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Alzheimer's Disease-Support And San Diego Research

September 11, 2012 12:51 p.m.


Mary Ball, CEO, Alzheimer's Association of San Diego and Imperial Counties

Dr. Robert Rissman, Assistant Professor of Neurosciences, UC San Diego

Dawn Egan, caretaker

Related Story: Alzheimer's Disease-Support And San Diego Research


This is a rush transcript created by a contractor for KPBS to improve accessibility for the deaf and hard-of-hearing. Please refer to the media file as the formal record of this interview. Opinions expressed by guests during interviews reflect the guest’s individual views and do not necessarily represent those of KPBS staff, members or its sponsors.

CAVANAUGH: Mary Ball is CEO of the Alzheimer's association in San Diego. Welcome.

BALL: Thank you, Maureen.

CAVANAUGH: Doctor Robert Rissman, assistant professor of senior sciences. Welcome.

RISSMAN: Thank you.

CAVANAUGH: And Dawn Egan, thank you for being here.

PETERS: Very happy to be here.

CAVANAUGH: Mary, how many family care givers would you estimate there are in San Diego helping a person living with Alzheimer's?

BALL: Well, we're seeing the numbers skyrocket in terms of people living with Alzheimer's disease. They tend to be cared for by two or three family members or friends. As you can see, there's 150,000, close to 200,000 people caring for a loved one living with this terrible disease.

CAVANAUGH: And I think many of us are familiar with the fact that Alzheimer's is a progressive disease. Can you give us an overview of how this disease affects people's ability to care for themselves?

BALL: Well, Alzheimer's disease typically progresses from diagnosis to the end of the journey, about eight years. Will so it's a long journey for the family member. And it may start out with people losing the ability that they've always done before. Reading recipes, even looking at a clock, struggling with visual images. Then the disease continues to progress. Oftentimes people with Alzheimer's lose the ability to speak, to walk as their brain continues to deteriorate.

CAVANAUGH: It's usually family members who notice these symptoms isn't it?

BALL: It is. It's family members, spouses, it's coworkers as we're seeing people at younger ages develop the disease. And they notice that things that people have regularly done they start to struggle with.

CAVANAUGH: Some people usually in advanced stages of the disease can no longer be cared for at home. But it sounds to me that -- is it fair to say most of the people living with this disease are still at home and being taken care of by family members or some sort of care giver?

BALL: Of the 60,000 people today in San Diego County living with this disease, about 75% are cared for at home. Care at a facility can be out of reach financially for some families.

CAVANAUGH: I want to go to doctor Rissman. What's the latest? What are you going to be telling the care givers?

RISSMAN: I'm going to speak about the work I'm doing at UCSD, and some of the other research that's ongoing. But I just want to bring out some important clinical developments that we're having now, research-wise. We're seeing that perhaps we can focus on patients who are Asymptomatic. We can try to intervene, like a prevention treatment. So I think this is a very exciting time doing research.

CAVANAUGH: I would say so. So how do you identify if someone isn't exhibiting any symptoms, how would you identify the fact that they are in the very, very early stages of developing this disease?

RISSMAN: Great question. And the answer is through biomarkers. We can look at MRI scans of the brain, cerebral-spinal fluid, looking for proteins that we know are implicated in Alzheimer's.

CAVANAUGH: And if you could, maybe it's not possible, but if you could, can you describe the difference in the visual aspect of a brain of someone who is in the early stages of developing Alzheimer's and somebody who is not?

RISSMAN: Sure. In the very early stages, we believe that there's a protein accumulating in the brain, called beta amyloid. And it accumulates as plaques that form outside cells. And they're disrupting their own networks, impairing cells, communication between one another, and that really is beginning before we see any symptoms at all in people.

CAVANAUGH: Why is it important to diagnose Alzheimer's early? What kind of treatments are available at that stage?

RISSMAN: I think the issue is we haven't found any viable treatments for existing patients. We have the true symptomatic treatments, but both of those work on a temporary basis. So the idea, if we can catch people before, we can prevent the pathology from developing and prevent those cells from being lost. The big problem with the two existing treatments is that once those cells that those treatments are protecting are gone, they're no longer useful.

CAVANAUGH: I see. Let me go to you, Dawn. You've been a care giver for your father. How long have you taken care of him?

EGAN: I've taken care of him for seven years now.

CAVANAUGH: And are you still caring for him?

EGAN: I recently had to have him moved to a facility that provides much more help. It was becoming a situation where it was no longer safe for either one of us to continue doing this alone.

CAVANAUGH: Now, I had an importance where I took care of a family member, not with Alzheimer's disease, but with a chronic illness. And I remember how that impacted my life. I'm wondering though, with Alzheimer's disease, there seems to be an added emotional element that is really very, very sad. Did you experience that?

EGAN: I actually did. What happens is you now watch this person that you've known forever start to regress and become very, very child-like. And our whole persona is not -- we're not equipped to do that. We want to fix them, to make them continue to remember all the things that they have. And so it's important that we learn how to be able to step into the world of the Alzheimer's patient to make the life simpler for each party involved.

CAVANAUGH: Give us a little idea of how much this changed your way of life taking care of your dad.

EGAN: It changed in the fact that working was practically impossible. Alzheimer's people become very slow. So we're used to getting up and going and being ready in 15 minute, it would take him 2-3 hours to do the normal things that we take for granted. So it changes everything with regard to time. The support that I got was original from the Alzheimer's foundation, and one of dad's doctors suggested I investigate the memory center, and it was at that time when I got him enrolled in it that I realed I wasn't alone. There were many people that were dealing with the same thing they was. And there was also more information that I even realized was available. So I began attending the support groups. Marge with the Glenner center was my mentor. I could not have done this without her.

CAVANAUGH: And would that be the kind of advice you give to other people who might be listening?

EGAN: I would tell anyone to get their hands on as much information as they can so they can learn what they're going to be faced with as the years progress because it is daunting. And it requires acceptance.

CAVANAUGH: Mary, what kind of information are you going to be providing care givers and professionals at the conference this weekend?

BALL: Well, the free conference this weekend for care givers, it's 9:00 to noon, and we're going to be giving people information on Alzheimer's disease, an update on research and medical care from doctor Rissman, how to communicate with the memory-impaired. And then of course how to reduce care giver stress. We've got a registered nurse from the Glenner center in Hillcrest that dawn mentioned, and she is someone who has worked with people living with the disease for years and is a tremendous resource to care givers, really giving them practical information.

CAVANAUGH: Are you going to be bringing new information with you, doctor?

RISSMAN: I certainly will. We're going to be talking about some new therapies we're starting. I'm also going to be bringing out some of the recent drugs although they have failed in trials in people with dementia, they actually were helpful in reducing some Alzheimer's biomarkers.

MAUREEN CAVANAUGH: How often do you provide these workshops for care givers?

BALL: We do these workshops on a quarterly basis. And it gives people an opportunity to come, get information, listen, ask questions of experts. So it's something that we found to be real successful. It's a half a day. Absolutely free of charge. And really gives people an overview of the disease, and all the resources that are out there in the community.

CAVANAUGH: One thing I hear from care givers a great deal is the fact that they need some time off, time to themselves to regroup and get back together to provide the care the person needs. Is that the feedback you get from people who attend this conference?

BALL: Absolutely. There's no more difficult job than being a care giver with someone who has Alzheimer's disease or dementia. And it is so important for care givers to reach out, join support groups, get the information they need that's going to help them get through the day. Absolutely. It's a 36 hour day for care givers.

CAVANAUGH: The care giver conference is Saturday, September 15th, it's free, and it's for care givers and professionals who would like to learn more about Alzheimer's disease. Thank you all for coming in and sharing your stories.