Alzheimer’s disease affects millions of American families, and for singer and actress Katie Stevens, more research and funding will make all the difference.
In 2009, when Katie Stevens auditioned for “American Idol,” her introduction video included a story about her grandmother, who had been diagnosed with Alzheimer’s that same year. “I was heavily involved in helping my mom take care of her, feeding her, all of those things that she couldn’t do on her own anymore,” Stevens said. “When I left, it was really hard on me emotionally.”
Grappling with her absence
Stevens, who has also starred in the Freeform TV series “Faking It”and “The Bold Type,” shares about the struggle: “I was 15, and I just remember I had friends who had grandparents who suffered through Alzheimer’s, and I saw how hard that was on them.” But despite being away, Stevens still found a way to be a regular presence in her grandmother’s life. “I made sure I came home as often as I could and talked to her on the phone every day.”
An estimated 5.8 million Americans are living with Alzheimer’s, and there is currently no cure for the disease. For families who become caretakers for loved ones with Alzheimer’s, it can be hard to know exactly what to do. “She couldn’t be alone,” Stevens said, “so she would alternate between staying at my family’s house and my uncles’ houses. We did that for probably a year or two until we realized it was making her decline faster.”
Consistency is key
The most important thing for caretaking families to provide is consistency. “When we realized that she was dwindling from moving between all of the houses, we got two nurses that would stay with her all day,” Stevens said. “It actually slowed her progression because she had an everyday routine that she stuck to, which in her case helped her remember more and bring back memories.”
Sharing her story
Being able to share her grandmother’s story on “American Idol”allowed Stevens a platform to reach millions of people with similar experiences. “When they did the story on me and my grandmother, it was crazy how many people were affected,” she said. “To get that response from people sharing their experiences, it was pretty mind-blowing.”
Stevens now uses her exposure to bring attention to Alzheimer’s and advocate for better research and funding. “I think it’s so important to get more funding for research,” she said. “We live our whole lives, and we try to make these beautiful memories, and there might be one day when we don’t remember any of them. That is tragic — to live a full life and not remember it in your final days.”
How you can help
The Alzheimer’s Association, which Stevens has worked with, recommends many ways in which people can get involved with advocacy for research and funding, including volunteering, donations, and creating a tribute page to a loved one. “When you’re affected by Alzheimer’s, you feel so powerless,” Stevens said, “so if you can feel like you can do something, maybe it won’t help the person in your life now, but it could help you or someone that somebody else loves.”
The biggest lessons Stevens learned with her grandmother were to not get frustrated and to keep things light. “They say the worst thing you can do to someone suffering from Alzheimer’s is to further their confusion,” she said. “It’s not my place to continually ask her, ‘do you know who I am,’ to further her confusion. For me, it was so important that whichever reality she was based in on that day, I needed to meet her there.”
