Advocating for dementia resources for all Illinoisans

Ryne and his mother holding hands.

“This picture is very important to me and captures a very special moment,” confides Volunteer Advocate Ryne Hunt. Up until now, the only person who had seen it was his wife. The photo features Ryne and his mother grasping hands. His mother lived with dementia for seven years. The picture was taken the first day Ryne visited her care facility after roughly five months of separation due to visitation restrictions. That was one of the final days when Ryne was able to hold his mother’s hand: she passed away mere days after the snapshot was taken.

Ryne joined the Alzheimer’s Association Illinois Chapter policy efforts as a Volunteer Advocate two years ago. Ryne’s mother was diagnosed with dementia at age 59 and her journey with the disease lasted seven years. “At such a young age, mom was still very much physically strong,” he shares. “Alongside my dad and brother, we all three did what we could for her and tried to navigate the challenges the disease brought.

“More than anything, I want people to know that Alzheimer’s doesn’t just affect the one with the disease but the entire family. The best way I can describe it is it’s like you have to deal with losing your loved one repeatedly. They may be ok or better one day and the next day or even hour they have no idea who you are or where they are.”

Ryne, his brother and their mother.

Ryne, his brother and his father shared the caregiving responsibilities. Watching his mother’s symptoms progress took an emotional toll on all of them. “We knew through it all mom was not the mom or the wife we all knew our entire lives,” says Ryne. “We all played our part and, in the end, when mom left us, I think we all looked back and at each other with a different take on Alzheimer’s/dementia.

“Fighting through the emotions of it all and knowing ultimately what the result [of my mother’s condition] would be was so hard. It’s a cruel disease, but it has given me a drive to fight and to help not only find a cure, but build awareness and help family caregivers.” 

Since becoming a Volunteer Advocate, Ryne has lobbied his local leaders to support legislation to make Illinois a more dementia capable state. “Funding for research is so important,” shares Ryne. “It’s the key to fighting the battle. Physician training is something that’s been improved upon, but I think more is always better.”

Ryne volunteers so that dementia capable policies benefit all Illinoisians, not just those with access to large health systems. He emphasizes that “people and caregivers in smaller communities where big hospital access may be limited need to know they can discuss Alzheimer’s with their family physicians and find the help, resources, and direction they need.”

Ryne and his mother.

Last year, Public Policy staff, state legislators and volunteer advocates helped pass Senate Bill 677—which ensures ongoing dementia training for healthcare providers. It is the strongest dementia-specific education mandate enacted for healthcare providers in the country. In 2022, they are expanding their advocacy to guarantee dementia training for other professionals who serve those living with a dementia, including paramedics.

Ryne is participating in this month’s Illinois Week of Action (February 22-24) to honor his mother, his community in Harrisburg and all families facing dementia. He will join together virtually with volunteers across the state for the Opening Ceremony at 6pm on Tuesday, February 22. The event will be held via Zoom, where advocates, staff and legislators will share why they fight to end Alzheimer’s.

“No one wants to think about or ever have to experience Alzheimer’s. The disease is devastating to a family…Caregiver support is also very crucial and will better help the family and patient through the fight.” The Alzheimer’s Association offers support groups, Care Consultations and a 24/7 Helpline (800.272.3900) for families and individuals impacted by the disease.

In the end though, we all must come together to fight. It’s a common ground we can all agree on.” 

Join Ryne for Illinois Week of Action, February 22-24. Share your story and compel our state leaders to prioritize the fight to end Alzheimer’s—all from the comfort of home. Learn more and register at endalzillinois.org.

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