Is Alzheimer’s becoming one of the diseases in the forefront of study?

It is, very much so, and for good reason. I figure most people plan to be 85. But anybody who intends to live to 85 has a 1-in-3 chance of getting it themselves. And, by virtue of that statistic, you figure that, if you are not going to get it yourself, chances are you are going to be directly or indirectly affected by it. So it is an inescapable fact of the aging of our society. And there has been an estimate, something called the global burden of diseases, a study done out of Harvard which kind of counted the most disabling diseases worldwide, and Alzheimer’s was in the top five in developed countries.

Different patients have different symptoms sometimes, right?

Yes, they do. They share the commonality of the memory and cognitive symptoms, and also these other psychiatric symptoms that we were talking about. It is not a single disease. In all likelihood it is multi-factorial, so that there is a complex combination of genes, and we know of at least four genes that are important in some way. There could well be, and probably are, several other genes that increase the probability of getting the disease, and those that interact with a variety of environmental factors. And that has still not been sorted out. So because we are still sorting out the puzzle, and because it is probably not a single disease, I think I am going to be taking care of Alzheimer patients for my career. Now I know that is… I’m not supposed to say that from the point of view of the Alzheimer Association, but I try to be realistic. I think the likelihood that we’ll have a cure that dramatically affects the occurrence of the disease in the next decade or two is not too high. Maybe 10 or 15 percent.

Do you see other institutes using your model at Copper Ridge?

I think that it will happen. The vast majority of Alzheimer’s research has focused so far on the basic science, understanding what is going on in the brain, and that clearly is growing and is continuing to grow. That research is really funded from two directions — the NIA and the NIH in general. Thanks to Sen. Miksulski, they’ve just grown the NIH budget for Alzheimer’s to $1 billion a year. And then there’s the Alzheimer Association which gives out on the order of $20 or $25 million a year to research funding. So they are slowly changing towards funding clinical research that is interested in the care of patients. So, as that happens, I am sure that universities and similar institutes will start growing their research programs in those areas. And the flip of that is the educational side, and, yes, I think there is also going to be a substantial growth of people who specialize in teaching others how to take care of Alzheimer’s patients because we’re just going to have so many professionals involved in the care. The level of knowledge of what people know — even the ones who are now taking care of them — is still pretty low. So I think there will be a natural void to fill. We sort of feel we’re ahead of the curve in that regard, in that we’ve sort of initiated the teaching practices and can maybe do it in an innovative way with medicine and distance learning activities.

DR. CONSTANTINE LYKETSOS

Titles: Academic Director of The Copper Ridge Institute Co-director of the Division of Geriatric Psychiatry and Neuropsychiatry Professor of psychiatry at The Johns Hopkins School of Medicine and Johns Hopkins School of Epidemiology and Mental Health at the Johns Hopkins Bloomberg School of Public Health Focus: Dementia and Alzheimer’s disease Institute: Copper Ridge Institute Purpose: Joins care, research and education culture of Johns Hopkins with the dementia and longterm care aspects of Copper Ridge Affiliation: The Johns Hopkins University School of Medicine Location: Sykesville, Md. Research: Dementia in assisted living Alzheimer’s Disease research Predictors of decline in Alzheimer’s Disease Comparison of telephone dementia screening methods Development of an auditory test of object naming Dementia care skills lab program Predicting falls in long term care Activities for apathy in dementia Alkon Punch biopsy study Alzheimer’s Disease anti-inflammatory prevention trial Use of anti-depressants in Alzheimer’s Disease Effects of sex hormone replacement on cognition and cerebral metabolism

Can you talk a little bit about your distance learning?

Sure. If you appreciate that 70 or 80 percent of people in long-term care have dementia, and they are typically being taken care of by individuals at the front lines, what we call personal care workers or nursing aids and so forth, who essentially have no training in the care of people with dementia, and there are probably 40 or 50,000 long-term care facilities in the country, that would imply hundreds of thousands of personal care workers with very little or no training. So we’ve wanted to impact in that area and sort of get the basic skills to these individuals. The facilities typically can’t afford to pay for that because of a variety of factors, including government pressure. They’re barely making money operating. They’re barely able to, so they can’t afford to train their staff. So one of the missions of the institute has been to create an educational activity that is very thorough, focused on Alzheimer’s disease, that can and is at the level of the personal care worker, and that can be widely disseminated. Cindy Steele, who is one of our faculty, has lead an effort in which we are creating an interactive CD-ROM that uses a lot of video illustrations, multimedia, to walk a personal care worker through about six hours of the course where they are challenged with clinical circumstances that they face in their day-to-day life. They learn basic stuff about dementia and Alzheimer’s, but also about how to help people with dementia bathe and dress and so forth, how to relate to their behavior problems, how to provide activities for them and so forth.

Who is behind the training?

We have pretty much funded that entirely from the institute with donations from pharmaceutical companies to some extent, but also from a lot of private donors who have supported us. And the idea is that we just want to get it out there right now. We’re finishing it up in the next few months, and we want to try it, we want to study it, because our hypothesis is that, by raising the level of education of the personal care workers, we will accomplish two things. The one obvious thing is that the care that their patients get will be better, but also we think that will impact on the turnover that the personal care workers have in their jobs. Copper Ridge has about a 30 percent a year turnover, but the average for the industry is well over 150 percent. So it is a very substantial turnover rate. And so, in addition to having more improved care, we want to help the industry retain some of the workers, in part by raising the knowledge that they have. The program will provide a certificate which is good for two years, which is also very useful for the worker because that becomes a portable piece of paper that, if they go to a different facility for whatever reason, provides some evidence that they have some training in this care. The important point I want to make about this educational effort is that much of the agenda for the education that relates to Alzheimer’s, the continuing healthcare education, has come out of the pharmaceutical industry. Now that is not necessarily bad. It has done a lot of good stuff in that it has really raised the level of awareness. But it also, to some extent, focuses the agenda on medicines a little bit too much. So one of our missions will be not to compete with the pharmaceutical industry but really to complement the education and make the point that, in addition to the medicines that have huge impacts, non-medication treatments, if done properly, can have as much impact as the medicines.

Any examples?

There is a list of about three Alzheimer medicines — this isn’t terribly well-proven — that can perhaps delay nursing home placement and folks living at home by about half a year — maybe a year. There is a very nice study from New York City that shows that a caregiver educational intervention coupled with 24-hour availability by an expert clinician could probably delay institutionalization by twice that long. So most people don’t know that, and, in fact, Medicare doesn’t really pay very well for that intervention. So one of our goals for the institute would be, ‘Let’s bring those interventions that have the evidence behind them.’

Do you do economic impact studies?

Not yet, but I think that could be one of the two areas the institute could grow that I think would be very innovative. One is trying to understand what the economic impact is of getting a much better level of care for people with Alzheimer’s. I don’t think you’re going to offset the cost. I don’t think that, in providing better care, you’re going to save something somewhere so you can pay for it. But I think that you will show that the benefits are so far-reaching that it is worth the money and that the money isn’t that much.

But wouldn’t there be a savings incurred if you can double the amount of time that a patient can stay at home?

There might be. But the problem with that is, if you double their time at home, you typically double their time in the nursing home. So over the first five years you’ve probably reduced the cost but over the next 10 years you’ve probably increased the cost because now you’ve increased their life. So I’m not a big believer of saying that we should do cost offset studies to show that, because the cheapest care is no care. And so those studies become tricky.

So, when you take someone out of their home, you really hasten their death?

That is very tough because there is a big signal coming from the reason for which they are coming out of their home. So it may be that they’re coming out of the home because their death is approaching. So it is very hard to know what is coming first, and it is a hard study to do to say, ‘Is it the nursing home environment or not?’ Clearly we have seen examples of many of our patients doing well in the community for a very long time who go to an institution and die rapidly. Is it because they went to the institution? Could be.

Does the CEO of a large corporation who gets Alzheimer’s react any differently than the maintenance worker in the building?

No, because most people who are starting to get it aren’t aware that they have it. One of the symptoms of the illness is to damage parts of the brain that impact your ability to recognize patterns of impairment. I’ll give you a very specific example. If you look at a face and you can name its parts and then you can also tell whose face that is, those two functions, naming parts and integrating the information to the face of a specific person, require two different parts of the brain. That area going from that A to B is lost early in Alzheimer’s. Two-thirds of patients are not necessarily able to take all the knowledge that they have about their memory loss and realize that they are declining. So I don’t think that I have seen folks where background or level of education really makes that much difference in how people deal with the illness.

Do drugs like Senior Moment or herbs really enhance your memory?

Not if you believe the scientific studies. But I’m sure you could find, for those kinds of things, testimonials all over. But I can show you even in Alzheimer’s disease, people with placebo test better on their memory.