Documentary offers empowered approach to dementia and Alzheimers disease

In honor of World Alzheimer’s Awareness Month, the University of Kansas Alzheimer’s Disease Research Center hosted two screenings of "Why?” on the University of Kansas Medical Center campus on Nov. 9.

Created by the KU Alzheimer’s Disease Research Center, “Why” is a documentary about dementia and Alzheimer’s disease that addresses some of the barriers in recognizing and addressing early cognitive changes as well as offering a hopeful, empowered approach for people with dementia and the people who care for them.

“If the only story told [about dementia] is that it’s grim and hopeless, then we haven’t provided a path to move forward — not for individuals diagnosed, not for families, not for health care professionals, and not for the community at large,” said Michelle Niedens, director of the Cognitive Care Network at the KU Alzheimer's Disease Research Center, who oversaw the creation of the documentary. “If everybody feels there's nothing we can do, that's not an accurate story. We created this documentary to say that there is a different way of looking at this, and one that elicits a call to action for all of us.”

The film features first-person interviews with individuals diagnosed with dementia, family members, physicians, nurses and researchers. It addresses the stigma that often comes with dementia and the importance and promise of participation in clinical trials, screening and early detection, lifestyle factors such as diet and exercise, and community support. It also offers a positive perspective on the state of research and on the lives of people living with these cognitive problems.

“Just because someone is diagnosed with something like dementia does not mean that they are any less of a friend or a person or a contributor,” Niedens says in the film. “There is still reciprocity and relationships. People still have something to give. And it's all about how we feel; it’s not about what we remember.”

The film has been shown in a variety of locations around the state of Kansas since its release earlier this year. “We are trying to spread more awareness across Kansas,” said Jeffrey Burns, M.D., co-director of the KU Alzheimer's Disease Research Center. “We are trying to build relationships with primary care practices so we can help people across the state, not just in Kansas City.”

In the film, Burns also discusses the importance of clinical trial participation: “I like to say the first person cured of Alzheimer's will be in a clinical trial. The only way we're going to get new drugs is through clinical trials, and that is a community effort,” he said. “Those trials are about the community and about finding participants. This is about patients and the people at risk. And we are not going to win this battle unless we all come together.”

While the documentary was created to be shown in family groups or within communities, the film has now been released online to the public. Watch the documentary

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