Each month, we’re featuring an advocate who engages with policymakers to ensure priorities that improve the lives of people impacted by Alzheimer’s and all other dementia remain top-of-mind in Congress.

Kelly Kalkofen’s advocacy story is rooted in personal loss — losing her mother, Patty, to Alzheimer’s in 2020 — and in the decade she spent watching the disease reshape her family. The Oregon native’s experience led her into engagement and advocacy, and eventually, inspired her daughter to join her. Today, Kelly’s commitment is fueled by a determination to ensure future families have better options, better support, and better outcomes. 

“My mom first started showing symptoms in 2010.”  As Patty’s condition progressed, Kelly’s father became the primary caregiver — a role that took a significant toll. “His health started deteriorating to the point where we were getting worried about him,” said Kelly. “Are we going to lose him before her?”

The emotional, physical and financial strain intensified as her mother entered the late stages of the disease. Kelly stepped in as a secondary caregiver, especially during moments when her father needed rest or relief.  

During the final days of her mom’s life, COVID restrictions limited who could be present. “We knew that the time was dwindling…I was there all the time. I was the one that was in the room when she died… I’m actually really glad it was me,” said Kelly. Her caregiving journey left a permanent imprint — one that continues to shape her advocacy today. 

During the 10 years her mother lived with Alzheimer’s, Kelly turned to the Alzheimer’s Association for support and began volunteering — first through the Walk to End Alzheimer’s. But, everything changed after her mother passed. “Right away, I called the Alzheimer's Association. I was like, ‘Let’s step it up a bit.’”  

Because Kelly was a longtime educator, as a volunteer, she initially gravitated toward community education efforts. But, as she was describing to others all the different ways to get involved with the Alzheimer’s Association, she felt a pull: “I really want to do advocacy.” 

She quickly discovered that advocacy was where she felt most energized: “Don’t tell anyone, but I like advocacy the best.”  

Kelly describes herself as “a super political person,” involved locally and at the state level beyond just Alzheimer’s advocacy. “I get more starstruck [when I see lawmakers] than I do if I’d see an actor or a famous athlete.” As a regular at Oregon’s State Advocacy Day, her belief in the power of state action is unwavering: “I believe that the biggest difference is made locally.” 

At the state level, Kelly has advocated for dementia training for first responders, caregiver support and stronger memory care standards. While attending state advocacy day in February, Kelly urged her state legislator to support social services for Oregonians impacted by Alzheimer’s and other dementia. Kelly is relentless in her commitment to improve systems for families like hers. Her “why” has evolved, too. 

“My reason to advocate started out very small, for my little circle, for my mom, for my daughter,” said Kelly. “Now it’s just grown into something huge. It really is the spirit of the fight, and the cause, and what the Alzheimer’s Association stands for.”

One of the most powerful moments in Kelly’s advocacy journey came when she brought her daughter, Grace, to the AIM Advocacy Forum in Washington, D.C., in 2025. “I thought that this would be a really good experience for her, and it was,” said Kelly.

During their meetings on Capitol Hill, Kelly and Grace shared their story about the impact of the devastating disease on their family and how critical bipartisan legislation like the ASAP Act will help. 

Several of the lawmakers also invited Kelly and Grace into committee rooms and one even brought them to the Capitol itself. Kelly reflects on her daughter sharing their story directly with Sen. Jeff Merkley, who even paused to ask Grace a bit about herself. Kelly fondly remembers later at home: “We were watching CNN, and I said, ‘There’s Sen. Merkley!’ And Grace said, ‘That man knows where I went to high school!’” 

Grace now proudly shares her advocacy experience with her new college classmates. Kelly sees this as generational momentum and knows advocacy will stick with her for a long time. 

Today, Kelly serves as the Portland Walk to End Alzheimer’s Chair and remains deeply involved in both state and federal advocacy efforts. Her voice is trusted, her perspective shaped by lived experience, and her passion undeniable. With Alzheimer’s affecting multiple generations in her family, Kelly is determined to change the future: “I don’t want my daughter to go through what I went through with my mom, and what she went through with her mom,” said Kelly. “It’s time to break the cycle.”

Join Kelly in the fight to end Alzheimer’s and other dementia. Become an advocate.