Alzheimer's--What Are We Doing About It?

The following has been transcribed from the Aging Boomers podcast on "Alzheimer's--What Are We Doing About It?

Frank: We have as our guest today William Fisher who’s the Chief Executive Officer for the Northern California and Northern Nevada Chapter of the Alzheimer’s Association. This is just a phenomenal organization. We’re going to hear a little more about it. Bill joined the association in 1987. In this role he provides leadership to the largest chapter in the 80 Chapter Alzheimer’s Association Network.

He currently serves on the State of California Alzheimer’s Disease and Related Disorders Advisory Committee. Was a founding board member of the Berkeley Alzheimer’s Family Respite Center. Now the Alzheimer’s Services of the East Bay and is a trustee with the Hubert L. Beard Foundation for Respite Care. Bill, thanks so much for joining us on the Aging Boomers Today.

Bill: Great to be with you Frank.

Frank: Yeah, there’s just so much to discuss, so we’re going to try to pack in as much as we can here. First of all, I just want to start out asking, telling us more about the Alzheimer’s Association, what kind of services and how could people utilize those services most effectively?

Bill: Yeah, you bet. The Alzheimer’s Association simply is the national movement to defeat Alzheimer’s disease. We are a voluntary health agency. We are trying to move public concern for this issue. We believe in a world without Alzheimer’s, so we’re proud to be the largest private nonprofit funders of Alzheimer’s science. We raise money. We fund research internationally really, and at the same time through the chapter network that you referred to we are there 24/7 to help families through this journey that most people really didn’t plan for.We have a great 800 number, 800-272-3900.

We’ve got a great website alz.org. People can access all kinds of information. Care-giving information, support information, research information, public policy information. We’re trying to beat this thing. We do not accept that our children, grandchildren, have to either have Alzheimer’s or care for somebody who does. At the same time here our chapter here in northern California, northern Nevada took about 15,000 helpline calls last year. Nobody calls in the morning saying, “Hey, how’s research going today?” They call; because, something’s going on in their life and they need help with it.

We have a host of educational programs, support services, that’s really us. We’re as I say, the big picture we’re trying to beat this thing. We’re trying to raise public concern about an issue that’s very difficult and on a day-to-day basis we’re trying to help families navigate a very challenging issue.

Frank: I can speak firsthand, that I’ve worked with your group and being in the industry of course and you just have a great, great staff and very caring people. They really know their stuff. Clients that I’ve worked with and referred them over have been extremely pleased with your staff and the whole organization in what’s a difficult situation for people, and I thank you for all you do.

Bill: I appreciate that. I agree with you. It is a good staff. It’s a very caring group, but I just add that we use hundreds and hundreds of volunteers as well in all kinds of ways. Volunteers that lead support groups. Volunteers who help us with helpline. Volunteers who stuff envelopes. Volunteers who put on our walk and Alzheimer’s. It really is a very fundamental way of engaging the community to address an issue that’s hard for people to talk about. We know that over half of the cases of Alzheimer’s are never diagnosed.

There’s a stigma to Alzheimer’s that’s really fundamentally different than other chronic healthcare conditions. If you have diabetes you can probably continue to do a lot of lines of work, but if you develop Alzheimer’s disease, I don’t want you to fly my plane. I don’t want you to be my legal advisor. I don’t want you to be my financial advisor. I don’t want you to be my doctor. There’s a whole different kind of compromise. I think it frightens people in a different way.

Frank: What do you say to people, who say, well, I have someone that I know, they don’t have Alzheimer’s, they have dementia? I know there’s, I don’t want to say confusion, people are just uneducated when they’re facing this type of situation. It’s not anything they necessarily studied in school or anything. Can you explain really the differences and try to clear that up for our listeners?

Bill: Yeah, I think I can. It’s a great question; because, you’re absolutely right. It comes up all the time. I meet people frequently. Even people who are close to me and know what I do, who will, oh you know, there at the end mom didn’t know the names of the kids anymore, but I don’t think that she had Alzheimer’s, she had dementia. A fairly well known individual the other day was talking about her own diagnosis. She was being interviewed and it often comes off as dementia. Dementia is a syndrome. Dementia is a description of the way the person functions or behaves.

It describes an individual with short term memory problems, with problems processing information, thinking, reasoning, probably some change in personality. When those things happen in a previously intact individual. A person who doesn’t have a history of mental illness or difficulties like this, the doctor will often say you have dementia. If you’re over 65, the doctor might say, senile dementia. The senile reference just telling us how old the person is. A 58-year-old with identical symptoms would be pre-senile dementia, but he doesn’t tell us what causes it.

It’s not an adequate diagnosis and people shouldn’t be content with it. Many things can cause dementia. Alzheimer’s disease is far and away the most common cause of dementia in people over the age of 65. Everyone who has Alzheimer’s will develop and exhibit dementia at some point. There are other things that cause dementia. There’s vascular dementia. Small strokes of the lining of the brain. There’s something called lewy body dementia. There’s Parkinson’s disease, can cause a dementia, although not everyone with Parkinson’s disease exhibits dementia.

Frontal temporal lobe dementia is something we hear more about. A fairly rare disease, but it also results in dementia. About one in ten cases of dementia in a person over 65, is caused by something that is totally treatable and reversible. It could be thyroid deficiency. It could be nutritional deficits. It could be counter-indicated medication which in a senior population is an important issue to consider.

Maybe somebody is seeing three physicians, taking six, eight different medicines, but no one doctor is overseeing the entire medication load. Maybe two of these medications are not intended to be taken together and when taken together will cause a dementia. Will cause mental confusion and memory problems and so. Dementia tells us how the person looks. I see you and I see someone on the street and they have a runny nose, well that’s a symptom, but what causes it? Do they have hay fever? Do they have allergies? Do they have a cold? We shouldn’t accept dementia as a diagnosis. It gets us halfway there. It tells us how the person is functioning and behaving. It doesn’t tell us what causes it.

Why do I care about this? I care about this; because, as a public policy issue there’s a federal budget for Alzheimer’s disease. We have a bill in front of Congress now called the Alzheimer’s Accountability Act. We need to get people to diagnose it better than they do. We need to bring it out of the closet and talk about it in a way that we don’t. It doesn't help us if we sort of flirt around the edges with it and talk about a little memory loss. Part of it honestly, some of it is, you’ll hear physicians say, well there’s nothing I can do about it. It’s an awfully sensitive issue.

I don’t want to upset the family. I’ll just keep an eye on it. It’s not helpful from a public policy point of view. I honestly don’t think it’s all that helpful to families. I understand it for some families, calling it Alzheimer’s is a scary thing. It suggests genetics and issues that maybe we’d rather not think about. Dementia, everybody with Alzheimer’s will develop dementia, but not everyone with dementia has Alzheimer’s disease.

Frank: I think your analogy of somebody with that runny nose was a great analogy. I think it’s important for people to understand that the Association, Alzheimer’s Association is supportive of all the various types of dementia. Alzheimer’s of course is the most I guess was it about 70% of dementia, people have Alzheimer’s, something around there. People who, they can turn to the Alzheimer’s Association for assistance on various types of dementia. It’s just not called the Dementia Association, it’s call Alzheimer’s Association, am I right in that?

Bill: Actually our legal name is the Alzheimer’s Disease and Related Disorders Association, so you’re absolutely right. Many of the care giving issues for people with all of these conditions that we referenced a minute ago, Lewy body dementia, vascular dementia, frontal temporal lobe dementia are very similar. There are certainly some differences in these conditions. The age of onset, some of the behavioral manifestations are a little different, but you’re absolutely right. We are there to help families with any of these conditions to the degree that we can.

At a basic science level, as I say we fund a lot of research. At a basic science level there’s a lot of overlap. We fund a wide range of basic science issues that relate to several of these dementia illnesses.

Frank: I know you mentioned briefly about some of the public policy going on and I want to get to that in a minute. I think it’s extremely important, but before we do can you just give an overview and I know people can go to alz.org to get this information, but maybe just do a quick overview to some of the warning signs of people with Alzheimer’s, some of the signs I know you have on your site as well and then we’ll get into the public policy issues.

Bill: You bet, you bet. Alzheimer’s disease is fundamentally identified as a problem of short term memory. It starts in that part of the brain, the hippocanthus that is responsible for short term memories. You long term memories are physically stored differently in the brain. When my grandmother had this problem, I came home from college one time and I said hey grandma, it’s me Billy. She said, oh I had a grandson named Billy. This 20-year-old kid didn't fit the picture any more. She didn't remember having a grandson my age and size and eventually she didn't remember me at all.

The last person she was able to hang on to was in terms of her memory was my mother who was her principal caregiver. Memory loss and memory loss that gets in the way of activities of daily living. There’s another sort of emerging diagnosis called mild cognitive impairment, or MCI, which is something a little different than normal aging. There is by the way something that physician’s refer to as age associated cognitive impairment. A nice way of saying normal aging. Very, very few of us are going to remember as well and quickly and fertility at 75, 65, as we did at 15 or 25.

We’re not going to learn foreign languages as quickly. It’s just more difficult. There are different things our brains actually improve on. We’re better at identifying patterns; because, we have a lot more experience. Aging brains are good at sorting those kinds of things. Our short term, our memory is not as good. If you go to the refrigerator for something, what the heck did I come in here for, but you go back to the front room and then you remember it. That’s normal aging. Give yourself enough time, it’ll come back to you. People with Alzheimer’s disease start to have, I always say if you go to the grocery store for ten items and you come home with 7 of them, that’s normal.

If you lose your way home from the grocery store, that’s not normal. People have problems with executive function. Those higher order tasks, work if an individual is still working. Work is one of the more complex things humans do and people will start to have problems there in all likelihood. Familiar tasks. I had a lady call one time and she was upset; because, her husband wanted to cut the neighbor’s tree down; because, he didn't like all the leaves falling on their patio. What was upsetting her was that he couldn’t get the chainsaw started and he always used to be able to get the chainsaw started.

I reminded her that we actually didn’t want him to get this chainsaw going, but something that he used to be able to do and could no longer do it. Confusion of time or place sometimes is part of it early on. Where are we? When is this? Those kinds of things typically by the way when a diagnosis of Alzheimer’s is made. If you go to see a good primary care physician who understands this issue or a geriatrician or a neurologist who understands the issue. They will start with something called a mini mental state exam, which is fundamentally just kind of a basic memory test.

How are you doing? Can you count backwards from 100 by seven, spell world, now spell world backwards? They’ll give you three words and then three or four minutes later they’ll ask you can you remember those three words that we talked about? Do you know where you are today? Those kinds of things. Your orientation to place and time. Those things you can actually put a numerical value to a person’s short term memory. One of the things about Alzheimer’s is that it’s progressive and degenerative. It gets worse over time. If we benchmark our memory today, six months later a person with Alzheimer’s is probably going to show decline in short term and recent memory.

Now as this progresses and again; unfortunately, Alzheimer’s is unfailingly progressive and degenerative at this point. People really have fundamental problems. Problems with eating, feeding, toileting themselves; because, if you think about it, all of those things involve short term memory. Things like eating, you sit down to a plate of food. Maybe you eat all your vegetables first. Maybe you take a bite of this and a bite of that, but you have a sense of when you, how to go about it, a sense of when you’re finished and when you’re done you don’t expect to eat again.

People with Alzheimer’s start to have problems with remembering where they are, what to do. Where they are in the sequence of this activity and that is pervasive across things like dressing yourself. Again, that’s toward the later stages of the disease. It’s very common with families, when you ask them, when did this begin? That they’ll say something to the effect of well, we got mom to the doctor last February, but looking back on it now, we were really seeing symptoms a year, two years, maybe even three years prior to that.

One thing I would hasten to say by the way, is that one of the ah-hahs in Alzheimer’s science over the last 10-15 years that we know is that the pathology, the brain changes of Alzheimer’s are started 15, 20 years before the dementia that we talked about a minute ago. This confusion, short term memory loss, before those symptoms are present. We typically don’t diagnose it until the person starts to have difficulty. Now one of the things I think has been a change in Alzheimer’s is we’re going to be able to diagnose it pretty soon, while people are still working and picking up their dry cleaning and doing just fine. We’re going to be able to identify bio-markers for Alzheimer’s that help us identify the disease, the pathology of the disease in seemingly fully functional adults. That’ll change science in a fundamental way.

Frank: I just heard just recently I think it was this past week or so that statistically Alzheimer’s is the third leading cause of death. Is that correct? Did I hear that right?

Bill: We say in our publication that it’s the sixth leading cause of death in adults in this country. It is the only issue in the top ten causes of fatality that has no disease altering treatment available. There are four drugs approved by the Food and Drug Administration that are for treating Alzheimer’s disease and they are what we refer to as symptomatic treatment. You’re absolutely right. It’s interesting that we often don’t think of Alzheimer’s as a terminal illness. Part of that again is the age group of people who get it. It’s very much an age related condition, so it affects roughly what, about 12-13% of the population over 65. Almost 40% of the population over 85, so it’s very much an age related curve, and that’s why we have over five million Americans with Alzheimer’s today. We’ll have roughly 15 million Americans with Alzheimer’s by 2050, if we’re not able to alter that course; because, the boomers that your program addresses. I am one. We’re going to age in huge numbers. We’re taking care of ourselves. We’re eating well. We’re exercising. We’re going to live long and we’re going to live in large numbers into the at risk population.

It’s not uncommon for the person, my father was an example. My father died of congestive heart failure at age 91, but he had Alzheimer’s. It was his Alzheimer’s that made it hard for my mother to care for. You get a lot of what we refer to as co-morbid conditions. People have more than one issue. If not, if something like cancer or heart disease get you, Alzheimer’s will take your life. It’s one of those things that people, the Centers for Disease Control, the federal CDC refers to Alzheimer’s as a terminal illness. It’s often not recorded in death certificates, so we think is under counted as a cause of death, but it is ultimately fatal.

Frank: We only have a few minutes left. I’d just like you to talk about what’s going on on a national level. I know you mentioned earlier the Alzheimer’s Accountability Act. Can you tell us in the next few minutes just what’s going on with that so that people know some of the things happening to hopefully bring in more dollars, etc?

Bill: Real quickly, it’s that particular Act and a lot of our work on a federal level is really about promoting research, funding for Alzheimer’s disease. Francis Collins who’s head of the National Institute of Health testified before congress here this spring and he said there is no lack of great ideas. We can get after. There’s no lack of talented scientists. There’s just a lack of resources. Really quickly federally we fund about six billion dollars in cancer science. We fund about 580 million dollars in Alzheimer’s disease science.

None of us begrudge cancer a nickel, but we’re been an cancer science for almost 100 years. All of us probably know someone who has survived cancer and none of us would say we've cured it or prevented it all together. That investment we would argue has been a good investment. In 2010 we got the National Alzheimer’s Project Act through congress. Out of that came the first ever national plan to address Alzheimer’s. It calls for disease modifying treatments by 2025. Really quickly we got a hundred million dollars last year in December, when the Democrats and Republicans finally came together on a budget.

One of the things that was in there that a lot of people didn't notice, but we certainly did was a hundred million dollars in additional funding for Alzheimer’s research in the base of NIH funding. That’s a good thing. The Alzheimer’s Accountability Act, sometimes you go to a legislative office and they’ll say we don’t want to pick the winners and losers. We want the scientists to decide. While I can argue there are a lot of exceptions to that okay, the Alzheimer’s Accountability Act would require the National Institutes of Health to submit to congress every year what’s called a Professional Judgment Budget.

Basically bring the scientists together at NIH and tell congress what will it take to achieve our goal of disease modifying treatments by 2025. Congress doesn't have to fund it, but at least it gives them, so the bill itself doesn't spend any money that’s part of it, but it’ll hopefully help it pass. It tells them what the scientific community says it’s going to take and what they could usefully put to use in Alzheimer’s research right now. We’d like to see this happen. It has bipartisan support in the congress. I encourage people to learn more about it. Go to alz.org and let their elected official know that they care about this issue.

Frank: I know you talk about science. Real quick, I interviewed some scientists on the show and they’re just phenomenal people. I think you probably know, you may even know them. They said the likelihood of a cure soon is pretty remote; however, what the next step is and I think you mentioned it before, is we might be able to kind of catch it before it turns into something, turns into Alzheimer’s. We could kind of prevent it. The cure is a ways off, but preventing it would be huge, that would be huge.

Bill: I think that’s right and I think you’re absolutely right. That’s my sense. We fund research. I get to hobnob with some of the finest Alzheimer’s scientists in the world here in northern California honestly. I think that the researchers think that you’re right. Probably it’s going to be a multifaceted approach. You think about heart disease. There are a lot of different things. There are lifestyle issues. There are drugs. There is even surgical interventions. I think that with Alzheimer’s they’re going to be probably five or six different avenues of approach and maybe for you two or three things are going to be important to keep you from developing Alzheimer’s disease.

Maybe for me it’s three or four different things. Maybe some of the same, but some of them different in terms of maybe adjusting the amyloid, or addressing the thalamus, a couple of fundamental proteins involved in Alzheimer’s. Maybe APOE4 which is one of the genetic markers that’s a risk factor for Alzheimer’s. Maybe inflammation which we also know is implicated in Alzheimer’s. Kind of depending on your personal profile, it’s probably not going to be as simple as a polio vaccination where we all take one thing and we’re protected. I think we’re going to be able to get after this by keeping it from happening. Obviously, that would be huge.

Frank: Bill, thanks so much. We've had with us William Fisher, Chief Executive Officer, Northern California, Northern Nevada Chapter of the Alzheimer’s Association. Go to alz.org or they can call on an 800 number, what’s that number Bill?

Bill: It is 800-272-3900.

Frank: Great, thanks so much for joining us. We've got to have you back. I could talk all day with you about this very important subject matter, so thanks for joining us and thank you everybody for tuning in. You could go to have your friends, family go to iTunes, download the app on your iPhone or Android phone, The Aging Boomers.com Thank you for joining us. Hopefully, you’ll go on and make some great comments and subscribe right on iTunes. Again, thank you so much. Be safe out there and we’ll talk to you soon. (Music playing).