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Advocate asks lawmakers for funding to help Iowans living with dementia

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An Iowan who has been diagnosed with progressive dementia is asking lawmakers to provide funding for dementia care specialists.

An Iowan who has been diagnosed with progressive dementia is asking lawmakers to provide funding for dementia care specialists to help Iowans find and navigate support services.

Kevin Dill of Waukee said when Iowans are diagnosed with dementia or Alzheimer’s disease, their doctor may provide a prescription, but doesn’t connect the patient to programs that can help. They’re left to research that for themselves.

“Someone living with dementia doesn’t really have the ability to do that,” Dill said. “And the caregiver is so overwhelmed at that point, that any pamphlet you give her will just go on a table and be lost in the shuffle, because she’s too busy taking care of the person living with dementia.”

Dill said he set up a way for veterans to find and access services when he served as the Black Hawk County Veterans Affairs director.

He said that combined with his experience of being diagnosed with Lewy body dementia and talking with people with dementia from all over the world led him to the idea of dementia care specialists. They would connect people with dementia and their caregivers to services and support groups.

Dill wants state lawmakers to put $750,000 into funding these new positions. But the legislature is advancing a $2.1 billion health and human services budget that doesn’t include the funding.

Rep. Joel Fry, R-Osceola, is the lead House member on the health budget. He said he has had conversations about it with the Alzheimer’s Association and officials with Iowa Department on Aging, but so far they’ve decided to not provide that designated funding for dementia specialists.

“I’m not sure that that’s the best way to go about—we may be able to use resources from the Department on Aging and some of their staff to be able to be the experts as well in dementia care,” Fry said.

Dill said state leaders should fund the specialists to help improve the quality of life for Iowans living with dementia.

“It’s just maddening to me that if somebody is in need, and all you say to them is, ‘We’ll pray for you and have a program for you,’ and then just walk away, I don’t understand that,” Dill said. “You need to take somebody by the hand and say, ‘Here, let me show you how to use the services. Let me connect you with the services. Let me stay on this journey with you and help your caregiver do this.’ Why do we lay the burden on the caregiver and the person living with dementia to find the services they need? We should never do that.”

Dill said the number of people living with dementia, including veterans with dementia, is expected to increase in the coming years.

He helped create dementiafriendlyiowa.organd continues fundraising efforts to help people with dementia and veterans.

Katarina Sostaric is IPR's State Government Reporter