Additional Resources Mentioned

In the Beginning 

First Steps – Right after the diagnosis

1. Choose a palliative care organization.  

• This will likely also serve as your hospice organization later in your journey.
• In your search engine, type ‘Palliative Care’ + ‘the name of your country’ or, in the US ‘the name of your state’. Scroll down until you get below the sponsored links where it says ‘Places’.
• Click on ‘More places’ to get a list with a map: 
  • Notice rating stars and those located around your area.
  • Don’t be distracted by options that say ‘Hospice’ in their name – they often include palliative care.
• Schedule an initial consultation with more than one so you can compare.
• Educate yourself on what palliative care is:
  • 27 minute The Caregiver’s Journey (TCJ) podcast: 42. When To Call In Palliative Care
  • TCJ blog 42. When To Call In Palliative Care.

2. Create an Advance Care Plan.

• Get your legal documents in order and do some initial end of life preplanning with your loved ones input:
  • Contact your attorney or an elder law attorney NAELA.org.
  • Listen to this podcast or read this blog on elder law attorneys:
    • 32 minute TCJ podcast: 31. Elder Law Attorneys
    • TCJ blog: 31. Elder Law Attorneys.
  • In the United States, look for free legal help here.
  • Alzheimer’s Association legal documents overview:
    • While named Alzheimer’s Association, this group focuses on all types of dementia.
    • Medical Power of Attorney (POA), Financial POA, Will, Advance Directive/Living Will, end of life preplanning with your loved ones input.
  • Leverage this End of Life Planning Worksheet. 

3. Understand the financial situation. 

• Work with a financial advisor – especially those who focus on seniors. Elder law attorneys can also advise in this area. 
• Alzheimer’s Association resources overview of financial planning:
  • Long term care insurance – when and how to leverage
  • US Social Security Administration – Disability
  • US Medicaid eligibility and options
  • US Veterans Affairs (VA) eligibility 
  • Other forms of income.

4. Find support groups.

•  First and foremost for you. If possible, find a support group you can attend in person:
  • For a support group focused on a specific type of dementia, in your search engine, type ‘name of dementia type’ + ‘support group’.
  • The Alzheimer’s Association support group finder has support groups for a variety of types of dementia.
• If your loved one is interested a support group: 
  • Dementia minds has online groups for people living with dementia.
  • Many local senior centers have support groups for your loved one to increase socialization: 
    • In the US, go to your ‘countyname’.gov website and search for a senior center.
• If you need someone to talk you through how to find a support group for any type of dementia, call this free 24/7 helpline from The Alzheimer’s Association. You will be connected directly to someone you can talk with. 
  • The Alzheimer’s Association 24/7 helpline in the US: 1.800.272.3900.
  • Talk with your support group about what self-care means and ways to incorporate it in your daily plans.
  • Self-care is NOT selfish; it’s important for you throughout your entire caregiving journey.
  • The most important thing is to continuously prioritize caring for you. 

5. Educate yourself on early caregiving journey topics.

• Listen to these two podcasts or read these two blogs.
  • Memory Loss: 
    • 29 minute TCJ podcast: 2. Memory Loss 
    • TCJ blog: 2. Memory Loss.
  • Communication:
    • 20 minute TCJ podcast: 3. Communication – in the Beginning
    • TCJ blog: 3. Communication – in the Beginning.

6. Investigate the US Medicare GUIDE program. 

• Listen to this podcast or read this blog:
  • 23 minute TCJ podcast: 39. Is the Medicare GUIDE program for you
  • TCJ blog: 39. Is the Medicare GUIDE program for you.
• Understand if your loved one may be eligible: 
  • https://www.cms.gov/priorities/innovation/guide/faqs#ben-cgs.
• If you think you might be eligible, find a US Medicare GUIDE program provider near you.
  • There may be several who cover your zip code so explore options.
  • Go here to find a GUIDE program:  
    • Enter your state. 
    • Under models select ‘Guiding an Improved Dementia Experience (GUIDE) Model’.
    • Click ‘Display selected’. 
    • You can use the plus and minus signs in the upper right corner to zoom in closer to your area. 
    • When you find the location you want, click on the blue dot and detailed contact information will show.

The Three Stages of the Dementia Caregiving Journey

1. In the Beginning – Your loved one receives a diagnosis. 

• You are the caregiver for TWO people – and you have equal responsibility to both! You instinctively know one is your loved one, but who is the second one? It’s you!
• Your caregiving goal for both of you is keeping you safe and comfortable.
• For your care receiver living with dementia, keep front and center helping them maintain as much dignity and independence as possible.
• Your natural instincts will pull you to take control to protect them.This can be counter to dignity and independence. At this point, as the primary caregiver, your role is providing most of your support in the background. 
• The time will come when you will need to take more control. Be patient and let it come naturally.
• You may begin grieving losses along the way – some minor, some more significant. We call this ‘drip grief’. It’s still grief.

2. The Messy Middle – You begin asserting control; this is when it gets messy!

• Your care receiver still thinks they can do most things while you’re getting more involved,   and this adds to their frustration. 
• There’s a lot of observing and adjusting while helping them maintain their independence.
• Your loved one is frustrated because they aren’t sure what to do. Sometimes, they’re also scared.
• It’s important to look at things from their perspective, maintaining empathy and connection during this challenging stage.

3. Later On – You are managing all aspects of their care. 

• Caregiving becomes easier in many ways at this stage – and harder in others.
• Be aware of your ongoing grief (sometimes called ‘anticipatory grief’). 
• Prioritize self-care and reach out for support.

Read More in This Blog here

 

Full Episode Transcript

Sue Ryan 

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 a 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.

 

Nancy Treaster 

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.

 

You have 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. So it’s a wonderful, wonderful model that I think we’ll talk about a little bit later.

 

Jenny Gay

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. 

 

Nancy Treaster

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. 

 

Before we start 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. We want you to be comfortable, please feel free to just 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 thecaregiversjourney.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.

 

Sue Ryan 

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 them, 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 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, okay. 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 him safe and happy. And those things shift over 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 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 to the beach holding hands and stood at the shoreline and watched 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. And so we’re become aware of drip grief, that grieving along the way and be sure as you’re taking care of yourself, you reach out and start reaching out and start practicing that in the very, very beginning. In this podcast episode, we’re focusing on this first stage.

 

Nancy Treaster 

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 and we do not want you to miss it. So we’re going to talk through what palliative care is and 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 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.

 

Sue Ryan 

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 I was it was it was a miss for both of us. We do not want you to miss that because what we’ve learned about palliative care is and the benefits of implementing it early in your caregiving journey. 

 

You know, as an explanation of what it is, and you can go get a lot more detail of it, but it’s 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 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.

 

Nancy Treaster 

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. 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 all your other medical support. It’s an addition. And it’s covered most commonly by insurance. In the U.S. 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. 

 

We want you to go search for palliative care. It has an I in it, but remember, we’re going put links so you don’t have to worry so much about all this, but palliative care in your country, 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 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 hospice organization might have palliative care. A palliative care organization is almost always in conjunction with a 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.

 

Nancy Treaster 

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 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 kinds 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.

 

I read a lot when I picked the hospice organization, which is a similar process, I read a lot of customer reviews. got recommendations from medical doctors and from friends because you want to, 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.

 

And I think even Sue, 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 one’s in an independent living or some kind of community. tend to have very strong preferences to what provider you utilize because they will have established workflows. 

 

Jenny Gay

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 and 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.

 

And so are you guys ready to jump into step two? 

Step two is to create an Advance Care Plan. I also want to take a moment to identify that this is an opportunity and time with your loved one to get legal arrangements in place that will provide security and peace of mind for your loved one and yourself, before they lose the ability to weigh in on these decisions and make decisions themselves. This is a way to partner with them in those decisions and make sure that you both feel good about the plans that are made. So when we’re talking about Advance Care Planning, an Advanced Care Plan is a process of planning for future healthcare 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 one’s 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 one’s wellbeing but also your own peace of mind in difficult moments. 

 

So when we’re talking about what documents, it’s important to have an order. I want everybody to keep in mind that 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, et cetera.

 

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 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 include 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, 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 NAELA and it will be in the notes from the podcast. It’s naela.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 can 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.

 

Sue Ryan

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?

 

Nancy Treaster

And that episode that Sue was talking about with the elder law attorneys, we did interview 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 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 gives you some of the decisions that you will be making at the end of life. And you may want to have some of those decisions, conversations with your loved one while you’re on it.

 

Sue Ryan 

So you’ve got a longer runway to have the conversations, especially when some of them could be more complex and with family dynamics.

 

Nancy Treaster 

Okay, so step three is to understand your financial situation. And this is really your loved one’s financial situation, obviously some of it’s you as well, 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. And 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 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 keep in mind there are documents and the financial opportunity to go out and get support from things like the VA, Medicaid, you need to understand what’s happening with Social Security. Are they on disability? 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 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. 

 

Jenny Gay

Well, so moving along, our next step, we have step four, which is to find support groups. 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. So 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, that 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. 

 

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 Healthcare, if there are groups specific to your loved one’s 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. And often, I know for ourselves, we keep a list that we’re able to hand out to care partners that they’re able to utilize.

 

Another thing that comes up a lot in my practice is that a lot of care partners ask 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. This is an online group for people that are 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 countyname.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.

 

Sue Ryan 

Yeah. 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. We’ve talked about some of this and again, we’re going head back to the Alzheimer’s Association for just a moment because one of the things that they did is they created a 24-7 helpline because they know that our issues and our concerns do not necessarily come at, you know, 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. 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 incorporate 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, when you can still assert control, when you still can be making choices and you still have some capacity, learning how, practicing self-care, learning how to prioritize it, getting in the right way about it is very, very helpful. And this is something that’s great to go to support meet groups and talk about what self-care looks like, how people do it well, what are some of the issues, and making sure you continuously prioritize it. One of the things that I’ve encouraged a lot of people to do, which helped me because speaking only for myself, in my journey, I have of course thought, I can do this, I can do this, I can do this, and I kept adding on, adding on, adding on until I found the day when I could no longer add things on and I had shaved off more than I really could.

 

So in step five now, we’re going to be going to the education part of it. We have so many different questions. So let’s educate ourselves on some of these early caregiving journey topics.

 

Nancy Treaster

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 to 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 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 podcast 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.

 

Jenny Gay

Nancy, 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 an ever-changing process.

 

Nancy Treaster

That’s a beautiful point and Sue’s right. Sue and I always talk about observe and adjust because this is a constant adjustment.

 

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 other countries. But for now, this is a US specific thing to leverage. It’s a pilot program 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 1st 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. 

 

Jenny Gay 

We are, it’s been an exciting experience for our clinic to be one of the original guide sites. Our clinic model is 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 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 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, i.e. a nursing home. So, but you could live in 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 models, select Guiding an Improved Dementia Experience Guide Model.

 

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. 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 we’ll put those in the blog as well. And they are in the guide, the navigating dementia caregiving remit guide. So because it’s not easy.

 

Sue Ryan 

We want to make sure you’ve got access to it because it’s really such a great program. Yeah, such a great program. Jenny, thank you so very much. You are such, I mean, we’ve barely tapped the surface of your great expertise and we really appreciate it. And we’ve covered a lot in this episode as all of you have been listening patiently through till now and it’s a longer episode than we normally do. We felt this was just so valuable for you. 

 

Jenny Gay

It’s my pleasure. Such a pleasure to be with you all.

 

Sue Ryan 

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’.

 

Jenny Gay 

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. 

 

Nancy Treaster

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 one’s financial situation. 

The fourth step – Please find support groups for you for sure. And if your loved ones are interested in them as well. 

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 to investigate the US Medicare guide program. 

 

Now, if you like this podcast, please subscribe and follow us. We really appreciate it. Everything we’ve talked about, all the resources we’ve discussed, the links will be in the show notes as usual, as well as in the blog.

 

Sue Ryan 

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.

 

Nancy Treaster 

Yes, we are.