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 The Harry Johns Interview (Page 1 of 5)

The Harry Johns Interview

Today's Caregiver Magazine July/August 2009

The Alzheimer's Association is the leading, global voluntary health organization in Alzheimer's care and support, and the largest private, nonprofit funder of Alzheimer's research.

Editor-in-Chief Gary Barg sat down for a wide ranging conversation with Harry Johns, the association’s president & CEO.

 

Gary Barg: Tell me about the clinical trial education campaign.

Harry Johns: Gary, I worked in the health field for a long time and as you well know, medical science is impeded by the lack of participation in clinical trials across medical research. That is particularly problematic for Alzheimer’s disease. We saw an opportunity to reach out to people that we touch every day in our communities from our chapters and try to get more people engaged in doing things that would benefit other people down the road.

Any of us who have been touched by this disease do not want to see others affected by it. We know we cannot eliminate it immediately. But if we can make an impact on it, we at least leave a legacy for the people we have cared for.

Gary Barg: In an Alzheimer’s trial, there is the need for a caregiver to participate as well and serve as an in-home coach for their loved one. To educate that caregiver is actually really supporting the connection between research and the public.

Harry Johns: Oh, I think you are absolutely right. The caregiver plays a critical role in the decision to participate and in terms of ongoing advice and care because, as we all know, the person is diagnosed impaired.

Gary Barg: On another note, I am really impressed about the creation of the early stage advisory group. You are one of the few places, I think, where now all stakeholders have a voice in Alzheimer’s care. Can you tell me a little bit about the concept of the early stage advisory group?

Harry Johns: When I arrived at the Alzheimer’s Association, I heard from many people who were at an early stage that needed a voice in the process, and we certainly agree with them. I worked in the cancer field for a long, long time, so I am very much accustomed to the idea of survivors being at the table. In cancer, people are treated as survivors from the point of diagnosis.

 

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