Dealing with Dementia

By Kevin Tankersley

A conversation with neurologist Dr. Mark Schwartze

Living a healthy lifestyle means more than just eating right and staying physically fit. As the World Health Organization succinctly put it,

“There is no health without mental health.”

Physical health and mental health go hand in hand when it comes to a person’s well-being, though the latter often gets overlooked or dismissed.

As part of this month’s Health issue we are starting a three-part series on mental health, beginning with a look at dementia and Alzheimer’s disease. According to the Alzheimer’s Association, one in three seniors dies with some form of dementia. Of the 10 leading causes of death in the U.S., Alzheimer’s is the only disease that cannot be prevented, slowed or cured. And the number of people living with Alzheimer’s is growing quickly.

Dr. Mark Schwartze is a neurologist with Baylor Scott & White Health and has been working with dementia and Alzheimer’s patients for about 30 years. He graduated from Wake Forest University Bowman Gray School of Medicine in 1978 and completed residencies in both neurology — at North Carolina Baptist Hospital in Winston-Salem — and internal medicine through Texas A&M Health Science Center at Scott & White Hospital in Temple.

Wacoan writer Kevin Tankersley spoke with Schwartze about the different types of dementia, the tests used to diagnose it and how to determine when a loved one should be moved into an assisted living facility.

WACOAN: When most people hear the word “dementia,” they think it equates to growing old and being forgetful. Is that an accurate description?

Schwartze: There are other aspects to it as well. Being forgetful is not the only aspect. Certainly there are problems that people with dementia get in different domains, or different areas of cognition.

One of the areas is orientation. People will become demented and not remember the day or the date. They’ll not know the season of year. They’ll not know their location. Sometimes they’ll have problems driving in areas that were familiar to them earlier. They’ll get lost.

In addition to the memory — that’s usually the big thing — they can have trouble with their attention span. That’s dropped off or their ability to perform tasks like calculating or [their ability] listen attentively.

Then in Alzheimer’s, sometimes earlier than in some of the other [forms of] dementia, the language abnormalities — not being able to do things like repeat or having difficulty understanding some of the symbols. You write a sentence and ask them to [write the same sentence], and they can’t do it because they don’t understand what you’re asking.

And a lot of doctors will do what we call a constructional apraxia [test], where you have them draw a clock face and put the numbers on it or try to draw a 3-D image or a complicated 2-D image or something like that. A lot of people have trouble with that as they start getting demented.

But then after people get dementia, they not only get the cognitive problems, they also get into the behavioral [problems], as well as your activity of daily living losses. Behavioral aspects would be things like they’ll start having problems with sundowning, getting confused in the evening. Or they’ll have problems with getting up at night and wandering, things like that.

Or the activity of daily living [suffers]. They probably won’t pay as much attention to grooming themselves, combing their hair or taking baths regularly or cleaning themselves regularly. That’s when you really do need to get some help in.

WACOAN: Is there something about the sun going down that triggers behaviors?

Schwartze: I think it’s more likely a combination, and nobody really knows for sure, but I think it’s a combination of the lack of light and the fatigue of the patient being up all day. It’s losing some of the illumination of the day as well as the fatigue.

WACOAN: Alzheimer’s is just one part of dementia, so if someone has dementia, that doesn’t necessarily mean that he or she also has Alzheimer’s. Is that right?

Schwartze: Alzheimer’s is one of the forms of dementia. There are many forms of dementia, but probably Alzheimer’s is the most common form. If you took 100 people with dementia, Alzheimer’s would be [present in] a good 60 percent or more.

But there are things like Lewy body dementia where, in addition to the dementia, you start having some signs of Parkinson’s disease. That gets a little dicey because folks who have Parkinson’s long-term also start having some problems with their memory. But usually with Lewy body, the onset of the cognitive problems and the Parkinson’s symptoms are somewhat close in time. They’re not that far apart.

The other types of dementias, we see things we call frontotemporal dementia. This will include things like repeating a sentence or behavioral abnormalities, where somebody will start to behave in an unusual way, maybe more aggressive or belligerent than they had been.

Then we’ll see vascular dementia, people that have had multiple strokes. They’ll lose their cognitive ability.

Now we’re seeing more and more of, and being more concerned about, what’s called chronic traumatic encephalopathy. This is folks who have had some sort of injury, people who have come back from some sort of combat duty or professional or college football players who [sustained] a lot of head injuries, they start having signs of dementia.

WACOAN: CTE, as you mentioned, is caused by something — combat or sports head injuries. Are other forms of dementia actually caused by anything? Is it hereditary, is there a gene it can be traced to?

Schwartze: In some of the early onset Alzheimer’s [cases], there’s a few genes that they do look for.

Probably the most common one that we see in the early onset of dementia and usually in Alzheimer’s is the Down syndrome, or the trisomy 21. They have three of the 21 chromosomes. That seems to be an important gene for the amyloid precursor protein. That’s a protein that’s frequently associated with Alzheimer’s. But there is a genetic component to it.

The other one that is probably even more so is what’s called the apolipoprotein E4. That is a gene that coats for the lipoprotein and that seems to give an earlier onset of Alzheimer’s to a lot of people. You might get Alzheimer’s in your 80s, [but] if you get one of the [E4] alleles or genes, you might get it in your 70s. And if you get two, you might get it in your 60s. But that seems to be a disposition for earlier onset Alzheimer’s.

There’s a lot of genetic components to Alzheimer’s. We don’t know them all, but there are a lot of them out there.

WACOAN: Outside of CTE, is there any indication that dementia and Alzheimer’s can occur in younger people?

Schwartze: Age seems to be the biggest risk factor, but certainly you can see Alzheimer’s in younger patients. They say by 65, perhaps as many as 10 percent of the folks that make it to that age will start getting dementia. By 75, it can get up to 20 [percent] or higher. And then by 85, it can get up to 30 or 40 percent. So it tends to rise as the age rises.

People that are younger, especially people that have some of these genetic things like the Down syndrome or happen to have two copies of the apolipoprotein E4 allele, they will get it sooner. And there are some [people with] Familial Alzheimer’s [disease] carried on chromosome 1 and 14 that also tend to be earlier onset. You may see it in the 40s or 50s.

WACOAN: OK. Back to family issues. Are there signs besides forgetfulness that family members should look for if a loved one is diagnosed with dementia?

Schwartze: Forgetfulness is just one aspect, but certainly there are other aspects. Whether or not they can safely stay at home is a big problem. Above everything, you want to keep the environment safe for the family member that you’re concerned about. You want to try to make it so that they’re not falling and things are as safe as possible at home and they’re able to take care of themselves or have somebody come in to help them.

WACOAN: Do you think there might be a medical dilemma when it comes to helping to prolong the life of a patient with dementia?

Schwartze: Usually, I think doctors are always going to want to listen to the family and try to be on the same page as the family. Usually the family has unfortunately watched the gradual decline of their loved one, and the family is understanding that things are only getting worse and not getting better.

Certainly, there are things that doctors can do. Usually, when it’s gradual, families are not too overly concerned with prolonging the life. They understand that it’s inevitable that there’s going to be the downturn in the patient’s abilities.

WACOAN: Do you often see a mourning process among family members, even though their relative is still with them, but it’s no longer the person they knew?

Schwartze: I don’t see family members mourning and giving up on them, things like that. I do see them being sad that they’re not able to appreciate life and be part of the family like they were before. I think most family members, even though [the relative is] not the same person, they want to still be there for them.

With Alzheimer’s or most dementia, there are fluctuations. There are good days and bad days. Family members tend to cherish those good days that they can still talk coherently and reasonably.

WACOAN: You mentioned earlier about patients becoming belligerent. Is it common for them to become hostile toward caregivers and family members?

Schwartze: I think that’s one of the behavioral aspects that you can see. This may be a misinterpretation of the things around them, some of the paranoid ideas they get that everyone is out to get them or somebody is taking things from them and stealing from them and things like that. It’s reaction to those things.

But those cognitive things that happen, staying up all night and them wandering and them being belligerent at times, I think those are all expected at times. That’s not to say that everyone has them, but some people do show that.

WACOAN: Besides the wandering, are there other things that a family might want to look for in order to determine that it’s time to move a loved one into assisted living?

Schwartze: Usually the cognition loss occurs first, and the biggest thing that forces a decision is safety of the patient and whether or not the patient can be kept at home safely. As far as moving them into some place, usually the behavioral aspects are not that big of a decision forcer, but the safety is.

In talking to my patients, it comes to the point that, say, a daughter is trying to take care of a father or mother at home and it’s just overwhelming her, especially if she has other responsibilities, like family or job. If it just overwhelms her and she just can’t do it any longer, she would do that. But that occurs for a lot of people. They just can’t do it any longer. Either they can’t do it or they’re not equipped to do it.

WACOAN: I’ve heard of patients who can’t remember what they had for breakfast, yet they can remember things that happened 30 years ago. Is short-term memory loss a problem more so than long-term memory loss?

Schwartze: Oh, yes. The short-term memory is a thing you see lost first. A patient comes in and they can’t remember somebody they met or can’t remember what they did just yesterday, but they can remember when they were young, when they were a child being with their family.

Usually, when we see it, most of the times families will start to become concerned when patients are losing some memory. We call these people mild cognitively impaired or mild cognitive impairment. Usually we’ll see patients stay at that mild cognitive impairment level for maybe a few years. Some people stay there, but some people fall into dementia after that.

But with mild cognitive impairment, you’ll frequently see those short-term memory loss aspects. With the early part of dementia, you’ll start seeing that short-term memory affected more than the long-term memory.

WACOAN: Once someone has been diagnosed with dementia, is there any way to slow down its progress?

Schwartze: I wish there was. I tell my patients that I wish there was some way I could cure this or at least stop it where it is. There is no way that we can stop the process once we believe it’s set in motion.

There are drugs out that we give to folks, like the cholinesterase inhibitors, Aricept or Exelon or Razadyne. Those are all out there and tend to increase the level of a neurochemical called acetylcholine in the central nervous system. We think that can help the memory, but it doesn’t stop the basic process, the loss of the nerve cells.

There’s also Namenda, which is an NMDA receptor antagonist that stops the loss of some neurons. It retards the loss. It doesn’t prevent it. I wish there was, and that’s what we’re all hoping for that someday there will be something out there that will stop the progression or even cure it.

WACOAN: In your 30 years of practice, have you seen advances in better understanding dementia?

Schwartze: Yeah, I think I have. We’ve tried to understand or separate out more of the Lewy body dementias and the frontotemporal dementias and, certainly, this chronic traumatic encephalopathy-type dementia. We always knew about Alzheimer’s and the vascular aspect to dementia, but we’re seeing more classifications of it.

As far as treatment, the cholinesterase, acetylcholine hypothesis, has been around since before I was in medicine in the ’70s, and the NMDA receptors have come out probably in the ’90s or early 2000s. They’re making headway. We’re hoping more things will become available, but we’re just not there yet.

WACOAN: How do you determine that some even has dementia? Are there tests you can run, or is it just the symptoms?

Schwartze: I’ll frequently follow my dementia patients with the Mini-Mental [State Examination] test or the Montreal Cognitive Assessment. Those will talk about the various domains to see if they have any problems or, as we follow them, to see if they have lost any ground in these domains.

If we’re really concerned and we want to get a baseline on it, we’ll frequently send them to see one of the neuropsychologists, and they have a battery of tests they’ll do on the patient to find out about memory and IQ and things like that.

WACOAN: So the tests that doctors can run are more cognitive tests and not medical tests, where you draw blood or something?

Schwartze: We can draw blood and do spinal fluid analysis also. As far as drawing blood, we can do that for the apolipoprotein E4. We can also look for some of the genetic aspects of it. And we can look for some of this chromosome 1 and 14 abnormalities as well.

If there’s somebody you’re concerned about, it’s a good idea to get spinal fluid to make sure they don’t have some sort of other problem that could explain it, like chronic meningitis or some sort of smoldering infection or something like that.

And we always like to get an MRI brain scan or CT brain scan to make sure there’s not something else going on like [a collection of blood on the surface of the brain] or even a tumor that can masquerade as dementia.

The other aspect that’s very concerning, and one of the things we use our neuropsychological evaluation for is depression. Sometimes, especially elderly people, when they get depressed, it can look like a dementia.

WACOAN: There was an article in The New York Times this morning about a situation like that, where an elderly woman had a sudden onset of depression and doctors couldn’t figure out why, but it sounded like what you just said.

Schwartze: You always want to check [vitamin] B-12 [deficiency] and do a thyroid test, and some people like to check for inflammation as well to see if there’s any of these things. A low B-12 level can masquerade as a dementia, and a low thyroid can masquerade as a dementia. There are various laboratory tests you want to get the first time you meet the patient.

WACOAN: What advice do you have for families who have to have that conversation with a loved one when it’s time to move to assisted living?

Schwartze: I think if they’re getting to the point where they’re saying, ‘We can no longer do it,’ I’ll emphasize to them the safety of the patient. If they’re falling a lot at home, or if the patient is doing things like walking outside at night and getting lost, you have to say things like, ‘Well, the most important thing is safety.’

Then [often] the patient will be happy to stay in the home, but you can’t always do that unless somebody essentially changes their life and becomes more of a full-time caregiver for the patient. Or if it’s one of those nice situations where you can afford to have somebody come in and stay with them.

WACOAN: Once dementia has been determined, is there a timeframe of how long someone has to live?

Schwartze: There’s an average of various types of dementia. People with Alzheimer’s probably can go, after the first diagnosis, another eight to 12 years. Folks with Lewy body dementia probably don’t go quite that far. They might go six or seven years. Folks with frontotemporal dementia seem to go [downhill] faster also. Vascular dementia, [which is related to strokes,] is interesting in that it depends on if you can control the risk factor.

Then chronic traumatic encephalopathy, I don’t think we know well enough, but we start to talk about when it’s first recognized. We think it’s recognized, say it’s a football player, while the player is finishing their career, then you’ll see him have all sorts of behavioral problems and [commit] suicide or just do crazy things. You remember that football player Junior Seau, killed himself. It’s just very unfortunate.

WACOAN: From what I understand about CTE, it’s impossible to determine if someone has that until after they have died.

Schwartze: Yes, that’s probably true, and that’s one of the things that we do need to work on, to try and be able to diagnose it earlier.