You’re Not Alone in Your Dementia Journey: Stories of Coping with Alicia Jones

Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30+ years of experience as she guides you on a new path to a better relationship with those you care for. Here's Lisa.

Hello everybody, welcome back to another new episode of The Truth, Lies Alzheimer's Show. I'm Lisa Skinner, your host, and I'm really excited to have a very special guest here with me today. Please let me introduce her. Her name is Alicia Jones, and since 2006, she has helped transform the health and the lives of women over 50 through her fitness and weight loss strategies. Now, Alicia happens to be an expert who has been featured in major outlets including Shape, magazine. Now that's impressive. Very well fit and adaptive. She holds a bachelor's degree in kinesiology and adds many certifications to her list of qualifications, including National Coach of Canada, or NCCP, Advanced Sports Nutrition, Certified Group Fitness Instructor, instructor, personal training specialist, and many others. If you want to learn more about her unique food and fitness formula, join her free masterclass link that will be in the chat. I am just so thrilled to have you here today, Alicia. And for those of you who might kind of be wondering Why we have invited a fitness expert onto the Alzheimer's show, there's a very good reason. Alicia and I were introduced by a mutual colleague, and we got to talking, and when we were just kind of finding if we had a common ground with one another, She mentioned to me that so many of her clients have shared with her their personal stories relating to going through an Alzheimer's journey with a loved one, or they're maybe even actually caregiving for somebody with Alzheimer's. And she was sharing some of these stories that her clients have shared with her. And then the light bulb went off in my head saying, I know my audience would not only benefit but would love to hear what some other people are going through with this really tragic disease. So I invited her on because, you know, it's something when we hear what other people are dealing with, it not only will prepare us to maybe be aware of that situation and maybe how we can handle it or how you can handle it, but also that none of us are alone in this. And I know it feels that way to a lot of people. So anyway, Alicia's here really to discuss a lot of the personal stories that has been shared with her about— and it— and I'm not talking just about a couple of clients, she has shared with me that the majority of her clients are dealing with Alzheimer's disease or one of the other brain diseases that causes dementia. So with that said, let's give a very warm welcome to Alicia Jones. Hi, Alicia. Thanks so much for being here. I'm just so thrilled.

Thanks for having me on the show. And exactly what you said, um, I have Because I work with women over 50, I, as you can imagine, as many of the people listening to this program right now, you are probably within that range. You're either a caregiver, you know, the sandwich generation for kids, and you've got parents that you might be taking care of that have dementia, whether or not they're living with you at the time or they have to have been placed in a home depending on where they are in their journey and where you are with them. And also many of the women that come to me, the reason they come to me, while weight loss is a part of what I do, absolutely, it's that they are in this next generation where health has become so vital, so important. And they have witnessed their parents have dementia, Alzheimer's, cognitive, issues and they do not want, or they want to try their best not to go down that same road. And they, as you know, exercise is so vital for staving off dementia, Alzheimer's disease, to help improve cognition, and so is healthy nutrition. And so that's a big reason why these women come to me. But one of the big reasons that they come to me as well is because inside of my program, we have a huge support system. And what we find is a lot of these women become caregivers to individuals that are going through their, you know, their parents, their aging parents that are going through Alzheimer's or dementia, whether that's early stages and they're still living in the house. And so they're caregiving pretty much 24/7. And as you probably know, you don't have a second for yourself. When you're caregiving to this level. And so they feel that they're not able to sleep, that they are gaining weight, that they have brain fog themselves, that they're achy and sore. And they're trying to figure out how do I take care of me so that I am better able to take care of my loved ones.

Oh, that's a major challenge for adult children, for caregivers. And just to kind of piggyback on two of the things that you said, We are— have actually seen a shift in the caregiving model post-COVID. More and more families, and it all has to do with the fact that these assisted living and memory care neighborhoods were completely shut down during COVID They weren't allowed— the family members, care— outside caregivers were not allowed in the buildings to visit. And we saw a huge increase in problems with isolation for these folks living in these environments with depression, isolation, and it actually increased the decline and they passed away. And as a result of that, we're seeing a shift in more and more family members taking on the role of being a caregiver and bringing their loved one into their home. And then to your point of the exercise, I am reading more and more and more and more studies that have actually substantiated the correlation between getting regular exercise and brain health, either delaying cognitive decline because, you know, you're exercising your brain, you're keeping the neurons fired up. So these are all becoming known facts that definitely carry a huge weight on the future of all of our health.

Yes, and not only that, the movement in and of itself is a great predictor of cognitive health. So, for example, if you see somebody who is at the very early stages of cognitive decline, let's say dementia, for example, you'll notice they start to shuffle and they will not use their arms as much. So instead of— for the most part, we tend to walk where our right our right leg comes forward and our left arm, and then our left leg and right arm. So we almost do this swinging, almost like a soldier march, but in a very small way of doing that motion. We don't swing our arms very, very grandiosely, you know, if that's even a word, but we don't swing our arms with huge movement, but we do tend to have a cross crawl pattern that is right arm, left leg, left arm, right leg. And one of the first ways that you know that cognition is declining is there's more of a shuffle and there's less movement in the arms.

So that was one of the things that was so noticeable in Joe Biden that every— all the reporters were pointing out, and you could see it like when he was on TV. I noticed it, um, and it's true what you're saying is absolutely true. Yeah. Oh, the other thing that a lot of people— and this is, um, being released factually in studies that have been concluded is a lot of people, one of the earlier signs of people besides the one you're saying, the shuffling and lack of moving the arms, is a lot of people who have been interviewed have said that one of the first signs, and they didn't think of it as being anything back then, but now that they're reflecting back, a lot of people have now reported that they've lost their sense of smell. That was one of the earliest signs or symptoms that they recall, and it's becoming well known that a lot of people who are developing dementia do lose their sense of smell. And I've even heard sense of taste too, but I've heard more that it's sense of smell. So that's something that I've actually incorporated into my risk factor and presentation to let people know that this is becoming more and more and more evitable to people that they're reporting they notice that.

Yes, absolutely.

Doesn't sound like you had heard that one before.

No, I hadn't heard the smell. No, not that much, but I'm more like my area of expertise expertise is movement. So yeah, okay, nutrition. And so, and even like brain games and that sort of way of doing exercise for the brain. So, um, that's really interesting though. I had never heard that. No. Oh yeah, that sounds like COVID to me.

Well, I thought of that too. It's like, oh my gosh, that happens to a lot of people when they have COVID. But evidently there's a correlation now between losing sense of smell and be— as being one of the first indicators of possible dementia.

Very interesting.

Wow.

Well, share some of these personal stories with us. I'm just, uh, can't wait to— and, and I, I know that my listeners are going to be very intrigued by them for the reasons I already said, which— so they feel that, okay, they're not alone, this, this has happened to them, and it's reassuring to know that they're not the only ones who have experienced a particular situation. And the other benefit is hearing of other experience, real-life experiences. If it ha— hasn't happened to them, they know it could and would be more aware of it. So I think this is going to be, um, really powerful to that we are sharing these personal stories that have been shared with you with my audience.

They aren't my story, they are my client's story. So I'm gonna, you know, they've given me permission to talk about it. But I think one of the big things we were talking about even before we came on this podcast today was I was sharing that, you know, I think we all know somebody that has been affected with dementia or with some cognitive decline, Alzheimer's. It's— we are all— we have all been touched by it, much like cancer. I think we all in some way, we know somebody or, you know, we have a relative or a friend that has been touched by cancer. It is the same thing I find with dementia, especially as the generations— we're getting older and older. And so one of the things that isn't really following with us is our our brain and our cognition. And so it's true, we are starting to see more and more of this issue here. And, and what I find most is that when we are speaking inside of my groups, there tends to be two groups of people: those that decided to join my program after their loved one has gone into a facility or passed away, because it's finally time to take care of themselves, and they're really feeling that need to do so, or they're going through the journey at the same time. And for those that are going through the journey of just discovering that somebody has had dementia or the early signs of Alzheimer's, for, for us in the groups, we're watching from the beginning of that journey all the way through until the individual is placed in a home or passes away. And to watch the various stages stages that somebody goes through of that grief process, because you really do grieve twice, don't you?

Yes.

You know, you have that first where the person that you knew is no longer the same. And when we're talking about the people in my group, that tends to be their mother, their father. You know, it tends to be somebody who, even though they're in their 50s, this was somebody who was a major, important, wise individual in their upbringing. And so to watch this shift and decline of this individual to somebody that's no longer recognizable to them as somebody that was once in this position of parent and, and wisdom, there's this huge grieving process that takes place. And it— I mean, when you're trying to take care of your health and your well-being and you're grieving to this degree, you really need to give yourself grace and give yourself time because, you know, it's not just, oh, I should be taking care of myself, and oh, you know, I know she's not the same person or he's not the same person as he once was. There's that logical understanding, but you literally are grieving that individual. And then that happens once again once the person passes.

Very, very true. And I don't think I don't know, based on what you've seen with your clients, but first of all, I don't think that people are prepared to go through that grieving process twice. I don't think they realize that they, they need to go through that grieving process while their loved one is progressing through the stages of the decline, and then again when they're physically gone. I don't think people even stop to think that this is what's going to happen, but it's, it's very true. And I say that all the time. It's like you lose your person twice.

Yeah. And I think that some level there's an acceptance, um, in between. And so I've, I, again, I've seen, uh, I had a client who's very close with her mother, you know, she's in my program and she shared with us when her mother got diagnosed. And her mother lived with her inside of the house, and she slowly watched her mother slip away, but with these moments of clarity, or these moments that once again it was her mother again. And so it went from grieving and being, being in this place of just, uh, deep despair for the, the mother that she lost, but then there became this acceptance and almost this gratitude for the moment she got the clarity with her mother again.

Oh, that's very endearing.

Yeah.

What— okay, so this particular client— I mean, nobody signs up for this, right? We can all agree to that. Nobody signs up for this. But I agree with what you're saying, that— and I've made the same observation myself. And as you know, I've been helping families for 30 years, everybody seems to have an Alzheimer's story once you bring the subject up. They don't necessarily volunteer the information. Sounds like they, they confide in you, but if the topic comes up, it does seem like everybody does truly know somebody or has it, you know, going on within their personal lives. So this particular client Did she share with you how she felt when her mom was first diagnosed and what she did to prepare herself for, you know, these years and years of the disease progressing? Did she share any of that with you? Because I think we'd all be interested to know how she personally dealt with it.

Yeah, you know, I I think the big thing with this client at least is she's always trying to better herself, always, always trying to better herself. The reason she came into the program was to better herself. The reason she stuck around even when, you know, the diagnosis came in was to better herself. And so for her, I always find that she's like, what do I need to do now to be able to cope and take care of this, this moment or what is going on with me. So completely unrelated to my group, she ended up joining some support help groups, uh, which was really important. She has a great family that is also very supportive. I think a lot of times what I've seen in the past, not with this particular, uh, participant but with others, is that they take it on all themselves.

Yes.

They feel that they need to be taking it on all by themselves. And I think one of the most important things to do is ask for help and to find moments where you can take care of yourself, even for 5 minutes, even for 10 minutes, something where it is just a moment to be with you or, um, you know, to take care of your health or well-being in some way. Because if you do not, you will not have the energy to take care of this individual either. And that's easier said than done, but At the same time, there are little things that you can do along the way to make it a little bit easier.

Do you have any suggestions? Because this is one of the biggest challenges that family members and caregivers face, and I don't think it can be overstated how we really need to pay attention to what we're talking about and find even a couple minutes to pause. Do you have any suggestions of things that people can do that could seriously make a difference to their day, to their overwhelm?

Yes, and you know, I think when we're talking about in the caregiving with the person that you are taking care of within your own home, one of the best moments or best things that you can do for yourself is just before you're going to bed. You're about to go into bed anyways. You're there. That's a moment for you to do some meditation or some deep belly breaths, something to bring your cortisol down. Because when you're in a constant state of care, you are in a high cortisol moment. You are in this. So what we need to do is start to bring that cortisol down a little bit. So that you can sleep better. The melatonin rises up. Sleep is going to help repair not only your brain and your cognition, but it's also going to help you rest, become stronger, and recover for the next day that you will be taking care of somebody again.

Oh, that's a great suggestion. I mean, I don't think a lot of people were aware of the cortisol piece of it and bringing the melatonin up and the cortisol down. I wasn't. But that's a great suggestion. I mean, you can find a couple minutes to do that, right?

Yes, absolutely. And the best time is before you're going to go to bed because we all know things pop up all the time. And just when you have that moment, that's a big thing that I see with my participants that are caregivers with somebody in the home. You sit down for the meeting, for example, that we have, and then you're muting the meeting and you're putting your picture up on the Zoom so that we can't see you because you're getting called away for a moment. Or, you know, the, um, the lawyer called to deal with the trust, for example, and figuring out the paperwork for the loved one, or, or, or there is always something that happens. But that moment that you go to bed and the door shuts and you are, uh, you're for the most part, when you go into bed and you're going to lie down and go to sleep, that's a moment for you. Right there that you can do something to lower that cortisol level.

Perfect, perfect. So what are some of the other things that people have shared with you about, you know, having a loved one or being a caregiver for somebody? I mean, because this is so different caring for somebody that is going through cognitive loss, cognitive decline. It's much different, and I'm not you know, just— I'm not trying to dismiss the difficulty of other caregiving situations, but when somebody loses their core self and their cognitive functions decline to the point where by the end of the disease stage they pretty much all their cognitive functions are completely gone. Mm-hmm. From what I've seen and personally experienced, it's probably— I think personally and professionally that it's probably one of the most difficult undertakings anybody will ever have, just because you can't communicate like you could when their brains were healthy and You know, they lose their ability to reason and to use judgment, and they're really falling back on raw emotion for responding to everything that happens in their environment. And it's very challenging for loved ones and caregivers to know how to really respond and react to those sorts of situations. So what have you been hearing in terms of what your clients have experienced, like some of the harder challenges that maybe they've shared with you, or the things that they just don't know how to deal with?

Well, I think the, the biggest is the fact that they've lost that person that isn't reasoning with them anymore. And so it's learning how to have a conversation with this new person and how to no longer try and reason. So, you know, for example, I have another participant in my program whose father ended up, he's in his 90s, but he got dementia and paranoid dementia. So he's like, people are in my house, people are, you know, coming after me. And you can't say to this person, no, they're not, nobody's here. You know, you have to find a way to reason and wrap, and not reason even, just to say, okay, well, why don't we change rooms? Or, oh, now they're not because I've done XYZ. Almost like it, it's what you and I would consider full-out lying. It would— it's, you're not being truthful on this event, but this is something that— this is the only way for you to get out of the situation is to just go with it at that moment, to, to basically lie. Say, sure, yeah, you know, somebody might be following you, so let's change rooms. Or, oh, look, I took care of that. And you know, you go along with it because it's— it isn't rational at that point. And so I think many still try and have these rational conversations because they haven't taken a moment or understood how it needs to be a shift in the way that you discuss things with—

there's a term for what you just described. We actually call it— it's a methodology. We call it joining their reality, because what you said is we've already found out through the school of hard knocks and, and trial and error that trying to steer them back into our reality or convincing them that what they believe is not real doesn't work. It just exacerbates the situation. So going along with it is the, um, really the most effective way to handle that particular type of situation.

One thing I will say on the movement behalf that I've also found really interesting, I had studied this in university, but to actually hear this from many of the participants in my program that have a loved one is how music impacts them. And almost at certain points can bring them back for that moment, that snap moment of clarity.

Yeah.

You know, they're able to dance. For my clients and participants that are, that have somebody that used to dance even, they can do full choreographies and they're dancing with their, you know, their loved ones and they seem back for a moment. And this is really powerful to show what movement and what choreography, what dance, what music can do in order to help somebody's brain.

Yeah. This has actually been proven. I can tell you a million stories of what I've personally witnessed along those lines, and you're right, it is powerful. So that's another good tip and suggestion. And what we've discovered is because people's short-term memories are basically short-circuiting throughout the progress of the— or the process of the disease, and they go back into a different timeframe of their life, so another period of their life, playing music for them from the prime of their life is more recognizable and more powerful than if you were playing something that is contemporary from today that they might not recognize. So, you know, like if my parents were from the Depression era, So, you know, some of their favorite music might have been, you know, from that period of time. That would be more recognizable and have more of an impact on them than if I was trying to play Beatles music or something like that for that generation.

Yeah, wow, interesting for sure. But that's an activity that you can also do with your loved one, you know, you can dance with them and then you become physically active And they're physically active, plus you get this moment that's really wonderful with them where they're dancing and, you know, a total win-win. Yeah, it's a win for everybody.

We've probably got a few minutes left, but is there any— this has really been fascinating and I've enjoyed every second of our conversation. Is there anything else that Before we get into how people can actually find you, um, is there anything else that comes to mind that you think we might not have addressed yet that you think my audience would, you know, really benefit from or get great value out of based on some of the stories that have been shared with you of real people going through this in their real lives? And I how, you know, they've tried to manage the situation?

Yeah, I say definitely get support system.

Absolutely.

Yes. And accept support as it comes to you, definitely. And even accept that support to give yourself that moment of you time where you can take care of your health and wellbeing, even if for 10 minutes. And, you know, when we're talking about improving cognition, when we're talking about potentially staving off dementia or Alzheimer's. And when we're talking about exercising to do that, it can take as little as 10 minutes. You don't need to be doing it for hours and hours in your day. You can do something for 10 minutes, something that's easy and that goes with your energy levels. And then, you know, work on that meditation piece that we talked about and that sleep and breath as well.

Well, it certainly sounds like a lot, because a lot of people who listen to my show all over the world are also in this situation and trying to learn as much as they can about the day-to-day challenges that we all face when we are either caring for somebody or have a loved one living with dementia. But it certainly sounds like a lot of my audience would or could definitely benefit from your program. So can you share with us how we can find you?

Yeah, so, um, I think you mentioned it briefly, but I have a free masterclass called the 3-Phase Food and Fitness Formula Every Woman Over 50 Needs to Know. So I will give you the link for that, and that's the free masterclass. You can also see my videos on YouTube or at aliciajoneshealthyliving.com.

This has been absolutely invaluable and incredible, and I've just hung on to everything that you've said. And again, I just cannot tell you how much I appreciate you coming on the show today and sharing all your expertise and wonderful suggestions and tips with my audience. I think that there's a lot of things that they would benefit from that we talked about today. So thanks again, Alicia.

Thanks for having me.

Anytime. We'd love to have you come back. So this will conclude today's episode of the Truth, Lies Alzheimer's Show. I'm Lisa Skinner, your host, and we will be back next week with another new episode. And in the meantime, stay happy, stay healthy, and have a great rest of your week. Bye for now.

Thank you for listening to Truth, Lies Alzheimer's. We hope you found something in today's episode that helps. We understand that caring for a loved one with dementia can be the challenge of a lifetime, but you don't have to do it alone. If you're ready for exclusive access to even more great content and resources, head on over to Facebook and join Lisa Skinner's Minding Dementia support group, where a community of like-minded caregivers Rivers, and we're here to help.