Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and author of the book Health Literacy from A to Z: Practical Ways to Communicate Your Health Message. I also produce and host this podcast series, Health Literacy Out Loud.
Today, I’m talking to Katrien Goethals, who is a Partner at the Institute for the Advancement of Health and Wellbeing: Dementia and Alzheimer’s.
She lectures on dementia, facilitates groups for caregivers and moderates a podcast that is part of a larger project to examine Alzheimer’s and dementia from a public policy, public relations and advocacy perspective.
In all this work, Katrien brings her perspective as a family member and caregiver and her world view from growing up in Belgium.
Welcome to Health Literacy Out Loud.
Katrien Goethals: Good morning, Helen. Thank you for having me.
Helen Osborne: Your focus is on dementia. That’s an issue, certainly, that has touched our lives and the lives of so many people we know and love these days.
For our listeners everywhere, can you put this into context? What is dementia? I know there are two terms. There’s dementia and Alzheimer’s. There are all kinds of dementias. Let’s start at the beginning. What is dementia?
Katrien Goethals: Just like you said, there is a lot of mix-up on the terms dementia and Alzheimer’s. Dementia is basically the umbrella term that we use for illnesses such as Alzheimer’s, frontotemporal dementia and vascular dementia. There are many other kinds.
Dementia is a decline in mental functioning and cognitive impairment. Alzheimer’s happens to make up 60% to 80% of all the dementias.
Helen Osborne: Do they present in different ways? They might have different origins and different reasons for why it’s happening. If you meet with somebody who has a dementia of any sort, will it all appear the same?
Katrien Goethals: No, actually, it doesn’t, especially when we look at typical Alzheimer’s and when we look at Lewy body dementia, for example. The physical issues that happen to somebody with a Lewy body dementia will be totally different from somebody with a typical Alzheimer’s disease.
What I should also point out is that sometimes even at a particular point in time, there will be two different kinds of dementias present. My mom, for example, was diagnosed at 59 with a frontotemporal dementia, and then at 64, Alzheimer’s disease was added to that.
Helen Osborne: Oh my goodness. Thank you for explaining that, and thank you for sharing about your mom, too. You said she was 59. I think when people sometimes think of dementia, they think of someone who’s in their much later years. At least from my perspective, 59 is not very old these days.
Katrien Goethals: No. That is a big misconception that is out there. A lot of people still think that dementia and Alzheimer’s only happen to people that are old, whereas in this country alone, about 200,000 people under the age of 65 have been diagnosed with some kind of dementia.
Helen Osborne: Oh my goodness.
Katrien Goethals: When we get to the phase that you are younger than 65, that is what we call early-onset dementia, or young dementia.
Helen Osborne: So there are all sorts.
Now I know from the work that you’re doing you’re looking at this from the perspective of public policy, advocacy, personal, policy and all kinds of ways. You also are European in your background. Is this an issue more just in the US, or is this worldwide?
Katrien Goethals: I think it really is an issue that is worldwide.
Very often, I get the question, “Do we have the impression that there is just more dementia out there nowadays? What is going on?” Basically, what’s going on is the Baby Boomer generation.
By 2050, for example, we are predicting that the number will be around 15 million people diagnosed with Alzheimer’s in the United States, whereas now it’s around five million.
Helen Osborne: The fact that it’s Baby Boomers, it means as we are living longer, we’re just open to having more things wrong with us. This is one of those many things that can go wrong with us.
Katrien Goethals: Yes. Obviously, as you are getting older, the chances that you will be getting a dementia increase.
Helen Osborne: What I’ve heard, and maybe you can confirm this for me, is there’s really no way to prevent this. There’s this great wave coming. We get it or we don’t. There’s not yet much we can really do to keep it from coming in our lives or even deal with it when we have it, other than just managing the symptoms. Is that correct?
Katrien Goethals: You are absolutely right if you say that there’s no treatment right now. There’s no cure. The only thing that is being used is the psychopharms, so the medicines that are used to ease the symptoms like anxiety and depression that manifest themselves with people with dementia. There’s no cure. There is no treatment.
For prevention, we basically talk about the same kind of prevention as we do with other illnesses. Make sure that you exercise and eat well.
What does get added on there and what professionals do say does help is, for example, make sure that you stay socially engaged. Train your brain. Try to read a lot. Learn a new language. Get enough sleep. Take care of your mental health in general. They do say that that can reduce the risk of cognitive decline.
Helen Osborne: I’m pretty proud of that. I’m a bridge player. I’m going to keep playing bridge.
Katrien Goethals: Absolutely. You should definitely do that.
Helen Osborne: Good exercise for my brain.
This podcast isn’t all about me or you. We have a lot of listeners from the US and our continent over here, but also around the world. Our podcast listeners may be clinicians, public heath folks, health educators, librarians or teachers, everyone who really wants to communicate health information more clearly.
We have this huge amount of people who have or soon will have dementia. What can we be doing to be helpful, especially when there’s no real prevention or treatment?
Katrien Goethals: The first thing I would recommend is to improve the communication on this illness. The first level that I would look at is the family practitioners or medical professionals.
I have worked with a lot of caregivers and with some people with dementias. What I have heard a lot around me is that the problems already start in a family physician’s office.
This is not a complaint or an attack on family care physicians. They do a lot of really great work. What I hear is, for example, the access in talking about dementia is really difficult.
One way that we could maybe improve this is, for example, if we in waiting rooms would find more information on dementia, like flyers by the Alzheimer’s Association or by other organizations that provide information, so that both caregivers and people starting memory loss, for example, could find that.
It’s just like the way that we read things in the waiting room on cancer prevention, diabetes or heart disease.
Helen Osborne: In this case, denial doesn’t help. We think, “I don’t really want to talk to the doctor about the fact that I am forgetting more things these days.” Denial is not helpful. Talking about it is, and information about it is.
Katrien Goethals: Yes, absolutely. I feel that the more we start to talk about this illness and the more we start to listen to each other on this illness, the better it will be to bring dementia from this hush illness that cancer and HIV/AIDS were in the ’80s to something we can finally start to talk about.
That is a big difference that I see nowadays between the United States and Europe. In Europe, there’s been a lot of talk and campaigns. It’s really, literally, out there in your face. People are starting to wonder about it and ask questions about it.
Helen Osborne: Do you mean about all kinds of dementias?
Katrien Goethals: About all kinds of dementias, yes. Both about the old age dementias and about the early-onset dementias.
It used to be that people had no idea what a frontotemporal dementia was. Now they’re starting to say, “That particular kind starts before the age of whatever,” simply because we have been provided with information and stories, especially of people living with the disease.
Helen Osborne: Thank you for doing that. I liked the way you put it into context with where we were with HIV and all of that, how that became part of what we talk about and are familiar with.
When you talk of dementias, I recently saw a TV show on one of the other forms of dementia, and now I’m more aware of it. You’re saying the public campaign and in the provider’s office as well, just more education about it.
What other tips do you have for us?
Katrien Goethals: I would say especially get educated.
Helen Osborne: As professionals?
Katrien Goethals: Both, again, as professionals and as families dealing with this.
Very often, we hear, “We go to the family practitioner’s office and they don’t really know either. What they say is, ‘You forget things just because you’re getting older,’ or, ‘You’ve been going through a really stressful period,’” even from people who say, “I’ve been a little bit confused recently.”
In a lot of cases, they don’t pick up on these things that the people are telling them.
Again, I know it’s a very hard illness to diagnose, but if only the conversation between the people with possible illness and the medical professionals could improve, I think we would already get much farther ahead.
Helen Osborne: Thank you for that. I also have a question about it, too. There is a slippery slope of when we do get a little more forgetful and it’s not a dementia versus when it’s the path of this very serious diagnosis and disease.
Katrien Goethals: Yes, you are absolutely right. There, the family physicians have to go through their protocol. They have to go through, “Is it depression? Is it heart disease? Is it diabetes?” There are other kinds of illnesses that can trigger memory loss, so they have to go through those, and I totally understand that.
Helen Osborne: It’s better diagnosis in there and just clarifying what’s really a concern and what’s just a part of life. It’s more awareness and more education.
That sounds like some work that the providers can be doing, the clinical community. What about from the public health perspective?
Katrien Goethals: From the public health perspective, we could basically bring out more public campaigns. Bring it more in the public eye. Try to get rid of the stigma that is still surrounding this disease.
As I said, one still talks about dementia with a whisper. I think it’s because people get so confronted with their own vulnerabilities when we talk about this illness. It is a very scary illness because there is no treatment.
I feel that if we can get over that hump of saying, “There is no treatment and there is no cure,” okay, but that doesn’t change the situation. We still have that many million people out there who have been diagnosed with this illness and families who have to deal with it.
There could be more public campaigns out there, just the same way they did with HIV, certain cancers, obesity or heart disease.
Helen Osborne: Thank you for that. We covered the clinical and the public health. I know you shared your own personal family experience. Certainly it’s touching a lot of people. I know, too. All of us have that in common. We are all sometimes patients, loved ones or caregivers. What can we be doing on a more personal level?
Katrien Goethals: On a personal level, I would say stay educated. If you see people around you who are struggling with this illness, reach out to them. Ask the questions. Ask what you can do to help.
We can also do our own private reading. We can go on several websites. I’m thinking about the Alzheimer’s Association and Fisher. They really have a very informative website.
Helen Osborne: We’ll have those links on your Health Literacy Out Loud web page.
Katrien Goethals: They’re very good if you are just curious.
Also, there are communities. Communities need to start to get together. Let’s have panels in our communities between physicians, social workers, of which there is a shortage, by the way, families who are dealing with the disease and also, and more importantly, the people themselves who are living with the disease. Let’s get this communication going and learn from each other so that we can identify the needs.
Helen Osborne: It’s also exhausting.
There are a couple issues I also want to talk about. You said to reach out to somebody. I’m thinking of somebody I know and am getting more concerned about her over time.
I am clueless. How would I reach out to her about that? I don’t want to make a big deal about, “You seem to be more forgetful these days.” Give us some words. What might we say?
Katrien Goethals: If this particular person has a family member they are living with, for example, maybe you can ask questions like, “How are they feeling these days?” without really telling them, “You seem to be having some memory issues these days.” I do realize that is not exactly the way that you should approach somebody.
Very often, what happens is the families feel so alone in this. If you start a conversation, very general, asking from your heart, “How are you doing? How are you feeling? What is going on in your life?” very often they will start to share what is going on.
Helen Osborne: Thank you. Even this podcast can give people context. Now that you’re saying that, and thank you for that example, I might go back to that person just as a side conversation and say, “I just interviewed somebody about dementia. I learned so much.” Then I can open the conversation and also do more listening.
I hope our listeners can do that as well, about, “Hey, I just learned this little bit. Let’s talk about it.”
Katrien Goethals: That’s why I say let’s bring the different communities together. Let’s start to get these discussions, health providers, medical professionals, families and the people who are dealing with the illness themselves.
Helen Osborne: That’s a beautiful way to phrase that. I think that this a good place to put a pause in our conversation together, because you have so much to share from all these many perspectives.
I hope that listeners will go to your HLOL podcast page and look up those resources. Those are good ones that have great information. Use this podcast as a springboard to have those conversations. It sounds like education and communication are key in all this.
Thank you so much, Katrien, for all you are doing and for being a guest on Health Literacy Out Loud.
Katrien Goethals: Thank you so much, Helen.
Helen Osborne: As we just heard from Katrien Goethals, it is important to communicate about dementia, too. But this is a topic that’s extra hard to talk about. There’s no way to prevent or treat it. Not yet. It also carries stigma.
It’s an important message to convey. For help doing so in a health literate way, take a look at my book Health Literacy from A to Z, especially Chapter 19, where there’s much more information about issues of emotions and cognition.
Feel free to also contact me directly at firstname.lastname@example.org.
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Until next time, I’m Helen Osborne.