Welcome to It’s my turn to care, we know the challenges you face caring for someone with dementia. That's why each week we bring you tips, strategies, and most of all, support as you navigate your role as caregiver. Let's get started [00:15.6]
Dave: Hello and welcome to, It’s my turn to care: Secrets for the Dementia Caregiver. My name is Dave Parks and I'm a certified senior advisor and owner of Home Care Assistance. And we have a special guest today, today we have Alex Nameth. Alex is one of the first people I met in when I got into this industry and he's been a great resource and mentor during our time of caring for seniors with dementia. He was with the Encore Memory Care Day Center and they have locations in Bedford and Plano and it's really an impressive place to go and see what they can do with folks that are suffering from dementia. So I encourage you to visit one of their locations. But anyway, so our topic of discussion today, Alex is an expert on a lot of things dementia related, but today we're going to focus on the progression of Alzheimer's disease. So welcome, Alex. [01:25.8]
Alex: Thank you. Dave. Good to be here.
Dave: So tell us a little bit about yourself and if you've had a personal journey as a caregiver to someone with Alzheimer's.
Alex: Yup. Thank you very much and excited to be here. And in fact, I do, and many of us in the industry, including yourself, Dave, have experienced that personal journey as well with with a loved one. And while I have a degree in social work, it never really prepared me to become a caregiver. My stepmother had developed Alzheimer's and ultimately passed from it. Shortly thereafter, my dad developed Alzheimer's and four years later passed away from it as well. And as we cared for my dad, we found out how extremely difficult that task was. Being an only child, I was totally responsible for his livelihood. So we learned a lot along the way. We did a lot of things right, a lot of things wrong. We all will. That's just part of dealing with people with dementia. But at this point in time now, I've really kind of dedicated myself to helping people, like your caregivers, whether they be sons or daughters, husbands, wives, friends are the caregivers of people with dementia and try to educate them as best I can. [02:42.8]
Dave: Yeah, because they are so, a lot of people don't understand unless they're kind of in the business or they're in the medical field, kind of what happens as the disease progresses. So are there things that people should look for typical behaviors associated with the disease?
Alex: Yeah, what the industry has done, and depending on who your source is, they've taken the disease and put it into stages. So you'll see some reports where the disease progression is broken down into three sort of sustained stages. Another group is decided they wanted to use five stages and identified behaviors under each of those five other ones have gone as long as seven stages, it doesn't really matter. Today we're going to use the three-stage, I just think that's easier to comprehend.
David: Sure. Yeah, so I guess the stages are probably determined by kind of what is going on in the brain better evidenced by the different behaviors that a client's going through. [03:48.6]
Alex: Yeah, so let me explain, maybe I'll just start with the early stage or some people refer to it as mild Alzheimer's disease. I'll talk about some of the behaviors that the caregivers will see and what's a little bit frightening about these behaviors I'm going to talk about, so I'm going to tell you on the front end that Dave you and other caregivers have experienced some of these same behaviors. Well, it doesn't mean you've got Alzheimer's. Many of them can be age related memory issues.
Dave: Hmm..hmm.
Alex: It just happened as a fact, as our brain ages, we become a little less competent, but yet taken as a whole, they can resemble an early stage person with a true diagnosis of dementia. So when that first one, Dave things like a problems coming up with the right word or name, and my gosh, we've all suffered from that, some people more than than others, but yet we see that symptomatically in early stage folks with diagnosis of dementia. How about challenges performing tasks in social work settings? So a lot of times it'll be workers at work or it'll be sons and daughters that will notice that Dad was a great musician before and all of a sudden he's struggling with the instrument that he's played for all of his life. [05:10.7]
Dave: Hmm…hmm.
Alex: And we kind of write that off, right? And it's just a little lapse, but yet we see that in conjunction maybe with losing or misplacing valuable objects. You know, it's one thing to re to misplace your car keys Dave, you've done that in your life?
Dave: Oh yeah.
Alex: And we all know somebody that has, when we get concerned though, is that when we finally find the car keys, they're in the freezer of the refrigerator.
Dave: Hmm.
Alex: So that's the behavior not typical with age related behavior, but again, with potentially something more serious like Alzheimer's. The important thing Dave with this early stage is that the family do something, you know, the call of action, especially in early stages is really important. Everyone reads that of course there is no cure for Alzheimer's, so you might say to yourself, why bother getting a diagnosis if there's nothing they can do? [06:08.5]
There are things they can do. There are some medications that can help in this early stage, they're more effective early stage than they are later stage. And it also gives the individual the knowledge that it truly is Alzheimer's and they can verify that through testing to a great extent and rule out other things that it could be. And the fact is even as I go through these warning signs, they made it sound like something that a loved one is facing, but it could be a vitamin deficiency.
Dave: Hmm…hmm.
Alex: Could be thyroid issues, could be other medical conditions underlying that are causing these same behaviors. So it's important that Dave, to make sure that we get these folks, these caregivers to get the diagnosis done for their family members.
Dave: But also Alex, isn't it true that like for even for things like your services and for certain benefits and long-term care insurance, a lot of times having the actual official diagnosis kind of helps them get the access to resources that they need. [07:14.2]
Alex: Oh, absolutely. Yeah, absolutely. And you know, as someone that provides adult day services, these are for adults with early dementia, Alzheimer's disease when they come in and they've got a diagnosis because there are multiple types of dementias. So Alzheimer's is one of only of 38 different types of dementias that are out there, so it helps us as professionals to be able to understand a little bit of where the person's coming from and what their behavioral progression will be relative to the diagnosis that they've gotten from their neurologist, typically that's where they come from. Source resources like long-term health care, a lot of people have those policies, many of them are old, dusty sitting in the closet, we need to bring those out.
Dave: Hmm…hmm.
Alex: And by presenting a proof of disease oftentimes some of those services will be paid for through their long-term healthcare insurance company, whether it's adult day services or extended care in nursing communities themselves. [08:16.6]
Dave: Yeah, I've seen policies that will have, if you can't do so many activities of daily living, which is a subject for another podcast. But then it's kind of a, and I've seen some policies where it's a separate line item for dementia. So in other words, in some cases, you know, dementia diagnosis kind of triggers the long-term care policies. So not in all cases, but in some that I've seen. So that's why I just wanted to emphasize how important it is to get a diagnosis.
Alex: Yeah, no, absolutely. And you know, we're hoping we haven't had a new drug come out in 13 years. We know there's a lot of people working on those drugs. So the fact that you've got a, a diagnosis through a neurologist that you see on some regular basis will mean that you'll always be on top of any kind of medical breakthroughs that may prevail. [09:12.4]
Dave: Hmm…hmm. So you talked a lot about the first stage in your three-stage sort of experience. What kind of happens next?
Alex: Yeah, so we see the things that I mentioned and there's more of these, and we're going to have this document posted for the caregivers on Dave's site, we can talk about that later. But we'll see them probably have representation of all these different, there's probably seven or eight of them that I've broken out, but now we go to the middle stage, which is really the longest stage and one of the first questions people ask us is “How long is this stage going to last?” Well, we don't know how long any stage is going to last.
Dave: Hmm..hmm.
Alex: Typically in the first stage we see those symptoms even before diagnosis, sometimes few years, sometimes four or five years before the actual diagnosis. At which point there may be already now into the moderate stage or that middle stage. And typically this is the longest stage and can again last for many years. Alzheimer's is unique, as a disease the individuals just as we are unique individuals, so [10:15.2]
Dave: Yeah.
Alex: You know your mileage will vary and it'll depend on the person. But what we're going to see now is really the symptoms are going to become more pronounced. So forgetting the car keys becomes forgetting a lot more things than just car keys. So we're forgetting events, especially recent events. One of the big things with Alzheimer's disease is short term memory issues begin to expose themselves. So while I may ask you a question and give you an answer to it, you may turn around immediately or five minutes later and ask me the same question again. So again, that's forgetfulness, but to a greater extreme that what we saw in that early stage.
Dave: Hmm…hmm.
Alex: We find that people feeling moody and withdrawn, especially people that weren't that way previously. You know, they are gregarious, they are the life of the party. And now what we find is that they may not even want to go to the party cause they are feeling out of sorts. They were never a moody person and now they are. [11:19.4]
Dave: It becomes a little bit of a vicious cycle, doesn't it? and that it can become a vicious cycle and that if you're, you become withdrawn, maybe you're a little, maybe you're feeling some level of embarrassment, so therefore you don't socialize and you don't get that stimulation and then you're going to feel even more isolated. And it's kind of a, so we really encourage our clients to try to stay as with the children and those that are caring for them to try to keep them as socialized as possible, which is one of the great that I love about Encore is that you're in a social setting for several hours a day.
Alex: Yeah, absolutely. And your neurologist will tell you that the most powerful drug medication you can give to your loved one is socialization, staying engaged. You know, in the beginning they don't know they have a problem. They are becoming uncomfortable in social situations and that's because it's difficult for them to communicate. It's becoming more difficult for them to process information.
So what do you do? You start to isolate yourself back to your point, the more you isolate, the greater the progression of the disease.
Dave: Hmm…hmm. [12:34.5]
Alex: Oftentimes the people we get in our center had been sitting in what I call a barcalounger for the last two years watching TV because her caregiver just didn't know what to do for. What they should have been doing, which no blame here, because we've all fall to it, is getting them more engaged, which is hard to do and you need skills. You need professionals like Dave's organization. They help the caregivers understand what can they do around the house where things that they did previously didn't work. But there are still lots of opportunities in the house to keep the individual socialized and in some engagement.
Dave: Hmm..hmm.Yeah, we tried to get them out of the house as much as possible cause there's so many opportunities like senior centers and taking a walk and just doing anything to try to get them out of that. We have this like, what this, we have this one client, it's kind of interesting… they didn't want to be in the house at all! So for about four hours a day the caregiver would, they would just drive around town and that kept them engaged, they saw different things. So it was kind of therapeutic for the client. [13:45.5]
Alex: Sure. Whatever it takes, right? Whatever it takes to make them happy. You know, you still want to challenge them to some extent, you dont want to stress the individual out. But everybody likes to be challenged. Everybody likes to be rewarded. So we engage in trivia, that’s a favorite, right? Especially things that focused on information that's stored in long-term memory.
Dave: Hmm…hmm.
Alex: For whatever reason within the disease, that's one of the last theories of the brain that's affected by the disease. So while they may not remember where they live, well they can tell you all about world war II.
Dave: Hmm…hmmm, yeah.
Alex: FDR and carry a big stick and they feel good about that because again, they can socialize about that information and feel good about it.
Dave: Hmm…hmm.
Alex: The other one, just one other one in that middle stage is because this affects the care partner too. And again, often times where you guys get involved, Dave, is changes in sleep patterns sleeping during the day and restless at night. And that takes a toll on both individuals. [14:49.8]
Dave: Hmm…hmm.
Alex: So now the care partner is sleeping with one eye open because their loved one now is getting up during the night, maybe walking, you know aimlessly through the house may be trying to elope from the home. So the caregivers gotta be on top of that so they're not getting their sleep at night. Their loved one then is up also during the day seems like sometimes they need less sleep than more sleep and other caregivers working really 24/7 they've got to get help.
Dave: Hmm...hmm.
Alex: This is when Dave, people like yourselves, do an exemplary job in helping that caregiver.
Dave: Hmm...hmm.
Alex: Cause we got to keep them strong again and we don't know the length of this disease and they're going to become more and more basically the only resource available to their loved one as their world gets smaller. [15:40.0]
Dave: Hmm...hmm. Yeah, we run into families though. We'll consult with families and a lot of times is, “I just want you to keep, my loved one as active and moving as possible during the day. So then when I come home from work we can both sleep.” So, but you kind of get two benefits there because you're being stimulated and then you're also getting your sleep pattern. Right, so.
Alex: That's right. That's really healthy for everybody. And again, by keeping them active during the day. So we got to do it. And the caregivers, statistically, Dave, I know you know this, but it's a frightening statistic and that is in many cases the caregiver passes away before the person with the disease because all the stress is moved from the individual.
Dave: Right.
Alex: To the caregiver themselves, so [16:30.0]
Dave: Yeah, I've heard those statistics and I've heard the statistics around caregivers, how much time they have to miss work or unpaid. Sometimes it's paid, sometimes it's unpaid, you know, they may pass up; you know, unfortunately they may pass up a promotion, but it cause it's going to require that they'd be on the road more often. So there's a lot of downstream impacts to the disease, obviously, not just the person suffering. [17:00.1]
Alex: Yeah, no, absolutely. So there is one more stage, Dave, I'll touch on that and then we can wrap up. And it's you know, it's the saddest stage because it's the late stage. Final stage three out of five, it's, you know, the fifth stage, it's the third one for me and it's the seventh one when you have seven stages. But it's really when they lose their ability to respond really to their environment. They have no ability at that point to even carry on a conversation and had really no control all over themselves. So we've got significant challenges here and at that point they need round the clock assistance.
Dave: Hmm…hmm. [17:35.5]
Alex: It's wonderful if you can keep them in their home, Dave provides that service to keep them home long as possible. When that's not possible, obviously there's facilities in our communities that take care memory related for those individuals again that are in that final stage. Swallowing becomes difficulty again, can't communicate often become vulnerable to infections like pneumonia. And while Alzheimer's in itself doesn't kill the individual, the fact that you can no longer control your body functions, the fact that your memory and mind aren't working anymore, obviously you need that work and to keep your heart going. Keep your, your your body systems operational. Those are the things that typically then will, will cause the individual to expire. [18:21.6]
Dave: Yeah, I go back to, I want to touch on a little bit and you talked about how no one really knows how long each stage lasts, which implies we don't know how long the disease lasts. And I had a friend at the bank when I used to work at the bank, she got Alzheimer's probably, I think she was about 56 57 and she passed before her 60th birthday. But then my father had the disease for at least 10 years. As you are talking, I can think through the stages that he went through and then you know, he ended up passing by the fact that his, he couldn't breathe anymore. It just shut down his lungs and he just couldn't breathe anymore. It's a lot of times we get those questions right. Well, how long is this going to last? I think with other diseases, and I'm no medical person, but there's probably a little bit more narrow range or certainly ranges, but it seems to be a broader range with this particular disease. [19:27.0]
Alex: Yeah, no, you're exactly right. You're right on two points. There is very strong empirical data to support that. The earlier the individual gets the disease, like your friend from the bank when they are diagnosed in their 50s we absolutely see a more rapid deterioration of the individual where we are.
Dave: Hmm…hmm.
Alex: Professionals are willing to say this is probably a five year journey as opposed to someone that shows up with it. Like my dad at 85 your dad is an older individual can last a lot longer or someone again in their early seventies as well. But the stages change depending on when you actually get the disease.
Dave: So what would you tell a caregiver if they suspect their loved one might be exhibiting some of those behaviors you're talking about? [20:13.9]
Alex: Yeah, so I mentioned that earlier, right? So the industry is really unified on diagnosis and in the old days there used to be this and the only way you know for sure someone has Alzheimer's is in a lobotomy and not a lobotomy, but an autopsy and to be able to see the, you know, the condition of the brain. That's just not true anymore. There's so much testing out there today, there are a lot of scans of the brain that can be done, that can give the healthcare professional the knowledge that they have, they need, to be able to make that determination with probably 99% accuracy. So Dave, the call to action for those caregivers is to do it sooner rather than later. Now the best news is you go in too early and they say, I don't know that there's anything going on here. I see it as age related behavior and that may be the case. [21:02.0]
The individual may be in a crisis state with something not at all associated with Alzheimer's and get through that and come out the other end as the person that they were prior to the crisis that they were having.
Dave: Yeah.
Alex: So get that. There are medications out there again, limited value, but any value is good, so we want to do that.
Dave: Oh absolutely…absolutely.
Alex: So that's really the call to action. Read, educate. I failed miserably on that! I didn’t even know really what the Alzheimer's organization was. Amazing organization, tons of information on the web, everybody's got internet access. You've got to educate yourself and your neurologists are great, but they're busy doctors there are hold them down. So you're going to have to fill in the blanks by, you know, doing the education, talking to people like Dave and myself and other industry partners to get their input relative to the situation. [21:58.3]
Dave: So it’s like any other subject, right? Just because it's on the internet doesn't make it true. Right? So I would just recommend that you make sure it's a trusted source. And because I get popups on my Facebook all the time about a new cure for Alzheimer's disease or something crazy like that. And I'm thinking that is, it's almost almost feels evil in a way. I mean, why would someone make a claim like that when the science doesn't support it? But anyway, that's my little pet peeve. But you've given us a lot of great information. So if someone wanted to reach out and get some more information about you and Encore, how would they do that? [22:39.2]
Alex: So there's a couple of ways. Probably the easiest way to go to Encore on the web. If you just type in Encore adult day services, Encore day services, you'll get both of our locations, whether you're closer to Bedford or the Plano location, getting a hold of them, call them up, the phone numbers there. Then of course you can do it through the web itself. My information is all posted up there so that's probably the easiest way Dave to reach us.
Dave: Thanks— great!
Alex: And I understand and talking to you earlier, you're going to have you know a specific a spot landing page as well where we'll have this presentation up there and our contact information will be there as well.
Dave: Okay, great. Well thanks so much Alex for joining us on It’s my turn to care: Secrets for the Dementia Caregiver. This is your host Dave Parks, and I'm a certified senior advisor and owner of Home Care Assistance. And we always encourage you to call us at (817) 349-7599 or visit our website, HomeCare AssistanceFortworth.com. And for now I will say goodbye and we will talk to you next week. [23:51.3]
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