“Afraid to Share the Diagnosis? How Janna Told Her Family and Took Back Her Voice” 

[Janna Performs Flute Intro] 

 

 

Janna: Hi, I'm Janna and I'm an Alzheimer's driver. I know it sounds like an oxymoron. 

 

Larry: Are you calling me a moron? 

 

Janna: If the shoe fits. No, I wouldn't do that to you, honey. (Chuckles) 

 

Larry: This is her husband, Larry, and you're going to hear from Janna. 

 

Janna: The horse's mouth. And by the way, I'm the one with the Alzheimer's. Today, I'd like to talk about how I broke the news to the family. And then I'd like to share an epiphany that helps me to advocate for myself. 

 

 

Larry: Well, since the first reaction to the Alzheimer's diagnosis from the neurologist is generally denial to some degree. Boy, it takes a minute before you're ready to talk to the family, but do you feel it's important that the family knows? 

 

Janna: I think it’s important that it be out in the light. I don’t think it can be done in a big group. It’s best to do it one-on-one, or with two family members., and to say that we're dealing with it and we're going to be okay. Here's what we need ...here's what would help if you want to be part of the solution, if you want to be part of the winning team. 

 

Larry: Okay, so you talked to our sons. We have four sons. So, you talked to them. And I remember they wanted to know all about that. And so, they started just diving into the research. 

 

Janna: I'm sure they were trying to figure out how to get me healed, right? 

 

Larry: Yeah. Well, or how, you know... 

 

Janna: ...how to ampliated the problem... 

 

Larry: ...it's tough because as we've said before, if you've known one Alzheimer's patient, you've known one Alzheimer's patient. So, you don't know how it's going to go. 

 

And this is part of the process is that, you know, as much as they do the research as much reading as they do, it's going to be difficult. 

 

Janna: People react differently. 

 

Larry: Yeah. So, they were asking a lot of questions. I remember that. 

 

Janna: And I've changed a great deal since then. 

 

Larry: Because you were out of it, right? 

 

Janna: Yeah, while I was out of it, I felt like I was outside and not on the inside. 

 

Larry: And it was hard to know and then not to say anything about it for so long. And it's kind of like you got a secret, right? 

 

Janna: The more and more that we got it out in the light, the better and better things got, including my ability to speak. 

 

Larry: So once you get past that situation, now we have six grandchildren. So, you told them not to tell the grandchildren, right? 

 

Janna: Well, they're different ages. I felt that it was important that we speak to them with an age-appropriate talk. You know, don't want to panic anybody for sure. And don't want to send people in the family into crying. And “Oh, I'm so sorry.” And you know, guess what? I don't want anybody to feel sorry for me. Well I guess I’ve broken that rule now and again, but for the most part, no ...don’t feel sorry for me. 

 

Larry: So, it's been ...a year into it. No, it was more than a year, actually. 

 

Janna: Do you want to speak to the diagnosis? 

 

Larry: Yeah, so, okay, so the diagnosis was at first that they didn't even have a PET scan that could tell if you had Alzheimer's, so they were saying, no, you don't have it. What they do now? But they did come up with it. And then they said, oh, man, yeah, you've got quite a few amyloid plaques there.   

 

And that was kind of a shocker because the neurologist originally said, no, it's just a result of your traumatic brain injury when you fell on the tennis court. And actually, that may have caused the whole thing to start the ball rolling. 

 

Janna: You might want to share about amyloid plaq... 

 

Larry: Yeah, amyloid plaques. 

 

Janna: Yeah, because some people might not be aware of that. 

 

Larry: Yeah, so we've talked about amyloid plaques, but just basically in a summary. 

 

Janna: In case you're just tuning in right now. 

 

Larry: Yeah, it's just a quick review. It's just a way that your brain protects itself. It has these Beta amyloids proteins in the brain. And they surround the injured area of the brain. And so, I think we spoke about this before. 

 

And then they can get out of hand. And when they do, they tend to start killing neurons. And so that's the whole thing about that. 

 

And so, yeah, so the amyloid plaques were there. And so, we knew you had it and you wanted to tell the kids you told them. So how did you go about telling the grandkids that was some years later, but some of them were old enough at that point that you wanted them to know. So, what was that like? 

 

Janna: Well, I talked to them, as best I recall, I'm pretty sure it was one-on-one. And said, “You might have noticed that I'm forgetting some things. You might have noticed that I've stumbled sometimes. And that's because I have a problem with my brain, and we need to work on getting it better. So, here's what's happening and here's what I need for you to do.” And then what was it they should do? 

 

Janna: Believe that I could thrive. I believe that I'm going to thrive. I'm not going to say, okay, I'm going to get all better. I'll never have a problem. I'll never stumble. None of that. No. But I want our home to be an atmosphere where we believe good things can happen. Miracles even. 

 

Larry: Yeah. And you have gotten better in a lot of areas, especially in speaking. 

 

Janna: Who would think? 

 

Larry: So, you thought it was important to tell the grandkids. Now, when you're out and about with the public or in a group conversation, I have a question about that. If people don't know that you have Alzheimer's, they're just going to treat you normally and they're going to be speaking quite fast and they're going to be expecting you to be right in the conversation. So, let's talk about that a little bit. 

 

Janna: Point in case. We're at the tennis court and Larry's going to have a what is it called? 

 

Larry: A tennis match? 

 

Janna: A match? Yeah. And it was a high level. Good players. We had to go down long way down step, step, step, step. 

 

Larry: To get to the benches to watch. 

 

Janna: Right. And so, I needed to use the restroom before we went, and Larry went ahead because he was going to play of course. And the lady that was at the desk said, well, you go over there, and you go over there and then, and I said, okay, so which way did you say you go to the right and then you left? And she said, she started to read it ...and then she caught it and she thought this person needs help. So, she came over and walked right over to me. See, see, see right down there, right down there and then when you turn around, there's a bathroom and then you just come out down here. Well, I went in, but I didn't quite know how to get out. What way to turn? How do I get away? And I felt embarrassed, and she was sweet enough that she just walked over. She took my hand, which was very intuitive to her. 

 

And you know what? Maybe some people would be insulted by that. But she was showing beautiful empathy to somebody who did not, I didn't need to come out and say, I can't do this because you helped me. She said here, let me take your hand. 

 

Larry: On the other hand, there are those that don't have that sensitivity. And, so they're just talking right along. 

 

Janna: Well, they just generally, they just go, well, it's right over there. No, it's over there. Right over there. 

 

Larry: Yeah. What's a good way to let them know that they need to slow down and maybe let you speak a little bit without embarrassing yourself or making you seem like this person that feels pathetic, you know, which would maybe even cause some people, I would think, to not even want to try. Because I don't want to tell these people that I have a brain problem. 

 

Janna: There is something a little bit more neutral, I think. And I say, whether it's profound or not, it’s not profound, but I say, “I have low vision.” And that's so wide. What does that mean? Are you blind or what? No. But I have low vision and I have to concentrate. 

There's a delay when I'm looking for things. And she just got that “low vision.” And this sweet lady came along side me, treated me like an equal. 

 

Larry: So, if you say to someone, I have low vision, but what about if you want them to slow down and listen to you when you're speaking and not jump over your conversation or maybe even pull you out? How do you sensitize them to that? 

 

I think you and I talked about this, right? So, it's kind of a loaded question. I was given an example of somebody who had a broken leg and they're on crutches and they're walking across the street and somebody just comes and bumps them on the shoulder. And someone else says, “Hey, you know, that person's got a broken leg. Can't you see that person's having trouble getting across? The least you could do is not bump them. You don't see it coming. 

 

They don't perceive it. But with you, they don't see that. Would it be too far-fetched to say something like, “You know what? You speak so quickly. I've got to admire that. You're such a fast speaker. But then what would you follow it with? 

 

Janna: I have a hard time following that. Could you slow down a little bit for me or say that again, please? 

 

Larry: Okay. So you're not going to come out and tell them you have Alzheimer's? Now, this is a perfect example of the difference between hiding our secret and then maybe bringing it out. 

 

Janna: Yeah, and I did hide my secret for quite a while. You know, I was ashamed. I was ashamed. And why am I ashamed? It's a disease. Hey, I got it. Lucky me. How can I deal with it? At least I have a chance to do better. 

 

Larry: Yeah, I mean, you have said to our family members, I know, and you may have said to other people that you have Alzheimer's. And so they're going to have to be patient as you speak, because you may not get it out as quickly as they're used to seeing it. 

 

I think, just speaking as a person who is on the outside of having it, I think if someone said that to me, and if it wasn't my wife, it was just a stranger said to me, “You know what? I have a problem. I have a dementia. 

 

Janna: I don't like that word. 

 

Larry: Yeah, me neither. 

 

Janna: For some reason, I recoil. 

 

Larry: So you like to say a low vision, but what about when they're talking? So that has another vision. 

 

Janna: I think if there anything comes out like there's a deficit and they need to slow down and somebody can't think and move as fast as other people can. I think people naturally kind of slow down. They put their mind into being empathetic. I would hope most people are kind of empathetic. If you're humble and let them know, “Something's going on, could you give me a break here?” 

 

Larry: I would imagine that would be very difficult for some people, but you do have to advocate for yourself, right? Well, yeah. I mean, if you don't, basically, you know, people are just going to treat you as if ...because I mean, most Alzheimer's patients I've seen in our circles and support group and those kind of things, they could get away with in a social group, just kind of being like a normal person. 

 

Janna: They just don't speak. Right? 

 

Larry: Well, and then sometimes they're on, they're right on, right on cue. So, it's like, “I don't see that he has a problem.” You know, if you were to mention it, it's like, “hmm, he didn't seem like he had a problem with me.” 

 

But as far as advocating for yourself, I think I have seen also people that just shut up. They don't do anything. Say anything. They just sit back and observe. What is it that you do? You have a technique, and this technique is very interesting because this is maybe what you're going to share your epiphany about echoing? 

 

Janna: Yeah, echoing. 

 

Larry: What is that? 

 

I'm listening to somebody's talk, and I want to get everything that they're saying. And I'm trying to. I listen really hard, but for some reason, it just goes by and I don't really grab it. So, I thought, well, maybe if I just think as if with my echo with my lip, and almost hear every word going by that they're saying, but as a physical experience is going through, because I'm using my lip to follow what they're saying. And I found it makes me much more alert. Maybe it doesn't help me to actually get out there and give speeches and speak and project my thoughts to others, but it certainly helps me to gain those thoughts and gain the information that I'm hearing go by. 

 

Larry: So that technique would be that if someone's speaking ...okay, let me get this straight. 

They're saying the words and you're saying them in your head and you're lipping them quietly with your lips. 

 

Janna: Yeah, and the head wasn't enough for me. I needed something more - physicality. So, there's my lips and I've got them together, but when I listen to what their person, I feel like I'm fascinated with them. I feel like I'm on the edge of my chair wanting to hear what they say next, and lip is wiggling as I'm kind of imitating what they're saying. 

 

Larry: Yeah, I've seen you do that. 

 

Janna: It's silent, but it helps me to comprehend it better. 

 

Larry: Okay. So, if you're out there in podcast land and you want to try this technique, why don't you, while I say some words, why don't you try and say those words in your head at the same time as if you're saying them and then be moving your lips. Let's try it. 

 

Janna: Should we have them being verbal with it or just moving their lips? 

 

Larry: Just moving their lips and trying to say it exactly at the same time I say a word. 

 

Janna: And I find that I really have to study that person, because I look at their lips. 

 

Janna: You look at their lips. 

 

Larry: You're watching. Okay, so I'll just say a quick poem. “Jack be nimble, Jack be quick, Jack jump over the candlestick.” 

So, how did you do? We'll never know. 

 

Janna: So, “Jack be nimble, Jack be quick, Jack jump over the candlestick.” 

 

Larry: Yeah, so you, you said it way after I said it, but what we're asking is that they would say it exactly at the same time, or very close to the same time. 

 

Janna: Okay, so that's ...I'd like to say I could be looking at the letters. And great for you, if you're somebody who has Alzheimer's, and you can follow those letters. Unfortunately, I can't with a TBI. 

 

Larry: Well, I don't know if they're speaking. They're not putting the words up on a screen. Which brings up another point. So, if you're following a plot, say, on Audible, or something like that, you could be doing this technique, couldn't you? 

 

Janna: Certainly. 

Larry: Or when anybody speaks, you could be trying to say the words at exactly the same time, and maybe follow more intelligibly the things that are happening. It is hard to follow a plot, isn't it? 

 

Janna Oh gosh, yes. 

 

Larry: Yeah. And if someone doesn't have, hasn't had the Alzheimer's for a long time, maybe you'll just kind of put this in your cadre of techniques that you're going to use, because in the future, it may happen that you are having trouble in this area. 

 

Janna: Or somebody you love having trouble. Because it's real easy for that somebody who is not getting it, and they're losing more and more to just give up. Just give up. Because they're not learning to read more quickly, probably. And so they're out of the conversation a lot of times, and that's not just no fault of the other people. Yes, they can speak more fluently. Good for them. That's great. I used to be able to do that too. But you have to get rid of it past the, what's that called, your pride. 

 

You've got to get past the pride and go, hey, so I can't maybe enter into the conversation like I did before, because I stumble too much. But I certainly can be involved in what's being said, and I'll get a chance to talk now and then. Maybe just with one loved one, or just maybe me knowing that. Thank you, Lord. I listened to that conversation. I gathered some thoughts, and I followed it. And that's renumerating for me. And maybe that's all I get, but it's something. 

 

Larry: Yeah, so this all falls under the heading of advocating for yourself, really. And you did that when you talked to the kids. You did that when you talked to the grandkids. Our kids are like in their 40s, so you talked to them. And discretion only. You know, they say, don't throw your pearls before swine. Don't think that everybody's going to get it when you tell them that you have Alzheimer's. 

 

Janna: It’s hard for them. 

 

Larry: Some people are going to actually feel like the guy that bumps the guy with a broken leg in the crosswalk and just moves on by and doesn't care. Sometimes it feels that way. Some people, you know, they have their own lives there in a hurry. Maybe they don't want to take the time. But I find by and large, most people do treat you kindly when you talk to them about your situation. 

 

Janna: Well, I'll tell you what it probably sure makes them feel smart. 

 

“Could you help me write, know that word, what that word is?” 

 

“Oh, sure.” 

 

Larry: So, in future podcasts now, we're going to be talking about other epiphanies Janna has had, right? 

 

Janna: As far as I can go with that. 

 

Larry: Yeah, as far as you can go. Yep, yep. That's helped her to thrive and be an Alzheimer's thriver. I'm totally impressed. 

 

Janna: How about the music part? 

 

Larry: Well, we talked about that. 

 

Janna: Okay. Yeah. I knew that. I was just testing you. 

 

Larry: But let's repeat it. You're the one that's playing the flute on all of these parts and you do play in a couple hours a day. 

 

Janna: I'll be honest though. Some of those little pieces ...I presented a couple years ago. 

 

Larry: Yeah. Yeah. Ten years ago. One that we did on faith that that was a recent recording of me playing guitar and you playing flute. 

 

Janna: Oh, yeah. For sure. I play a lot of things. And I have to, as it's been said before, in order to play these things, I can't just go, “Okay. I learned that. That's great.” But now I have that song, and the next ...nope, nope , It goes away if I don't practice it again within two or three days. 

 

Larry: Well, I think the next podcast is going to be on the different rooms of the house and what goes on there. So, we'll be talking about the living room. Kitchen. Laundry room. And how to get organized? Bathroom. And how we deal with conflicts or problems that come up in those different areas of the room and how kind of what goes on there. You know, most people don't know what other people are doing in their house. Everything's closed. The curtains are closed. Everybody's private. We're pretty transparent, right? 

 

Janna: Unfortunately, I have to be. So especially if sundowning is happening and it's dark. Yeah. 

 

Larry: So, we're going to be presenting those. So, keep listening. 

 

We’re going to wrap this up for now and give you the chance to gnaw on what you're thinking about. I’ll bet you'll have some epiphanies. 

 

Larry: This is her husband, Larry. And I must confirm that Jenna is thriving. We have many of the same problems that you may have as a couple. We don't know if you're a male or female listening, but you know, 66%, almost 70% of the Americans that have Alzheimer's are women. 

 

Janna: Sorry girls. 

 

Larry: Yeah, sorry girls. So that's the majority there. 

 

Janna: You should repeat that. 

 

Larry: Yeah. So that's two thirds of Americans with Alzheimer's are women. And so that puts folks like me, the man in this position of, you know, being the loved one who is going through it. And what we want to do is we want to thrive both as female and male. We want to thrive. And so, we don't want it to take or they say that we don't want to take two of you, but it's not really taking you. Like it's taking some, I must say, and maybe it has to do with all the things you're doing. I just really appreciate. 

 

Janna: Well, you really have to adapt. You really had to adapt. You wouldn't have to, but you do adapt. 

 

Larry: And so, we thrive. Yeah. So, we want you to thrive too out there. 

 

Janna: Yep. So, this is Jenna and my husband, Larry, signing off for this time. You've been hearing from the horse's mouth. 

 

[Janna Plays Flute Outro] 

 

 

 

Links and Research on when to tell others: 

1. European Geriatric Medicine (2021) 

“Family members’ attitudes towards telling the patient with Alzheimer’s disease their diagnosis: a 20year repeat study” 

• In Ireland, family members surveyed in 2021 were over 4× more likely to favor disclosing the diagnosis compared to those in a similar study two decades earlier Mayo Clinic Press+4SpringerLink+4PubMed+4. 
• The shift reflects broader recognition of patient autonomy, with disclosing seen as facilitating proactive planning rather than evoking negative reactions SpringerLink. 

 

2. Physicians Postgraduate Press (2019) 

“Disclosure of Alzheimer’s Disease and Dementia: Patient and Care PartnerCentric DecisionMaking and Communication” 

• This evidence-based consensus emphasizes that early and timely disclosure, paired with psychoeducation and care planning, improves quality of life, allows shared decision-making, and reduces harm by enabling earlier intervention PubMed. 
• Disclosing sooner supports involvement in planning, access to services, and better management of symptoms. 

 

3. Alzheimer’s & Dementia Translational Research & Clinical Interventions (2024) 

“Personal value of Alzheimer’s disease biomarker testing and result disclosure from the patient and care partner perspective” 

• Disclosure of biomarker results (e.g. CSF/amyloid tests) provided diagnostic clarity, reduced anxiety, and motivated lifestyle changes and future planning, both for patients and care partners Verywell Health+12Alzheimer's Journals+12PubMed+12. 
• Many participants valued the knowledge and reported positive emotions after disclosure. 
• Some noted that patients hesitated to share to avoid burdening others, but families often appreciated the information and wanted to support planning PMC+3Alzheimer's Journals+3PMC+3. 

 

4. Systematic Review (UCL, 2021) 

“Factors associated with disclosing a diagnosis of dementia to one’s social network” 

• Synthesizing international qualitative studies, this review highlights that self-disclosure often reduces stress and burden, alleviates pressures to hide symptoms, and creates opportunities for social support PMC. 
• However, stigma remains a barrier—fear of embarrassment, social exclusion, or changes in others’ behavior are frequently reported PMC. 
•