Navigating Dementia Caregiving Roadmap: In the Beginning Steps 1-6 / Alzheimer’s and Other Dementias

This is the Whole Care Network. Music Helping you tell your story, one podcast at a time. Content presented in the following podcast is for information purposes only. Views and opinions expressed in this podcast are solely those of the host and guest and may not represent the views and opinions of the Whole Care Network. Always consult with your physician for any medical advice and always consult with your attorney for any legal advice. And thank you for listening to the Whole Care Network. Music Have you ever felt overwhelmed because you can't find the information you need or you're drowning in so many conflicting resources, you don't know what to do with it all? In this episode, Nancy and I are joined by the wonderful Jenny Gay, who's the clinical social worker for Emory Integrated Memory Care. We're discussing step by step roadmap to help you prioritize what to do in the beginning of your dementia caregiving journey. We're going to start with the first six today of 20 total steps in the entire journey. Music Welcome. We're Sue Ryan and Nancy Treister. This podcast brings our years of experience in a variety of family caregiving roles to prepare you to navigate your caregiving journey. We're sharing our personal experiences, not medical advice. And because it's our passion to support you on your journey, we believe no topic is on limits. Let's get started. Music Welcome Jenny. And thank you for joining us to discuss the 20 steps of navigating the dementia caregiving journey. In today's episode, as Sue said, we're going to discuss steps one through six, which are just for in the beginning right after the diagnosis. But before we do that, let's introduce our listeners to you. You have a varied and diverse and impressive background, a bachelor's and a master's in social work. Thank you. That contributes so much to what we're talking about through these episodes. And you are the social worker for Emory's Integrated Memory Care Team, which focuses on both the person living with dementia as well as the family caregiving. Thank you so much, Nancy and Sue, for having me on your incredible podcast today. I'm so glad to be here and have this opportunity. Thank you so much. Your thrills are here with us. I am passionate about working with people living with dementia and their care partners. It is a big part of my heart and I'm honored to do the work every single day. In my work, I find that right after a diagnosis, the family is most often overwhelmed. They feel scared and they experience a loss of hope and increased fear. They don't know where to start. Either they feel they don't have the information or they have found so much information. They can't distinguish between what's important now, what can wait until later, and what they don't need to worry about at all at this point in time. But it is a milestone memory that will stay with that family forever. And everybody experiences it differently, but it is a very, very difficult moment. Yeah, it is. And the information challenge is huge as we know. And that's what we're going to try to tackle today, at least the beginning part of that. So this is the first episode of a series of episodes where we're going to cover how to navigate the caregiving journey. And we're going to walk you through a roadmap. There are 20 steps in the roadmap. We're going to cover the first six here today. But let me tell you how you're going to get to the information so you do not need to worry. You're going to hear us talk a lot about particular resources and how to get to them and how to search for them. And so in this form, we want you to just be comfortable. Please feel free to listen. The links to everything we talk about will be in the show notes. There'll be a matching blog that'll go along with this episode. The links will be in the blog. If you go out to the caregivers journey.org and you can go to guides, the actual guide called navigating dementia caregiving roadmap will be out there. And the links are in the guide as well. So lots of places to get to the resources we're going to talk about here today. So just relax, listen to the podcast and feel good that you can get to the information in a lot of different ways after we're finished. When Nancy and I talked through our caregiving journeys, we recognized that there were three distinct stages. We're not talking about the steps or phases or stages or whatever you want to call of dementia. There are a lot of books and experts who have written about the progression of the dementia journey. We're talking about the caregiving journey and the three stages that we identified are first of all, in the beginning. And this is right after there's been a diagnosis. Our loved one is able to be pretty much independent or fully still independent. And then stage two is what we call the messy middle. Things aren't going quite as well that we're starting to have to assert some control because it's harder for them to do some of the things or they're struggling a little bit more. And we call it messy because for many of them, they don't want our help and they're frustrated because they they are losing control. So it gets really, really messy and they're just they're not able to control and manage things on their own. And then we got to the third stage, which we call later on. And this is when we're fully responsible for their care and safety. In this podcast episode, we're talking about the first stage in the beginning when we've just received the diagnosis. We're immediately the caregiver for two people. You're going, hmm, OK. I know that one of them is my care receiver. Yes, there's another person and there's equal responsibility for both people. And that's you. The beginning of your caregiving journey and the beginning of their caregiving journey have a very common goal is for both of you. To stay safe and comfortable when I was caring for my husband. Every decision I made and every communication I had when we were working with anyone else, keeping them safe and happy. And those things shift over the time. But we want to make sure that we're thinking through the lens both for our care receiver and for us, especially in the beginning when we've got a little bit more of a runway to start practicing. It's practicing, keeping safe and comfortable. And in the beginning for our care receiver, we want to make sure that we're keeping front and center, helping them maintain as much dignity and independence as possible. And one of the things that may seem a little bit counterintuitive, it's going to be our natural instinct to want to be taking over control. And we're so sensitive to like, if something doesn't go really well and we want to try to help them out, we want to protect them. But that's really counter to dignity and independence. In the beginning, as much as we possibly can, what we really want to be doing is providing them the support and care from the background. So they're really not even aware in most cases that we're doing that. Because the time is going to come when we're going to need to assert more control. So be patient, let it come naturally, give them that wonderful grace we talked so much about. And then the other thing to become aware of is we're now in this stage, we're starting to recognize things that they're not going to be able to do anymore. And we start grieving and we grieve these little moments that become bigger moments and bigger moments. And we call that drip grief. It's a little bit of grief. It's like every day there's a little something. Again, a story with my husband, I remember the last time we walked down the beach holding hands and stood at the shoreline and watch the sunset. And I knew that was the last time we were going to be able to do that. And that was a moment that I would grieve. In this podcast episode, we're focusing on this first stage. Thank you, Sue, for that great explanation of the three stages of the caregiving journey. I like the way that you were clear about that. So we're talking about the first stage in the beginning and we've even divided in the beginning into two different sections. So of the 20 steps, 10 of them are in the beginning. And though there are six in the initial part of in the beginning and then once you've gotten through those six, we have four more that we recommend. This podcast is just about those first six. So let's get started. What is step one? Step one is to choose a palliative care organization. Now, this is a service that neither Sue nor I took advantage of. And from everything we've learned, this was a big miss. We do not want you to miss it. So we're going to talk through what is palliative care and how to how to find a palliative care organization. The reason I didn't take advantage of it is the way palliative care was explained to me was it was when people have some sort of disease or something that's critically wrong with them and they're looking to be cured. And dementia is not curable. So I just assumed that my loved ones weren't eligible. And the miss for me was that it was explained to me incorrectly by a hospice care organization actually and they explained that it was part of hospice care. And that when you went under hospice care, palliative care was a part of what hospice care was. And so it was a miss for both of us. We do not want you to miss that because as we've learned about what palliative care is and the benefits of implementing it early in your caregiving journey, it's huge. It's an explanation of what it is and you can go get a lot more detail of it, but it's a holistic. It's an overall approach to a life limiting disease. And that's whether that's a diagnosis of perhaps cancer or heart disease. And dementia is a life limiting disease. And you can qualify for palliative care when you've got a diagnosis of dementia. It's important to understand the difference, the key difference between palliative care and hospice care. So when we talk about palliative care in the beginning of the journey, it's when we're still seeking aggressive treatments while seeing all the different providers that we've got for any components of the diagnosis. So we're still actively looking at what we can be doing. On the other side, hospice care is when we're generally toward the end of our journey and we are no longer seeking aggressive treatments or curative treatments and we're focused on comfort care. And palliative care is not either or. Like once you get palliative care, you just relinquish all your doctors and everything because palliative care is something that you engage with early in your journey. They'll work with your medical team, your all your medical team and help coordinate and help participate in however they add value to your overall medical care. So it's not something that you have to choose versus over everything, all your other medical support. It's an addition. And it's covered most commonly by insurance in the US. It's covered by Medicare and by other insurance. So what a huge win. Why not have more eyes on your loved one? And on your personal situation because they will also focus on the family and the caregiving situation as well. Don't be surprised when you start searching to choose your palliative care organization. We want you to go search for palliative care. It has an eye in it. But remember, we're going to put links so you don't have to worry so much about all this, but palliative care and your country or and it's and there's palliative care is a common term in many, many countries. Or palliative care in your state if you're in the US. So palli search palliative care, Florida or palliative care, Naples, Florida, even, and you'll see the palliative care organizations that are available in your area. Don't be turned off by the fact that it might be called something hospice because typically a palliative hospice organization might have palliative care. A palliative care organizations almost always in conjunction with the hospice organization. Now, an organization might just have hospice but not palliative care, but you're not going to likely find one that has palliative care and not hospice. So that's also a benefit because this becomes your hospice partner when you get to that part of your journey. Now, when you're thinking about palliative care and trying to decide how it fits into your journey and want to understand more about it, we did do a podcast on palliative care. It's podcast number 42 links in the show notes, of course, you can either listen to that podcast or read the blog about palliative care and you can educate yourself more about it before you start searching for a palliative care organization. Remember, in these kind of situations, it's usually good to find at least a couple of different ones because the types of services that they offer and whether you have to go into their clinic to get the service or they'll come to your home, might depend on where you are in your journey, but also the kind of services that they offer. So I read a lot when I picked the hospice organization, which is a similar process, I read a lot of customer reviews. I got recommendations from medical doctors and from friends because they're not all the same. So you want to get some recommendations and get a good idea of what kind of services that they would offer. And it may also be a good suggestion as well if you have a really strong primary care provider or a really strong relationship with a specialty provider such as a neurologist, it is possible they have a relationship already formed with a palliative care provider and that could be a good gateway as well. Good point. Yeah, very helpful. And I think even Sue, when I think you said when this was hospice specific, but I think it also works for palliative care, even the communities have a relationship with one or two that they would recommend. So even if your loved ones in an independent living or some kind of assisted or memory, they tend to have very strong preferences to what provider you utilize because they will have established workflows. You as the consumer are not tied to utilizing a specific provider, but there may be pressure and a strong preference from the senior living community where you are located in independent assisted or memory care. So it's important to communicate typically with the wellness director in any of those settings to get an understanding of any preferred providers that work well with that community as well. So we're going to jump into step two, which is going to be creating an advanced care plan. I also want to take a moment to identify that this is an opportunity in time with your loved one to get legal arrangements, which we're about to discuss in place that will provide security and peace of mind for your loved one and yourself as they lose the ability to weigh in on these decisions and make decisions themselves. This is a way to partner with them and those decisions and make sure that you both feel good about the plans that are made. So when we're talking about advanced care planning, an advanced care plan is a process of planning for future health care needs, especially when one is unable to make their own decisions like we just talked about. So getting your legal documents in order and doing some of the initial end of life planning can really, really help you gain your loved ones input and also ensure that when you do reach a time of profound grief and loss and challenge, you aren't having to make these decisions in those difficult moments. This is a preventative measure to protect your loved ones while being, but also your own peace of mind and difficult moments. So when we're talking about what documents it's important to have in order. I want everybody to keep in mind based on the country you live in, the state you live in, these documents may look different. This is, I would say, a very standard list of documents we recommend even in our clinic on a regular basis. So we have a medical power of attorney. This is a document that names the people that you want to make medical decisions for you when you are no longer able to do so for yourself. We also have a financial power of attorney. This is a document that outlines who you want to make financial decisions for you when you're no longer able to make them for yourself, which also includes the management of assets, bank accounts, etc. It's important to do this while your person has decision making capacity, especially financially, so that you can access their bank accounts. You can access investment accounts. You can get named as the beneficiary because all of those things get very, very difficult when someone doesn't have capacity to make decisions anymore. And then we have an advanced directive living will. An advanced directive living will is going to look different depending on, again, the state you live in, the country you reside. For our purposes today, this document serves to outline your treatment preferences such as a do not resuscitate order, do not intubate order, trial period of IV fluids, feeding tube. So some really, really significant medical decisions that are important to have designation around. So that advanced directive and living will sometimes also includes your medical power of attorney included in that document. And sometimes it is simply just your medical decision making. In addition to those things end of life pre planning with your loved ones, input about burial or cremation, even though these are very difficult things to think about. So this is an opportunity to talk about them and create basically the experience that you and your loved one want to have when that time comes. The next step in order to make sure these documents get put into place properly and are created properly is to contact an attorney. We strongly suggest contacting an elder law attorney, and there is an excellent database. It is the National Academy of Elder Law Attorneys. It's called NALA. And it will be in the notes from the podcast. It's NALA.org. And this will help connect you with Elder Law Attorneys that specialize in the type of documents and the type of processes we've just spoken about. And so you can reach out, you can locate one that's close to you geographically. And I suggest setting up a consultative appointment and you could interview a couple of attorneys. Just like you're interviewing any type of provider, it's important you feel good about the work you're doing with this provider because this is very vulnerable. And this is very important. Nancy and I both benefited from Elder Law Attorneys and can't say enough positive about them. The podcast episode is really helpful for that. And on the opposite side of that, I've been in a lot of support group meetings where I've heard absolute horror stories where people did not do this end of life planning. And some of it is as simple as, you know, who's got the deed of the house. And that episode that Sue was talking about on with the Elder Law Attorneys, we did interviewed a couple of Elder Law Attorneys in the state of Florida, but they spoke to the general value of what you'd expect from an Elder Law Attorney. That is episode 31. And you could also read the blog. Once again, all these links will be in the show notes how to find one as well as the links to the episode. We do have another episode on end of life planning episode 30. You may or may not choose to listen to that at this point at a minimum. I would suggest that you download the worksheet, which is under guides on our website, because the worksheet at least give you some decisions that you will be making into life. And you may want to have some of those decisions conversations with your loved one. So step three is to understand your financial situation. And this isn't this is really your loved one's financial situation. Obviously, some of it you as well. But, but your loved one's financial situation here. Obviously, you want to speak to your financial advisor or their financial advisor. If you don't have a financial advisor. There are financial advisors that specifically focus on seniors. So they are going to understand these dynamics much more than just a standard financial advisor. So that's what I would look for if if I didn't already have a financial advisor. Elder Law Attorneys. We learned cover a lot of these same topics exactly including the financial topics. So you might find this is all covered just fine with your Elder Law Attorney if you choose to leverage one of those. So just, you know, keep in mind there are documents and financial the financial opportunity to go out and get support from things like the VA Medicaid need to understand what's happening with Social Security. Are they on disability? Yes, yes, yes or no. What are your forms of income in general? Do you have long term care insurance? All those are the documents and sort of thought process you want to go through so that you don't miss anything. If you're not leveraging one of these expert experts like a senior care financial advisor or an Elder Law Attorney, you can also go out to the Alzheimer's Association and they have a link to what the documents are or the sources of income that you should think through when you think about financial planning, both income and expenses. The Alzheimer's Association is not exclusively focused on Alzheimer's. I know the name implies otherwise. And yes, 70% of dementia is Alzheimer's, but that's how they started, but they cover all types of dementia. Plus a lot of the things are the same. It doesn't matter what kind of dementia you have, but they also have plenty of resources available for all types of dementia. So please don't be shy about leveraging the Alzheimer's Association for anything, even if your loved one doesn't have Alzheimer's. Links to the place to go to get the financial planning documents will also be in the show notes. And links for everything we talk about here will also be in the guide, which will be navigating dementia caregiving roadmap guide and the links will all be in that as well. So plenty and in the blog. So plenty of places to find the links. Do not worry. So moving along, our next step we have step four, which is find support groups. Please. Find them. Go to them. First and foremost, these are groups for you. I want you to think back to how Sue opened this session talking about how you are now a caregiver for two people. And so you are one of those people finding a support group is one of the strongest forms of support you can get in place for yourself. The first and foremost, if possible, find a support group that you can attend in person. We all understand the logistical challenges you face as a caregiver. In this early stage, it is much more likely, depending on a lot of different safety factors that you have to evaluate yourself, you may be able to leave your loved one alone at home so you can attend a group and go be with other people who have a shared experience that you can build a connection with and gain resource and insight from. So if you are looking specifically at the Alzheimer's Association support group finder, it has a support group for a variety type of dementia, or you can ask your medical team that you're working with if the medical system you are a part of, like for example, if you are part of Emory Health Care, if there are groups specific to your loved ones type of dementia, and your experience as a caregiver as an adult child or as a spouse, if there are groups that cater to those needs. Another thing that comes up a lot in my practice is that a lot of care partners asked me about my loved one that's in an early stage, newly diagnosed, really needs some support for themselves. And so we're fortunate in that there are various platforms that can support people living with dementia and give them emotional support and some engagement. So the primary one that I have an awareness of and that Nancy and I have spoken about is called dementia minds. Dementia minds has online groups for people living with dementia. In addition, they also have some different programming, they have some weekly music programs, they have an art class, a lot of different ways for your loved one to get engaged. Of course, this is going to be virtual, but I think it's still impactful and meaningful. We also have a ton of local senior centers all over this country in the United States. I don't know the landscape of senior centers internationally, but I know in the United States that's something that is, we have a plentiful amount of them and they are a huge underutilized resource in our community that can provide engagement, workshops, certificate programs. They have different support groups. Sometimes they have support groups for people that are living with dementia. Sometimes they have support groups for caregivers. So senior centers are wonderful resources that I encourage you to tap into. In the United States, you can go to your county name dot gov. And you look at the website and you search for a senior center. Most senior center websites have a list of offerings and a schedule and a calendar. So hopefully they're accessible, but it's a good hub to really explore to get some support in this early stage. And it's usually at the county level, right? Yes. I know for the county where I reside in DeKalb County, I think we have four or four to six. One of the things at the support group that I used to go to very frequently, when I was able to go in person, they had the support group meeting for me and they had one for the care receiver at the same time. And a lot of places that provide those have that. So when you're looking for the different kinds of services, look for the variety of different ways they offer the support. And here's the thing. We've talked about some of this. And again, we're going to head back to the Alzheimer's Association for just a moment because one of the things that they did is they created a 24 seven help line because they know that our issues and our concerns do not necessarily come at, you know, eight o'clock in the morning or four o'clock in the afternoon. And they also have them internationally. So for your country, take a look at what it's got, but they've got this toll free number. It's of course going to be in the show notes, but the number is 800 272 3900. And so you can call and you can ask them and if if right now they're available in 57 countries and that continues to expand. So look and you'll be able to find them. So when you're talking to the support group, you want to make sure you're talking about self care and ways to be incorporating it in your plans. Because when we talked about it at the very beginning, we said, okay, there are two people on this journey. There is your care receiver. And there is you. And in the beginning, learning how practicing self care, learning how to prioritize getting in the right way about it is very, very helpful. And this is something that's great to go to support me groups and talk about what what self care looks like, how people do it well, what are some of the issues and making sure you continuously prioritize it in step five. Now we're going to be going to the education part of it. So we're going to be giving a lot of education. We have so many different questions. So let's educate ourselves on some of these early caregiving journey topics. So the good news is we're only going to give you two things to educate yourself on right now. There's plenty more education coming, but these are the things that we think you should prioritize right now. And one is educate yourself on memory loss. We have a podcast. Number two is on memory loss and there's a matching blog if you'd rather read about it. And this really will help you frame what's happening and how to absorb really the gut punches that come with early memory loss and all the different changes that are happening with you and your loved one. It's tempting at the beginning to want things to be the way they were. And this is podcast will help you reframe that a little bit. The second podcast we want you to listen to is kind of cast number three on communication. Same challenge, I think, and that is it's really tempting to want everything to be the way it was. And it takes a bit of a mind shift to change the way you're communicating with your loved one. So just those two podcasts. That's the only place we want you to start here in the beginning, but get that baseline education so you can start reframing the way you're interacting with your loved one. Nancy, I really, I really like that y'all have provided that and given that tool to your listeners because I tell our patients and families all of the time you are learning a new language. You are learning new behavioral patterns that you have had in place for decades, whether it's a parental relationship or a spousal relationship. This is a this is an ever changing process. Yes. The last thing we want you to do, step six, in the beginning, right after the diagnosis is to investigate the US Medicare guide program. Now, of course, this is US specific. Other countries are watching this pilot program in hopes that it'll go very well and they can leverage some of the things in there in other countries. But for now, this is a US specific thing to leverage. It had 90 participants. It's a pilot program that Medicare that Medicare has that we'll talk about eligibility in just a second. There were 90 participants in it up until July 1 of this year across the country. But on July 1, it went to 390 participants, meaning organizations that you can go to to participate in the Medicare guide program. The Medicare guide program is focused on Medicare paying for services to support the person living with dementia, but also for the person caring for the person living with dementia. This is radically different from what's ever happened before. So we want you to investigate the Medicare guide program. We're going to talk through what that means. We're fortunate enough to have Jenny with us from Emory's integrated memory care, which we're going to talk about in a minute. And we also put out a podcast episode number 39 on July 1 with your colleague Amy Ives, who is the program director for Emory's guide program. But they happen to also not just be a wonderful place for families to go to get support and medical care for people living with dementia, but they're also a participant and one of the original participants in the Medicare guide program. So I'm going to let you take us through it. We are. It's been an exciting experience for our clinic to be one of the original guide sites. Our clinic model. We are primary care for people living with dementia. And we have an interdisciplinary team, meaning that we have people who come from different disciplines to provide care. So myself, I'm a clinical social worker. We have nurse practitioners who lead primary care. We have registered nurses and we have some other disciplines as well, but those are some of the primary ones. And so we were already providing a lot of what the guide model was looking for caregivers and patients to have access to. So we're lucky that we were able to plug this program in pretty easily. I also want to take a moment to bring everyone's awareness to open enrollment will be starting in the fall, which is an opportunity when you are able to change your Medicare enrollment for yourself or your loved one. This is something we recommend people do annually and not be passive about year to year, but coming back to guide. So in order to be eligible to participate in guide, once you find a site, you must have traditional Medicare parts A and B. Traditional Medicare must be the primary payer source since it is a Medicare pilot program. This means that you cannot be enrolled in a Medicare Advantage plan that may change down the road, but probably not this upcoming year. I think we are anticipating this continuing to be a traditional Medicare program. In order to access it, you cannot be on hospice care. And you are not able to live in a skilled nursing facility, ie a nursing home. So, but you could live an independent living, you could live in assisted living, personal care home, memory care, and you could access the guide program or just be living generally in the community. If you think you may be eligible for the guide program, you would want to find a US Medicare guide program site that's near you. If you're in the Metro Atlanta area, we would love to have you at IMC. But there are several who will cover your zip code so explore options. So you will go to Google guide innovation center map. And there will be a link in the show notes from today. You'll enter your state under model select guiding and improved dementia experience guide model. And then you will click display selected. It's going to be really important if you're going to look at this to look at the show notes because those are very specific instructions. Otherwise, you will end up. I don't know where you'll end up. But because it's the government and it's not easy. So just make sure you follow those directions in the show notes and you'll be able to access it and and we'll put those in the blog as well. And they are in the guide, the navigating dementia caregiving. Remind guide. So because it's not easy. We want to make sure you've got access to it because it's really such a great program. It really is. Jenny, thank you so very much. Oh, it's my pleasure. Such a pleasure to be with you. You are such. I mean, we've barely tapped the surface of your great expectation. We really appreciate it. And we've covered a lot in this episode as you all of you have been listening patiently throughout till now. And it's a longer episode than we normally do. We felt this was just so valuable for you. Our next episode is going to be covering steps seven through 10 of this first stage of the caregiving journey in the beginning. And it's going to complete those resources that we have under in the beginning. Thank you so much to Sue and Nancy for having me and giving me the opportunity to be part of this awesome podcast that I am so excited to continue to share with our families in our community. And I don't think we could have done it without you. So awesome. Thank you. Thank you. My pleasure. Let's summarize what we covered today. Today we covered steps one through six of the navigating dementia caregiving roadmap. Let me tell you what those six steps were. The first step was to choose a palliative care organization. The second step was to create an advanced care plan. The third step was to understand you and your loved ones financial situation. The fourth step, please find support groups for you for sure. And if your loved ones interested for them as well. The fifth, educate yourself on the early caregiving these first two early caregiving topics just to help you reframe the way you're thinking about communication. The last is step six, which is investigate the US Medicare guide program. Now, if you like this podcast, please subscribe and follow us. We really appreciate it. We know this journey can be overwhelming. We want you to know that you are not on it alone. We're all on this journey together. Yes, we are.