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Interview with Judy Riggs - 2002-08-14


Judy Riggs, Vice President of Public Policy for the Alzheimer’s Association. Ms. Riggs is the author of the Association’s’ National Public Policy Program to Conquer Alzheimer’s. She also has written numerous reports and articles on family caregivers and health and long-term care policy. Ms. Riggs serves on the National Advisory Council on Aging. She worked for 26 years in legislative and government relations.

MS. SMITH:
With me is Judy Riggs, Vice President of Public Policy for The Alzheimer's Association here in the United States. Thank you very much for being with us.

MS. RIGGS:
Thank you for having me.

MS. SMITH:
It's kind of scary, isn't it, to think that it is really becoming a worldwide problem. Is it not because of growing awareness and better diagnosis? Is there a greater reason behind that?

MS. RIGGS:
The reason it is becoming a bigger problem are really two things. First of all, and the most important is, we are getting older every place, not just in the United States but around the world. And Alzheimer's is a disease that is very much connected to age. It doesn't mean you will definitely get it if you get old, but you are more likely to get it. So that is the biggest reason.

But I think also the other reason is there is a growing awareness. And certainly what Mr. Heston did this week, and the courageous statement Ronald Reagan made years ago, has helped bring awareness and has told people this isn't something to hide in the closet any more. This is something to talk about, to get help for and to seek treatment for. So it's both of those things that are making a difference.

MS. SMITH:
What is the difference between Alzheimer's and other forms of dementia?

MS. RIGGS:
Alzheimer's disease is the most common form of irreversible dementia. There are other things that can cause dementia, something called Pick's disease, and people with Parkinson's can get dementia. But to the person who has the disease and the family that's dealing with it, it really doesn't make a lot of difference what you call it. The symptoms are very similar and the cost that it takes from the family and from the person who has the disease is pretty much the same.

MS. SMITH:
Certainly every individual is different, but from the time of diagnosis, if it's early, run [through] for us the various stages that people might go through.

MS. RIGGS:
I think it's very important that you say everyone is different. There is a famous saying: If you've seen one case of Alzheimer's, you've seen one case of Alzheimer's.

But particularly now that people are being diagnosed early, for the first time we have a lot of people, like Mr. Heston, who are speaking up about their Alzheimer's disease. So they are still very functional. They still have a lot of their cognitive abilities left. Many of them are still working.

But as the disease progresses, eventually people will become more forgetful. And ultimately what happens is you begin to lose your ability to do the very normal basic things of daily life. It starts with simple things like misplacing things, losing names, losing your way, but ultimately, before the end, the disease makes you forget how to eat, how to swallow, how to do the most basic functions. And at that point people need total care.

MS. SMITH:
And certainly that becomes a strain on the families who are trying to care for these individuals and for the caregivers even outside the family who have been brought in. What kind of help does your organization offer?

MS. RIGGS:
The Alzheimer's Association in the United States is one of 60 organizations around the country, and we all do much the same thing. A big part of what we do is raise our own money for research and work to get the government to spend more money on research so we can change the course of this disease. But at the same time we exist to really help families and individuals with the disease. We have information. We have support groups. We have a 24-hour/7-day-a-week phone number people can call to get help, to get ideas on how to cope with the disease. We spend a lot of time working with doctors and care providers to make sure they know how to take care of people with Alzheimer's disease.

MS. SMITH:
For those who are in developing countries, is there a way that they can get in touch with someone, that they can learn more about treatment, a Web site?

MS. RIGGS:
Yes, absolutely. Alzheimer's Disease International is the umbrella organization for the national organizations, and they do have a Web site. It's www.alz.co.uk. And I absolutely encourage anyone to get on that Web site and find the organization in your country that can help. Or come to The Alzheimer's Association in the United States and we will try to get you the information you need.

MS. SMITH:
I'm sure we'll be talking to you again.

MS. RIGGS:
It's not a story that's going away very fast.

MS. SMITH:
Not a happy one.

MS. RIGGS:
But it's a hopeful story.

MS. SMITH:
Thank you, Judy.

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