35,000 people affected by dementia in Nebraska; advocates urge state to do more

LINCOLN, Neb. (KLKN) – Alzheimer’s care advocates in Nebraska came together at the State Capitol on Wednesday to urge lawmakers to support some potentially lifesaving measures.

Legislative Bill 814 would create a new position within the Department of Health and Human Services that’s solely focused on improving how the state handles dementia.

The disease currently impacts at least 35,000 people statewide, according to the Nebraska Chapter of the Alzheimer’s Association.

The group says the department already has staff designated to chronic diseases like asthma, arthritis and cancer, but there is no one devoted to Alzheimer’s or dementia.

Nick Faustman, the group’s director of public policy and advocacy, said the lack of coordination hurts Nebraska’s ability to help those affected by the disease.

He said his grandmother had some type of dementia but was never diagnosed.

“It was a very painful experience for my family as she kind of lost cognitive ability,” Faustman said. “A lot of the people we have here today are actually living with folks that are suffering from the disease, and they’re all here to support those individuals.”

Tami Robinson-Soper said her mother was diagnosed with Alzheimer’s in 2014, and she wants others to be able to access resources that she struggled to get.

“It wasn’t something my family had ever had experience with,” she said. “I want to do this work because my mom was an elementary school teacher and a community advocate, and I know that helping others who are dealing with this process would be important to her.”

Robinson-Soper said it’s past time for the public to understand the challenges of Alzheimer’s and dementia.

“I think it’s super important for elected officials to hear from their constituents, who are actually living the experience, to know how important some of the bills that are put in front of them really are,” she said.

Emily Gossard said her father was diagnosed with Alzheimer’s at the age of 62 and died about four years later.

“Four years I watched as the disease ate away at everything he ever was and everybody he ever knew,” she said. “I watched it take a person who was fun-loving and outgoing and made him aggressive, mean.”

Gossard said she loves advocating and will continue to do this on behalf of her dad and others affected.

“I’m always ready,” she said. “Advocating on Alzheimer’s is something I’m very passionate about. This is something I’ll never stop fighting for.”

Supporters are also calling attention to a couple of other proposals, including Legislative Bill 57.

That would create a paid family and medical leave insurance program to help eligible workers care for themselves and family members with serious illnesses, including Alzheimer’s and dementia.

Another proposal, Legislative Bill 345, would help make sure Nebraskans are aware of specialized care that can ease symptoms and stress caused by serious illness.