Nine most common types of Dementia

Transcript of Interview: “Nine most common types of Dementia”

Mike Barnes:

You know, there are lots of things that we talk about here on Parenting Aging Parents about all types of different issues, but so many of us go through Alzheimer’s, dementia. You know, your mom with dementia, my mom with Alzheimer’s, it’s just a common theme.

Kim Barnes:

I think that people often have misconceptions about what exactly dementia is and who might have it. So, we are bringing Dr. Tam Cummings, she’s a gerontologist, to talk with us today. Thanks so much for being with us.

Dr. Tam Cummings:

Thank you. Thank you guys for having me.

Kim Barnes:

I think a lot of times people don’t realize that dementia can be part of another condition as well and just maybe don’t even really understand, or they think that dementia automatically means Alzheimer’s, and it doesn’t. So, let’s talk a little bit about that.

Dr. Tam Cummings:

Sure. I think that’s a great place to start because it’s where the disease begins and where people begin to first be confused about what we, as medical people, are talking about. Dementia is not the name of the disease. If you’ve been told your loved one has dementia, you’ve simply been given the umbrella term for a group of diseases that are terminal brain diseases.

So, one of the ways that I help families understand is I use cancer as an analogy. Cancer is an umbrella term. It means cells in the body have gone astray and are attacking the body. There are 438 identified cancers, but you understand that they have domains, subsets, and variations. So, if I said to you guys I have cancer, you would say which cancer? And if I said skin cancer, you would say which skin cancer? What stage is it in? Will your children and grandchildren get skin cancer? How did you get skin cancer? And so, you’ve automatically been programmed to understand cancer and that it’s simply an umbrella term, not the actual name of what your loved one has.

Dementia is the umbrella term for 128 identified brain diseases that are all terminal brain diseases. So, if all you’ve been told is dementia, use the same questions you would use if the word was cancer. Ask the physician, you need to know who is your specialist, where will your loved one go for testing, and which form of dementia do they have.

Now, we primarily deal with nine dementias. These nine dementias are about 98% of all of the dementias. You have to remember some of the dementias are so rare there’s only a few dozen worldwide. There are only 50 worldwide cases of mad cow disease, which happens once a year somewhere out of 8 billion people. Some of the dementias attack children, so you and I don’t hear about them because the family can care for that person without the overwhelming effects of caring for an adult with dementia. So, we primarily deal with these nine dementias.

If you said your mother had dementia, I would say which dementia? If you said your mother had Alzheimer’s dementia, I would say which Alzheimer’s dementia?

Kim Barnes:

Oh, interesting. Okay, because I think that people feel like that’s sort of an umbrella term as well. Like if you have Alzheimer’s, that means a specific thing, one thing, and it’s actually several different domains.

Dr. Tam Cummings:

Alzheimer’s includes some subsets and then includes variations. Variations could be that your mom is highly agitated, his mom is very pleasant.

Kim Barnes:

Interesting, okay.

Dr. Tam Cummings:

There are variations within that. We use those nine dementias to help families get better prepared for their doctor visit.

The way you make any medical diagnosis is the doctor is taking your history, your sex, your age, and your symptoms, and then they’re removing everything it cannot be. What we’re left with is what it must be, and that’s how a medical diagnosis is made. So, you remove what it cannot be, and what you’re left with is what it must be.

The large dementia is actually mixed dementia. If you took all of the dementias that are actually mixtures, your loved one has more than one dementia. That’s really the biggest group. The biggest named group is Alzheimer’s dementia, named for Dr. Alzheimer. It has multiple domains; it’s the one that we most recognize. The third most common dementia is the vascular dementias, which is telling us something in the cardiovascular system caused this to happen, telling us its actual causation.

The next one is Lewy body dementias, named for Dr. Lewy. This dementia begins in an area of the brain very close to where Parkinson’s begins, which is important to remember. The fifth group of dementias are the dementias that we think of as being the younger people’s dementias. These are frontal temporal dementias or FTDs. This dementia starts in the frontal lobes and the temporal lobes, hence the name.

The next dementia is Parkinson’s disease dementia. Now, we know enough to know that if your loved one has Lewy body dementia, we should be watching for the onset of Parkinson’s. If they have Parkinson’s disease dementia, we should be watching for the onset of Lewy body because these two dementias are considered now first cousins.

Another one is Wernicke-Korsakoff for alcohol dementia. This takes work; you can’t have an occasional cocktail. This is someone who seriously abuses alcohol. The next dementia is a hereditary dementia called Huntington’s, which can be juvenile Huntington’s dementia or Huntington’s chorea. It also has different domains.

The ninth dementia is chronic traumatic encephalopathy, commonly called football dementia. Those nine are about 98% of all our dementias. Here’s how I would use those nine:

My mother is 82. She never played football, so I’ll take off CTE. My family doesn’t have Huntington’s; Huntington’s is inherited. The child is either a carrier or has the disease. My mother never had a drink in her life, so she couldn’t have Wernicke-Korsakoff syndrome. She doesn’t have Parkinson’s disease, so she can’t have Parkinson’s disease dementia. At 82, she’s much too old to have frontal temporal dementia. Lewy body dementia has some really interesting hallucination behavior. There are four major hallucinations: they see children playing, bugs, spiders, rats, and snakes crawling on them and biting them, bad people coming to get them, and seeing their spouse or caregiver having sex in front of them. My mother doesn’t have any of those hallucinations, so I’m going to take Lewy body off.

But my mother has weight issues, cholesterol issues, and blood pressure issues. Those things all say cardiovascular. At 82, my mother’s risk of late-onset Alzheimer’s is getting higher and higher. The cardiovascular issues have been ongoing for decades. If you have any dementia long enough, Alzheimer’s will creep in as well. I want to go back to my doctor and talk specifically about vascular dementia or vascular dementia plus late-onset Alzheimer’s, which would be mixed dementia. That was pretty smooth, right?

Kim Barnes:

Right.

Dr. Tam Cummings:

Right. Let’s look at my dad. My dad’s 85. He actually did play football, but he played six-man football in the 1950s. Those boys played both sides of the ball, so there wasn’t a lot of tackling there. Let the doctor know he did play, but primarily, we’re looking at boys that played from 1970 on for CTE. My family doesn’t have Huntington’s, so I can mark that out. People often say your mother never drank; well, that’s because Daddy did enough drinking for all of us. Daddy abused alcohol for several decades, so I definitely want to mark Wernicke-Korsakoff to talk to my doctor about. My father doesn’t have Parkinson’s disease, but his only brother died two years ago of Parkinson’s disease dementia. I’m going to make a note there just to make the doctor aware. My father, again, is too old for frontal temporal dementia. My father doesn’t have the hallucination behavior of Lewy body, so I can take those things off.

But every time he had a drink in this hand, he had a cigarette in this hand. Smoking leads to vascular conditions, which leads to vascular dementia. There may be cholesterol issues and blood pressure issues, so I want to go back to the doctor for my father. At 85, he’s in a higher category to now develop late-onset Alzheimer’s. I want to talk to my father’s doctor about alcohol dementia, Wernicke-Korsakoff, mention the football, make sure the doctor knows his brother just recently died of Parkinson’s disease and Parkinson’s disease dementia, make sure the vascular system gets looked at, and on top of all that sits Alzheimer’s, which any brain damage long enough, Alzheimer’s wants to creep in there as well. The possibility I would be talking to my doctor about my dad over several dementias.

Kim Barnes:

So interesting. How important is it to get that actual diagnosis because that does affect potential treatment, doesn’t it?

Dr. Tam Cummings:

Oh, it affects everything. It affects your children and grandchildren because it’s now part of their history. The same way my grandfather’s lung cancer is part of my history; it’s part of my medical history. Now, we need to know which dementia it is because it determines how the disease will progress, how aggressive it is or how slow it is. It tells us what kind of behaviors this person is going to demonstrate, not because they’re doing it on purpose, but because of where their brain is damaged. People with frontal temporal dementia behave much differently than somebody with Alzheimer’s dementia or a different form of frontal temporal dementia. The type of dementia tells us what behaviors to expect, what medications can be used or should not be used. People with Parkinson’s dementia and Lewy body dementia are very sensitive to medications. To not know the dementia would be like treating your person for cancer but never finding out which cancer you’re treating.

You’ve got to know which one it is. That is sort of revolutionary thinking, a way of thinking about dementia that we haven’t really done a good job of doing before.

Kim Barnes:

Absolutely.

Mike Barnes:

As kids with aging parents, if we go to the doctor with our parent, whether it’s a family doctor or neurologist, and they just say dementia, do we need to press and say we need to find out what type?

Dr. Tam Cummings:

What if they had said the word cancer? Would that answer have been good enough for you? Remember, you’re looking for neurologists who specialize in dementia. Most neurologists don’t have an interest in dementia; it is very much a specialty. Find the testing center in your area to take your loved one to because it’s actually 28 different tests that are done to make a dementia diagnosis. By ruling out the ones it can’t be, we’ve greatly helped our physician and empowered ourselves to better understand this is a group of diseases, but we very much need to know which disease it is.

Kim Barnes:

Very interesting. That is definitely a new way of thinking for me, for sure.

Mike Barnes:

Yeah, something that will be good for you and your mom.

Kim Barnes:

Absolutely. I think it’s also important to know just what you talked about, the stages. Once you know the diagnosis, you can also know what to expect.

Dr. Tam Cummings:

Absolutely. Staging tools, historically, you’ve heard of three-stage staging tools and seven-stage staging tools. The three-stage tool is primarily designed for neurologists who are diagnosing and doing research; it wasn’t designed for families. Seven-stage tools were designed to give professional caregivers and family caregivers a much better idea of the progression of the disease process. The reason for that is the same thing both of you noticed in your loved ones. There’s something different about Mom, but she doesn’t look sick, so is she really sick because she doesn’t look sick? One of the most unusual things about dementia in any form is people with dementia do not look physically sick until they’ve lost a pound of brain tissue. At that point, they’re in stage six of the disease. They now have the equivalency of a four-year-old to a two-year-old. Knowing the stages of the disease tells you how much time is anticipated that a person will be in that particular stage. It tells you what kind of behaviors are coming, what you can anticipate, how much brain tissue is gone at this point, and what the mental equivalency is.

Mike Barnes:

So, a helpful tool for me. It’s almost a glass is half full, glass is half empty type of thing because you can look at it, Mom has Alzheimer’s, you look at it and you realize, oh, but it’s only stage four, so things are good in that respect, but look what’s coming. For me, as I downloaded the list you have on your web page this morning, I looked at it and I knew already, but I’m just reaffirming it, Mom’s stage six. Looking at everything, I’m like, that’s Mom, that’s Mom, that’s Mom, that’s Mom. It’s good to know. It’s not comforting, but it’s good to know.

Dr. Tam Cummings:

It is not fun, and I recognize that the information I give people is hard to hear. This is your loved one that I’m talking about in a very clinical manner, but I believe if we give the monster a name, we can’t change the monster, but at least you know now that what your mother is doing is not pretending. She’s never been pretending; she’s simply been responding to brain damage. She’s not faking it. Social skills are one of the first things you and I learned. On the day you were born, someone shook your hand, and within a few days, they were holding you up to wave goodbye to people that came to see the new baby. Social skills right away. So, if I start that social skill of “hi, how are you,” your loved one will continue to respond, “oh, I’m fine, how are you.” Because they don’t look physically sick, families and professionals think they actually know what’s going on, but you watch them hang up the phone and realize they don’t remember they were just on the phone. They have no idea who they were talking to, and that’s not really a conversation that has cognition in it. It’s just an automatic social thing you and I have been taught to do. It’s no different than shaking my hand.

Kim Barnes:

Interesting. This is just a sneak peek of the things that you’re going to be talking about at the GPS Navigation for Caregivers conference coming up soon. Do you want to share anything more that you’re going to dive into in even more detail?

Dr. Tam Cummings:

Yes, it’ll be very depressing when we’re finished. We’ve got handouts that have been sent out, so we’re going to try to send you home with lots of information. I realize that I’m giving you a ton of information in a short amount of time, so GPS will have things available for you to download online. We’re going to give you a book that I’ve got that’s not quite ready to go to publication, but we’re going to give you the bulk of it that you’ll be able to download yourself. It’s called the UBitty Dementia Book, and it will include the staging tools to help you, but also tools that will help your physician get a better idea of what’s going on at home, like the activities of daily living, the instrumental activities of daily living. We’re going to include some things for you to measure your own stress level. The caregiver death rate before COVID was two out of ten family caregivers dying before the person with dementia dies, and it’s the direct result of the stress of care. The fear now with COVID in place is that the number may have gone as high as three. We’re going to give you some materials to test yourself, see how your stress level is, to make sure you are taking care of you as well. It’ll be a lot of information we’ll get out to folks.

Kim Barnes:

That is… you are definitely a wealth of knowledge.

Mike Barnes:

Dr. Tam Cummings. Thank you so much for joining us today. We appreciate all of the insight.

Dr. Tam Cummings:

Thank you, and thank you guys for what you do.

Mike Barnes:

Thank you very much.

Kim Barnes:

Wow, I learned something new. Yeah, I had no idea. I think this will be really enlightening for a lot of people. Really, the idea that you really need to know what type of dementia it is and that there are so many different kinds and factors and all of that. Wow.

Mike Barnes:

You’re going to be talking to your mom pretty soon and exiting off different ones over the nine to make sure it’s not that.

Kim Barnes:

Right, exactly.

Mike Barnes:

Don’t forget, if you have any other topics you’d like us to talk about here on Parenting Aging Parents, please let us know.

*This transcript is auto-generated. Please excuse any typos or mistakes.