Baptist HealthTalk

Alzheimer's Disease: What Caregivers Need to Know

June 16, 2022 Baptist Health South Florida, Dr. Jonathan Fialkow, Dr. Khalid Hanafy, Dr. Gillian Generoso
Baptist HealthTalk
Alzheimer's Disease: What Caregivers Need to Know
Show Notes Transcript

Alzheimer’s Disease is a brain disorder that slowly destroys memory and thinking skills and eventually robs people of the ability to do even the simplest tasks. Loved ones and caregivers of Alzheimer's patients face many challenges, but help is available. Becoming knowledgeable about the disease is the first step.  A panel of experts joins host, Jonathan Fialkow, M.D., to discuss what is known about Alzheimer’s and to share resources available to help patients and their caregivers.

 Guests:

The Alzheimer's Association helpline is available toll free at 1-800-272-3900

Announcer:

At Baptist Health South Florida, it's our mission to care for you when you're injured or sick and help you stay healthy and fit. Welcome to the Baptist HealthTalk podcast where our respected experts bring you timely practical health and wellness information to improve your family's quality of life.

Dr. Fialkkow:

Welcome Baptist HealthTalk podcast listeners. I'm your host, Dr. Jonathan Fialkkow. I'm a preventative cardiologist and lipidologist at Baptist Health's Miami Cardiac and Vascular Institute where I'm also Chief of Cardiology at Baptist Hospital and the Chief Population Health Officer at Baptist Health.

Dr. Fialkkow:

Alzheimer's disease is a brain disorder that slowly destroys memory and thinking skills and eventually robs people of the ability to do even the simplest tasks. While it's not the only cause of dementia, it is the most common cause among older adults. On a recent episode of Baptist Health's Resource Live program, which I had the pleasure to host, a panel of experts brought us up to date on what is known about Alzheimer's and how it affects the lives of patients and caregivers.

Dr. Fialkkow:

My guests were Dr. Khalid Hanafy, Chief of Neurology at Marcus Neuroscience Institute, a part of Baptist Health, Dr. Gillian Generoso, an internal medicine physician with Baptist Health Primary Care, and Keith Gibson. Keith is the Director of Diversity, Equity and Inclusion at the Alzheimer's Association. Let's listen in.

Dr. Fialkkow:

Keith, let's kick it off with you. We know you're here to tell us about the amazing work you do with the Alzheimer's Association, but I know you also have a personal experience with this terrible disease. Why don't you start by telling us about your personal experience regarding Alzheimer's?

Keith Gibson:

Absolutely. It is my honor, privilege and pleasure to be able to share my personal testimony experience. I was a caregiver for my brother, Ronnie, who died at age 54 with vascular dementia. I tell you that to get that diagnosis was a bit of a challenge. What triggered my brother's vascular dementia, he suffered two major medical events. He suffered a massive heart attack and a stroke at the same time. The heart attack left his heart severely damaged and the stroke left him paralyzed on his left side. At that time, that seemed to be only the focus of the doctors, just the medication of the heart condition and the physical rehab. But I knew that my brother had changed. There was a difference in him. And so I was talking to the tending physicians. I said, "Listen, we need to have a complete workup regarding my brother."

Keith Gibson:

And they looked at me like I had two sets of heads on my shoulders. And so it was a bit of a challenge for them to get referrals to a neurologist and to a neuropsychologist so that we can get to their probable diagnosis of vascular dementia. It's hard. I mean, as a caregiver, I'm not going to lie and say it was all easy. I cried a lot and I also cussed a lot, not in front of my brother of course, but it was just very painful for me to really see my brother change right before my eyes. I mean, I'm the youngest of nine. And so my brother Ronnie was very special. Of all my siblings, he was my favorite sibling and to now see him in that state that he couldn't do the things that he used to do, it was a bit of a challenge.

Keith Gibson:

And so I had to make that adjustment. And early on, I was too busy focusing on the disease versus the relationship. And the moment I was able to pivot from focusing on the disease to the relationship, I became a better caregiver and it helped my brother to not focus on the disease and we just accepted where he was at. And that really made it a big difference. My brother died from a heart attack. He suffered a heart attack because he had a panic attack that triggered his cardiac arrest. But I look at the work that I do today with the Alzheimer's Association and it gives me an opportunity to continue to keep my brother's legacy alive and to provide hope for our caregivers and persons that are living with the disease.

Dr. Fialkkow:

I mean, thanks for sharing that heartfelt story. And you touched on a lot of components which I think very relevant and we hope to go through here. First, the fact that here's a case of dementia in a young person. We sometimes think of it as an old person's disease. You speak of the medical systems and how it's not really geared to support necessary all the needs of the individual. But also then you talk about the impact on the family. And I think these are all things that, to your credit, you've harnessed your experiences for the better and we'll have an opportunity to talk about the Alzheimer's Association as well. So again, thanks for kicking that off and I think it really sets the tone for the conversation to follow.

Dr. Fialkkow:

To that point, Khalid, if you would, let's talk about Alzheimer's in particular right now. What is Alzheimer's for the best of your ability to explain and what are the more common understood causes of Alzheimer's?

Dr. Hanafy:

Sure. Well, I mean, it's an irreversible brain disease that destroys memory thinking and the ability to carry out daily activities. And all of these things will get worse over time. In terms of the cause, researchers believe that there isn't any one cause but that it's probably multifactorial where there are many things that probably contribute to it like what your genetics are, your lifestyle and your environment.

Dr. Fialkkow:

So, I mean, what'd you say? Memory, thinking, ability to carry out daily activities. I mean, that's the kit and caboodle of the higher level functioning of human beings, so clearly very, very significant components and aspects of Alzheimer's that affect our daily living and beyond. To that point now, Gillian, let's bring you into the conversation. As a primary care doctor, do you find that you will recognize early Alzheimer's signs in people, or more commonly people come to you saying, "I'm feeling X, Y, and Z," and then you pick up Alzheimer's? So second question would be, and what are those signs and symptoms of Alzheimer's that we would generally tell people to pay attention to and when to seek help?

Dr. Generoso:

So I would say that actually most typically I see family members pointing out changes that they've seen in their loved one. And one of the first things that they'll notice is their difficulty in forming new memories, recent memories, or problems with name recall. So patients who've known so and so all their lives and all of a sudden they can't name them, so it's changes like that. And then other times there's also a change in personality, just some subtle changes in personality or mood and also judgment. So for example, maybe leaving the stove on, very classic, so changes like that. And then the first step really towards evaluation is to see the primary doctor. And then typically an office will do just a short little cognitive test and then maybe do some workup with labs. So that's the initial step.

Dr. Fialkkow:

When you say family members usually recognize the changes, which I think is a great piece of information to share, do they bring the person in or does the patient come in and it's the thought of, "I'm concerned they have Alzheimer's," or it's just, "Something's going on. What do you think?" I mean, is it in people's mind as something to be anxious about or concerned about, or it's just really more the symptoms that are driving them to come in?

Dr. Generoso:

It really depends. Sometimes it is the patient who's concerned about, "I'm having more problems with recalling and I'll talk to my daughter and we're talking over the phone and she tells me, 'We just talked about that. How come you can't remember?'" So sometimes it is the patient, and then sometimes it is a family member that takes the patient in to talk to the doctor about it.

Dr. Fialkkow:

Keith, back to you. We know that Alzheimer's significantly impacts the sufferer of Alzheimer's. You did mention that you were the caregiver for your brother, what resources weren't available. For a caregiver, a family member, a loved one or whatnot of someone who's recently diagnosed with Alzheimer's, any particular advice you'd give as they're learning this new reality of being involved with and giving care for someone who has Alzheimer's?

Keith Gibson:

That's a great question. There's two pieces of advice I would highly recommend. One is being open to being a change agent, being willing to change, because your loved one has changed. Secondly is to be a good manager. And when I say manager, managing one's emotion so that they can manage their loved one's care.

Dr. Fialkkow:

Do you find that people's first responses to someone with Alzheimer's might be wrong or might benefit from higher levels of understanding of the disease process? In other words, when the caregiver becomes more educated, they're able to manage better the patient as well as themselves?

Keith Gibson:

Absolutely. Absolutely. Because one thing, there's a lot of misinformation that's out there. And so by them going to a trusted source that can provide information that's evidence-based, they're going to be able to be, like I said, that good student and that better manager. Because again, one of the things you got to manage is your emotions. Like I said earlier, I cried a lot and I cussed a lot because I was frustrated.

Keith Gibson:

But at the same time too, focusing on the relationship, the men in our family, it's not uncommon for us to hug and kiss each other. And the best medicine that's readily available is the emotion of love. They respond to love. If you just simply tell them that you love them. I mean, there will be days that my brother would come back and say to me, "I was bad, wasn't I? And I want to tell him, "Oh my God, how bad you were." But I didn't. And I said, "You know what? I love you so much." And that just disarmed him. And he says, "I love you, too." And we would hug and kiss each other. And just to let him know it doesn't matter. We're in this thing together.

Dr. Fialkkow:

Now did you get to that point based on your learning? I'm sure. And again, we'll have time to talk about. It's frustrating when you want someone to perform a certain way. You expect them to respond a certain way and they just can't. So when you just said that higher level of hug and patience and love, was that something you were taught or you learned, or was that just something innately you came to in your own on your own?

Keith Gibson:

Well, I'll be very honest. Early on in my caregiving, I was a terrible caregiver because I was too busy focusing on the disease. Because they always say a little bit of knowledge is dangerous. Well, I had a lot of knowledge about the disease. So I figured I'm going to apply that right to my brother. And you know what? That made it so much difficult. Because again, like I said, I was too busy focusing on the disease and the fact that there was no cure. So I was trying to manage it from that aspect. But then when I just simply threw all that out the door and I said, "You know what? This is my brother. I love him. He needs me right now. So I'm going to focus on him as being my brother and that connection."

Keith Gibson:

That's what helped me to be able to be the best caregiver that I can possibly be. And then that's what I truly was at the very end. There would be times when my other siblings would come around us and we would be just having a ball and they were like, "He's got Alzheimer's." And I'm like, "And so what? He's still a human being. He's still our brother. Relate to him." Even though he can't relate to us in this moment, but there are points of references to the past that we can walk down memory lane with them on and that makes them feel like they're relevant and that they're important.

Dr. Fialkkow:

Appreciate, again, those heartfelt comments and even recommendations. Khalid, now were talking about Alzheimer's as a particular form of dementia. We know people are very attuned to it. Forget something, it's, "Oh my God, is it Alzheimer's?" Make a little joke sometimes. Speak a little bit about what could be normal forgetfulness, if you will. Gilian mentioned forgetting a name or forgetting a recent short term experience. Is that always a sign of dementia or are there other normal aging process type of changes in our mental state which would be less of a trigger for concern?

Dr. Hanafy:

If you forget where your keys are, that's okay. And that's part of actually what we probably all do many times per day. But if you forget your keys and they're in the freezer, that's a problem. Because that means that you actually placed your keys in the freezer and thought that was a normal place for them to be. Again, confusion about the day of the week or time of the day. I think today is Tuesday, but I mean, generally I can be off by a day. These kinds of things are okay. I can tell day versus night, those kinds of things. And because everyone has a watch or phone, it's very easy to get external reinforcement about those things.

Dr. Hanafy:

But if you don't know what month it is, what season it is, these are problems, other things. So if you're at the mall and you forget how to get to the ice cream shop or something like that, because malls are huge now, that's okay. But if then when you get back into your car, you forget how to drive home. That's a problem. So again, it's just these ideas that we do expect to not be quite as sharp in our more mature years. But if you forget to the point where you can't perform normal activities of daily living, then that's when I would start to get a bit more concerned.

Dr. Fialkkow:

I appreciate that even in terms of the things that I could experience that would be considered normal, if you will. How about the aging component? Do those things, do we notice them more as we get older? Or do we know that as we get older, there might be a concentration deficit or you might actually have, like I said, put the keys down. Is it, "I forgot where I put them," or, "I just wasn't even paying attention because I had so many things in my head"? Is that an aging issue or is it just something people are more aware of when they get older because they're a little concerned?

Dr. Hanafy:

I think it's hard to tell. It's probably some from column A and B. I mean, we know that this is a very important disease that we need to be in tune with as Keith brought up. So I think that there's a lot of positive reinforcement out there to be sure that you know what are the signs of any form of dementia, Alzheimer's, vascular, this and that. And this is why we think that it's part of having this disease. What happens over time is that the brain cells in your brain do start to build stuff up in them and this does cause problems. There are people that build stuff up in their brain faster than other people. So it's the two things. I mean, it's good to note. Just like with anything, hypertension, myocardial or heart attacks. Like all of these things, you're expecting them later on so you're more attuned to them. But it's key, too, to know that in your more mature years, just be a little bit more careful, well, just try to take care of yourself.

Dr. Fialkkow:

So that's a great segue to Gillian for a question to you. It was mentioned we don't exactly know what causes Alzheimer's. Are there certain things associated with the risk of Alzheimer's? Again, talk a little bit about heredity. Are there any lifestyle things? And maybe even other forms of dementia, what are the lifestyle components that we may do to decrease the risks of dementia as Alzheimer's if possible, or others as well? So speak a little bit about what may predispose people to Alzheimer's and what one can do to try and decrease the chance of dementia as one gets older.

Dr. Generoso:

Alzheimer's is usually multifactorial. So there is a genetic component. So you're more at risk if you have a family member who's affected, but also lifestyle has a lot to do with it. So the research tells us that there are certain risk factors associated with Alzheimer's. And those are things like hypertension, prior stroke, diabetes, being obese or overweight. And again, some of those are related to diet, whether or not you're physically active. And those are things that we may have some control over during the course of our lifetime.

Dr. Fialkkow:

So again, the general healthy lifestyles are multifactorial in their benefits. And as you said, eating right, exercising, blood pressure, cholesterol control, all those things play well for vascular dementia, especially. But if a family member has Alzheimer's, does that have any impact on an individual's risk? Again, in terms of to promote a healthier lifestyle, et cetera, is there a genetic component?

Dr. Generoso:

There are some genes that have been identified as causing Alzheimer's that can be passed on, but it's not a hundred percent that if you have a family member, you're certainly going to get it. Although the risk is certainly higher.

Dr. Fialkkow:

Keith, we'd be remiss if we didn't give you a chance to spend a little time talking about the Alzheimer's Association. I think, again, the points you make are great. I saw in your particular evolution, like you said, I think at the beginning you're concerned about yourself and how you are affected by your brother. But then you transition in how am I here to help him? So if you could speak a little bit about the Alzheimer's Association, what are the resources available to caregivers and patients with Alzheimer's, and specifically what you see in that caregiver evolution in patients with Alzheimer's?

Keith Gibson:

Absolutely. And when it comes to care and support, I mean, we have some amazing programs. In terms of our helpline, our one 800 number, the 1-800-272-3900 is the most important and most impactful go to. We have programs that a person can attend now in person or online through a webinar, or they can sign up and get programs that they can watch on demand. I mean, as a caregiver, it's hard to really educate yourself right in the midst of caregiving. But, say for example, at night when your loved one is sleeping, you can plug into alls programs anytime and be able to watch educational, family, consumer education programs that will help you.

Keith Gibson:

And again, another resource is attending a support group. That's going to allow you to hear from other caregivers who are experiencing the same challenges, and you may able to pick up information from them that can help you in your caregiver journey. Because it's so important to realize that you're not in this by yourself. But being part of a support group, you will develop a relationship with an extended family of caregivers who will be able to be there for you to talk to help you as you go through that.

Keith Gibson:

And also learn about research. I mean, this is an exciting time when you talk about what all that's going on in the world of research. That gives people hope. Right now, I'm super excited to share that we have a health initiative that the Alzheimer's Association and the Department of Elder Affairs have teamed up with to create a dementia friendly Florida, where we can educate people about knowing the 10 warning signs and to know about the resources that are readily available. The moment that you see something going on, please don't dismiss it. Get it checked out. And if you go to your doctor and you tell them, "Hey, I'm experiencing some memory loss," and they dismiss you by saying, "Well, there's nothing I can do. That's just the normal part of aging." Please seek a second opinion because then you want to be able to put yourself on the path that's going to help you to get the right information that you need, that you can develop a more proactive approach so that you can be proactive versus being reactive.

Dr. Fialkkow:

To our listeners. If you have a comment or a suggestion for future topic, please email us at baptisthealthtalk@baptisthealth.net. That's baptisthealthtalk@baptisthealth.net. We'd love to hear from you. Thanks for listening and stay safe.

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