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 The Harry Johns Interview (Page 4 of 5)

Harry Johns: The impact, of course, is aimed at raising the level of attention to the disease. You know, we have research that indicates that people have not been as concerned about the disease as about other medical issues, other health causes. And we think people should be as concerned about Alzheimer’s, especially given the devastating impact to individuals to the caregivers, to whole families, and to the country.

So that is really the aim of the campaign—to raise the level of attention and we think we are doing that. We are going to continue to do that because we think it is critical to moving the whole cause forward, and changing the course of the disease both in terms of people who have it as well as trying to keep people from getting the disease later. So we are going to continue that effort. We think it is succeeding. You will see more of that from us.

And what you say about the equalizer effect of the disease—people talking to David Hyde Pierce or Leeza Gibbons as though they are fellow caregivers instead of as celebrities—is right, of course. And using those two examples in particular—I am sure you have met them, they both are great people. They know about this. Any of us who have had a loved one with this disease does not want others to have it. We know what others go through as caregivers, as family members—the kind of emotional and even physical impacts it can have on people. As you well know, Gary, there are studies out there that indicate there is a greater incidence of death for the nonhospitalized partner than for the one who is hospitalized.

Gary Barg: The Stanford study that shows that 40 percent of people with loved ones with cognitive disorders are going to die before the person for whom they care.

Harry Johns: Right.

Gary Barg: We talk about that at the Fearless Caregiver Conferences and it is always a show stopper. It gets people’s attention.

Harry Johns: Oh, it is amazing. Coming to this role, it has been one of the most negatively impressive things to me. It is such an impact on the families, on the caregivers. A lot of people who are caring for someone with Alzheimer’s or dementia can wind up doing it not only forty hours a week, not only 36 hours a day. A third of those people do it for five years or more.

I think those champions, the David Hyde Pierces and those folks who step up to talk about the disease, really do see it the way all the rest of us see it. And they help us communicate that message to others who have not yet seen it in the same way, so that we can ultimately get the entire country, and again policy makers, to recognize it and act on it in ways that will change it for caregivers today and for the disease tomorrow.

 

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