said she wants to see services in Utah based on illness, not age. Her family is unable to receive respite care because her husband is so young.

"It's very difficult and very tiring," she said. "My kids keep me going."

Rep. Carol Spackman Moss, D-Salt Lake City, said dementia is unlike other diseases or disabilities.

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"It's not a disease you can put a pretty face to," Moss said. "People all think, 'Oh, I hope that doesn't happen to me,' and rather look the other way, sadly."

Gordon said her husband looks like a capable 39-year-old man. She said it's difficult for her to watch her spouse act like a child.

Making her husband breakfast, helping him walk and even putting him in timeout was something she never anticipated.

"It's just something I have to do," Gordon said. "I love him with all my heart. But after the trial of this disease, it is a different kind of love."