Additional Resources Mentioned
Takeaways
Tip 1: Know What Signs to Look For — They’re More Than Just Memory
Tip 2: Start Early and Normalize Health Conversations
Tip 3: Plan Ahead for the Doctor’s Appointment
Read More in This Blog
https://sueryansolutions.medium.com/54-recognizing-early-signs-of-dementia-how-to-start-the-conversation-with-family-and-doctors-04b80dfd3b6e?postPublishedType=repub
Full Episode Transcript
Nancy Treaster
Are you concerned that your loved one is showing early signs of dementia? In this episode, Sue and I are talking with Dr. Anna Chodos, professor of medicine at the University of California, San Francisco in geriatrics and executive director of Dementia Care Aware. And we’re also talking to Dr. Barry Jacobs, who is a clinical psychologist, family therapist and the co-author of the AARP caregiver answer book, which most of us have all read. We’re talking about managing through those early signs of dementia with a loved one. We’re sharing three tips.
Sue Ryan
Welcome Anna and Barry. Nancy and I are asked frequently about what to do when we kind of think we’re seeing signs of dementia in our loved one. So let’s go to tip one, which is what are some of the signs to look for?
Anna Chodos
Thanks for asking that. And I think the way you said it, something like, maybe we’re seeing something that kind of furrowed brow is a good overall representation of how a lot of us get through that moment and are sort of feeling in that moment, which is, not sure. So I wanted to give just the tips to sort of help ground us a little bit in what might be real or what might be not real or something less likely to worry about. So first of all, think of, there are three things we think about and it’s what kind of symptom, I would say symptom as a doctor, but what kind of example are we seeing that’s kind of worrying us? So really defining that. Next, looking at how serious a change this is from that person’s baseline. And then the next part of that is, is it getting worse over time? So those are the three things I think really help, again, ground us of, am I seeing something that might be a problem or might be really dementia?
In early dementia, by definition, all symptoms are mild. And that’s again why these sort of elements of thinking about the symptoms the person’s having really helps. So first of all, for the types, a list like the 10 signs of dementia or early signs of dementia that you might see on the Alzheimer’s Association website can be a really helpful guide because it points out, I mean, there are 10 of them. So it’s not just memory. We usually think of memory as the symptom we’re looking for.
But the brain does wonderfully for us. It does so many things. So when people are having symptoms, they can have symptoms across all of those, what we would call domains or areas of cognitive ability. So sometimes people are having more trouble with language or getting words out. They’re speaking less or are not able to get feelings or name things properly. Some people, you may see a lot of behavior change. They’re not the same person they were. They’re doing things they wouldn’t have done before. They’re not as attentive to their appearance and before they were impeccable. Some people may have changes to their physical movement abilities like tremors or they’re having more difficulty walking. And I know that’s really, like that feels so far afield of something like memory, but it is a potential symptom. So again, what you’re looking for is, is there a symptom that has to do with brain function basically?
The next one, which I mentioned severity is again, was this something that was a strength for them before that’s now difficult? So like, is this really a change for that person? And the reason I say that is because I, for example, terrible, terrible beyond terrible with directions. If I use my intuition, I always go the wrong way. It doesn’t matter how long I’ve lived somewhere, just doesn’t matter. It’s never been a strength of mine. Working memory, like, remembering a grocery list, remembering points of conversation in a meeting are more of a strength for me. So if I was really starting to struggle with that, that would be a sign for me. You’re kind of the expert in the family member or the person that you love or care for is experiencing. So thinking about like, is this really a change for them? The other one is though also like symptoms that are just obviously abnormal. So, you know, repeating themselves multiple times in a couple hours of hanging out with them and it’s clear they have no clue they’ve just repeated the exact same story. That’s something most people would never do, right? So that’s another severity sign.
And then the third one, which maybe is a little quicker for me to explain, is just trajectory. Like if it’s getting worse over time, you know, you saw them last Thanksgiving and you noticed that a little bit and actually you thought it was kind of maybe a little strange. And this year it’s super noticeable. That’s a sign that’s getting worse over time and that the trajectory is one of progression. So that’s like the framework I kind of hang my hats on in terms of figuring out if people’s symptoms are really something I would be concerned about and start to do an evaluation on. And it’s the exact same thing for family members and loved ones. They can use that same framework.
Nancy Treaster
You know, my husband had frontotemporal dementia and he started with not being able to find the right words. It was very language oriented. He ended up with primary progressive aphasia. And it never crossed my mind that it was dementia right at first because it was language. And I thought dementia was memory, right? But I knew something wasn’t right. And we did go see a neurologist. But you know, it is interesting when you think of the 10 signs that everyone thinks of memory and yet there’s so many other signs that are neurological challenges.
Anna Chodos
Yeah, absolutely.
Nancy Treaster
So once we start seeing these signs, I think we’re all would typically find ourselves concerned, but tip two is really about the next step, which is how are we going to start the conversation and even potentially normalize the conversation about health? And that’s a tricky one.
Barry Jacobs
You know, starting the conversation is extremely important, Nancy, and it’s often very difficult for adult children. And sometimes it’s so difficult they avoid starting the conversation for fear of upsetting the parent because they have some, they understand that the parents, as they get older, may have sensitivity about having declining functioning in multiple areas. Maybe they don’t hear very well, but they don’t want to be told that they can’t hear well, or they don’t see very well, or they don’t want to be told that they don’t see well. But the one that they’re most sensitive about clearly is the idea that perhaps their thinking skills are slipping somewhat. And so it’s very hard to start this conversation and requires a great deal of sensitivity. And so what would be ideal would be for an adult child to begin having conversations with the parent about their health in general and maybe long before any problems are emerging.
So for instance, there may be occasions, naturally occurring occasions when an adult child can bring up with a parent, hey, I know you have a primary care visit coming up. Are there things that you’re gonna bring up with your primary care doc to talk about? Or maybe they just had a primary care visit and said, well, how did it go? What did the doctor say to you? What did you talk about? Did the doctor check your hearing, your vision? Did the doctor talk with you about how well you can walk and how far you can walk and check your strength? And did the doctor check your memory and how well you’re able to do the things that you’ve always been able to do for yourself? So when it’s packaged in that overall conversation about health, then sometimes parents could hear it a little differently.
That’s as opposed to an adult child saying to a parent, I think you’re really going downhill cognitively and we need to do something about it. Our parents will immediately become very alarmed and become very defensive and you won’t get very far. But once an adult child just talks with a parent about their health in general, cognition is seen as part of their overall healthcare, then I think that they will be able to normalize the idea the adult child really wants to be of assistance, wants to help them live as well as they can as they prefer. And that the child is not trying to take over, but is really just making the kind of caring expression that any family member would say to another just to make sure that people are doing well. Parents, of course, are very concerned about being burdened to their child.
And sometimes a child has to say, you know, this isn’t a burden to me. I love you and I want to know what’s going on. And I want to help you live the way you want to live. And that is not maybe one conversation. That’s multiple conversations over time because parents have to sort of get used to the idea that their adult child is not a child anymore, but is an adult who can talk with them about some of these important issues in their lives. Just as the parent can talk with the adult child about important issues in their lives. And so once it gets packaged like this, particularly when it’s done at the right time and in a sensitive way with lot of empathy for the parents’ sensitivity around these issues, parents could often come around to seeing that the child does mean well, that they’re not trying to step on their toes. And then the child is then in a better position to begin talking with the parent about seeking a medical evaluation if there are enough of those signs that we were just discussing. Anna, what additional thoughts do you have about this tip?
Anna Chodos
I’m just really struck by how useful and wonderful it would be if we were having more of these conversations routinely and like what a great tip that is and how we can start to frame having conversations about how everyone’s doing, you know, adult children, spouses, whomever, you know, in terms of like, obviously, you know, I care about your health or, you know, I really want to. Like, you know, just how normalizing it can be also to put it in the context of health instead of like leaving it in this special category of dementia and cognitive decline and how understandably uncomfortable that is because of, you know, not yet. We really hope for a better future, but I think not yet do people see enough positive examples of people aging even if they do have dementia or, you know, so aging in general, not positively viewed, dementia often not positively viewed. And I think as we do a better better job of helping people earlier and as comprehensively, you know, some of that valence will go away. But in the meantime, we’re left in these family dynamics where it really is about how much can we align as a family on all things health, including dementia.
I guess the only other thing I was thinking in my mind and trying to troubleshoot as you were talking is that one issue where often people don’t have the self-awareness and that it’s just a, it’s a structural and inherent issue about having to do with the condition itself. And when that happens, really reframing around ways to help support the person without constantly framing in terms of because now you can’t do it or because now you have this cognitive issue that’s interfering and seeing how we can still make progress without constantly referring it back to that issue because it’s not dishonest, it’s not inappropriate, it’s more that the person themselves may not be as able to understand that this is going on with them.
Barry Jacobs
Yeah, I absolutely agree with that. And just a couple other points. You know, one is that sometimes within a family, there may be multiple children, multiple adult children. And those adult children, if they’re all in agreement that the parent might need an evaluation, maybe they can strategize among them and decide how to pop the topic, bring up the topic with the parent. Maybe there’s one child that the parent favors or has a little better relationship with and maybe that’s the child who raises these topics and the parent may be more apt to confide in them about what’s going on. Maybe they’ll confide in the daughter and they won’t confide in the son. That’s a strategy or a tactic I should say that those adult children will work out.
The other thing I’m going to say is that sometimes I have seen adult children and I was one of them with my own mother who had dementia where I basically said, I don’t think this is the problem for you but I’m concerned and to help me feel better would you do this for me? I mean because parents are accustomed to doing things for children and don’t particularly like children doing things for them because then they feel like a burden. If when placed in that way, phrased in that way, sometimes the parent will say all right if it’s gonna make you feel better yeah I’ll bring this up with my doctor so that they can do a screening with that, you know, reduce your concerns. And I would say yeah that really reduced my concerns and I appreciate if you do that thank you. So they’re doing me a favor by getting this done. Now that that actually I’ve seen work with multiple clients.
Nancy Treaster
And there’s also some, I’d be curious what you guys have to say about this, but there’s medical challenges, things can be wrong that act like dementia or show signs that look like dementia that are not dementia. And so there’s sort of that angle of let’s go get, we don’t have to say you have dementia, right? We say we’re concerned about these signs or these things we’re noticing or whatever, you know, and let’s go get checked out because it could be as simple as, I don’t know, Anna, you have some ideas, but it could be something simple that can be fixed.
Anna Chodos
Yeah, I mean, the really big ones are like sleep apnea, medications. Those are the big ones really. So to some extent, some other medical issues like thyroid disease, but there’s some really, really common ones. Also actually sleep hygiene. So when routine gets disrupted and maybe people don’t have quite as much going on during the day, staying up all night watching TV and falling asleep in front of the TV and then having really poor quality sleep. So we see a lot of things that, you know, I’m a little more in the camp that if someone’s really having symptoms that are progressing over years, very unlikely to be entirely, you know, one other condition. Regardless, all those other things are often also going on. And then when we find them, treat them, people feel better and their brain does better no matter what, and to whatever baseline they’re now at. So still really, really important to get the like full evaluation.
Sue Ryan
And a big part of what you’ve been bringing up as talking about this with the family members is that the sooner that we’re doing it and the more that we’re talking about it altogether, the more we eliminate our loved one feeling like they’re a burden because we’re having conversations about this and we’re a team, we’re all in this together. And that really helps them feel more like they can engage and they want to be a part of it. And it’s not after a diagnosis has already been determined. So the sooner that we do this and the more impactfully that we do it as a family, as a group together, the easier that’s going to be. And we’ve talked about having the conversations here with the families, and yet there does come a point in time where it’s really important for us to have that conversation with the doctor. And that’s tip three. How do we have the conversation with the doctor?
Anna Chodos
I think that’s a great question, Sue, and it’s a tricky time. It can feel like an intimidating time, I think, for a lot of people. I think the first thing is making sure we plan a little bit ahead of time. So some strategies are to create an agenda and make it known at the visit. So if you are not the patient and you are the concerned family member or supportive person during a health care visit, figuring out where you’re able to help contribute to the agenda, get that agenda in front of the doctor. One suggestion I know I’ve heard is to bring a very prominent list, perhaps on a big yellow legal pad. So it’s very clear to the person that you’ve prepared something and that this is something that almost in a highlighted fashion needs to get attention. The other thing is like the electronic chart, if there’s a way to contribute there, if you’re a proxy to say, hey, these are the things that I really wanna bring up at the appointment, particularly if you wanna do that in a way that is, you have some private thoughts to share to the clinician.
The other thing is, again, doing this beforehand, doing this afterwards, depending on how the visit goes, you can always share information with the doctor outside or the main clinician and nurse practitioner or physician’s associate with that person. You can share that information that you have about your relative, and that does not violate any rules. Whereas the physician sometimes will not feel comfortable talking to a family member if they don’t have very clear permission or some signed form. Everybody’s a little bit different on that. I will say if any colleagues are listening, you know, dementia care, if there’s any concern for dementia, it is best practice to talk to people who know the person and to do so in a way that doesn’t necessarily disclose information about them if that’s not appropriate or, you know, allowable. But that is actually a core piece of our diagnostic and evaluation process. So it’s not appropriate not to do that. So I would say when patients are perhaps a little resistant about me talking to folks in their family or people who know them, I find ways basically that is not disrespectful or in any sort of violation for the person, the patient, but certainly gets information I need about how they’re doing, because it’s absolutely critical.
But anyway, bringing your agenda, preparing, right? It’s always harder in the moment, especially when you have these time pressured visits. So getting it on the agenda upfront and early and finding ways to do that. The other thing is come with specific information. So I think the more you’re able to talk their language a little bit, like I’m noticing this symptom, I’m noticing it’s happening more often, I’m noticing it’s quite out of the range for her. Sometimes this backfires a little bit, and don’t say chat GPT, but you can still probably say Google. Like I Googled this. And I was looking at the Alzheimer’s Association because I was just so concerned and I noticed these are classic symptoms. So we’ve been talking ourselves or I really would like my mom to have an evaluation that looks into, for example, dementia or other causes of these symptoms. I think that’s perfectly appropriate and helps lead them to water a little bit.
It is unfortunate that unlike some other aspects of medical care, it’s still not as routine as we’d like it to be. That’s what my organization and work does is try and get primary care in particular, but other parts of the healthcare system to screen for or to be very primed to do early detection and to do thorough dementia or cognitive evaluations and functional evaluations. But we’re not there yet. So you very well may walk into a clinician’s office who isn’t ready to jump. They didn’t just take a training that we updated or something. You know, they’re not as comfortable with the condition. And so they may be more likely to sort of particularly if it’s mild again, you know, say, well, I’ll deal with that some other time. So keeping on them, giving them the tools to realize these are real symptoms, giving them the expectation that you want this evaluated. And so does, you know, the patient, of course. Or you’re so concerned, you know, you really want the patient evaluated, even if they’re ignoring the symptom. Also a classic symptom, that people don’t recognize that they’re having these symptoms.
And then follow-ups. So if things aren’t moving along, saying, it was so nice to meet you at that last visit, you know, with a voice message or a MyChart message, you know, it was so nice to meet you. I’m not sure what the follow-up has been on this. We’re still concerned. Nothing’s really changed. Or in fact, getting a little worse. We would still really like more information about this, you know, keeping on them. And again, the number one thing for all clinicians is, am I aligning with my patient? Am I doing the best for them? And unfortunately, helping people work up early cognitive symptoms has not yet reached that level of this is the absolute best thing I could do for my patient today. When other things are in there, like a diet, you know, the diabetes isn’t going well, the blood pressure isn’t going well, which is often happening when people are having some of these symptoms. And that is their territory. That is their domain and maybe where they’re more comfortable. So helping them lead to water and being that good advocate that obviously you are if you’re here listening, taking your time to listen to this and watch this podcast and conversation.
Barry Jacobs
And I would just add one thing and that is if this conversation is taking place in the context of just a family medicine visit, you know, primary care visit, then mostly what’s going to happen if things go well is the primary care provider is going to do a screening and the screening is not going to produce a diagnosis. And the screening is going to be a 10 minute, five to 10 minute short test. And if your relative does not test well on that, if they test below a certain threshold, then they will be referred for a more extensive evaluation. That’s the process. So there’s not going to be a diagnosis coming that day, but basically what’s happened is you’ve triggered the medical system to pay attention to this and to do a more extensive workup. And that means the next thing will be, well, now we’ve got into the primary care office. Now as a family member, you’re going to have to convince your relative to go to the neurologist or maybe to a geriatric psychiatrist or a geriatrician to get that additional evaluation. And at that point, hopefully everybody’s in agreement, but I’ve also seen at that point where things come to a halt for a while, and sometimes the primary care provider can kind of push the patient along to the specialist to help with that further assessment.
Sue Ryan
Anna and Barry, thank you both so very much for all the insights and valuable, valuable information you’ve brought to us. Tell our listening audience how they can find out more about you and where they can find you.
Anna Chodos
Thank you so much. This has been an incredible opportunity and I agree, a great conversation. Our program is DementiaCareAware and that’s the website, DementiaCareAware.org. We have information very geared towards healthcare, but also in our resources for caregivers, care partners, and we love getting input and feedback from folks like yourself. So really encourage you to come check in with us and we’ll definitely respond to your emails if you have any questions.
Barry Jacobs
And if folks want to contact me, I have a website, www.caregiveranswerbook.com. It doesn’t just have information about our latest book, but about the psychotherapy practices my wife and I have, as well as information about how to contact us. So feel free, we’d love to hear from folks.
Sue Ryan
Thank you both very much.
Nancy Treaster
Thank you from me as well. I really appreciate the fact that you guys have taken time out of your days to help our listeners understand how to manage through these potentially early signs of dementia and managing through it is definitely a big challenge. So we appreciate so much that you were here and sharing your tips with us. We shared three tips.
Sue Ryan
The first tip is look for these signs.
Nancy Treaster
The second one is how to start and normalize the conversation.
Sue Ryan
And tip three is talk with the doctor.
Nancy Treaster
If you have tips that you’d like to share about how to get through and manage early signs of dementia, please share them on our Facebook page or Instagram page. The links are in the show notes for every podcast. There is a matching blog where we’ve effectively taken the notes for you. So go out to the caregiversjourney.org, find the number of this podcast and go to the blog page. You can find a blog with the exact matching number. And effectively, that’s where the notes are for this podcast. If you like this podcast, please share it with other people. Please like it and subscribe to it. We really appreciate it.
Sue Ryan
We’re all on this journey together.
Nancy Treaster
Yes, we are.
