What clinics get wrong about dementia care

INTERVIEWER: As a matter of fact, June is Alzheimer's and Brain Awareness Month. More than 55 million people live with some kind of memory loss worldwide. That number is expected to jump in the coming years. Is there a better way to care for these growing numbers of people?

There's a new effort in central Minnesota that's trying to find out. It's called the Central Minnesota Dementia Community Action Network, and it's a group trying to change the community's response to those living with dementia. Dr. Pat Zook is with me right now. He's a retired family doc and the president of the Central Minnesota Dementia Community Action Network. Welcome to the program, Doctor. How are you?

PATRICK ZOOK: Oh, I'm great. Thanks, Kathy.

INTERVIEWER: You spent 40 years, as I understand it, as a family medicine doctor, but I also know you have a personal connection to this issue. Tell me about that.

PATRICK ZOOK: Well, as most of us in our campaign and our program have personal connections, both my parents lived and died in Cleveland, Ohio and both had dementia. And we're in long-term care for the last couple of years of their lives. And I wish I knew then what I know now and would have done a much better job as one of three children taking care of them and looking after them. But there's been a lot of new data coming along in the last 5 to 10 years and we're trying to capitalize on that, what we're doing here in St. Cloud.

INTERVIEWER: Given your experience with your parents, what do you think is missing in the current way we look as a society at Alzheimer's?

PATRICK ZOOK: Well, you know, what people need, they need the what. The what is, what's the diagnosis? That's hard to do with dementia. And they need to know, is there some treatment they should have. And they need to know if it's something else that looks like dementia, but isn't. Is it side effects of drugs, or low thyroid, or something else.

So, they need to know the what, but they really-- how did you get to have dementia is what we're after. And what we're looking is upstream, what are the many causes that could contribute to the development of dementia. Now, there are many types of dementia.

And most of the time, when you hear the data that says there's 5.8 or 6.2 Americans living with Alzheimer's, Alzheimer's is only 2/3 of dementia. So, they call it Alzheimer's disease and Related Dementias, or ADRD. And there's actually, I can't do the math in my head, but if 6.2 million is 2/3 of a much greater number. So, there's many more Americans living with dementia than that.

INTERVIEWER: Do you see dementia as treatable?

PATRICK ZOOK: Well, the way we look at it is, we don't see what we're doing as a cure. People, they want to know the diagnosis, but so much of what they need is beyond the what. And we look at the why. Why does this person have dementia and what were all the contributing factors?

And it's not just one or two. It's quite often 10 or 12 contributing factors. So, if you're low thyroid, if your B12 is low, if you've taken a proton pump inhibitors for acid all your life. I mean, there are many risk factors that people have not heard about. Having gum disease, gingivitis, exposure to farm chemicals, et cetera, et cetera.

And we go through dozens and dozens of those. We try to pick up the pace and fix what's fixable of the risk factors, and then see what we get. Our evaluations also recommend several lab tests, which are not routine. And we collaborate with community physicians who are doing dementia care, because we know we need to get all of them doing dementia care.

And so, we work with them and advise certain additional tests, some of which are not typical, like blood homocysteine level and going back to doing uric acid again. You know, uric acid, we stopped doing on our profiles several years ago, but it turns out, uric acid in your blood not only can it give you gout and kidney stones, but it can damage your blood vessels. And what's good for your blood vessels is good for your brain. And what's bad for your blood vessels is bad for your brain.

INTERVIEWER: I've heard that. Yeah.

PATRICK ZOOK: Who would have thought uric acid? Dr. David Perlmutter just put out a book just this year called "Drop Acid," which doesn't refer to psychedelics, it refers to uric acid, and why you want to get it lower. And--

INTERVIEWER: So, you are-- you are aggressive when it comes to trying to find the-- some of the-- the causes of symptoms, right? I mean--

PATRICK ZOOK: Absolutely.

INTERVIEWER: Then can you help a person live a better life with dementia?

PATRICK ZOOK: Well, what we do is not a cure. It's-- we call it, small ball. Like in baseball, where you get bunts, and singles, and steal bases. You look for every advantage up that you can. And so, we look at the risk factors they can modify and quite often there's 10 or 12 things.

So, I would have to say a 1/4 of our clients have sleep apnea that's either undertreated or not treated. We can fix that. A few of them still smoke and we can fix that too. Many of them are hooked on sugar and high fructose corn syrup is a part of their daily life. We try to tell them how high fructose corn syrup is going to raise your uric acid, which is bad for your brain.

And so, things like that and dozens of other things similar to that, we work on it. And it's almost overwhelming. Our evaluations take two or three hours and we have an hour and a 1/2 of screening before that. And we bring people back three or four times here because it's almost too much information at one sitting.

INTERVIEWER: Mm-hmm. I know you're funded by folks like the CentraCare of Individuals in St. Cloud, St. Cloud Hospital. Why is it important to have a center like this in rural Minnesota?

PATRICK ZOOK: You're calling us rural?

[LAUGHTER]

INTERVIEWER: Sorry.

PATRICK ZOOK: We're in St. Cloud. It's 67,000.

INTERVIEWER: Good boy. Good boy.

PATRICK ZOOK: I'm sure it's much more. But in reality, you're right. Many of our clients come from 30 and 40 miles out and they come from small towns around. And so, it really is a rural population, to some extent.

But we feel that Minnesota actually needs about 20 centers like ours. And other states have done this. For instance, Wisconsin, I think Patrick, our executive director, told me yesterday, Wisconsin is up to 47 clinics that do dementia care around the state of Wisconsin. We call them cheeseheads, but they're pretty much like we are, in reality.

And they figured it out. And their legislator decided to take care of those clinics to make sure they stay afloat. Now, they don't do the exact model that we do. They have more of a standard practice of neurologic care for dementia.

But what we found is what-- what you get in the doctor's office is only about 10%, or maybe 20%, of what families need. They need so much more. They want to do stuff. And what they've been told in their clinical encounters is, I'm sorry your loved one has dementia. There's nothing we can do. Come back in a year.

Or if their symptoms are early, they'll say, you know, your symptoms aren't bad enough to warrant drugs. Why don't you come back in a year and if your loved one's bad enough, then we'll give them the standard drugs.

So, it's-- it's a different model in that we look at doable things. And Minnesota-- Minnesotans don't like to be told there's nothing you can do. We do not want to hear that. And in reality, there is much you can do.

INTERVIEWER: If people want information as to what you're doing, where can they go?

PATRICK ZOOK: Well, you can go to our website. It's just DCAN-- DCAN-MN.org. So, it's DCAN-MN.org. That's our website. We have a Facebook page and you can get all that from the website.

INTERVIEWER: OK. Dr. Zook, I wish I had more time with you. It sounds very, very interesting.

PATRICK ZOOK: Well, let's do some more programs in the future.

INTERVIEWER: We'll have to do that. I appreciate your time. Thank you.

PATRICK ZOOK: You bet.

INTERVIEWER: Dr. Pat Zook is President of the Central Minnesota Dementia Community Action Network.