It’s the sixth-leading cause of death in Idaho — and nearly half the people living with it have not been formally diagnosed.

Alzheimer’s disease and other dementias affect approximately 25,000 Idahoans. By 2025, that number is expected to increase to 33,000. Local leaders, experts and family caregivers gathered Thursday at Lake City Center in Coeur d’Alene to discuss public policy and legislation in relation to dementia.

“There is so much work that needs to be done to inform and educate more people about what’s really happening … and where to find help and support,” said Bob Le Roy, executive director for the Alzheimer’s Association Washington State Chapter, which serves Washington and North Idaho.

Le Roy said there are approximately 83,000 unpaid family caregivers in Idaho. These individuals provide 94 million hours of care, worth $1.19 billion. But the cost of caregiving isn’t just financial. There’s an emotional toll, as well.

“Dementia caregiving is a very draining, all-consuming labor of love,” said Dr. Susan Melchiore, a geriatrician and the Medical Director of the North Idaho Memory Clinic. “We need to find ways to support the family caregivers.”

Robin Lenz of Coeur d’Alene cares for her 85-year-old mother. She emphasized the importance of respite care.

“I see these people, mostly women, who are beat up emotionally,” she said. “They need to know that they’re important as an individual.”

Lenz became emotional when she spoke about her mother, who is living with dementia.

“It’s hard to watch,” she said. “Mom was very vibrant. She played softball until she was 80. She never sat down.”

There is a lack of appropriate facilities and trained staff to care for patients with dementia-related behavior in Idaho, Melchiore said. In fact, there are no skilled nursing facilities that support a wandering patient in Kootenai County, because the level of regulation, state and federal oversight that is required of skilled nursing facilities is cost-prohibitive.

Melchiore said there is a critical need to change regulations related to the special care needs of this population.

“Currently, these patients fall into a huge and costly gap,” she said.

Reps. Ron Mendive and Don Cheatham both attended the meeting. Mendive said he came to learn more about the “growing problem” of Alzheimer’s and other dementia in Idaho, as well as what the Idaho Legislature can do about it.

The issue is close to Cheatham: Someone in his family is living with dementia.

“[I’ve seen] all the pain that people who can’t help themselves have to endure alone,” Cheatham said. “There needs to be more community awareness.”