What is unique about The Copper Ridge Institute?

What makes it unique is the fact that it is a teaching and research environment focused on the care of people with Alzheimer’s Disease. So the other place is the John Douglas French Institute in Los Angeles. And they similarly combine a place where they provide superb clinical care alongside an academic setting where they do research and where they teach other professionals outside their own setting how to take care of people with Alzheimer’s.

Do the patients or their families know you want to study them?

We only study them with specific studies with their consent. But when they do come in, yes, it is told to them that they might be approached to be in research and they have the option to refuse, and so there are some rules about how you do research. Yes. And people do know that, and that is an attractive thing to them we find.

What does the research involve?

We have a lot of studies. The research has, if you will, two themes — a central theme, which is improving the care of people with Alzheimer’s disease. But also the research broadly tries to contribute to advancing knowledge about Alzheimer’s disease — not necessarily in the context of care. So many of the Copper Ridge residents and out patients might be recruited into studies we do here at Hopkins. So there is another population.

But the main mission of the research we base at Copper Ridge has to do with improving the care. How do we make diagnoses better? How can we make it earlier? How can we make it more accurate? What is the range of symptoms of the disease that are problematic to patients and their caregivers? What is the best way to treat each of those symptoms? So what is the role of different kinds of medicines to treat different kinds of symptoms?

Have you made any strides in the study of Alzheimer’s through these patients?

Yes, well, we have actually. One of the major strides, I think, is that we have articulated and developed experience with what we call a model of care so that the total package from diagnosis to death and a whole lot of the detail goes in the manual of how to take care of someone.

Another big aspect has to do with bringing attention to a range of symptoms of Alzheimer’s disease that most people don’t always associate with the disease. So if I say to you Alzheimer’s, you think memory. But you don’t necessarily think depression, delusions, hallucinations, agitation, wandering behaviors — all of which over the course of illness afflict almost every patient. So we’re starting to appreciate how common these other symptoms of the disease are. We’re appreciating how they, too, arise out of the brain damage that the disease has caused. So this disease damages so many parts of the brain that you get a whole range of brain symptoms.

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

And now the other big strategy has been that we can now zero in on these symptoms one by one with different strategies and treat them — medication and non-medication strategies. We’ve shown that by treating them not only do you improve the symptom, but you tend to have improvements in the progression of the disease or at least the functional decline of the disease.

But there is no cure, is that correct?

There is no cure.

Is this a product of aging?

No. I was just at a meeting in England where more and more data is suggesting that that is not the case. And so there are several lines of evidence that indicate that it is not just a byproduct of aging. First, if this was an inevitable consequence of aging you would predict that if you just let people grow old enough they would all get it. And indeed the frequency, the prevalence goes up with age, but at some point it starts going down. So somewhere in the late 80s, early 90s, it comes down, and a couple of studies have estimated that there is at least a quarter if not a third of the population who could never get it, who seem to be protected against it. So that’s the one piece of evidence — there are people who have all of the “risk-factors” including age but don’t get it. And I have done some of those studies, and interviewed, met some of these people in their 90s, 100s, and it is impressive. It’s like you and me in an older body from the point of view of mind activity.

But you don’t know what is protecting them yet.

We don’t know yet. Right. And given that many of these folks have been exposed to the traditional risk factors, probably the biggest protective effect is from their genes. And in fact that is one of the positive things because if you have abnormal genes, it is very hard to make proteins that will compensate for those abnormal genes. Cystic fibrosis is an example. It is caused by a single gene. And everybody had a sense that there would be this gene therapy where you could deliver the lost protein and cure the disease. Well, that’s very, very hard to do. On the other hand if you have a disease where a normal protein at a higher supply perhaps can be beneficial, that is a better paradigm because you’re not trying to compensate for a bad protein, but you are trying to introduce a normal protein. And that is often easier to do.

What else points to this not being simply age-related?

The other piece of evidence is that when people who have these memory symptoms are studied carefully, it is clear that you always find brain disease. So that you don’t find people who have dementia whose brains are not diseased in some way. If you do it is very, very rare, and the sense is even in those cases it is a matter of not having found the proper stain to put onto the microscope. You know the ‘My Fair Lady’ movie, ‘the rain in Spain stays mainly on the plain.’ There was a neuroscientist at this meeting who was paraphrasing that about what advances have really happened in the dementia field in the last five or 10 years and he said, ‘the advances in the brain have mainly been in the stains’ because in the last 10 years we have seen new stains come out and we are now describing new brain diseases that explain the dementia.

Is it advantageous to have all these patients in one area?

It is an interesting question. There are clearly both advantages and disadvantages. The advantages have to do with the fact that you can then provide an orchestrated program of care in an efficient way and you can provide it by highly experienced care professionals. The disadvantage is that many times these folks develop dis-inhibited behaviors and might very rarely through those behaviors injure some of the other patients and it is harder for them to defend themselves. That is uncommon, but it is an example of the disadvantages.

I think the perfect solution would be to set up a mini kind of assisted living in everyone’s home. That would be the perfect solution. But the reality of that is fairly low. You can’t always do that. By way of example, if you look at who is in assisted living facilities and nursing homes from the point of view of socio-demographics, it is usually women in their late 80s whose spouses passed away and who have one child. That is not the typical profile of the older person. So it is usually older people who don’t have the personal resources to take care of them — not some much the financial resources — who are typically in assisted living nursing homes. So one of our research missions is focused on long-term care. And so one of our eventual missions is to create care programs as diverse as possible that will do the best job in taking care of these folks.

Are these individuals harder to take care than someone who is dying of cancer?

Yes. One of my former students from Spain came over to the institute and did a study with us a few years back. She compared the burden that caregivers of cancer patients experience relevant to the burden that dementia patients experience. And it’s a fairly substantial difference. And she actually had in her group a range of other caregivers.

Is it because the mind ceases to function in a rational way?

There are several things that go into it; that is one of them. The communication with the person is lost. There is the emotional toll of losing a loved one in more than a physical way. The actual physical needs are bigger as well. Cancer patients generally aren’t incontinent; they can generally walk around, they can generally decide for themselves. But that is not true for Alzheimer patients. With Alzheimer’s you have a very large combination of disabilities that hit the person all at once. The mind is going, their ability to care for themselves is going. And of course there is the emotional impact of losing them.