Caring for Alzheimer’s Caregivers – The COVID Shift

Sage Aging Episode 3

Caring for Caregivers – The COVID Shift

Recorded April 9, 2020

Host: Liz Craven

Guest: Sylvia Leddy, Alzheimer’s Association

Liz Craven  0:12

Hello and welcome to Episode Three of sage aging. My guest today is Sylvia Letty of the Alzheimer’s Association. With the current COVID crisis in full bloom. the Alzheimer’s Association has been quick to shift to meet the needs of families. If that interests you, you’re in the right place. Sylvia is a program manager of diversity and initiatives with the Alzheimer’s Association with 26 years of experience as a social worker. Silvia has spent time in long term care, home health, hospice and has worked as an adjunct professor. She’s really involved in the community and loves teaching Spanish to seniors as a volunteer. Let’s get started. Sylvia is here from the Alzheimer’s Association to help us get a handle on where this current situation leaves folks who have Alzheimer’s and who are caring for them. But before we jump into our topic, I want to have a little fun with Sylvia and we’re going to do a really quick lightning round. So are you ready, Sylvia?

Sylvia Leddy  1:19

I’m ready.

Liz Craven  1:21

Awesome. Okay, first question. Favorite food.

Sylvia Leddy  1:25

steak.

Liz Craven  1:27

Whoo. Yum. Your red meat person. I love it.

favorite city?

Sylvia Leddy  1:34

Austin, Texas.

Liz Craven  1:36

Next question, dawn or dusk dusk. I really would have guessed you to be a morning person.

Sylvia Leddy  1:44

Oh, no, no, no, no, not a morning person at all.

Liz Craven  1:48

Okay, and your favorite way to spend a Sunday afternoon

Sylvia Leddy  1:54

lounging on my couch in my jammies, and just Reading a good thriller or mystery book, I’d love to read.

Liz Craven  2:05

I’m a reader to yet and on my busy days, I love to listen to Audible. So I’m constantly trying to enrich the brain with a little more. Well, thank you for playing with me. I enjoy doing that. I enjoy allowing our listeners to get to know you a little bit better. So thanks for indulging me in those few fun minutes.

Sylvia Leddy  2:25

Thank you. This was fun.

Liz Craven  2:27

So I wanted to jump into our topic now. And I want to open that by helping people to understand how many people are really affected by Alzheimer’s and dementia. There are 16 million Americans providing unpaid care for others who have Alzheimer’s and that is a really big number. One thing I think most people generally understand about it is that the change in routine and disruption of how things normally go can really throw things out of whack in it. household. Can you set the stage for us about this entire COVID crisis that we’re experiencing, and how that might be affecting families around the globe?

Sylvia Leddy  3:11

Well, first of all, the strategic objectives of the Alzheimer’s Association include increasing concern and awareness, and not just Alzheimer’s but all dimensions. We try to advance public policy. we enhance the care and support. We try to accelerate research. And we also try to grow revenues for support of the mission. Now 16 million. Sounds like a big number. And it sure is, 16 million Americans provide unpaid care for people with Alzheimer’s or other dementias. These caregivers provided an estimated 18.6 billion hours valued at nearly 240 $4 billion. That’s a lot of money. Now, Alzheimer’s disease is the sixth leading cause of death in the United States. There are more than 5 million Americans living with Alzheimer’s. One in three seniors dies with Alzheimer’s or other dementia. And this kills more than breast cancer and prostate cancer combined.

Liz Craven  4:26

Wow.

Sylvia Leddy  4:27

Yes, yes.

Liz Craven  4:28

So one in three people dies from Alzheimer’s

Sylvia Leddy  4:34

Dies WITH Alzheimer’s, not necessarily from the disease, but they die with the disease.

Liz Craven  4:41

That’s a pretty significant number and I can tell you from experience, I have had two family members on my husband’s side who did have Alzheimer’s and it can be a devastating thing for not just the patient but the entire family.

Sylvia Leddy  4:58

Definitely. My connection to the disease was my father. He did not die from the disease, but he definitely died with some type of a dementia. And we did not realize that until after he passed, which was significant for me as a social worker. I never really saw that happening to my dad. And it sure can it is a non discriminatory disease.

Liz Craven  5:26

That’s the truth.

Sylvia Leddy  5:27

Yes, yes. So you mentioned the new norm with this Coronavirus or COVID-19 that’s going on. While this COVID-19 pandemic threatens the health of millions in this country. It does present unique challenges for those 5 million Americans living with Alzheimer’s and their caregivers. Most notably, we know that public health strategies aimed at limiting contact with others is nearly impossible for these people that are living with Alzheimer’s and other dementias who rely on family caregivers and others to live their daily lives. You know, we are seeing pictures of loved ones being visited by their family members through a window dementia and the risk of COVID-19. Most likely dementia does not increase the risk for COVID-19. The respiratory illness caused by the new Coronavirus, just like dementia does not increase the risk for flute. However, dementia related behaviors, increased age and chronic health conditions that accompany that dementia may increase the risk. So for example, people with dementia may forget to wash their hands or take other recommended precautions they just are unable to remember. So it’s important to recognize that the elderly, those with chronic conditions of the heart, lungs, or even diabetes are at the highest risk for complications from the COVID-19 and the flu. So viruses like the COVID 19 and the flu may worsen cognitive impairment due to dementia.

Liz Craven  7:05

That makes a lot of sense. It is certainly true that routines, and trying to establish routines with someone who has Alzheimer’s or dementia can be difficult. And so the washing of the hands and remembering proper hygiene protocol and remembering not to hug someone or not to touch your face, touch your eyes, touch your nose. Those are all things I would think that would be very difficult for caregivers to manage at this point.

Sylvia Leddy  7:35

Definitely, and you know, those living with Alzheimer’s or other dementias can be often under diagnosed or undertreated for viruses like influenza because they’re unable to tell us what is going on. So I actually had a lady in one of my support groups that told me she just felt sad because her husband was unable to go out with his friends. Her husband is suffering from dementia and He and his friends have a routine where they go out and just hang out. And he’s unable to do that right now because of the COVID-19. And he made a comment to her saying that everything has been taken away from him. And she talked about how she feels the same way, especially right now, since we’re trying to shelter in place. So I think a lot of us are feeling that a lot of things have been taken away from us. But it is so much more for somebody living with this disease.

Liz Craven  8:31

I’m sure it is. And I hope that people can take a step back and recognize that and take that a step further. Knowing that there are a lot of people in your own neighborhood, your neighbors who are caring for somebody who has Alzheimer’s or dementia or they might be caring for somebody with another type of chronic illness that keeps them inside. I like to encourage people to continue to check on your neighbors. Call them. Do the grocery run for them. Prepare an extra serving or two of your dinner and take that over to your neighbor to make sure that we can try to help them through this strange time-frame as much as we can.

Sylvia Leddy  9:12

Yes, those are all very, very helpful. Now we also have to consider thinking about the caregiver, the caregiver, if something happens to the caregiver, what is going to happen to the person with the disease.

Liz Craven  9:24

That’s a scary thought.

Sylvia Leddy  9:26

It is a scary thought. And a lot of caregivers often forget to take care of themselves and it is so important for them to do so. We try to tell them that it is not self indulgence for that. About 65% of the time the caregivers will give out before the person with the disease. So we’re just trying to talk to our caregivers give them a few tips. people with Alzheimer’s and other dementia they forget to wash their hands or to follow precautions to ensure safe hygiene. So we’re just encouraging our caregivers to be extra vigilant in helping them practice safe hygiene. Sometimes doesn’t matter how many times you explain or how slow the steps are, that disease makes them unable to remember. So, right now, it is very important for caregivers to remain vigilant for any type of flu like symptoms.

Liz Craven  10:26

And so what are some other strategies that we could share with caregivers to help them adjust to this new normal, their routines certainly have been disrupted. Are there some things that they could focus on within the home to gain some of that normal day to day, if you will?

Sylvia Leddy  10:50

Well, we are encouraging a lot of social media right now. We have technologies that allow us to visit with our loved ones via iPads, FaceTime, things like that. So we recommend that we recommend telephone calls. They may not remember the relationship to the person they may be talking to, but they always remember that that person is their person. Right now, of course, we’re not recommending any visits. But in that same line, I wanted to tell you that effective yesterday, there was a release by the state of Florida’s project, vital, and this is going to connect Florida seniors to their families through virtual technology to help mitigate the effects of social isolation. This is a partnership that is going to be happening between the Florida Department of elder affairs and the Alzheimer’s Association to bring new communication abilities to people living in assisted living facilities. And that was just released. Yesterday April the eighth. Would you like to know a little bit more about that?

Liz Craven  12:04

I would but first let’s take a quick break for our Sage Ager segment and we’ll be right back.

This is where we would normally introduce you to our featured Sage Ager, but this week we wanted to help you understand exactly what a sage ager is. The word Sage is defined by Merriam-Webster as wise through reflection and experience. A Sage Ager appreciates the gift of every day in every experience. They harness the gifts of a life well lived and they pass that wisdom to others in their everyday lives. A Sage Ager is not defined by a number, because in truth, we all begin our aging process the day we’re born, and there’s wisdom to be shared by People of every age and every stage of life. Do you know a Sage Ager? Or are you a Sage Ager yourself? Well, we’d love to hear from you and our listeners would to to drop us a line at info at sageaging.us or connect with us on Instagram and Facebook. Now let’s get back to the show.

So let’s pick up where we left off before the break, Sylvia.

Sylvia Leddy  13:31

Okay, so Governor desantis and elder affairs secretary Richard grudem announced the launch of project vital This stands for virtual inclusive technology for all which utilizes virtual technology to relieve the difficult symptoms of social isolation for residents in ALFs or assisted living facilities and nursing homes. The Florida Department of elder affairs is going to be partnering with us the Alzheimer’s Association and other industry leaders to distribute tablets nationwide to residents in order to bring families together virtually and just to help mitigate feelings of isolation. So what we are going to do is during the initial pilot phase, we are going to be working with about 150 care communities. We’re also going to be supplying two tablets per community, along with virtual training on how to use the equipment, the platform any applications, as well as proper sanitation of each tablet from resident to resident. Isn’t that amazing?

Liz Craven  14:36

That is so exciting. Every conversation I’m having right now, that is the challenge. This morning in my community, one of the hospitals put together a family drive by parade and they drove by all of the assisted living communities who had their residents at the windows, some of them standing out in front of the building on the patio. Goes every configuration that they could to make sure that there were safe distances between people, but that they could see the family parade. So it was led by hospice and the families drove in their vehicles behind and we’re waving out of the windows at the residents. It was beautiful and wonderful. And I think that this idea of putting tablets in the hands of these folks so that they can face to face with their loved ones will make such a huge difference, because I think we’re all missing that. We’re missing the hugs. We’re missing the kisses. We’re missing, just loving on one another. But that’s the next best thing is to be able to see the face of the one you love. So that is a wonderful program. Thank you so much for sharing about that. We’ll make sure by the way for listeners, all of these things that Sylvia is sharing with us. I’ll make links to all of these pieces available in the show notes so that you can have access to them.

Sylvia Leddy  16:00

Yes, thank you. And I just want to say that, you know, although we’re going to be doing this customized tablets that are going to be facilitating these connections, we are going to be using them in the future as well, because we really don’t know what the future is going to bring. So, yes, right now we’re all sheltering in place, but who knows what’s going to happen? So hopefully, with the first initial phase, we will make a difference and kind of prevent this isolation, especially with those with the disease. Because usually in the last stages, the five senses become the most important thing. And they’re also used to communicate. So sometimes they are unable to verbally say something, but just by your touch, they know that you’re there and that you care. So it’s very, very important.

Liz Craven  16:54

That has beyond made my day to hear that we can facilitate making sure people get connected where they need to. So now that we’ve talked about some of the things that we can expect caregivers are going through what kind of support is available? I know a lot of times caregivers plug into physical support groups that they go to. Are there avenues of support available now that we are staying home?

Sylvia Leddy  17:24

Most definitely. We have about 200 support groups here in Florida with this Coronavirus, we are unable to meet you know, these support groups are for caregivers. Those caregivers need us specially at a time like this. So, with this sheltering in place, we came up with the idea of rolling out a new dial in support group. So instead of meeting at the regular places where we usually meet, we provide the caregivers with a telephone number and a passcode. So that they can join this up Group which they attend at their regular time and date, they call in this particular telephone number, they enter their passcode. And it’s sort of like a conference call. And so this new telephonic support group calls, they offer the caregivers the opportunity to receive that support and any information they need without leaving the home, especially now when we are sheltering in place. Of course, you know, they are unable to meet in person, a lot of the caregivers, they get that break when they attend their support group, but this is the next best thing that we could come up with.

Liz Craven  18:36

Absolutely. There’s nothing that can replace a period of respite. But I think knowing that they’re not alone and being able to talk through some of what’s going on for them is immensely helpful.

Sylvia Leddy  18:51

Yes, we have received some very positive responses from our caregivers. Some of them have found some difficulty In the sense that they really don’t want to talk in front of their loved one. So some of them have found other alternatives where maybe they go for a walk while participating in the telephonic support group, or some of them will usually call a friend and go over to the friend’s house during the telephonic support group. So, there are other alternatives for those caregivers that are concerned about talking about what they’re going through at this moment.

Liz Craven  19:31

That’s terrific. Those are all really great ideas. So along the same lines as support, I believe you have some new virtual education programs that you’re rolling out.

Sylvia Leddy  19:43

Yes, we do. The programs department with the Alzheimer’s Association. Our goal is to educate the community and our constituents about everything that has to do with Alzheimer’s and dementia. And of course now with this Coronavirus keeping us in Inside, we are no longer able to do that. Usually we present in front of groups, any type of groups, schools, institutions organizations, however, we’re no longer able to do that right now. So what we decided to do is bring what we call our brain bus. Our brain bus is a van and a Winnebago that we have that goes throughout the state of Florida. They go to those constituents that are unable to come to us to our presentations. So what we’re doing is a virtual brain bus. The constituents are unable to come to us for education. So we are providing virtual education classes. We have several classes being offered on Tuesdays and Thursdays, and anybody who is interested in some of these classes, we are more than willing to present this to you. You can visit us at our website alz.org and If anybody’s interested in attending any one of these classes, just call our helpline. They give you a meeting ID code with a passcode. They tell you what time the education program begins. And we do this virtually. So you actually still get to see the presenter present and you still get to learn everything that we have. We are rolling that out. As a matter of fact, we began that last week. And another thing that we’re also going to be providing is like caregiver college program. We don’t know how to be a caregiver, there’s nowhere to go for us to learn how to be a caregiver. So we provide a caregiver college that you attend to learn new information on how to deal with people that have the disease. So on this caregiver college, we are providing for example, we have a class that is called dealing with difficult behavior related to dementia and other closet is being presented is effective communication strategy. Because you know that dealing with people with Alzheimer’s so any other type of dementia is different than your regular caregiving. We also have one of our attorneys in the area Jason Penrod. He is one of our volunteers and he is also presenting a class on legal and financial planning. So if you need to know anything about a power of attorney, what a DNR is, what a living will is, what do you need? Where do you go? Who do you talk to, we are also providing a class on that. So again, for any of our classes, you’re more than welcome to visit us at our website@az.org or you can also call our 24 hour helpline that is available at 1-800-272-3900.

Liz Craven  22:46

Those are all terrific resources. Well, let me ask you are these programs and online resources available to people all over the country or just here in Florida?

Sylvia Leddy  22:58

They are available now. wide.

Liz Craven  23:01

Fantastic. That’s really great. I know we have a lot of listeners who are outside of the state of Florida. And I’m happy to know that those resources are available. And again, I’ll make sure that I put the links for all of these things mentioned into our show notes so that everybody can easily find them.

Sylvia Leddy  23:19

Thank you so much this it has been such a pleasure to get the word out. Because a lot of people, even before this pandemic, didn’t know that we even existed, didn’t know that there is a 24 hour helpline. This helpline is available for you to ask any type of questions. It’s available for any resources that you may need. It is available with Master clinicians who are able to provide information in over 200 languages. We can also help to de escalate any situation sometimes we find ourselves in a situation that nothing that we tried has worked and we are at the end of our rope. Sometimes just by picking up that phone and calling our helpline we can help with that.

Liz Craven  24:05

Thank you so much. I really feel like we’re going to have to do this again. As we move along and dig in deeper to different topics. I know that the knowledge that you have and the resources that you have to share will be a benefit. So I hope in the future, if we ask you to come back again, you’ll be willing to,

Sylvia Leddy  24:25

Most definitely, I just want to thank you for giving us the opportunity in this platform to get the word out to everybody that we are available 24 seven, during this pandemic, before and after and in the future, whatever that holds.

Liz Craven  24:42

Thank you so much, Silvia, for joining us today.

Sylvia Leddy  24:46

Thank you, Liz, I appreciate it.

Liz Craven  24:51

If you enjoyed this episode of Sage Aging, head over to iTunes or Spotify, or wherever you get your podcasts and leave us a review. We’d also love it if you would share it with a friend. Be sure to connect with us on Facebook and Instagram. And don’t forget to check back next week for a new episode of Sage Aging.