Marilyn Albert is professor of neurology at Johns Hopkins University and co-director of the school's Alzheimer's Disease Research Center. She talks to Melissa Block about Alzheimer's patient Tom DeBaggio, how the disease progresses, and hopes for treatment. Below are edited highlights of that interview:
It's estimated that more than 5 million people in the United States now have Alzheimer's disease. What are the projections for how that number will grow?
The projections are that by 2050, there might be 16 million people. The reason that the disease is expected to rise in number is because it is a disease related to age, and the most common form of Alzheimer's disease is the most common among people over 85, and that's the segment of the population that's growing most rapidly. That's why we see these huge projections and numbers. I think that's why we all feel that if we don't find really effective treatments, Alzheimer's is going to break the back of the health-care industry. These are people who are completely dependent on care from other individuals, and we have to find a way of stopping this disease.
What seems to show the most potential for treating Alzheimer's?
Right now, there are five treatments on the market. None of them are particularly good. On average, they all make people about six months better than they would be without the treatments. But they don't prevent the progression of the disease. What people are hoping is that we would find medications that would really change the course of the disease, so it would keep people at a much milder stage for a longer time. Right now, there are nine medications that are being tested. They don't all work in the same way. But many people have enormous optimism that one of these nine drugs is going to be really effective. The reason we're optimistic is that we understand much more about basic causes of the disease, and this new group of medicines is aimed more directly at those basic causes.
We have hypotheses. So the medicines that are on the market right now affect the chemistry of the brain. And we now realize that's not the primary cause of the disease. We know what is happening in the earliest stages of the disease in the brain. There are two different kinds of changes: One is the formation of amyloid plaque; the other is something we call a tangle. And it's the formation of those two things that destroys the nerve cells. The medications that people are trying to develop are aimed at those two substances. That's why people are more optimistic, because they think if they change the way those substances are formed or cleared from the brain, they will actually change the way the disease is functioning.
There has been a lot of hope around the possibility of a vaccine for Alzheimer's disease. Where are we with that?
There is an attempt to develop a vaccine aimed at the amyloid plaque. The notion is if you give a vaccine, you can either get the brain to mount a response to amyloid, or you can give a direct response in a vaccine, so that either way, the brain is forming antibodies to this substance that's accumulating. What we know from animal models is that the vaccine clears amyloid from the brain. The hope would be that it would do that in patients. The vaccine is being tried, and we're learning more and more about how it functions, and hopefully it will be safe and effective.
Is there any way to guess how far away new treatments or a possible vaccine might be?
We know that there is one drug that is in the final stages of being evaluated. They're actually crunching the numbers as we speak. The report about that drug is going to be coming out in June at the Alzheimer's Association Prevention Conference that's taking place in Washington, D.C.
And the vaccine?
The vaccine is in an earlier phase of development. They're just starting larger trials, what we call "Phase 2" trials. We'll see whether it's effective. An earlier version of the vaccine made people very sick, and they stopped that. Now, they're starting with a second phase, and those kinds of problems, unfortunately, are to be expected.
What have you learned over time about the role of the caregiver and what helps them?
Caregivers are enormously stressed and yet enormously loving. Most people that I have encountered give incredible amounts of care to their family members. We know that education helps them a lot. Recently, it's been clear that if caregivers really learn about the disease, and learn how it's affecting their individual, the patient has fewer symptoms, the caregiver is less stressed, has less illness, and in some cases, it delays nursing-home placement. Education for the caregiver is enormously important.
Do insurance companies typically cover things that might be helpful, such as occupational therapy or home-help visits?
It's been very hard to get these kinds of things covered. We've been struggling to do that. Part of the reason is that a lot of the health-care coverage is for physical things, so they measure whether or not somebody has trouble breathing or trouble walking, Those are not the kinds of problems that Alzheimer's patients have. The Alzheimer's Association, in particular, has been very active, trying to improve the coverage for families.
More than 5 million Americans have Alzheimer's, but the number of lives affected is much greater. Most people with Alzheimer's are cared for at home by family and friends.
Many of them say they find caregiving rewarding, but many also say it can be difficult. People with Alzheimer's can have trouble with the basic tasks of life, such as eating, bathing and getting dressed. But the emotional impact of the disease is often what's most devastating for caregivers. People with Alzheimer's can be combative and have severe mood swings. Sometimes, they simply forget where they are and who they are.
In her book Learning to Speak Alzheimer's, Joanne Koenig Coste talks about productive and simple ways to ease mood swings and anger in people with Alzheimer's, which in turn can ease the caregiver's stress.
"Aggressive behavior and angry behavior is a result of frustration," on the part of the person with Alzheimer's, Coste says. Their inability to communicate, as they search for words or are repeatedly told they're wrong, or their resentment over the limits placed on them by the disease, can trigger outbursts and mood swings.
It's a defense against a world they no longer understand, says Coste. That aggression can be lessened if caregivers try to see the world from the perspective of the person with Alzheimer's, Coste advises. So if a loved one who's confused thinks it's 1941 and Franklin Delano Roosevelt is still alive, it's OK to pretend FDR is still holding his fireside chats.
In the past 15 years, there has been an explosion in support groups, guides and adult day-care centers, all of which work together to bring some respite as families adjust to the tough issues surrounding Alzheimer's. Find out more:
— The National Institute on Aging's Alzheimer's Caregiving Guide covers a wide range of topics, such as bathing, communication, home safety and choosing a nursing home.
— The Alzheimer's Association keeps up to date on the latest research and has extensive caregiver fact sheets, from sexuality and nutrition to recommended activities. The association also runs an excellent 24-hour hotline that provides practical advice and emotional support for caregivers.