Feb 24, 2015 — A recent study found that more than half of elderly patients with dementia were never screened for it. Dr. Norman Foster co-authored the study. He talks more about the study findings and why it’s so important to get your spouses, parents and grandparents screened for cognitive issues before it’s too late.

Interview

Interviewer: Why family should make sure loved ones obtain an evaluation for memory problems. We'll talk about why you should do that next on The Scope.

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Interviewer: Dr. Norman Foster is the Director of the Center for Alzheimer's Care Imaging and Research at the University of Utah and was a senior author on a paper that just discovered recently that over half, 55% to be exact, of elderly patients that have dementia were never screened for dementia by a physician. Does that concern you?

Dr. Foster: It is a huge concern.

Interviewer: Should it concern me? Somebody who has parents and grandparents.

Dr. Foster: It should concern you and other listeners because there is an enormous opportunity to improve the quality of life as well as day-to-day function in people who have memory problems. If you know what the memory problem is due to, they can get appropriate treatment and address the problems that they have.

Interviewer: So screening makes a big difference, those that get screened have a much better life than those that don't.

Dr. Foster: You need to identify that there is a problem and then the second step that is determining what the cause of the problem is. Many people make the assumption that if you have memory problems, it's due to Alzheimer's disease. And often that is the case. If so, you can obtain appropriate treatment that are FDA approved, drugs that can be used for example. But what about those other cases, 40% or more in which it is an Alzheimer's disease, even in an elderly individual. It could be depression, it could be stroke, it could be many other conditions, Parkinson disease, other things that need specific treatment. And knowing what the cause is, tells us what the treatment should be.

Interviewer: So, over half, 55% of patients were never screened by a physician. Did any of these patients have anything in common? Is this a group of people that if I'm part of this group of people I should raise my eyebrow.

Dr. Foster: Let me tell you a little bit about this study. This is a very important and unusual study because it looked systematically at the abilities of people who had been identified in a population that was representative of elderly Americans throughout the country. Many different social and economic circumstances for these individuals. And so we ask the question, how many people didn't really receive an evaluation for cognitive problems that we independently identified and evaluated as part of this research study. And we were frankly horrified that more than 50% of them, we knew they had significant impairments and yet they had never received a medical evaluation. So we wanted to know why. What are the characteristics of those people who had not received an evaluation.

Interviewer: Why aren't the doctors giving these evaluations?

Dr. Foster: Well, we had some hypothesis that we tested. Is it because of their race, that there are certain racial barriers that can explain this? Are there certain financial barriers that can explain this? Is it the region of the country? There were many examples of where treatment is different in one region of the US from another. Yet in our evaluation, none of those factors were important. Instead, we it had to do with whether or not a patient had a spouse or was living with children, or was living by themselves. It had to do with their attitudes about whether this was a medical problem.

Interviewer: So, of the 50% that weren't screened the spouses in the family were actually deterring that?

Dr. Foster: Well, we don't know all these details because the original study was not designed to explore this factor. It indicates that we need to understand much more about it. But if it isn't some of these obvious insurance, socioeconomic, gender kinds of factors, then there have to be other barriers. And those barriers we think have to do with either how physicians approached these problem, in other words, we don't know whether they went to the doctor with these problems.
But in our view, they were so noticeable that it would be hard to miss by a general doctor. And so the doctor did not evaluate the problem, kind of dismissed it or perhaps thought that it wasn't necessary or important to evaluate it. So it could be physician's attitudes, physician practice patterns, or it could be family members. Now, since those who were married were more likely to get an evaluation.

Interviewer: Of course they were, anybody that has been married know that we spouses take care of each other that way, right?

Dr. Foster: Its true but it also means that children who may have been the responsible party, may have been reluctant to seek help for a relative that they had a certain relationship with. By uncertain, I mean that in pediatrics, we expect parents to bring in their children for a medical evaluation. But what do I do as a child? Do I have the right or the privilege? Is it appropriate? How will the parent respond when the roles are reversed? And so there have been a number of studies that looked at these various factors. But here in a nationally representative sample we were able to focus on what the possible factors are rather than just looking at gender issues or minority care or even health insurance we know now that we need to target what happens at the patients family level as well as what happens at the medical provider level.

Interviewer: If I understand correctly of those 55% that weren't screened, you believe from this information that it was the physician for whatever reason made whatever decisions that was the barrier to the screening happening, or its the family members that don't push enough.

Dr. Foster: That's right. So we cannot blame insurance policies, we cannot blame discrimination, gender, racial or even age discrimination in these barriers. They turned out to be something more important. There have been a number of studies looking at heart disease, diabetes care, other common medical illnesses that physicians are typically trained for and feel comfortable with. And in those cases, the major barriers are these minorities, gender, age discriminatory or insurance factors.
If you don't have insurance, then your diabetes care suffers from it. Might be true here but we are at an earlier level. We are at a level in which those factors which probably do exist cannot even be detected because of the huge magnitude of the other barriers to actually get us going that first step. We're not even talking about kinds of treatment or results of treatment and outcomes. We can't even get to that first step of having these problems recognized and managed as a significant medical problem.

Interviewer: So, we are literally at the starting line on this issue?

Dr. Foster: Absolutely at the starting line.

Interviewer: So as somebody who has parents, grandparents, aunts, uncles, what can I take away from this information?

Dr. Foster: Some people who have dementing disease recognize that they have problems. Some of them seek attention from their physicians. We think that works out pretty well most of the time. It's the same kind of model we have for other kinds of medical care. You go to see your doctor about chest pains, the doctor responds to the chest pain complaint. But many older people particularly those developing concerns about these problems, are reluctant to talk to their doctors about them. There are a lot of fears. There's a lot of unknown since we don't have a dementia aware or an Alzheimer aware population, there are all sorts of uncertainties that are there that make people reluctant to investigate these problems.
We talk to patients, sometimes they didn't want to be seen by a doctor because they were afraid that they would just be put in a nursing home, or that somebody would take their drivers license away from them if they happen to raise that complaint. They didn't know what was going to happen to them. So if the patients themselves may be reluctant to seek advice, even if they notice the problem.
We also know that Alzheimer disease and other dementing diseases affect insight so they many not recognize their problem or the extent of their problem. They misinterpret what their concerns are. In this case they actually are dependant upon the involvement of friends and family to get encouragement to seek help. Because of the other part of the results of the study, we know that, as we talked about before, spouses are more likely to bring them in. But children, it appears, may be more reluctant to do that. And certainly friends have difficulty deciding in someone who is living by themselves what the boundary is.

Interviewer: That's a tough thing to do. That can be hard.

Dr. Foster: That's right. So we want to recognize individual's autonomy and independence. On the other hand, we don't want to go overboard so that in trying to help their autonomy they actually suffer consequences that are adverse. We have to feel enabled, empowered to take action when action is needed. And there are different ways we can do this. It's not something that's easy or natural, but with guidance from physicians, social workers, nurses, how do you handle this problem.
But it may be in these cases, that friends and family need to seek advice in order to help their loved one. There are many of these practical, even logistical barriers. Some physicians aren't trained to deal with memory problems and so they may refuse to talk to anyone except the patient. That will certainly be a barrier to trying to get help for a loved one. If patients and family experience that, then it may set back their evaluation and appropriate medical care for their loved one for years.

Interviewer: So it sounds like if I've done my due diligence, and I'm concerned about a loved one that they might have some sort of dementia, I should really, as hard as it is, really encourage them to go to their physician, go with them. And make sure the physician recognizes my concern as well and don't feel like I am being dismissed.

Dr. Foster: And addresses them. And if doesn't happen with one physician, you may need to see another physician or a specialty dementia clinic so that those problems are addressed and not dismissed.

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