Many West Virginia adults find themselves in the difficult position of caring for their children and looking after their parents at the same time. Conditions like dementia and Alzheimer’s disease are problems, but so are mobility and safety issues at home. It can be stress-inducing and make many people wonder if there is any help available and where to get it.
News Director Eric Douglas has found himself in the same position and wondered the same things. This is the first installment in a new interview series titled “Getting Into Their Reality: Caring For Aging Parents.” We’ll talk with experts about what people need to know as they get older, or when helping aging parents.
Dr. Lynne Goebel is a professor of internal medicine and geriatrics at Marshall University. She works at the Hanshaw Geriatric Center. She spoke with Douglas to explain what is going on inside the brain.
This interview has been lightly edited for clarity.
Douglas: Help me understand what’s going on in somebody’s mind or what’s happening in Alzheimer’s and dementia.
Goebel: From a pathologic point of view, I can tell you that 20 years before someone develops symptoms, they have stuff going on in their brain. You’re already developing these amyloid plaques in the brain. Usually, someone will start noticing that they’re having some trouble with their short-term memory, and they may still be functioning well. That’s what we call mild cognitive impairment and it’s a precursor, sometimes, to full blown dementia.
That stage lasts about five years, where someone has some problems, they know they have trouble, but they’re still able to get it together. And they use lists and other things, their smartphones, to help them keep on track and function well. Then they have trouble functioning. So, they may not be able to use the telephone. And they may be trying to use their remote control for their TV as a telephone. So, there’s some strange things that happen and they may forget to pay their bills.
Douglas: You mentioned the amyloid plaque. So, this is a layer or a plaque that’s forming within the brain that’s causing the brain to misfire effectively.
Goebel: Then there’s the next stage where you have actual buildup of protein inside the neurons in the nerve cells. This particular protein is toxic, and it kills the cells. As the disease progresses, you’re going to have death of these nerve cells, and that’s where people lose function, and they lose memories.
Douglas: The plaque is the first stage, then this protein build up is kind of a secondary stage. That’s really where the trouble sets in.
Goebel: We’re still finding out exactly what causes this disease. Initially we thought, “If we get rid of this plaque, then we would be able to cure this disease.” Well, some of the drugs that are out there, that they’re still studying, are targeting that but we’re not seeing the results we’d hoped for in people with early-stage disease. We may be seeing stabilization, but we still need to do more study on that kind of drug. And the side effects of those medicines can be worrisome, like swelling of the brain or micro hemorrhages.
Douglas: Is there any “Aha” moment that this person has Alzheimer’s? Is there a test for this? Is there any way to know definitively early on?
Goebel: Right now it is diagnosed clinically. You’ll go to a specialist, which could be either a geriatrician or a psychiatrist or a neurologist. And that would be the kind of doctor that would do this specialized testing. We do memory tests, and we also look at the patient and see how they’re functioning, because the functioning part is also key to making a diagnosis of actual dementia, as opposed to that mild cognitive impairment.
As far as an actual diagnosis, we’re getting close. There’s a lot of study going on right now about biomarkers. Your doctor could do a spinal tap and send that fluid off and they can say that you possibly have Alzheimer’s disease based on that. And then there’s a scan, called an amyloid PET scan, but your normal doctor can’t get this kind of scan. You can only get it if you’re in a study. On the Alzheimer’s disease website, they do have a study going on called the New Idea Study where you could possibly get this kind of scan. And there’s a doctor in West Virginia, who is participating in that study.
Douglas: Does it help to have that kind of diagnosis? I mean, even if you found out 20 years before the significant onset, we don’t really have any medications to treat it, there’s no surgery to remove it.
Goebel: They did a study where they did this amyloid PET scan on people, and we found out that they had probable Alzheimer’s disease based on that scan. We did treat them differently. We gave them more medications, families were able to plan better for the future, and I think it did make a difference in those patients. I think it is a good thing to try to get that diagnosis made. Now as far as disease modifying treatments, we don’t have that right now, but I think it’s in the near future.
Douglas: You say near as in five years or 15?
Goebel: Maybe even two to five years. I think we’re going to have something we can offer people. I’m hopeful at least.
Douglas: Let’s talk about caregivers for a moment. What do families and caregivers need to know?
Goebel: I always recommend the Alzheimer’s disease association. They have an 800 number that is 24 hours. So if you have a crisis situation, you can call and talk to someone who can possibly help you right at that moment. They also have a wonderful website with all kinds of very important information on there.
Depending on the stage of the patient, they can help with a variety of things, such as in the early stages. You want to do some planning and make sure you have all your legal paperwork and power of attorney in place, and also make plans for yourself as far as being able to say what you want to happen in the event that things get worse.
Later on, there’s other stages of disease, where you’re dealing with communication issues. And the caregivers really need training on that because we know that medication for behaviors is not great. In fact, certain medications can increase the risk of death in people with dementia. So we try to get caregivers to take training and to learn how to get around certain behaviors.
For instance, if a patient is not wanting to take a bath, which happens very regularly, how can you deal with this in a way to get the patient to do it, but that’s not going to be horrible for everyone? There’s a lot of training out there for caregivers.