Alzheimer’s 101: Understanding The Disease
BOSTON — The age of Alzheimer’s is upon us. As the country’s 78 million baby boomers turn 65 — the age when the disease significantly increases — cases of Alzheimer’s are expected to skyrocket. For an introduction to the disease and the information available to us, we spoke to Jim Wessler, head of the Massachusetts/New Hampshire chapter of the Alzheimer’s Association.
How can we differentiate between normal, mid-life forgetting and Alzheimer’s?
It’s a great question and we get that all the time. Few comments on that, one of which is: Certainly, as we age, short-term memory does decline a little bit. And so we often talk about, you go to a movie with your spouse or a good friend and the next morning you wake up and you can’t remember the name of the lead actor or actress. But probably within the next 10 or 12 hours it will come back and you’ll recall that. Periodically misplacing your keys or your eyeglasses, a constant thing we hear …
Guilty of that almost every day.
So those are really probably more normal behaviors that also can be influenced by stress and other things in your life. I think what your listeners need to look at are really changes that are affecting the quality of their life and their ability to function successfully. So, for example, their whole life they have very easily balanced their checkbook. And now suddenly it’s not just they forgot to send in one payment, that is really a struggle for them.
A person who’s been a very competent cook their whole life and now suddenly is looking at a recipe and gets confused with the measurements and what goes first and what goes second. Someone whose father every day has driven to the local grocery store, which is a mile away, and now suddenly is getting lost, either going there or coming back. We talked about misplacing your keys — it’s one thing if you put them on a table in a different room and you forget, it’s another thing if you find the keys are actually in the refrigerator. So we’re looking at behaviors that are really quite different.
And on the memory question, it really would be a consistent and persistent inability to recall information. So that you and I are just speaking and I leave and 30 minutes later I have zero recollection that we ever spoke, and that doesn’t come back — it’s not something that comes back two or 10 hours later.
Those are all areas of concern. You can’t self-diagnose this, really, so what we recommend is that you certainly go talk to your physician, your primary care physician, and then we’re blessed here in Massachusetts, particularly, to have a number of some of the top diagnostic clinics actually in the nation. So there’s a number of experts that people can go to if they want to get further diagnosed.
Let me ask about a diagnosis that many elderly people receive and that is for dementia. What’s the difference between dementia and Alzheimer’s?
Well dementia really is a description of a set of symptoms, some of which I was just talking about. So we might say that the flu has a set of symptoms including coughing and fever and stuffy nose. So dementia is really a set of symptoms. Alzheimer’s is overwhelmingly the dominant cause of a set of symptoms that we call dementia, but it’s not the only one.
That is also another reason that it’s very important to get a diagnostic evaluation, because some causes of dementia are actually reversible. So, for example, depression — which is highly treatable but untreated the symptomatology can look a lot like dementia and Alzheimer’s disease — alcoholism, some vitamin deficiencies. Other causes of dementia are small strokes, other sort of cardiovascular set of symptoms will also cause dementia. So it’s important to understand the causes of those symptoms to see: what is the appropriate treatment and what is in fact the projected pathway if it is not treated?
Let me ask a question about the prevention of Alzheimer’s: Generally we’ve heard what’s good for the heart is good for the brain, like exercise, and there was a recent study that suggested there are things we can do. Is there proof that anything actually works, though, and what should we be doing or what could we be doing?
Excellent question. The simple answer is, we don’t have definitive proof of really anything at this point that will prevent Alzheimer’s disease. The areas that you just mentioned — what is good for you heart is good for your brain, particularly a heart-healthy diet and exercise — there are enough studies now, and there’s a lot more work being done on this and certainly the Alzheimer’s Association is involved in supporting some of this research, that talks about reducing risk factors, and that is different than an absolute prevention.
So enough studies are telling us that a lifestyle of regular exercise, and we’re not talking about a world-class marathon training regimen here, but regular exercise and also what we would consider a heart healthy diet, seem to show on large population studies, large epidemiological studies, to reduce the risk factors associated with Alzheimer’s disease.
They obviously have all kinds of other benefits, including for heart disease and cancer and other very serious illnesses, so it seems like a slam dunk that if you do not follow those, those lifestyle changes should be implemented.
Let’s talk about some other figures. There are just over 5 million Americans right now, as I understand the numbers, who have the disease. With the first of the baby boomers turning 65, the elderly population is just about ready to boom. What are we expecting in terms of numbers for Alzheimer’s in coming years?
It’s really frightening. We are projecting that 10 million baby boomers will develop Alzheimer’s disease unless we can bring effective treatments to market and that’s just frightening. Right now, every 69 seconds, someone in America develops Alzheimer’s disease, and that number will decrease by 50 percent over the next 40 years. So it’s very possible we could go from, as you said, a little over 5 million Americans to upwards to 15 or 16 million Americans.
We count about two to three family caregivers that are also directly involved with this disease …
So you’re saying beyond those who directly suffer from the disease or will suffer from the disease, many, many, many millions more will be affected?
Absolutely. If we’re looking at 15 million Americans by the middle part of this century, we’re talking about 30 to 50 million people total — just in this country alone, and obviously Alzheimer’s is not just in the United States — affected by this disease. Families are so impacted by this disease, the spouse, whether it’s young children with someone with younger onset, or adult children who have their own kids that they’re taking care of and then an elderly parent who has Alzheimer’s disease. It’s an incredibly resource-intensive process to be an effective caregiver for someone with Alzheimer’s.
We have what some call now the “aging of the aged,” in that the number of people living to be over 85 is also skyrocketing. What are the implications of that?
Well it’s an irony because as we have become better at treating a number of illnesses and diseases, the population is living longer. One of the reasons we didn’t see Alzheimer’s disease so much in, let’s say, the early part of the 1900s, because people were probably average lifespan was around 50 years old. So most people were not living up to the age of the greatest risk for this disease.
So as people are living longer — and we’re very thankful that we’re making progress, have made wonderful progress, in other major chronic and acute health care issues affecting people today — more and more people are living to the age of greatest risk for Alzheimer’s disease. We believe Alzheimer’s disease is really the critical health issue of the 21st century. We need to figure this disease out.
Since Alzheimer’s disease patients need round-the-clock care as the disease progresses, who is going to care for these people? Are we prepared? Will there be a shortage of caregivers beyond the family members we talked about earlier?
There absolutely will. We barely have enough resources today in terms of both, as you were saying, professional caregivers and even family caregivers. I know you asked about professional but with the baby boom generation and a smaller population set following behind that, what has traditionally been the role of the adult children, there’s going to be a much greater strain on that population group with a larger cohort of baby boomers who have Alzheimer’s disease. But we will not have enough professional [caregivers] — whether we’re talking about aides working in nursing homes or even physicians. Today there are very few geriatricians in America — hard to believe with the growing elderly population in America.
We’re pleased, there have been a couple important developments. Nationally the Alzheimer’s Association was very involved working with Congress and then President Obama to sign something called the National Alzheimer’s Project Act. He signed that in January and there now is an advisory committee working with Secretary [Kathleen] Sebelius at the Department of Health and Human Services to develop a national plan to look at all the the issues that we have just been talking about, including: what are we going to do in terms of having a professional workforce that’s actually going to be able to assist families as the aging of the population continues to expand?
We also have just finished a state plan in Massachusetts and just presented it about three weeks ago to Gov. Deval Patrick and we’re looking forward to his adoption of that plan so that we can do similar planning for: what are we going to be doing here in Massachusetts to prepare ourselves for this?
What’s the top line recommendation out of the state plan?
The state plan has a series of recommendations and it includes a couple of key areas, one of which is trying to expand the level of support for family caregivers, so that includes education and training, and ultimately even public and private resources because this is so difficult for families to take care of. There’s a large emphasis on training the professional workforce.
I will say, in Massachusetts, we’ve made great strides here. But we need to make sure that the workforce that is directly interacting with the aging population is dementia-capable, Alzheimer’s-capable, and we have a long ways to go on that.
And there’s a healthy section in the state plan, the draft state plan, I should say, that also talks about the medical community because today at least 50 percent of people with Alzheimer’s disease are not even diagnosed. So we have a lot of work to do, particularly in primary care, to help physicians to understand how to screen and diagnose for this disease and also to understand the importance of doing that as early as possible. Those are a few of the highlights.
All of what you’re talking about, though, is going to cost money, at least to one degree or another and I’m wondering where you think the money is going to come from, either on the state level and/or on the federal level.
Well I don’t have an answer to that and obviously in today’s financial world both on the federal and really almost every state in the nation is incredibly stressed financially. So the plans that we have developed have a short-, a mid- and a long-range focus and certainly on the short range focus we’re not expecting to be a significant expenditure of dollars.
We do believe at some point we are going to come out of these recessionary times and public revenues will start regaining what has been lost and then it’s a decision by our policymakers: is the support of elders living with chronic illnesses and particularly those living with Alzheimer’s disease an important investment to make? We believe it is and ultimately has very important payoffs in terms of healthier communities, healthier families and a better quality of life for Americans.
[Tuesday], in the next part of our series, we’re going to delve into something that costs a lot of money: research, and look at where research is going. We’ve known about the disease for over 100 years but there’s no treatment for Alzheimer’s yet. Why has there been so little progress in treating the disease and no cure? Does it have to do with the lack of government support for research?
I think that is part of it so I would say yes. If you look at what the federal government through the National Institute of Health, NIH, the various institutes, right now cancer research is funded to the tune of $5 billion, cardiovascular heart disease to the tune of $4 billion and even HIV/AIDS to the tune of $3 billion. Alzheimer’s disease right now is currently funded at about $450 million. We’re not advocating that we take money away from other health care causes, and in fact we’ve made tremendous progress in the areas such as cancer, HIV/AIDS, certainly cardiovascular illnesses but the investment in Alzheimer’s disease is woefully inadequate given all the projections that we have just spoken about. It’s inadequate if you just look at the population affected by Alzheimer’s compared to other health care causes. So we need to raise that investment.
I mentioned the National Alzheimer’s Project Act. That was passed unanimously, bipartisan in the lame-duck session of Congress in December. It’s not a political issue on whether Alzheimer’s disease is an important cause because we talked to both conservatives and liberals or progressives. Everybody understands that investing today in trying to understand this disease and ultimately bring effective treatments to market for people living with this disease will save millions, in fact, ultimately, trillions of dollars in the future. So it’s a wise investment today and that is something that we continue to advocate for and will do so.
And if there’s no progress?
We’re looking at a disaster. There’s no way to sugarcoat that. We’re looking at, as we said, 15 million people in the United States of America. We’re looking at somewhere on the order of 50 to 60 million people, this is just people with the disease, globally with Alzheimer’s disease. Many of the emerging markets internationally: So if we look at an India or certainly South America, even China, which is not longer emerging, obviously it’s emerged, they have a significantly aging populations. As their ability to provide health care to their people has improved, people are living longer. So we are going to see Alzheimer’s disease and and we just have to even look at Africa in the next 40 years. It is going to explode globally, not just in this country.
What do you say to someone who’s just heard this interview and is now saying, “that guy just scared the heck out of me”?
Well, in part I kinda hope I did scare the heck out of some of your listeners because it’s a crisis that we’re facing now and it’s only gonna get worse. You know part of what we say is “failure is not an option.” We cannot hit the middle part of this century without effective interventions for Alzheimer’s because it’s really unimaginable. We need to start making progress, we need to invest the money in research, we need to make sure we have the care infrastructure as more and more of our loved ones are gonna develop this disease in the decade to come.