Giving Voice to Lived Experience in Dementia Research

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In this episode, Lauren & Matt talk to Brenda Roberts and Steven Barbieri from the National Council of Dementia Minds.

The National Council of Dementia Minds is the first national not-for profit organization founded and governed by people living with dementia. Its work focuses on education, advocacy, peer support, and changing public perception of what it means to live with dementia. 

Brenda and Steven talk about the National Council of Dementia Minds, the importance of peer support and education for people living with dementia. They focus on how better understanding the lived experiences of people living with dementia can help shape research, policy, and advocacy. 

Links of Interest

National Council of Dementia Minds

Steven A. Barbieri, Board President & Founder

Brenda Roberts, Executive Director

Transcript

Lauren Gerlach:

On this podcast, we often talk with researchers about the data, methods, policies, and interventions that are shaping the field of dementia research. But today, we're really stepping back to ask a question that's central to all of this work. To what degree does the perspective of people living with dementia shape research priorities? For dementia research to be meaningful, it should reflect the priorities and experiences of people living with dementia and their care partners. That means not only studying dementia but also listening to people living with dementia, partnering with them, and making sure that their voices shape the research agenda.

Matt Davis:

I'm Matt Davis.

Lauren Gerlach:

I'm Lauren Gerlach.

Matt Davis:

And you're listening to Minding Memory.

Lauren Gerlach:

Today, we're joined by Brenda Roberts and Steven Barbieri from the National Council of Dementia Minds. The National Council of Dementia Minds is a not-for-profit organization founded and governed by people living with dementia. Its work focuses on education, advocacy, peer support, and changing public perception of what it means to live with dementia. Brenda is the Executive Director of the National Council of Dementia Minds and has been deeply involved in building the organization and supporting its growth. Steven is the Board President and Founder of the organization. Steven is also a person living with dementia and has been active in national education, advocacy, and research efforts. They're here today to tell us about this wonderful organization. Brenda and Steven, welcome to Minding Memory. We're so glad to have you here.

Steven Barbieri:

Thank you.

Brenda Roberts:

Thrilled to be here. Thank you, Lauren.

Lauren Gerlach:

To start off, we were just hoping that we could learn a little bit more about you both. Could you tell each of us... Or could you tell us about a little bit about yourselves and how you became to be involved with the National Council of Dementia Minds?

Steven Barbieri:

My name is Steven A. Barbieri. I'm formerly from California. I presently live in Meridian, Idaho now. We moved here a few years back. I used to be a vice president district manager at Wells Fargo Bank so I was in a pretty stressful positioning managing 12 offices at that time. And then I was having some problems at work. I get off a two-hour conference call and basically the call was gone so I started taking notes to try and help with those situations but it was just getting more and more difficult. It got to the point where my wife called me to say, "Hey, the kids have a wrestling..." My son has a wrestling match after school, "Can you get over there?" And I'm like, "Can you remind me how to get to the high school?" Well, our other children had already gone to that high school so I've been going there for years. I just couldn't remember how to get to a high school I had been to for so many years and whatnot.

And it just started with things like that. I was actually diagnosed at the age of 51. I'm 65 now. I've been living strong with CTE dementia. I know a lot of people throughout their diagnosis, they have different diagnosis. Mine started out with mild cognitive impairment, which is very common that you hear at the beginning, and then it moved on to... They thought it was pseudo dementia, which is a dementia you don't hear very often, that is one that's actually reversible. When we heard about that one, that one is really based on stress, low vitamin D, magnesium, some other things. I was in a very stressful position at work so they thought if I got away from work, it would make it go away. Well, it didn't. One thing led to another. I got another diagnosis of frontal temporal lobe dementia because when they did a PET scan, they found damage on both sides of my temporal lobes. And then it went on and on. And then I did additional testing.

And finally, I got an eight-hour test with a neuropsychologist. And he says, "Steven, I'm putting my papers away. Let's just talk about you, not about the disease. Tell me what you used to do for fun, what you did for a living, da, da, da, da, da." Well, within 20 minutes he goes, "Oh, you're a perfect candidate for CTE dementia." Because I had done martial art for 45 years, hit my head on a diving board, was in a car accident. I used to compete a lot. I got kicked in the head as well as kicking other people in the head or whatnot so they really zeroed in on CTE. But when I tell people I have CTE, they're always like, "Well, they don't know for 100% because they can't properly diagnose that until you're dead." And I said, "Well, I'm not ready for the autopsy test yet." I've taken all the other tests and that's what it leans towards.

Lauren Gerlach:

Thank you so much for sharing your experience around diagnosis. I certainly know from my clinical work, talking to folks who have maybe early onset disease, how difficult receiving that diagnosis can be and how long that process can be and all of those confounding information. Thank you for sharing that and some of your journey.

Steven Barbieri:

Thank you. And just another statistic that comes from the Alzheimer's Association, they actually say less than 50% of the people who actually have dementia actually get a proper diagnosis. When you hear all these numbers out there, you actually almost need to double them for all the people that aren't getting a proper diagnosis. Or like you said, it takes a couple of years to actually get it.

Lauren Gerlach:

And Brenda, could you tell us a little bit about yourself and what drew you to this work?

Brenda Roberts:

Sure. I should have not allowed Steven to have the opportunity to go first because he does such a great job and he's a tough act to follow. But as you said, my name is Brenda Roberts and I get to be the Executive Director of National Council of Dementia Minds, which is the most amazing thing in my life. I spent my career working with older adults and folks living with dementia. It's been a 50-year career now. But my perspective changed dramatically when my husband, Mark, was diagnosed with vascular dementia and that was in 2014 at the age of 62. Steve and I have talked about some of the symptoms and having our hearing checked, he had his hearing checked, Mark had his. Looking back, I realized I'd missed a lot of the signs and symptoms. And like so many other families, we found ourselves searching for support, for resources, opportunities to connect with others who had similar experiences. And that's what resulted in the National Council of Dementia Minds, just that need for connection.

Lauren Gerlach:

And for listeners who may not be familiar with the National Council of Dementia Minds, can you describe for us what the organization is and what's its core mission?

Brenda Roberts:

The National Council of Dementia Minds, as you said, we are super proud to be the first national nonprofit organization founded and governed by people living with dementia. Our mission is to develop and support a core of Dementia Minds groups, those are groups of folks living with dementia or MCI. And those groups create opportunities for dialogue and education about strategies to live well with dementia. At our core, we have two focused things, peer support and education by people living with dementia.

Lauren Gerlach:

Can you tell us a little bit about who the organization serves and a little bit more about the Dementia Minds groups and what those entail?

Brenda Roberts:

My favorite things to talk about. We serve all folks living with dementia or mild cognitive impairment. Now, we recognize that's a long spectrum, a wide spectrum of folks. The folks who are in our groups are people who are able to recognize their symptoms or at least recognize that they're living with dementia, and so they're in typically the earlier to moderate stages of dementia. Although many of our folks, Steven can attest, stay in our groups as their condition progresses and continue to participate. That's amazing. And then we have all different kinds of dementia, it's not just Alzheimer's disease. It's all the different types of dementias. And that was something that our founding members really were big on, was this is for all dementias, not just Alzheimer's or Lewy body. The other thing that was interesting when I did some statistics recently is 50% of our members, our Dementia Minds participants, were diagnosed before the age of 65. That's interesting. As Steven said and then my husband too, that's been many years ago. And still, Steven describes himself as living strong. Many others say living well with dementia.

Our groups meet via Zoom, they are one hour long and they are facilitated by trained volunteers. And Steven can talk about the groups themselves, if you like. But they provide peer support, they figure out strategies to continue to live well with dementia, to compensate for changes that they're experiencing. And then the group goes one step further, each group also does educational events typically through the creation of a video and out doing presentations. We have a blast. We have peer support going on and peer support-peer support. And then we start to transition into where we're working on a project, we have a message, we have a script, we have a video. Then we create that working with the videographer, then we go out and present it. And people tell our folks living with dementia, "Thank you. Thank you. Thank you for sharing your lived experience with us. I've learned so much from you."

The organization itself provides a wide variety of experience from connecting with others, making friends, close relationships, to working on a meaningful project, to going out and presenting and feeling... like contributing. And I don't want to say feeling like but being a contributing member to society, helping educate about the lived experience and how to best support folks living with dementia.

Lauren Gerlach:

One of the things that really strikes me is just the variety and the wide range of different groups that you guys offer. I was hoping one of you could speak a little bit to what some of those groups are and what types of opportunities there might be there for people because I know there are numerous.

Steven Barbieri:

Well, the nice thing about that is that there is such a variety. We actually have a men's group. I'm actually in the men's group, which is today at two o'clock. We have a women's group. We have a black dementia minds group. We have an older dementia minds group. We have an LGBTQ dementia group. We have a mixed group of men and women. We have so many different groups and we're always adding new groups. And at the same time, as people progress, they sometimes have to drop out of groups. And then when we drop out of groups... Because we try and keep it to around 10, maybe 12 at the most so that it's only an hour long so everybody gets a chance to share and listen and get asked how they're doing or whatnot. As people have to drop off or life changes, then we'll add more people to their group. And as a matter of fact, on my two o'clock call today, we've lost a few gentlemen, life changes or people have progressed. We have two new gentlemen that will be joining us this afternoon.

And like Brenda was saying, each group also focuses on a type of video that they wanted to share. Our group recently did a video on sports. What things did we used to do and what do we still do? And a lot of it is around exercise because the number one medication out there is that natural oxygen rush to the brain. I go to the gym every day in the morning, get that two hour oxygen rush to my brain. Other guys in our groups play, Vinny he plays pickleball every day. Another gentleman goes swimming and he swims up to 50 laps every day. We have another gentleman that's a hiker, another gentleman that's a biker.

And we also have that phrase, "Do your age." There's a lot of us in our 50s and 40s or early 70s. We're not trying to compete with ourselves what we did in our 20s or our 30s or whatever, that's why we use the phrase, do our age. And again, we share best practices and whatnot on how to continually doing. I'll just do a quick example. I used to love playing golf but with golf, there's memory involved. I would go and play golf with some friends and three of them, I would tee off first and then three more balls would hit. And all of a sudden it's like, "Where'd my ball go?" Because I just saw four balls shooting all over the place and I was slowly finding my balls and it made some people frustrated or whatever so I had to basically stop playing golf.

Well, I talked to one of my speech therapists and we went over some techniques and I actually shared it on the call. My speech therapist that I shared with my group said, "Steven, I don't really understand golf. But do you always have to go first?" I go, "Well, no. There's a rule if you got a birdie or an eagle or a par, you go first. But no, you don't have to go first." She goes, "Have you ever thought of not watching the other three people hit their balls? You go fourth and when you hit your ball, you just grab your bag and start going to your ball so you didn't watch three other balls to get confused." I went, "That was so simple and it was a best practice." And like we said, we don't have to stop doing what we love. We just have to change how we do the things that we love. That was a best practice that I learned and I shared it with somebody else, and then everybody...

And that's a nice thing. Like Brenda said, on these calls, we're not just like, "Hey, how is your day going or whatever?" Everybody is, "I'm having a problem with this. I'm having a challenge with this. I can't remember how I take my pills." Well, I say, "Well, what I do is that when I take my pills in the morning, after I've taken them, I turn the bottle upside down." 20 minutes later, I'm like, "Did I remember to take my pills? Oh, they're upside down. I must have already taken those." Then at nighttime, I have some nighttime pills that help me sleep. The same thing and that's my process is I turn the nighttime over and then I return the morning ones straight up so that in the morning when I wake up, they're straight up. Again, sharing techniques on our calls. It's a great opportunity to share best practices.

Brenda Roberts:

Lauren, if I can too, I just have to smile and say because, Steven, I think you all have told me that care partners don't realize what a benefit it is to the care partner that their loved ones participate in a group. And because what they've shared with me is that they're sharing these strategies, I'm talking to you and we're figuring out together. My care partner isn't living with, doesn't have this experience, and so we talk about it in the groups. And one of the things in particular that lots of the groups talk about is driving. And we've all heard those just difficult, difficult stories about I had to disconnect the whatever or disable the vehicle and how hard that is. And I just have to tell you, in the groups, the folks are talking, "I haven't given up driving. When did you? How did you decide? What did you do?"

All of that is happening in their peer group as they're moving toward that decision, if and when it has to happen. And what a gift that is to their peer partners, that they have a peer group to talk that out with and come to terms with whatever the decisions are as they move along the road, so to speak.

Lauren Gerlach:

You had mentioned some the educational focus as well too, not only peer support but there are projects and missions that are near and dear to the groups. Can you talk a little bit about what some of those educational initiatives have been as well?

Brenda Roberts:

Yes. One of the things we do on a regular basis is what we call our Dementia Minds Friends and Family. Now, anybody can join us because we're always virtual, we're always on Zoom. Anybody with internet access, I guess I should say. And Dementia Minds Friends and Family is exactly what it sounds like. It's for friends, families, and professionals. And you come into a Friends and Family, we typically have a short video that we watch that introduces the topic that we're going to discuss. And then the beauty of it is we ask all questions, ask any questions. Many family members can come in who can't ask their loved one or for whatever reason, they can consult with folks living with dementia, "I think I'm seeing changes in my mom. How would you? Well, my mom is this. How might I?" They can consult with them all the time.

The professionals come in and consult with them as well. We say all questions are welcome but when you come to our educational events, there's one rule. And the rule is only people living with dementia can answer the questions because it's all too easy for the care partners or the professionals because they all have important information to share. But it's just very easy for the folks living with dementia to take the backseat then again, and so this is their opportunity for us to learn from them. And right now, we have some great resources on our website and they'll be developing more about conversation guides where they have some of those videos and you can host those conversations. There's driving in dementia, there's cognitive energy in dementia, depression, frustration. There's lots of videos that you can use for your own care partner support groups or persons living with, or you're welcome to our live events.

Steven, you've done a million of our educational events. What do you have to say about them?

Steven Barbieri:

Yeah. The care professionals are extremely surprised to hear some of the information like, "Oh my goodness, I did not recognize it." And most of the time, it's easier for me to share by a story. They were talking about eating. Why does this person just want to eat this? How come they don't want to try this meal or whatever? I reminded them, I'll ask somebody, "Well, did you ever have COVID?" And they're like, "Oh yeah. Yeah, I had COVID." And you lost your smell and your taste? And they go, "Yeah." I go, "Welcome to our world. Most of us with dementia can't smell or can't taste anymore. We taste textures." I remind them we don't eat based on flavor, we eat based on memory.

And she goes, "Well, what do you mean by that?" I had a friend that all he wanted to eat at dinnertime was peanut butter and jelly sandwiches. The care facility says, "No, we have steak. We have this and that." He goes, "I just want a peanut butter and jelly sandwich." Well, somebody sat down and asked him a question and he would tell a story about, "When I went off to camp when I was a little boy, we had these incredible peanut butter and jelly sandwiches. I really like blackberry jam and da, da, da, da, da." They were eating based on a wonderful memory, not based on taste. And then the strange thing is you could be watching a commercial and all of a sudden you'll see somebody eating a cheese sandwich and tomato soup and that will log another memory. And all of a sudden somebody says, "What do you want for dinner? I want a cheese sandwich and tomato soup." Not because of the flavor, because it triggered a memory.

I remind people, a lot of people with dementia don't eat based on flavor because we've lost our flavor and our taste. It's similar to people that can relate to it that had COVID, that we actually eat based on memory. And it's a funny thing. If my wife ever asked me a quick question, "Hey, what do you want for dinner?" It's like asking, what's your phone number? I go, "Pizza." That's a reflex because I have a great memory that I love pizza, pepperoni with mushroom, that's my go-to pizza. Anytime she asks me that quickly, that's my reflex.

Lauren Gerlach:

And then just one last thing I would ask, I know advocacy is part of your work as well too. I was hoping you could tell us a little bit on how that's grown through the organization and how advocacy is part of what National Council of Dementia Minds does.

Brenda Roberts:

I think people think about advocacy lots of time. Folks in our groups think about going to Capitol Hill and advocacy, that sort of thing. We do advocacy a little different. Our advocacy work is rooted in education and inclusion. We work to shift the conversation to was the person or are the people living with dementia included? No matter if it's for a policy, a program, research. We're really about getting the person to the table and not just getting them to the table but accommodating them when they get there. Accommodating them and then I always say, I've moved past... Lauren, I've moved past this question I used to naively ask, "Well, did you include people living with dementia in your project, in your research?" And people would say, "Yes." And I'd be like, "I've changed my question to how did you accommodate persons living with dementia to participate in your research, your project, your planning?"

And then I ask, "So what did you learn from their participation?" Is question number two. And question number three is “how did that change your trajectory where you thought you were going based on their feedback?" That gets us much closer to are we including? Are we listening to the folks? We, in terms of advocacy, don't really take positions on any particular topics or things. We are all about inclusion in education.

Steven has been a big advocate, he does a lot of education. Steven, what do you have to say about the topic?

Steven Barbieri:

Yeah. It's really important because there are so many organizations out there that's focusing on the caregiver, which is a huge important role because they have such a difficult time trying to navigate something they're not completely aware of. The nice thing is that then we take the stress away from that because we focus on the person living with the dementia. And the nice thing about that, and I think Matt said this earlier, we're actually the lived experts. We have lived experience so you're actually hearing from us ourselves. I was fortunate to actually be in a clinical trial at UCSF on a new drug. I was on that for 14 months. I was very fortunate to find out at the end of it that I was actually on the drug Xanamem for the entire time so I have an opportunity to talk about that. I have tons of friends that are in all these other clinical trials that are out there that I get to talk to and ask them how that's going with different phases.

I recently for CTE, they were looking for 10 vials of blood and they were trying to get over 1,000 people living with CTE so they could find biomarkers. I actually volunteered for that. I had to go in and give 10 vials of blood. I know a lot of us may go and get one or two. I had to lay down for a little while because again, 10 vials of blood doesn't come out very quickly or whatnot. And my biggest fear is needles, yet I've actually been in clinical trials where I've had a lower... Punctured in the back, the spinal taps and stuff. But again, I use the phrase, I never expect anybody to do something I'm not willing to do myself. I want to be a part of finding the solution and not just be a problem.

I also tell people the best time to do something is now. If somebody is thinking about something, I tell them don't wait. If you're looking about trying something new, try that new. Listen to your friend, talk to your neurologist. That's the other thing is when people are talking about the situations about their dementia, they think this or this. We try and advocate and help them when they say, "Well, the person said I had dementia." I said, "Okay. And what did they say after that?" "They really didn't." I said, "Well, that's like somebody telling you you have cancer. And the next thing should be is what type of cancer do you have so you can look at symptoms, you can look at modification to lifestyle or whatnot." It's the same thing when you get a diagnosis of dementia. Your next question should be, "And what type do you think I have?"

That's the nice thing is that we help educate people when they just came home from the doctors and they said, "I have dementia." "Well, what type did they tell?" "They said dementia." And I said, "No, that's like saying ice cream. You got to find out what flavor you got." That's the beauty of it. And then they're like, "Oh my goodness." And I said, "The secret is you write down the questions before your appointment and you just check it off if they answer the question." I had a neurologist that like an attorney went around the corner with some of the answers so I had to make sure that if she didn't answer my question, I didn't check off that thing. I'd come back and re-answer that question, "Well, what do you think could happen on X, Y, or Z?" To try and get an answer. Again, it's all about sharing best practice and advocating for ourself to help advocate for others.

Matt Davis:

One of the things that stands out about your organization is the degree to which people living with dementia are not only participants but actually help govern the institution. I'm just curious, in what ways do you think this sets the organization apart from others?

Steven Barbieri:

The nice thing about that, I always remind people I'm not the founder. I'm a founder because there was actually eight of us. I always try and remind her that I was a founder. What it was, was Brenda actually put something out on Facebook, a lot of people are on social media. And she was saying she needed some people living with dementia for a presentation or whatnot. And basically, a lot of us from all over the country actually responded to her and that's actually how it got started. There was actually eight members that actually started the National Council of Dementia Minds. I'm sad to say I'm the last person still on the board of the original people. We had a person pass away. We've had some people that have moved into long-term care. We've had people where it's just their lifestyle and their disease has progressed where it makes it a little bit more difficult so they passed the rein onto somebody else living with dementia.

We're very fortunate that Brenda is the brains behind all of this. Again, I use the phrase, we may be the players out on the field but she's the quarterback calling the plays or the coach on the sideline, running the game plan or whatnot. Brenda is really the person when somebody says, "Hey, Steven, can you do X, Y, or Z?" I said, "I think that's possible. You might want to run that past Brenda." And then Brenda is basically the gatekeeper that gets things going and controlling and everything.

But again, I think Brenda talked about something earlier. A lot of times when you hear the word dementia, the next word you hear is Alzheimer's, which is important because it is the number one. I think that you hear different statistics of between 60% to 80% of all dementia is Alzheimer's but it is not the only type of dementia. The nice thing is when ours got started, I had CTE. We had somebody with white matter disease. We had somebody with frontal temporal lobe dementia. We had somebody with Lewy body dementia. We had something with vascular dementia. We had all the different types in there because when we do get new members, they'll say, "Yeah, I've got Lewy body dementia." "Oh, we got about a dozen people with that. We can get you on a group." And they're like, "Really? I can't find anybody else that has Lewy body dementia. Nobody has ever heard about that." We're able to help connect people, especially newly diagnosed people with people with that same type of dementia, because we always just say we're all similar yet different.

Brenda Roberts:

If I can, this is point counterpoint. Because with Steven, it's so funny because when I think about the origin of Dementia Minds, well, first of all, I have to say, dementia does not equal lack of intelligence. I'm just going to say, we have some very intelligent people in our organization and serving on our board of directors. And when we came together, the eight originals, myself, I just listened and heard what they all said they needed and wanted. I wanted to empower them to be able to do it. And sometimes people say, "Oh, Brenda, she runs National Council of Dementia Minds." And I'm like, "Oh no." "Oh, Brenda, National Council of Dementia Minds runs her." Okay. Clearly, clearly, clearly, yes, I cheer from the sidelines. Yes, I try to coordinate things. But I really try to honor what the folks living with dementia say they need and want and make it happen.

And so it's totally 100% that strength-based approach. We're using the skill sets that all these amazing people have brought from their education, their careers, their life experience. And together, we just make an awesome team.

Lauren Gerlach:

Steven, if you're comfortable sharing, what do you wish clinicians, researchers, and the public better understood about what it's like to live with dementia?

Steven Barbieri:

Well, everybody thinks it's memory. They always say, "Oh, that happens to me. I forget my keys. I've done this, I've done that." But I remind them it's more than just memory. I'll use the example about COVID, about losing the smell or taste because a lot of us can't smell or taste anymore. But just to list a few other symptoms, I can't smell or taste very well, very minimal. I hear the wrong words when my wife is speaking to, I'll say the wrong words when I'm speaking to my wife, that's a very difficult conversation talking to somebody. What she says to me, I'm hearing the wrong words. I reply by saying the wrong words sometimes. I have a sleep disorder. Most people with dementia need to take a nap in the middle of the afternoon, it's like your cell phone just dying out. We just need to get that recharge so it's very common that we need to take a nap.

A lot of us have balance issues, that's why it's important to possibly about getting that bar in the shower. And then we've also talked about best practices that you don't necessarily want that bar straight because you're only reaching for one angle. Having that bar at a slight angle is actually better because depending upon how you're falling, you might be able to catch the top or the bottom if you've already started to fall. Again, we share best practice about balance issues. I also have light and noise sensitivity. Going into restaurants or going to concerts, even in church, it's a difficult thing. We make sure placed on where I sit. An example, in a restaurant, I try and sit my back against the wall so I can at least control that the noise is just in front of me.

It's very difficult for somebody with dementia to be in the middle of the room where there's noise all the way around us. It's the same thing sitting at a dinner table. You're thinking, "Oh,we're at Thanksgiving, we'll put grandma or grandpa or uncle in the middle so he can visit with every..." No, that's even more overwhelming. The best place for us is at the end of the table where we're just dealing with maybe the person across from us, the person next to us. And that's a smaller group that we have to focus on, on our conversation because we get overwhelmed by the noise. Some of us are quick to cry, others of us are quick to get to angry. We get overstimulated very easily. And a lot of us have a hard time measuring time. They'll say, "Oh, do you remember we went there yesterday?" And you're like, "Oh yeah. Yeah, we went there two months ago." "No, it was yesterday we went there." Measuring time is very difficult.

And for some of us, my type of dementia, CTE dementia, when I was first diagnosed, the movie Concussion with Will Smith came out. And I said, "Oh, this is great. It talks about CTE dementia. I'll take my wife and my three kids to this. They'll answer all the questions for it." Well, all the football players in the movie killed themselves through suicide because with CTE dementia, it's one of the number one side effects. Junior Seau, one of the top football players, he ended up killing himself. He wasn't part of that. But that's a side effect so I have to be very cautious on any medication that the first thing that says suicidal tendencies or whatever, because my disease already leans me towards that.

Again, knowing the type of dementia is extremely important just like with people... I see shadow people as part of my dementia in my room at night or whatnot. They're very vague like shadows. But people with Lewy body dementia really sees a cat, really sees two kids playing in front of them. Not that their shadows are just vivid images, they're like, "It's a real kid right there." Again, it is important to know what type of dementia you have because again, we're similar yet different at the same time.

Lauren Gerlach:

Absolutely. And what are some of the assumptions that people make that are just wrong or incomplete?

Steven Barbieri:

Well, a lot of us hate this phrase, you don't look like you have dementia. Because it's an invisible disease for a lot of them. I tell people, "Well, if you spend the whole day with me, you'll see. Or after seven o'clock, you'll see me differently or whatnot." An example, I don't have it here in front of me because we just got back from a trip when I travel, I wear the sunflower lanyard at the airports which signals an invisible disability so that they understand I need some little more assistance about boarding the plane early so I can get situated or whatnot and things like that. It's just really important that we're sharing with each other.

Brenda Roberts:

Well, Steven, I'm thinking about the discussions we've had of end stage thinking, what we call in our groups of end stage thinking when we first get our diagnosis. Can you speak to that, Steven?

Steven Barbieri:

Yeah. If you ever see a documentary or you ever heard the word dementia, you'll see an older person in a wheelchair drooling. When people think of dementia, they always think of final stage or late stage. Once again, that's the reason why people have a very difficult time getting an early diagnosis at a younger age because you'll hear that, "Oh, that happens to me all that time. You don't need to worry about that." Or people with a higher education are able to hide it better. An example, things you used to be able to do like A, now you're doing it like a C. Well, that sounds like it's average but you have dropped tremendously in your thoughts about doing X, Y, or Z. People don't notice it as well because you're still able to do some things but at a different level.

My speech therapist used the phrase with me, "Steven, you've lost your edge." And that's why it's very... Like I said, it's very difficult to really diagnose some people if they're pretty intelligent or whatnot. And like Brenda said, a lot of the people that joined... I was a vice president at a bank, we had a person that worked for the national security of the United States, the defense team, we had rocket scientists. We had intelligent people on our panel and whatnot. Again, they were able to hide it a little bit longer than most people.

Brenda Roberts:

Steven, do you think one of the misconceptions or misinformation out there too is dementia diagnosis is the end of life?

Steven Barbieri:

No, I always use the phrase, it doesn't signal “end of life”. It signals “change of life”, we just have to figure out how we can do things. And I'm still... Even though I'm going on almost 15 years, I'm still able to put processes in place to help me out. My phone goes everywhere, not because I'm addicted to my phone, my phone is my second brain. It's got all my reminders on it. When we go places and we park the car, I'll take a photo of it. And then I take about 10 steps and I turn around to see what it's going to look like going back to the car so I have got a visual, I'll take another 10 steps. And it's funny when we leave places, somebody says, "Well, where's the car parked?" I go, "It's over here." And they're like, "The guy with dementia remembers where it is." Because I use the phrase they can do auto memory or their brain automatically remembers things.

I have to do what's called forced memories, I have to help myself remember things. An example, when we go to a hotel and we check into a room. I take a picture of my room number because it's not on your key anymore. For privacy factor, when we leave the hotel, I'll go to the front desk and get a business card, especially if we're in a foreign country, different language. And my wife and I are looking around because they call us Lewis and Clark, we both get lost a little bit. I've got the business card so all I have to do is give that guy to the taxi driver. I don't have to speak the language or whatever. Again, it's a lot of these little best practices that keep us going to... Again, it's not necessarily end of life. It's just a change of life.

And I tell people all the time, I want to die with memories, not dreams so that's the reason why my best time to do something is now. I'll use an example. We have some friends that just got back from Croatia and I said, "Oh, Tracy, I really wanted to go there. How come we didn't go?" I made a phone call on Friday to a travel company, we left on Monday three days later to Croatia for two weeks. Well, that's a plan that most people take six months or a year to budget and plan. No, I plan it in one to two days a lot of our trips.

Brenda Roberts:

Steven is giving you a prime example of what both our groups are like with sharing these what he's calling to as best practices or our educational events when you come in. This is just hearing from one person living with dementia, wealth of information. Imagine what it's like when you're coming in and learning from a panel.

Steven Barbieri:

I got another funny story about you hear the word Alzheimer's. I had a friend that's from Greece so he's got a very strong accent. He pronounce it, "old timers." He said, "Steven, you don't have old timers. You're not old." I go, "No, it's not pronounced old timers. It pronounced Alzheimer's." Again, everybody's got this different perception that it's an older person's disease when in fact it's not. There's a lot of us, I call us the invisible middle, those people in their 50s to 65. Like Brenda was saying, a lot of us, if we're fortunate to get that early diagnosis. Because nowadays, when somebody gets the diagnosis, like my dad got his diagnosis when he was 84 a year before he passed away. I saw it five or six years before that. And everybody was like, "No. No. No. He can't remember all five kids' names that quickly or whatnot and stuff like that." I just went, "No, okay. Whatever." I didn't force it upon them. But yeah, a lot of times people just think of it as end stage where no, there's a lot of us in the middle that are still living our lives.

Lauren Gerlach:

I just wanted to pause one moment on language because I think words really matter in this space and it may differ from individual to individual, but what terminology do you prefer when talking about dementia and care partners? Are there phrases that you wish that people would avoid or phrases prefer that people use?

Steven Barbieri:

Phrases, like I think I said earlier, we don't like to hear the you don't look like you have it. Or the next thing is, "Oh, that happens to me all the time." That is super frustrating. Some of the phrases that are more all-inclusive is what type of brain change do you have? Another one is what type of dementia do you have? Because a lot of people accidentally use the word Alzheimer's, "Oh, what type of Alzheimer's do you have?" "I have Alzheimer's. Alzheimer's is Alzheimer's." Again, when you read things, you'll tend to hear... They'll use the word, "Oh, do you have Alzheimer's and dementia?" Well, if you have Alzheimer's, you have dementia. I do like the word... Just use the word dementia because it's all-inclusive. Again, that's our organization called Dementia Minds. It's all-inclusive, not just somebody living with Alzheimer's.

When I was first diagnosed and I got the CTE, I didn't contact the Alzheimer's Association because I didn't have Alzheimer's. Until I read that actually the Alzheimer's legal full name is the Alzheimer's Association and other related dementias, they've just shortened it over the years to just the Alzheimer's just for paperwork or whatever. But they actually are all-inclusive within that but the name sometimes gets shortened on that.

Brenda Roberts:

I want to build on what Steven said, two things. The two things I've learned, one is if the person living with dementia has a thought on their brain, let them share it and so sometimes speak first. And then I've also learned, and Steven has taught me both of these things, sometimes they need a jumpstart. And so sometimes I need to start the conversation and what Steven calls, toss me a softball. There's those two places. But in relationship to language, I made a couple of notes. I hear this all the time so I'm just going to speak on behalf of, "Please, we're living with dementia. We are not suffering. Life brings suffering but our mere existence is not suffering." How many times do we read in a newspaper article or story a person suffering with dementia? And I want to say, does Steven look like he's suffering? I don't think so.

Patient….Steven Bryan used to call people out when they called him a “patient”. He would say, "Are you a doctor? No? Are you my doctor? No? Well, then don't call me a patient. I'm a person living with dementia." The word “burden”. The word burden. I hear over and over and over, I don't want to be a burden. I don't want to be a burden. Could we switch out that word instead of the burden on Medicare and Medicaid? The burden on the care partner? Can't we just use the “impact” instead of burden? And then you mentioned caregiver, care partner. We prefer “care partner” because we see a more reciprocal relationship. But personally, I prefer when I'm out with my husband to be introduced as his wife. Why do I always have to be introduced as his care partner? It puts him in a different category or something from the get go.

And then the “D” word, the dementia. And our group was very... Our founders were very much, well, neurocognitive disorder, brain change, cognitive change, cognitive impairment, but decided to go with the term “dementia” because it's the word out there most known to people. However, don't say you're demented. Okay? That's the big no. And then even “wander”. People say, "Oh, they wander off. They wander." Well, wandering is nowhere in my... I'm just going. I'm just going. Well, there's probably intention to why they are walking, whether it's anxiety, nervous energy, need to exercise, looking for something. It's really not wandering. Those are just some of the terms. And I thank you for asking that question because language is so important and those are just a few that are very important.

Matt Davis:

Stigma often comes up around dementia, and I mean stigma related to diagnosis, symptoms, independence. I'm just curious, do you see people talking about stigma showing up in some of the discussion groups and the conversations related to your group?

Brenda Roberts:

Stigma is all over the place, they talk about it in all the groups all the time. It's why when Mark was diagnosed, my husband with dementia, we're in a small community, a small church, it's why when we came out and said we had dementia, we didn't know that there were six other people in our church who were living with dementia. It's because nobody wants to be treated differently. As soon as you share that diagnosis, and Steven, you can share how you share your diagnosis even, but the minute you share your diagnosis, people start looking at you differently. In fact, just the most recent conversation with one of our newest Dementia Minds people, as soon as the dementia diagnosis was given, the doctor immediately shift and started talking to the daughter. Well, the change doesn't happen that fast, folks.

And so stigma is just in the tragedy narrative, it's just so heavy. It's so much a part of it, you can't separate the stigma. I have one lady, for example, she was recently diagnosed. She lives in a large senior living care community and she has just been diagnosed with dementia. She doesn't want to share it because her husband has been living with and she sees how he's treated differently, and she doesn't want to be treated like that. Now I'll get you on my bandwagon, we presume the minute somebody gets a dementia diagnosis that they're not capable, they're not competent. And that has to change.

Steven, do you have anything? Stigma is just too hard to pull it all out of the weeds.

Steven Barbieri:

I'll use an example. When I was first diagnosed and then I kept it to myself, a little bit embarrassed because some people made me feel embarrassed about it, family members. Not close family members but some of my family made me feel bad about it like I was weak that I couldn't control it or whatnot. When I started telling some close friends, I didn't do it over the phone, I'd ask them out to lunch one-on-one or maybe two if they're close, the three of us were really close. I would never start the conversation with that. We'd visit for two or three hours having lunch, catching up, going over different things. And then maybe towards the very end but not at the very, very end so that we saw a time to talk, I would say, "Well, another reason I invited you out to lunch because I consider a very close friend and I wanted to share something with you." And then of course, their eyes are like somebody is dying or cancer, whatever.

I just wanted to share that I had dementia. And they're like, "Oh, really?" And then I started explaining to it because now I know for those last 10 minutes of our luncheon conversation, like Brenda said, they're looking for it. Had I started it at the very beginning of our lunch, the lunch wouldn't have lasted two hours catching up on different things. They would have just been listening and watching and seeing to try and catch things or whatnot. I wanted them to see me still as Steven as their friend and then at the end explain some of it. And I would try and answer any questions that they have.

And the best thing that I would always ask them is, "Well, do you have a relative or another friend that is living with some type of dementia?" "Well, now that you mentioned, my grandmother has it and this and that and whatnot and stuff like that." That was nice and we could have a different conversation. I said, "Well, I'm in an early stage. It's like with cancer. You can get stage one, two, three. There's different books you read but typically you hear about five or seven stages of dementia. I'm around stage three." And we talk a little bit more.

But yeah, when I first told people, I told them face to face. And now when Tracy and I, we started a new Bible group at our church. And in the first week I told her, I said, "Honey, I don't want to drop the dementia card for a couple of weeks." And she says, "Why is that?" I said, "They're going to look at me differently, they're going to listen to me differently, and they're probably going to talk to you more than they're going to talk to me. Let me be Steven until I feel comfortable enough then to say that." And like Brenda was saying when she goes out, I want my spouse. I want Tracy to be my wife as long as possible. There's going to come a time when something is going to happen and we're going to have to maybe hire an outside caregiver or whatnot. But in the meantime, I want my wife to be my wife for as long as possible.

Lauren Gerlach:

So a lot of dementia research and policy focuses on prevention, diagnosis, and treatment, which are obviously very important. But your organization also emphasizes living well after diagnosis. And what does living well with dementia mean to each of you?

Brenda Roberts:

Living well with dementia is so much more than managing symptoms. For us, it's opportunities to connect, be contributing members to society, have experiences, persons, purpose, belonging, joy, all the elements that life has to offer. Now, I want to say Dementia Minds and living well with dementia does not mean pretending dementia is easy or ignoring the challenges that come with cognitive change. I think we've all said this is the hand we have been dealt in life, and so we can be sad about it or we can say we are going to make the best life possible. It means, as Steven says, it's not the end of a person's story. People living with dementia continue to learn, that is one of the big myths. They continue to learn. They continue to teach. They continue to contribute, make decisions, build relationships, new friendships, advocate, work, and live meaningful lives. It is way beyond just managing symptoms.

Steven, what do you think?

Steven Barbieri:

Yeah. I always remind people that quality of life is still extremely important to us, that we still want to have a quality of life. Like I tell people, I try and count my blessings, not my challenges. I try and choose joy. It's very easy to get down or whatnot. And I'll be honest, I have those bad days maybe once, twice a month. But at the same time, I tell my wife, it was a bad day. I'll spend most of the time in bed. I probably won't even eat, just some water or whatnot. But I say, I wake up the next morning and God gave me a brand new day. I can't complain that I lost one or two days out of 30 where I still had quality of life for those other 29 days. Yeah, maybe it'll get closer to 14 and 14 or 15 and 15 or whatever but two bad days a month so far for me is not that bad.

And we've learned different things. It's important for me to go to the gym in the morning, get that natural oxygen rush to the brain to get things started. It's also very important for me to get a nap in the middle of the afternoon to try and be able to rest. The other thing is that a lot of people with dementia end up with having a sweet tooth and my problem was I had a sweet tooth to begin with so now I have a super sweet tooth. People with dementia, you just have to keep an eye on us that a lot of times the first thing we reach for when we're hungry is a candy bar or a pastry in the morning. You're looking for something sweet. My wife understands that so at one point she tried to eliminate everything, which you can't stop cold turkey.

I'm allowed to have a soda if it's just at dinner for certain things like pizza or Mexican food where it's like you have to have a glass of milk when you have chocolate or cookies or whatever, I have to have that soda when I have Mexican food or pizza. And then when it comes to candy, she realized if she totally cut me off, I was sneaking candy and eating three or four candy bars a day so she bought the Costco Halloween package. They've got the Halloween candies, the little ones, and she'll put two or three of them next to the couch when I'm watching TV so that, oh, I got to have my one or two versus having none. She tries to control that at the same time by, again, adjusting. It's something I enjoy. I go to the gym, I also eat healthy at the same time, but I still need that little bit of sugar but I still need somebody to keep an eye on it.

Matt Davis:

A lot of our listeners are researchers. And many of us that conduct research on dementia have very little direct and lived experience. I'm curious, from the perspective of people living with dementia, what questions should researchers be asking more often?

Brenda Roberts:

I'll share first just some things that I've heard when we had specific conversations about what folks living with dementia wanted researchers to know. And so their recommendations are they want to be true partners in research, they want to change that where you're the subject matter experts or what... You're the researchers and they're the subjects. They're really into if we can build a relationship through this. And I'm not just talking... They're not talking just at the end of the research as they're the subject, you're building...

But from the get go, what questions should I ask? You should be asking us living with dementia, what questions you should ask as you're planning the research. What needs researching? Should be asking the folks living with dementia, what's important to you? What areas do we need to be researching? Just totally flip-flop that whole I'm not a subject. And I know a lot of researchers, I hear the folks living with dementia, they're told you're not a reliable subject because you're living with cognitive change. We're saying, let's totally flip that on its ear. Let's be co-researchers together, co-designers and have a real relationship and a real connection.

Steven, do you have thoughts?

Steven Barbieri:

Yes. Again, when they're going through the research, one of the questions is the research that we're doing, how can we help with your quality of life? That's one of the big things I always say. Someone says, "Oh, I want to live be 100." I go, "How? In a bed where you can't talk or speak or whatever?" That's not quality of life. It's all about quality of life. When they do the research, they should be asking, how can we improve somebody living with dementia, improve their quality of life?

The other thing is we're lived experiences, we have the answers. I always use this as an example. If I was a woman and I was pregnant and I have my choice between two doctors, I have a male doctor that's written five books or whatever or I've got another doctor where she personally has had five kids. She understands morning sickness. She understands epidurals. She understands. The doctor just read it or provided the information, they don't have a lived experience. If I was to choose a doctor, I would choose the woman doctor who's had five kids that's truly lived that.

I use that same thing. You're going through all this research and you get a research partner, this and that. Where was the person who's living with dementia, where was their part involved in this research? They'll say, "Oh, we presented the research to them afterwards." Well, that's after the fact. You should have gotten us involved in the very beginning. And I say that to also organizations out there. I have to really just give a little kudos to the Alzheimer's Association in California, some of the other states. I was actually on the board for the Alzheimer's Association in California. But in a lot of other states, there are not people on the board. I was on the board in California for the California elders group and I was on there because dementia was one of the things. They actually had people living with dementia on the board. Again, you need to have us involved from the very get go so that we're co-facilitators, we're co-presenters, we're co-researchers.

Brenda Roberts:

Another piece of information from conversations about research that I've heard folks talking about is, for example, if you have to go someplace to participate in research, that the researchers need to be aware of how much cognitive energy it took for me to get dressed, to get there, to either drive there or be driven there. And then I need a greeter at the door to directly walk me to where I'm going because all that cognitive energy I'm using to find my way around the building and then I'm sitting in the waiting room and waiting. And then now you want me to participate into some discussion or some test and I've already spent all my cognitive energy is what they've shared with me. Another interesting tidbit that they shared about with research is if there are environments where there can be other people living with dementia with them. Even if they're in the waiting room at the same time, they talked about just having cohorts of people living with dementia and similar ones where relationships can be formed during that research project.

Matt Davis:

Some of your comments regarding participation in research at the get go was music to my ears because we have another center here at Michigan. It's called MEL-STaR that trains new researchers. And our new researchers that come into the program are required to have a person living with the health conditions they're studying as part of their mentorship team. And it's been so cool. It's just remarkable the influence these folks have had on the mentorship teams. And when we started it, people didn't quite know what to make of it but it's become like an integral part of the program. It's really [inaudible 00:57:33]

Brenda Roberts:

That's awesome. If you ever need any folks living with dementia for mentors, let us know.

Matt Davis:

I'll make a note.

Lauren Gerlach:

And maybe just to say maybe what's next for the National Council of Dementia Minds? What are the things that you guys are currently working on? Obviously, the organization has been built so much and evolved over the years. What's next on your agenda?

Brenda Roberts:

Well, we're going to continue to build groups. We're going to continue to do education. We're continuing to recruit volunteers to help facilitate groups. But just a couple of new things that are around the corner that are super exciting. Since we did a needs analysis a couple of years ago, folks living with dementia, we were co-researchers and wrote the report together and we talked about what folks living with dementia need from the moment of diagnosis to one year out. And many of the people talked about when they were working when they got their diagnosis and they were trying to maneuver, they were really... many people were pushed out of the workplace.

Now, I can totally relate to this and Steven can, we both. My husband was of working age, Steven was of working age. And so we are developing this absolutely, I'm going to... We're so proud. It's going to be this really robust on our website about how do I disclose my... When do I disclose? How do I disclose? Am I eligible for ADA, Americans Disability Act, for reasonable accommodations? Does this mean I can't work at all or is there some work that I could do? And so there's that whole take a breath, slow down and look at some of those sorts of decisions.

And then we're transitioning there from if you choose to leave the workplace, then what are your employer's benefits and maximizing those benefits? Because dementia is one of the most expensive diseases or conditions to live with throughout your life, and so we need to access all of those resources and benefits early on. We're looking at maximizing my employer benefits, my private benefits, and then how to apply for the social security disability. Many of our folks who've come-in in their late 40s, early 50s said, "I never thought of myself as disabled. I never thought of dementia as a disability." And so we have lots of people who continue to work after their diagnosis, some in their former positions and others in different jobs. If you can't stay in your job, we want to maximize the benefits as you transition away. We're going to have that great resource.

We also have a group of doctors who are living with dementia, all former physicians, and this is going to be an awesome resource that'll be available later this year. And they have created... Because they all had a hard time getting a dementia diagnosis, they've created what they consider a symptom checklist that will guide a physician in making that determination. There are 41 symptoms on this checklist, each symptom has a hyperlink to it where you can click and you will see a person living with dementia who describes what that symptom was for them. There will be a variety of ages, a variety of faces, and different types of dementia. We're hoping the users will right away see people who "don't look like they have dementia" that they can see their own face and they get the symptom explained to them.

We're working with a university right now who is creating that to be a web-based form that will then pull out your symptoms that you've checked and you will get a reduced list that you can then take to your doctor and begin your conversation. And we've piloted this and it's been an amazing thing. It was originally designed by the doctors to drive a dementia diagnosis but some people are using it as a symptom tracker as symptoms change. And we even have a practitioner who is using it... She knows based on what symptoms, what services in her community the person might need. Almost without even meeting the person, just based on the symptoms, she could develop a list of resources that would be available at any given stage.

Those are two pretty awesome things on the horizon.

Steven Barbieri:

And we also recently started a new, I don't want to say member, but a monthly call for people that have newly signed up to join a group or get connected with the National Council of Dementia Mind. Sometimes there's a little bit of a wait to build new groups or whatnot so we don't want to... I don't want to use the phrase leave them hanging but we want to somehow get them connected. I believe it's a monthly call, right, Brenda? We have a monthly call with new people until they're actually get a chance to get placed in things. We'll remind them of upcoming seminars or upcoming groups or upcoming friends and family groups that we're going to have. But at the same time, we'll get five or six new people. There'll be somebody like myself on the board living with dementia on the call to help talk to them.

And that's like when they say, "Oh, Lewy body disease. Oh yeah, no problem. We've got a group of that." "Really? I've never met..." That's the biggest thing, "I've never met anybody else with Lewy body dementia. I've never met anybody else with white matter disease. Nobody has ever heard of CTE." I said, "We got three or four people in our group that have CTE dementia or whatnot." It's making people feel more connected, more accepted. And that was the biggest thing when I was first diagnosed it, I wanted to find people like me for the simple fact I wanted to ask them best practices because I wanted to get to 5 years, 7 years, 10 years, 15 years. I wanted to know what they were doing. And now I'm proud to say is I'm one of those people. I'm out 14, 15 years so I'm able to share some of those best practices that others shared along my journey so I have an opportunity to give back as well.

Lauren Gerlach:

Excellent. And for listeners who want to get involved or learn more about your organization, where would you direct them to?

Brenda Roberts:

Absolutely. Our website is super easy to find. It's dementiaminds.org. Or people are always invited to email me directly, [email protected].

Lauren Gerlach:

Great. And can we just end, could you explain to us a little bit about the Dragonfly logo and the logo on I see your shirt there, Steven, and on the website?

Brenda Roberts:

Our Dragonfly was actually logoed by our original Dementia Minds founders and the logo is a symbol of happiness. I can't get it all right, long time happiness, new beginnings, hopefulness, all the things that our organization embodies. And so thus the dragonfly.

Lauren Gerlach:

Wonderful. Well, Brenda and Steven, thank you so much for joining us today and sharing your stories and telling us about this wonderful organization. And thank you to all of you who listened in today.

Matt Davis:

If you enjoyed our discussion today, please consider subscribing to our podcast. Other episodes can be found on Apple Podcasts, Spotify, and SoundCloud, as well as directly from us at capra.med.umich.edu where a full transcript of this episode is also available. On our website, you'll also find links to other resources we've created specifically for dementia research.

Music and engineering for this podcast was provided by Dan Langa. More information is available at www.danlanga.com.

Minding Memory is part of the Michigan Medicine Podcast Network. Find more shows at michiganmedicine.org/podcasts.

Support for this podcast comes from the National Institute on Aging at the National Institutes of Health, as well as the Institute for Healthcare Policy and Innovation at the University of Michigan.

The views expressed in this podcast do not necessarily represent the views of the NIH or the University of Michigan.

Thanks for joining us and we'll be back soon.