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: Okay, so welcome to It’s my turn to care: Secrets for the Dementia Caregiver. My name is Dave Parks and I'm the owner of Home Care Assistance and we're located in the Northern part of Tarrant County in the great state of Texas. It's our goal to bring you tips, strategies, secrets, and the support you need as you care for someone suffering from dementia. I sincerely consider it an honor and a privilege to host this podcast and bring you some of the most knowledgeable, insightful people in the industry. So today we have a very special guest from the Alzheimer's Association, Shelly Young. Shelly's a graduate of one of my favorite universities, Abilene Christian. I owe them a lot of money, I sent three kids there.
Shelly: Wow.
Dave: So, I know she must be a smart woman. Anyway, so she studied business and later went on to receive a Master of Science in Gerontology and she's worked in nursing homes, assisted living and independent living. And she currently serves as the Program Manager for the Alzheimer's Association. [01:28.1]
And today what we want to do is talk about the Alzheimer's Association and what a great resource it is! A lot of times people ask me, I was just diagnosed with Alzheimer's disease, what should I do now? And a lot of times I say my first step would be to call the Alzheimer's Association and find out more about the disease and the resources that they have, available to help you on this journey. So anyway, Welcome, Shelly.
Shelly: Thank you, pleasure to be with you. Obviously for me it’s my job, but working for the Alzheimer's Association is also my passion and one of the main reasons that I am associated with this cause is because I have been a caregiver for my mother and for my father. But my mom in particular and did have Alzheimer's disease. So I decided at some point that I was ready to do something different and make a difference. And so the Alzheimer's association of where I landed. [02:31.1]
Dave: That is great. That that’s the, that’s so common in our industry is that people, a lot of times people get involved when they, they've kind of had their experience in my, both of my parents, suffered from Alzheimer's disease. So I can relate to why you got into this part of the business. So tell me a little bit about what Alzheimer's, what should we talk about? Why should we talk about Alzheimer's disease?
Shelly: So obviously for both of us it's personal, but interestingly more than 5 million people just here in the US have Alzheimer's disease and the estimates are about 16 million unpaid caregivers of people with Alzheimer's. We also know just recently, the Alzheimer's Association actually every year releases our report called Facts and Figures and it's the most current information on Alzheimer's disease. It covers information related to States and the cost of it. And the most recent facts and figures just came out this month in March and also noted that Alzheimer's is the sixth leading cause of death in the US and it actually kills more people than breast cancer and prostate cancer combined. [03:54.2]
So I just think it's, it's relevant, it affects so many people. The longer I'm in this more and more of my friends and family members are also being affected and becoming caregivers. And so I just, I feel like it's everywhere and it's something that we need to be willing and able to address, for the people we care about.
Dave: Yeah, that's to me, that's one of the most impressive statistics is that— it kills more people than breast cancer and prostate cancer combined. Cause if you think about all the attention that those two dreaded diseases, you gotta, got to give them credit, the American Cancer Society and that gotten all that attention; but we failed to realize how deadly Alzheimer's disease is. I mean there's all these statistics on hundreds of billions of dollars and millions of people and, but the death rate is really astounding to me. So can you talk a little bit about the association? Maybe give a quick history. [04:56.7]
Shelly: Sure. So I find this really interesting, you know— we started periodically hearing bits and pieces about Alzheimer's even as far back as the 1970s and then in the 80s we were really becoming more aware of it. But in the Chicago area back in 1970 a man named Jerome Stone was a caregiver for his wife. She was diagnosed in 1970 and so he just started noticing that there was a lack of support for individuals who were being affected. A lot of people we didn't even know really what to call Alzheimer's, it was just coming to into our lingo and we were hearing bits about it here and there. And so he, he formed an, at the time, an informal support group and the people who were really struggling to care for their loved ones. And then in 1980 the Alzheimer's Association was established by Jerome and several caregivers. And it's just obviously from there. And now we have more than 2000 employees nationwide in a variety of jobs, including doing care consultations and education programs and fundraising as well. So it's really grown over the years. But it was birthed out of that informal support group that began in the 1970s. [06:21.0]
Dave: But a lot what happens in Tarrant County is driven by a local office, right?
Shelly: That is correct. Yeah. Thank you for asking that. So the association is a national organization, but we have over 60 chapters throughout the nation and we serve our local communities, which is good because every community is different.
Dave: Hmm….hmm.
Shelly: And has different needs. And so our leadership is very conscious that we are not a one size fits all organization, but at the same time or able to offer a lot of the same support throughout the country. And that's nice because you may live in Tarrant County, but you may have a loved one that's in Seattle and they're still able access the same types of supports.
Dave: Yeah, because you have a lot of those local support groups, which I know you're going to talk about in a minute, but they're led by local people, people that live in this community. So I just think that's real important to have kind of that someone who understands what's going on in this part of the world.
Shelly: Absolutely.
Dave: So yeah. So I'm sure that you have some sort of mission. So what's kind of the goal..the mission of the Alzheimer’s Association? [07:33.6]
Shelly: Well first let me share our vision. We have a vision statement and that is to create a world without Alzheimer's and all other dementias. And so I actually think this is also brings up one, another thing I'd like to share with folks is that we are called the Alzheimer's Association, but we serve people no matter what type of dementia.
Dave: Okay.
Shelly: They or their loved one may have.
Dave: Hmm..hmmm.
Shelly: In some cases we have clients that we serve that never actually get a diagnosis. And so people who are dealing with all different types of dementia or memory loss, that's kind of nondescript, we're here to serve them. And so I wanna, I want to make sure that folks understand that we.
Dave: Hmm..hmm.
Shelly: We do not discriminate, so to speak, based on the type of dementia; we're just here to serve. And so our mission statement, actually, I'm gonna read this to you cause I want to make sure to get it right. It actually just recently in the last two months, has been updated. [08:33.8]
`So it now reads, “The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction in early detection and maximizing quality care and support.” So that really has kind of three different prongs.
Dave: Right….Yeah, so that sounds really great; but a lot of times it's hard to understand what you're really doing. So maybe you can kind of break it down for us out here in podcast land.
Shelly: That would work…we're actually going to start at the end of the statement. So one of the prongs of our mission statement is that we are focused on maximizing quality care and support. And so the question is how do we do that? And we have a variety of ways that we serve our community. And this is true no matter what part of the country a person may live in. [09:37.5]
So probably the single most helpful tool that we have to our clients is what we call our 24/7 helpline. And helpline is great, it's actually staffed by people who are masters level counselors and social workers and people who have a strong background in helping and they also understand dementia. And so this phone line is staffed around the clock primarily because if you have dementia or if you are caring for someone who does, your job doesn't stop at 5:00 PM when I go home, you know, caregiving really is around the clock job and so folks can call our helpline anytime of the day or night and they can get help with anything from finding out about positions that serve their area or sometimes I have received calls through our helpline or we were literally on the phone with clients for an hour or more and they call about a variety of things. [10:43.9]
It can be concerns about a loved one that hasn't been diagnosed yet, so we can talk them through and how they might go about getting a diagnosis or even convincing a loved one to go to the doctor. We talk a lot and when people call our helpline about behavioral issues, driving people who are becoming particularly agitated, possibly aggressive. And so we do just cover a variety of topics with those call our helpline and we can go deep with the consultations. And again, that number you can get through 24/7.
Dave: So Shelly about how many calls did you take last year?
Shelly: Oh…You know, I don't know I should wait for that.
Dave: Okay.
Shelly: I don't know
Dave: Okay. Cause I've seen that number in the past and it was a really impressive number. But anyway, so I heard, there's other support you provide as well. [11:34.2]
Shelly: Absolutely. So another type of support is our Education Programs and people can go online and do education programs, but we also have in person workshops. We go out into the community; we work with churches and AARP chapters in the senior centers to bring education to the community. Most of these workshops usually run about an hour, hour and a half, and they're on a very specific topic or aspect of dementia and dementia care. And then we also do large conferences. We actually host one and it typically falls in March. It's called The Spring Symposium. And we invite caregivers and healthcare professionals to come; and we, you usually have around 600 people that come to this event. It's a full day of education with breakout sessions and we really go deep with the variety of issues that affect people who are impacted by different types of dementia. [12:34.5]
Dave: Hmm...hmmm
Shelly: Another resource that I, I think is wonderful is our Support Groups and we have those all over our service area. Those are groups that meet in person and we do also have telephone support groups for people can’t get out and about, but who would be able to call in. And those are at different times of the day because we know people need some flexibility, so that's a wonderful resource. And those are facilitated by trained volunteers, so all the things that I'm talking about are also helped to move forward by the wonderful volunteers that we get support with.
Dave: So I've spoken at a couple of those support groups and that really is…cause they're really hungry for information, plus they're also really there to help each other. [13:27.1]
Shelly: Yes.
Dave: And it made us really kind of a neat opportunity to experience that because you do have kind of a professional running the support group.
Shelly: Hmm..hmm.
Dave: But a lot of the value is coming from, you know, the folks that participate. So that's, to me that's a very powerful because you're there with people, like any support group, you're there to help each other and support each other as you kind of, you know, those that have been a little farther down the journey, can help those that are new and those that are new sometimes can bring new ideas that others haven't thought of. So
Shelly: Yeah, support groups can really make a difference in people's lives. And I've had clients tell me before that they feel like their friends and family don't necessarily understand, but they go to support groups.
Dave: Hmm.
Shelly: And they're sitting in a room where they're surrounded by people who are on the same journey and it can absolutely make a difference. And also it's not a huge commitment of time. And most of our groups run hour, hour and a half, once a month. And so it's not typically burdensome for people to get away. And do a support group and then in between if they do need more help than they can easily access our 24/7 help line or even go to our website. So there's a lot of ways that they can get that support throughout the month. [14:49.5]
Dave: So support is definitely, I think one of your big strengths. So talk about, let's talk a little bit about the, the risk reduction and the early detection. That's also a part of your services.
Shelly: Yeah. So one of the things we still don't know what causes Alzheimer's and we don't have a cure and we even don't have treatments that are helpful necessarily for the long term. But what we do know from the research that's out there is that it appears that the better we care for ourselves, then we may be able to delay or even prevent the onset of Alzheimer's disease. And so what we want to encourage people to do through our education, whether online or in person is to really kind of embrace habits that are going to set them up for aging well and living long.
Dave: Hmm…hmm.
Shelly: So one of the things that we know is that a healthy or a heart healthy lifestyle also promotes brain health. And so a lot of the things that you'll find, even if you went to the heart associations website or ours, they overlap because a healthy heart means a healthy brain in many cases. [16:05.0]
Dave: Hmm..hmm.
Shelly: And so what we encourage is we want folks to engage in exercise; we want them to eat right. But one other thing that some people don't always think of is that you really need to exercise your brain. And so what we encourage is that folks would actually learn some new things.
Dave: Hmm..hmm.
Shelly: So if you love doing crossword puzzles, that's great, keep doing that, but learn something new as well, and it doesn't have to be academic. We know that even things like dancing and learning a new dance or possibly learning to play an instrument can be really helpful and good for the brain. And so we want to encourage folks to do that. [16:44.5]
And then we also want in the event that somebody does actually have dementia or they're showing signs of dementia, we really want to encourage folks to get an early diagnosis because the research supports that the earlier person is diagnosed, the more beneficial the medications are, and then that also allows time for some advanced planning. So if somebody is even questioning whether they need to be concerned or they have a loved one that they're seeing changes in, they can just go to alz.org and learn about the warning signs of Alzheimer's.
Dave: Yeah, I think early detection is really key cause then you know, there are some things that have been shown in studies that even though there's not a cure, but that have been shown that can slow down maybe the progression of the disease. But that's a whole another podcast, and maybe we'll.
Shelly: Absolutely.
Dave: There's a whole bunch of.
Shelly: That is true.
Dave: I've got like five or six more episodes I think out of this conversation. So, so talk about the research and the fundraising that y'all do. [17:50.1]
Shelly: There's so much, and it's good stuff too. That's the nice thing is that there's so much more than we know, there's so many more resources, wonderful physicians who now specialize in dementia care. So we've really made huge strides since the 1970s when Alzheimer's really kind of first came on the national scene and we started to hear about it.
Dave: Hmm..hmmm.
Shelly: So, thankfully it's a whole different world out there.
Dave: So talk a little bit about the fundraising that y’all do.
Shelly: The fundraising, actually we have many, many different ways that we go about bringing in funds to support our cause and the biggest events or events that we do each year, what we call The Walk to End Alzheimer's. And we have literally hundreds of walks all over the U S they typically start in August and September and run into November. [18:47.8]
And so in Tarrant County we actually have four walks and they drop thousands of people, and so obviously as a nonprofit it's so important that we bring money in and that money actually goes to different things. Not only does it help to cover the costs of operating, but then a portion, and I don't know what percent, but a portion of that also goes to fund research. And so that's where a lot of the money raised from The Walk to End Alzheimer's goes to fund Alzheimer's research.
Dave: I would encourage our listeners, that who maybe have never been to a walk just to go and experience it because it's really one of the most moving experiences you, you'll have in that the flower ceremony, it's kind of like the walk is kind of what it's named for. [19:45.5]
But to me the flower ceremony is so powerful, particularly there's I think four different flower colors and then, but depending on if you're supporting someone or you suffer from. And then the last color is the white flower, if I'm not mistaken.
Shelly: Yes.
Dave: And the white flower represents the first person to be cured.
Shelly: Hmm…hmm.
Dave: So anyway, very moving experience. So that’s always someone that always comes up to me has never been to a walk, always talks about the flower ceremony. So
Shelly: Yeah, it's a lovely experience. And even though certainly the flower piece of it is really touching, but it's also, it's just, it's fun and it's encouraging. It's really neat to be there with so many people who are on this journey or who were on this journey and continue to engage with us. And I mean obviously money is hugely important for us, but also just to raise awareness. And so we love it when people come out and participate. So people don't have to raise money to participate in the walk.
Dave: Oh absolutely. Absolutely. [20:54.3]
Shelly: So we're just thrilled to have them there.
Dave: So what are some of the opportunities? One would be just to get involved to volunteer to help out. How would they do that?
Shelly: So if folks want to get involved with us in two things, one is they can call us at our 24/7 helpline and that number is (800) 272-3900 or they can go to our website, which is just alz.org and if they're interested in volunteering specifically in the search line, they can just type in ‘volunteer’ and it will take them to information about that.
Dave: Great. So if someone is looking for help is there just the same numbers and contacted within or is it something different?
Shelly: Yeah, the 800 number or the website are still good places to start.
Dave: Okay. Very good. All right, well Shelly, believe it or not, our time is up, but I appreciate you taking the time out of your busy schedule and letting our listeners know more about the Alzheimer's Association. [22:04.1]
And I also encourage everyone to checkout two websites. One is HomeCare AssistanceFortworth.com and the other is, ItsmyTurntoCare.com and we'll have The Alzheimer's Association contact information on that as well. So until next week, we appreciate it, It's my turn to care and I'm Dave Parks the host. It's my turn to care, and today we had Shelly Young from The Alzheimer's Association. Thanks so much Shelly, for joining.
Shelly: Thanks for the opportunity. [22:39.5]
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