Ever since her grandmother was officially diagnosed with dementia during her freshman year of college, Cassie Cook has been working toward making the lives of people with dementia and Alzheimer's, as well as their caregivers, better.

"It all started with my grandparents, Bill and Mary Ann Derrick. Both of them passed away last year, within six months of each other. My grandmother was the one with Alzheimer's disease, which she had for around 10 years. My grandfather was her biggest supporter. He was a huge advocate, so his connection with it really drove me to want to be part of it," Cook said. "The last four years that she was living with Alzheimer's, I really stepped in and joined the walk committee here in New Richmond and wanted to be part of it, community-wide."

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Cook - who works with senior apartment, assisted living and memory care residents at Woodland Hills in Hudson as a life enrichment and volunteer director - recently represented western Wisconsin at the Alzheimer's Advocacy Forum.

"While I was out there, I got to network with 1,200 people who are from every state. It is a time where we all get together and tell our stories, but also where we learn about four big things we are trying on the budget side of Congress," Cook said. "Our whole goal is to learn about advocacy, how to advocate for Alzheimer's disease, as well as how to bring the advocacy work back home with you.

"It was a motivating and powerful experience that not many people get the opportunity to do. But when you do, it really motivates you to want to keep pushing for a way to end Alzheimer's. One day we will hopefully be a world without it."

The direction of Cook's life was forever changed when her grandmother was diagnosed with dementia. Originally, Cook wanted to be an occupational therapist because she wanted to help people and she enjoyed being with people and socializing.

"So, when I went to college, I had an idea of what I wanted to do, then I didn't. The year I went to college was the year my grandma got her official diagnosis of dementia, so that really gave me that drive to do something that I knew would make a difference in other people's lives. It would also give me the knowledge and support I needed to help my family through this time," Cook said.

Cook ended up getting a degree in therapeutic recreation, which allows her to help people like her grandmother by enhancing their quality of life. She wanted to create programming that gave her residents a purpose and allowed them to go back to earlier times in their lives to do activities they enjoy.

"My grandma and grandpa were always huge supporters of me and helped me get through college. The day I graduated, they obviously couldn't be there since my grandpa was home taking care of my grandma, but I went home that next weekend and took a picture with them with me in my cap and gown. My grandmother was crying, even though I didn't think she had the emotion to do that. But I knew she was super proud of me," Cook said.

In addition to her experience with her own family, Cook has spent the last five years working with the residents of Woodland Hill, a member of Presbyterian Homes and Services, who have memory loss.

"I've had the opportunity to be there for people that had memory loss who are going through Alzheimer's and dementia, supporting families and being there for my own family as well as the people I work with every day," Cook said. "I spent my summers with my grandma so my grandfather could have respite time, just for himself, because it is a draining disease. There are a lot of unpaid caregivers out there and my grandfather was one of them. He'd spend hours and hours taking care of my grandmother since she couldn't take care of herself. I wanted my grandfather's health to be at the forefront as well."

Being able to spend her summers with her grandmother brought Cook closer to her, but also helped her see how hard it can be to be a caregiver for someone with dementia or Alzheimer's.

"Alzheimer's is a scary disease and I don't want to see other families go through this. Obviously, right now, there are a lot of families affected by this disease, which is why we are making this push to get congress involved and get more funding for research, education, family support and even a push for younger onset," Cook said. "That is a big change we are seeing, is that a lot more people are being diagnosed earlier and we want to be there to support those families who don't have the resources to care for their loved ones. Or if they don't know where to start."

The biggest piece of advice Cook has for families who have someone in their lives who has been diagnosed with Alzheimer's or dementia is to stick together and not let family dynamics get in the way of the disease.

"Everybody has a role in it and everybody can have a role in it. Just being there for one another is a huge thing. Our family stayed pretty strong throughout the whole process with my grandma," Cook said. "I think if you can stick together, work together and be there for your loved ones as a family, you will be better off. To create more stress isn't a good thing. Living in the moment and creating joy each day for your loved one is a huge thing."

The Western Wisconsin Walk to End Alzheimer's is scheduled for Sept. 21, with registration beginning at 8 a.m. at the New Richmond High School. For more information, visit alz.org/walk and then search Western Wisconsin or 54017.

"That is where my drive was. The night before my grandfather passed, one of the last things he said to me was 'don't stop fighting for this disease.' He wanted to be the top fundraiser for the fundraiser last year and he was. He said he didn't want me to stop fighting because he never stopped fighting for my grandma," Cook said. "I took the lead from my grandpa and have been advocating ever since that day. And I will continue to fight until there is an end to this disease."

Four Asks from Alzheimer’s Advocacy Forum

The “four asks” Cook and the rest of the forum brought to the attention of Congress during its meetings in D.C. included:

  • Support for an additional $350 million in Fiscal Year 2020 for Alzheimer’s research activities at the National Institute of Health.
  • Support for an additional $20 million in Fiscal Year 2020 to implement the BOLD Infrastructure for Alzheimer’s Act at the Centers for Disease Control and Prevention.
  • To cosponsor the bipartisan Improving HOPE for Alzheimer’s Act, which would help educate clinicians on Alzheimer’s and Dementia care planning services through Medicare.
  • To cosponsor the bipartisan Younger-Onset Alzheimer’s Disease Act of 2019, which would allow individuals under the age of 60 to be eligible to access programs under the Older Americans Act.