Best Dementia Resource – The Dementia Society of America

Hi, I’m Jim Cuddy and this is Ask the Hearing Doctors, and I’m joined today by Dr. Ana Anzola, doctor of audiology and principal of Hearing Doctors, the Washington, D. C. area’s highest rated audiology practice with over 2,500 5-star reviews. Also joining us today via Zoom is Kevin Jameson, who is founder, volunteer president, and chairman of the Dementia Society of America. Anna, Kevin, thank you so much for joining us.

Thank you.

Kevin, this Dementia Society of America, you started this from a very personal standpoint. Can you tell us that story, please?

Sure, absolutely. We’ve been in existence ten years. But really, the story begins more than 20 years ago when my wife and I were having marital difficulties. I mean, quite frankly, we were going to a marriage counselor at one point and the marriage counselor had pulled me aside and said, “You know, Kevin, I think the two of you love each other, but there’s something else going on and I can’t put my finger on it, so just be aware of that,” and I’m like, okay, and I had experienced and seen a lot of personality changes in my wife Ginny. She wasn’t her normal, bubbly self, and she had become caustic, and she had become really difficult to deal with, and I just didn’t know what was happening. One day, one evening, we go out to dinner to a restaurant we’d been to and as we walked in, I said hello to the hostess by name. She had a different name. It was an interesting name, and we sat down, and my wife said, “How did you know her?” and I said, “Well, I don’t really know her.” But I said, “I remember her from last time we were here. And she had an interesting name, a different name,” and Ginny looked at me and said, “I’ve never been here before,” and I’m like, “Well, sure, we were here last month. I can tell you where we sat, what we ate, and this is not a new place for us,” and she was insistent that she had never been to the restaurant before, and finally she said, “You must have been here with another woman,” and I was just totally shocked and thought, “Okay, this is a whole another level.” This is not just about personality change. This is not just about caustic relationship. This is something else beyond that, and I didn’t know really what it was beyond that, but I just knew that it wasn’t normal, and so I went through the typical things at first trying to explain that we’d been there, showing her credit card receipts, and she was still absolutely positive she’d never been to that restaurant before, and then over time, more little things were happening that I felt like these are all kind of connected to some type of cognitive challenges she’s experiencing, and I finally mentioned it to the doctor that we shared, her primary care physician, and I said, “Hey Doc, this is what’s going on,” and he heard me, but she was still young enough where he was like, “Well, I’ll talk with her,” and he basically was in as much denial as she was about it, and I so I started to make notes, and I started to write down the incidents as they happened and ultimately, even a neighbor came up to me one day and said, “Kevin, I just had a conversation with Ginny, and I couldn’t understand a word she said. It was all garbled.” I was like, okay, that’s it, and so I went back and I pleaded with the doctor that she needs to see a specialist, so it became kind of the traditional steps involved. She went to a psychiatrist and then to a local neurologist and then from the local neurologist, he basically said, “I’m kind of out of tools and I’m a generalist, and you need to go to a cognitive neurology group,” so we ended up at a university setting and legitimately several years later ended up with a diagnosis that Ginny had progressive dementia and at the time, this was 20 years ago, they couldn’t pin it on one specific cause. Maybe there was a likelihood of Alzheimer’s, maybe it was something else, but at the end of the day, it didn’t really matter. What mattered at that point was getting her the kind of care and care planning that was important, and so over the years, we immediately started to travel and really pack a lot into life, and eventually she needed care at home, then she needed live-in care at home, which I built an apartment in the house, and then ultimately, she needed to be in a dementia care community, then a skilled nursing facility, and then hospice, and so at the end of her life, I decided I was old enough I could retire. I was 55 and I retired and cared for her through her hospice until she died, but in that process looked around and said, ”I’ve learned a lot.” I didn’t know what dementia was coming into this. My grandparents had senility so to speak, but what’s that and I know that people are out there, they’re drinking water from a firehose, and how can we give them information that’s credible, accurate, and helpful? And I looked around for the dementia society, and there was one, but it was called something else. It wasn’t really the dementia society. It was an Alzheimer’s organization, and I thought, well, is it really right to focus on the underlying disease? Or is it more better to focus on the umbrella and the syndrome of dementia? Because that’s what we’re dealing with as humans, and we can’t get in there and noodle around in the brain tissue, but we can do things that are helpful for our brain health, and we can also do things that are helpful from a care planning standpoint once there is cognitive impairment. And so because the actual dementia society didn’t exist, I wanted to start that and that was kind of the genesis for the Dementia Society. I looked around and said, “Well, there are some big organizations out there, but I think I can do something different and I think I can do something that meets people where they are.” So, that’s really the start and we got a few friends together, had a kickoff dinner, and Ginny was still alive at the time and in fact, from the hotel where we had our kickoff dinner, we could see her room at the nursing home, and it was very poignant because it was a lot of our friends who’d come together who knew Ginny and we wanted to try to make a difference, and so in that respect, it was a launching pad for a lot of change, and we’ve had that change. I mean, in the ten years that have passed, we’re reaching millions of people today across the country with our message of not only what dementia is and isn’t because that’s a big message but also how to live the best life possible despite dementia and with dementia, so that’s kind of how the organization started and where we are today.

You had mentioned what dementia is and what it’s not. I want to ask you about that in a moment, but what does the Dementia Society of America, what kind of things do you do now? Are you out there kind of getting the word out for people? Tell us a little bit about what the society does.

We really have three main kind of mission points. The first and biggest part of what we do is awareness and education, so we’re out there teaching people accurate ways to look at dementia, talk about dementia, care, planning about dementia, so it’s all about awareness and education. The second part of our mission is to support and provide non-medical life enrichment programs to people who are living with dementia and their care partners, all based on the four different modalities music, art, movement, and touch, and we do that through nonprofit partners across the country. Nursing homes, senior centers, it really depends on where it is and what it is, and then the third area is an investment into recognition of caregivers, innovators, and researchers and so in that regard, we send out certificates of appreciation to caregivers. We recognize innovators who are doing interesting things in either products or apps or services, and then we do put money into basic research across the spectrum of dementias, Alzheimer’s, Lewy body, vascular, frontotemporal concussion, all those types of things. We are putting hard earned dollars into those research projects.

I would imagine anybody that gets involved and reads up on the Society would be able to learn a lot about just different things that may be affecting them in their own homes with a loved one and that kind of thing. What sort of cognitive functions, day to day cognitive functions, should people be aware of to perhaps say, “Hey, you know what? Maybe we need to go see a specialist of some sort.”

So, we have a booklet out there and it’s a great question. We have a booklet out there called The Big Umbrella, and you can get it. There’s an e-version of it. We’ll send you a printed copy of it, however you want to get it, but the center spread of that 16-page booklet are called the 22 Clues and those 22 clues, it’s well beyond the ten signs of Alzheimer’s, right? We’ve all seen the infographic that says “The Ten Signs of Alzheimer’s,” but there’s so much more that’s going on as potential clues that’s outside the realm of Alzheimer’s because of all the other causes of dementia, so we put this together, 22 Clues, and it’s everything from word finding, stability on your feet, changes in your mood or behavior, hallucinations, not eating properly, not taking care of your hygiene. There are all these clues that people can look at and say, he or she or myself have been doing this or he or she or myself have been doing that. Most of the things are going to come through observation because sometimes there’s a lack of self-awareness on the part of the person living with the cognitive impairment, so it’s going to be the family, the friends, the neighbors that are going to see these things, so they can look at the 22 Clues and it may prompt them to say, “You know what? It’s time to get a checkup from the neck up.”

Speaking of from the neck up, we know studies show that hearing loss can certainly add to cognitive issues, dementia, and things like that. Here at Hearing Doctors, Ana, tell us about some of the things that you see because you’re testing with Cognivue. What are some of the things that you see that say, “Hey, wait a minute, maybe you need to go see a neurologist”?

Yeah, it starts with that. The first thing that we do, not only with new patients, but patients that have been with us here at Hearing Doctors, is really assessing their listening needs or assessments and then also complement that with the hearing portion of it, so now we have a clear picture how they’re processing and hearing at the same time and then taking action or making proper recommendation or given a referral back to their primary care physician or neurologist because there are so many symptoms that go hand in hand, so we want to know and pinpoint for the best outcome out there whether it’s with the use of corrected devices and such, but I think it’s important to also listen, and we invite the caregivers to come in and just give us a lot more information because they really have a really great pulse on what’s going on with their loved ones.
That’s true.

Kevin, you mentioned before, and I want to touch on it now, and I think it would be really important to help our listeners understand what dementia is and what it is not.

On the big umbrella, because it does cover a variety of aspects of our cognitive health, but the first thing that we always want to mention is that dementia is not a disease and should never really be called a disease, and unfortunately, people do call it a disease, but when they do call it a disease, they’re typically equating it with Alzheimer’s disease. And unfortunately, that’s something that should not be done. I’m going to say it that way. I mean, we know we take shortcuts in life to put handles on things, but at the end of the day, we don’t want to label everything as Alzheimer’s disease and thus, everything that’s dementia is Alzheimer’s because it leaves out many other causes. So, the first thing to know is, number one, dementia is not a disease. Well, if it isn’t a disease, what is it? It’s a syndrome and the World Health Organization really gives us that structure. It’s a syndrome, and as a syndrome, that basically means that there are one or more diseases or disorders that cause the syndrome and typically a syndrome has no meaningful cure or therapeutic treatment. There’s no reversal, there’s no fixing it, so to speak. You’re not going to go into remission, as an example, and so once people understand that dementia is a set of cognitive impairments that are severe enough to affect your daily activities of living, so dressing, bathing, eating, transferring, toileting, and so forth. Once they become severe enough that one or more of those is affected, plus it is progressive, meaning it starts here but gets worse, that can be defined as a dementia. So, when we say somebody has dementia, it really means they have severe cognitive impairment, and the doctors and the people doing the diagnostic workup have determined that it is a progressive condition not to be reversed, and it differs from minor cognitive impairment, which is not affecting your activities of daily living significantly and may not be progressive but may just be status quo.

And there are many types of dementia. I think it’s in the hundreds, correct?

Well, certainly if you get into the subtypes of subtypes of subtypes, you get into many, many types, but the big four would be Alzheimer’s disease, vascular dementia, Lewy body dementia, and frontotemporal dementia. We kind of all know some people, or maybe some people with one of those. A lot of times, people will say, “Well, what’s Lewy body?” Because that’s right up there in terms of people’s awareness because of Robin Williams. Robin Williams was eventually diagnosed with Lewy body. Bruce Willis recently diagnosed with frontotemporal dementia. Ronald Reagan diagnosed with Alzheimer’s disease. B. Smith, a black entrepreneur, fairly famous woman who was relatively young, developed young onset Alzheimer’s, and vascular dementia is probably as prevalent as any because it’s all related to our cardiovascular health.

What are some things that people can do to perhaps minimize the risk of developing dementia?

So, we actually have a program that’s called the Cognitive Action Plan: Ten Building Blocks to Better Brain Health. Some of them are kind of straightforward exercise. Nutritional, we are what we eat, right? But one of them is hearing health, and if you just think about the connection, the finger study out of Europe is one of the more famous ones that has come out about the value of hearing loss and how it plays a role in cognitive impairment. Then the first thing to know is that if you can’t hear it, you can’t remember it, so if there’s an inability to hear it, forget about your cognitive challenges. If you just cannot hear something, you’re not going to necessarily remember it because you never heard it, so that’s one big kind of chunk of issues revolving around hearing loss. If we’re at a dinner party and there’s a lot of noise and somebody says something and it’s about a particular actor or something, I may go five or ten minutes and go like, “I’m sorry, but you were talking about who?” and it’s not a memory loss issue. I just never heard the actor’s name. The second part of how hearing loss potentially impacts cognition is that especially with things like tinnitus and other types of conditions, the brain is trying to kind of capture the signal from the noise, if you know what I mean. So, when words are spoken or sounds are made, you’re trying to decipher the signal from the background noise. Well, that creates a huge cognitive load on the brain because you’re trying to squeak out what are the words, what are the sounds, and some of the thinking around this is that because you’re so cognitively focused on doing that hard work of separating the wheat from the chaff, so to speak, that your brain is not able to do the other functions that it needs to do, which are memory functions, executive skills, and so forth, decision making and so forth, so it’s kind of a use it or lose it. So the less we use our brains because they’re focused on doing another activity, right, the attention is going toward picking up on the and improving on our hearing. The less we’re working with, the more basic long-term cognitive aspects, which are our mobility, our executive function, our mood, our behavior, our personality, these are all things that can be negatively affected and lastly, I’ll make mention that isolation plays a role and social isolation occurs. When you can’t hear well, you tend to withdraw from a conversation, so you’re not getting that cognitive stimulation of a back and forth because you’re self- isolating, maybe subconsciously too to say, “I’m not going to engage in that conversation because I can’t hear it well, so I’m just going to sit back a little bit,” and then that withdrawal compounds the cognitive challenges.

Is that overload that we talk about the cognitive overload is too difficult for somebody to distinguish or discriminate words in the presence of background noise and it’s so easy to just say “I can’t do this, so I’m just going to sit back and not engage.” It was too difficult, I got it wrong, and then it can also lead, unfortunately, to depression, so then you have a hearing loss or masking. The mild cognitive decline is being masked maybe by the hearing loss, or they could live side by side. It goes untreated and then we have isolation and then perhaps even depression, so it’s too much for the brain and as the brain, like you were saying, if you don’t use it, you tend to lose it, it starts to shrink. It just doesn’t have the power to really decipher and decode accordingly.

So, this ends up being a snowball effect potentially?

Yeah, it’s a snowball waterfall effect. I mean, at the end of the day, if you were going into a farmer’s field and a tractor was to go down the middle of the field and press all of the cornrows down, do that enough and you’ve got tracks and you can follow the tracks and you can do it year after year after year, but pretty soon if that farmer stops going down those tracks, the weeds start to grow back, the soil starts to amend itself into, and all of a sudden it’s tougher to figure out where to go in that cornfield, right? You can’t get from point A to point B as you once did so that’s that use it or lose it aspect. We also talk about protecting one’s head, wearing a helmet, wearing earplugs. These are things that you can physically do that are going to protect your cabeza, right? Your head, you want to have the physical parts of your head protected, so it’s not just kind of the cognitive function that we can’t put our finger on necessarily but the hardening of protection around our heads that’s also very important.

Right, and some of that hearing loss can be 30% can be preventable by wearing noise protection and that’s important to talk about in mention.

And Kevin, how do you suggest starting a conversation about dementia with a loved one?

Yeah, well, let’s put it this way. It’s never easy. It’s never easy and we have to come to grips with that fact before we can really go further because if we think it’s going to be easy and therefore then we’re in for a world of hurt, if we think it’s going to be too hard then we might not even try, so let’s just come to grips with the fact that it’s going to be a difficult conversation and get as many outsiders like trusted a circle of trust if you will, whether it be a doctor, an attorney, an accountant, somebody in their faith. If they’re in a faith based organization, who does that person trust the most that can deliver a message of “Hey, I’ve noticed that you’re having a challenge here potentially. Can we talk about ways of getting you some help because you may not realize it, but I do and maybe a few others do, too.”? It sometimes comes down to we’re taking the car, we’re selling the car because you’re not able to drive anymore and that causes such a ruckus. But people oftentimes, unfortunately, with some forms of dementia, there is an express lack of self-awareness. There are some dementias where people are very aware of their losses, cognitive losses, but the very nature that we can’t remember short-term things means that we don’t notice that we’ve not remembered short-term things, so that self-awareness of that I said something just five minutes ago, isn’t there. I mean, if it was there, I wouldn’t say it again, so that lack of self-awareness is when you need to pull in pillars of trust to help deliver some messages whether it be the doctor or the others that I mentioned.

Let me just add I think I’m going to add one more doctor to that, the doctor of audiology.

Well, I already said that I would include doctors of audiology.

Absolutely, and I think it’s important and this is exactly why conducting just screening above and beyond the actual detection of did you hear that beep? Were you able to repeat that word? It’s really getting to the root of it and finding out, do you even have a mild cognitive decline that we need to talk about so promoting better hearing health early on, so I would recommend it’s not me, it’s the associations saying get a hearing exam as early as 50 if not, if there’s a concern, obviously we’ll do it sooner. But I think it’s just detecting it early and treating it will lead to much better quality of life.

Yeah, I mean there are a lot of things that we can do, too. Going back to your question, Jim, about what we can do, so we talked about nutrition, we talked about exercise, we talked about hearing health, protecting your head, being social with other people. There are some very famous people out there that have said the number one requisite for great brain health is curiosity. If we can stay curious as a human being, that drives a lot of change. Recently, I heard a great quote, “Think about the last time you did something for the first time.”

And we might be here a while.

I love that, right? I’m hanging my hat on that quote because that is so true, right? When’s the last time did you ever try Indian food? Did you ever go to India? Have you ever been on a Ferris wheel? Have you ever walked into the Pacific Ocean? What have you done that is new for you and be curious about doing new and different novel things in your life? And it’s not to say we’re going to reverse the pathology that somebody might already have, but the idea is to live the best life possible despite what you have.

I feel like that could be a daily mantra. Just try something new every day. Keep your brain working. Keep your brain interested in something new.

And improving communication and staying connected because that’s really the key. What’s going to make us have a conversation and be curious about whatever it is, it’s really being able to process that information, staying connected, learning from you, and vice versa.

No, absolutely. It’s good stuff and I just appreciate that as a doctor of audiology. What you’re bringing to the table is something you’re kind of coming at it at right angles. Most people would be coming to you potentially just for hearing aids or other types of hearing devices, but at the end of the day, you’re coming at it and you’re almost maybe surprising some of the people when you put them in front of a screening tool and say, “Would you mind doing this for five minutes?” and they’re like, “Well, wait a minute, I’m here for a hearing test. What are you doing to me?”

Right.

And you can use that line with them and say, “Well, listen, this is something new. It’s different. It’s all tied into brain health and we’re trying to create baselines here so that we can help you long term,” and I think it’s fantastic, so keep doing it.

Yeah, thank you so much and I think that that’s exactly the driver. You know, people want to be curious about what else can I do to keep myself in great shape, and I think they really do appreciate it.

For me today, and I’m not trying to be flippant or anything, but this was new. I learned about the Dementia Society of America. I think it would be important for others to learn more about it. Tell us a little bit about what people can do to get involved?

Yeah, I’m a volunteer. I’m a full time volunteer. I’m unpaid, have been since the beginning and I love it that way, and all of our leadership team is volunteer, so we are supported by individual donors, so we love that fact. If somebody can help us out, that’s fantastic. They can go to dementiasociety.org, and we have all the definitions on a lot of these dementias, so people can read up on that. We’ve got The Big Umbrella, which is an e-flip book that people can read online or order a hard copy version. We’ve got lots of information about caregiving and care planning, so the website is really fantastic, but they can also request a package of free dementia education information, and it’s a pretty thick packet that comes to everybody. It’s all free of charge, and we’re supported by individual donors. I mean, that’s it. Some businesses, yes, of course, but our average donation is $65, so we don’t have any government money coming into us. We have no grants from any major funding organizations. We’re a grassroots awareness organization talking to the masses and it really works, and I love doing it, so I’d love for more people to come to us and learn more about dementia and any way that we can help them, that’s serving our mission.

It is a tremendous mission and, Kevin, we can’t thank you enough for joining us today. Dr. Ana Anzola, Kevin Jameson, the Dementia Society of America. Thank you both and best of luck to you and your future endeavors.

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