Additional Resources Mentioned
Takeaways
We discussed the first 6 steps:
- Step 1: Reach out for guidance
- Step 2: Update legal documents, end of life planning and other long term care plans
- Step 3: Understand the financial situation
- Step 4: Find support groups
- Step 5: Educate yourself on early caregiving journey topics
- Step 6: Investigate the US Medicare GUIDE program
Full Episode Transcript
Nancy Treaster
Did your loved one recently get a diagnosis of dementia? Are you at a loss as to what to do next? Are you overwhelmed because you can’t find the information that you need? Or just the opposite? Are you drowning in so many conflicting resources you don’t know what to do?
In this episode, I’m going to cover the first six steps Sue and I recommend you take on your 20 steps on your Dementia caregiving journey. Right after the diagnosis.
This episode covers the first six steps of version four of the Navigating Dementia Caregiving Roadmap. We first launched the roadmap in August of 2025. And since then, we’ve updated it. We’ve updated it based on podcast episodes that we’ve published that are directly related to steps in the roadmap. And we’ve updated it based on things we’ve learned from professionals in the dementia caregiving space.
You can always find the latest version of the roadmap on our website at thecaregiversjourney.org. Go to the homepage, you’ll see an icon that says Caregiving Roadmap. Click on that icon and it will take you to an interactive web page. The 20 steps are listed. Click on any step number, and it’ll bring up the resources that we recommend you look at at that particular step.
with hot links out to those particular resources. Now on the roadmap page also is a link to a downloadable digital guide, which is effectively everything that’s on the interactive page, but in a document that you can download. If you download the digital version, it you can leverage the hot links to get to the actual resources. Or you can print it if you’d rather see have a printed copy in your hands.
To cover the whole roadmap is going to take a few episodes. And we’ve divided it into the three stages that Sue and I define of dementia caregiving. And these are stages of dementia caregiving, not of your loved one’s dementia journey. These are the caregiving stages. So let’s quickly go through the three stages.
We’re going to focus on the first one in this episode, but the three stages are:
First, stage one is in the beginning. This is right after the diagnosis. This is when your loved one is still able to participate in a lot of ways. So you’re gonna want to go through steps like create like getting legal documents signed, understanding the financial situation while your loved one is able to participate in the process. So the first steps after the diagnosis are important and it’s important that you include your loved one in a lot of these steps. And we’ll talk about that today.
The second stage of your caregiving journey we call the messy middle. And that’s because this is when you’re starting to assert more control over a lot of things. But let’s think of the activities of daily living. Your loved one’s getting frustrated because they don’t always know what to do, and they’re struggling, and you are telling them what to do, and it gets messy.
The third stage is later on. And later on is when really your loved one is relinquished. The third stage is later on. And it’s really when your loved one has relinquished control. You are really responsible and managing all aspects of their care at this point.
In Podcast 66, Sue and I go through and talk just about the stages of dementia caregiving. So if you haven’t listened to Podcast 66, you might want to do that if you just want to hear about all the stages and in more detail about each one.
In this episode, let’s just talk a little bit about the ‘in beginning stage’ to set the foundation for steps one through six. The ‘in the beginning’ phase is really where you’re doing that. You’re setting a foundation for your caregiving journey. So we want you to think of a few things while you’re beginning your caregiving journey that will set the tone for a lot of how you interact with your loved one moving forward and how you manage things for your journey.
The first thing that we want you to think about is: you know, right after a diagnosis, you’re going to think “Okay, this person needs my help and my support.” We’ve confirmed they have dementia. You probably suspected it. It’s now confirmed. And so they need my support. And I’m, you know, I’m going to be their caregiver or, you know, share it with other people. But we he’s this person’s going to need caregiving. And what you have to know is that they’re not the only person who needs caregiving on the dementia caregiving journey. Your caregiving is responsible for two people. The health and the safety of two people. And that is your loved one, of course, but also yourself. Because you can’t be a good caregiver if your health is, if you’re not healthy and not and if you’re because you can’t be a good caregiver if you’re not at your best. And so when you think about dementia caregiving, you really need to to take seriously and caregive for yourself as much as you caregive for your loved one and make it just as big a priority because it will fail if you’re not at your best, or at least, you know, not running on fumes during the caregiving journey.
We also want you in the early stages here to set the foundation for decision making and caregiving. There’s a couple of things that we want to talk about.
The first one is safe and comfortable or safe and happy. When you’re making decisions, we want you to think: does this keep my loved one and me safe? And does it make us comfortable or make us happy? And just set those, set that sort of tone for your caregiving journey because you’re going to be checking a lot of times where you’re having to make decisions and you’re going to need something to check those decisions against. And that’s one of the things we want you to check against.
The second thing we want you to check against is dignity and independence for your person. This is difficult because as their journey progresses, they’re less and less independent, of course. But we want to provide as much dignity and as much independence as possible throughout the caregiving journey. But particularly here in the beginning, they’re really capable of doing a lot.
I know when my husband was first diagnosed with dementia, my first reaction was, well, now I’ve it’s all confirmed, I need to take over everything. And that really doesn’t support dignity or independence. And it didn’t go over very well either. So I learned to step back and be more in the background and leave sticky notes and prompt him for things, not ask him, well, don’t you remember we’re supposed to go out to lunch?
Say, you know what, now’s probably a good time to get dressed since we’re going out to lunch today. So dignity and independence. Check that in everything that you do throughout the caregiving journey, even though it becomes less and less possible for them to be independent. We want to support them as much as we can and support their dignity as well. Now it’s going to be natural, as I said, to try to want to take over. Their clothes aren’t on correctly or they didn’t match, for example. Is it really important that we make a big deal out of the fact that their clothes don’t match, or we let them be proud of the fact that they got dressed today on their own? So just check that as you’re making a decision. Your time will come where you’ll be dressing them, for example, completely. So let that come naturally. Don’t push it before it’s really necessary.
The last thing we want you to do or think about when you’re setting your foundation for caregiving is recognize that there is grief along the way. Early on, there’s something that Sue and I call drip grief. And this is those little punches in the gut. They don’t know it’s your birthday. They forgot their telephone number. They don’t know their address. They forgot their ATM code. Each one of those things, when you realize that they don’t have access to those things anymore, feels like a punch in the gut. And those are little bits of drip grief. And we need you and want you to honor your grief. We’ll talk more about that when we talk about support.
Okay, so as I said, in this episode, we’re going to concentrate on the first six steps of the caregiving journey.
Step one is to reach out for guidance. Investigate the organizations that are listed here, and we’re going to talk through each one of them to see if they can provide the kind of guidance that you might need to really help you through at least these initial initial stages and frankly throughout your caregiving journey.
The first one is palliative care. Now, a lot of people think palliative care is hospice. And there is a little truth in that, in that palliative care programs are most commonly provided by organizations that also provide hospice. So they’re related in that way. But palliative care, you’re eligible, your loved ones eligible for palliative care.
As soon as they have a diagnosis of a life-limiting disease. Palliative care is covered mostly by insurance. You will have to pay a copay. And they can sit alongside your current medical team. The interesting thing about palliative care is they’re another set of eyes on your loved one, which is great, but they also support the caregiver and they will help you through a lot of the steps that we’re talking about in.
This episode. So having palliative care involved can help give you some guidance. In the roadmap and in the digital guide, we have links to how to find a palliative care organization near you. So leverage that. We also have a podcast on palliative care and what it is to help you understand it and explain it better, as well as a blog. So if you don’t want to listen to a podcast, you can just read the blog on the topic.
The second group for guidance is reaching out to your area agency on aging, often called your AAA. This is not the AAA that changes your tires. This is a government organization and it’s a free service, and it’s in your state. It’s a state-sponsored program and in
Six or eight states, I don’t know the exact number, they actually have dementia care specialists as well. But either way, reach out to your area agency on aging. They can help you understand what free government programs are available to you, and they can help guide you through this early part of your journey as well. They’re a great resource. So in the guide, we have links to how to find the area agency on aging in your region. And region means in your state, there’s probably 10 to 15 area agencies on aging, and they are geographically set up. So you need to find yours, and there’s a link to how to do that.
The last thing is a certified senior advisor or something like that. There are certifications for people who are certified to work with seniors, and they help you through a lot of these exact topics we’re going to talk about: legal, health, et cetera. So finding a certified senior advisor, some of the things that they’ll do for you is like paying a consultant. Some of the things they do for you are at no charge. But we have a locator link as well. So if you want to try to find a certified senior advisor near you and then find out what they would charge you for and what they would not, it’s worth looking into as another sort of guide your dementia caregiving journey.
Okay, let’s talk about step two. Step two is to update legal documents, end-of-life planning, and other long-term care plans. So this is where we’re talking about with your loved one’s input, especially right after the diagnosis and early on in your journey, you need your loved one to be able to sign documents and it’s really important that they’re available to get a lot of these decisions made where number one, we need them to be able to sign and be competent enough to sign. But number two, we want their input. So let’s first talk about legal documents. One of the things that comes highly recommended is an elder law attorney. And it may seem like, my goodness, I don’t want to have to pay an attorney, but I’ve heard time and time again people say this was a major lifesaver in terms of someone guiding them through what needed to be done who does this all day every day. So we’ve put a link on how to find an elder law attorney in the roadmap as well as we have a podcast that we do on what is an elder law attorney with an elder law attorney to help you understand more about what you can expect from them.
In the United States, there’s also a link for free legal help. So if you don’t feel like you can afford an elder law attorney or not interested in that, but you do want legal help, you can find legal help through that link that we provided in the roadmap.
And then we’ve provided a link to the Alzheimer’s Association to the legal documents that you need to get pulled together. Things like medical power of attorney, financial power of attorney, a will, advanced directives, living wills.
End of life plan, pre-planning for your loved one, that sort of thing. Now, something to keep up and keep in mind, and I’ll say this multiple times, the Alzheimer’s Association is not just for people with Alzheimer’s. It covers all types of dementia. So their history is Alzheimer’s, of course, but all types of dementia are supported by the Alzheimer’s Association. So we link to them a lot.
We also have an end-of-life planning worksheet. So you can download that or click on that and at least it’ll tell you through, talk you through a lot of the things that you want to make decisions with your loved one. Do they want to be buried? Do they want to be cremated? How do they feel about a celebration of life service, et cetera? So leverage that end of life worksheet as well in step two.
Step three is to understand the financial situation. We have a podcast on how to have the financial conversation, particularly with parents. A lot of people are very uncomfortable, and it is uncomfortable if you’re a child to begin to nose into your parents’ financial situation. And then in the podcast, we also discuss what financial information you need and how you need to pull it together. The expert in that podcast is a financial advisor. So listen to that or read the appropriate blog. We highly recommend you work with a financial advisor. If you don’t have a financial advisor, look for one who specializes in seniors. But also a lot of elder law attorneys, they understand this part of the process as well. And they can walk you through a lot of the documents and things that need to be done in the financial part of this in this step understanding the financial situation so if you’re leveraging an elder law attorney take advantage of the fact that they can probably help you through a lot of this so the financial situation is things like long-term care insurance does your loved one have it when can you and how can you execute on it social security is your loved one on disability or taking social security already if they’re not, they’re eligible for Social Security disability. How do you do that? What forms do you need to fill out? Medicaid, are they eligible for Medicaid? Is your loved one eligible for Medicaid? How do you leverage that? Or what do you need to do to make that happen? Veterans Administration, also available for a lot of free support. Are they a veteran? How do you know what forms do you need to fill out? How do you get support from the VA? Other forms of income. So
Highly recommend that you talk to a financial advisor if you have one. If not, that elder law attorney’s another good person to talk to about understanding the financial situation and getting your affairs in order.
Step four, find support groups. First and foremost, you want to find support groups for you. And at this point in your journey, you should be at the beginning. We hope your loved one is independent enough that they can, you can leave them at home alone. And so this is a good time to go find a support group and go in person.
Because later in your journey, it’s harder to be able to go get out and go to support groups in person. So it’s good to get that one-on-one time now, that face-to-face time now, with other people who are going through a similar situation. We have a podcast on how to find the right support group for you. We have a link to the Alzheimer’s Association website where they have a support group finder. Once again, the Alzheimer’s Association is not just for Alzheimer’s. You can find support groups.
Based on the type of dementia or the situation you’re in, if you’re supporting a parent or a spouse, you know, really think through what kind of support group you’re looking for, virtual, in person, something that’s a combination of both. You can also go to the Trusted By Us page on our website. And if your person has a type of dementia like Louis Body or Fronto-Temporal, you can find a link to how to find support groups.
If you don’t feel comfortable going to the Alzheimer’s Association website, go to our Trusted By Us page on thecaregiversjourney.org and and find the support group finders in for the other types of for other types of dementia. In addition to support groups
There are also 24-7 hotlines. The Alzheimer’s Association has a 24-7 helpline that you can call for support. We also list on that Trusted By Us page the hours and support line numbers in the U.S. for other associations like Louis Body and Frontotemporal. Some people tell me they give these support group numbers, these telephone numbers to their family because they’re tired of trying to answer questions for their family that they don’t know the answer to. So they tell you know, call this telephone number, they’ll answer your questions. So take advantage of that if you can.
And the last thing I want to talk about is support for the person living with dementia. These support groups are really few and far between. There are not a lot of support groups for the person living with dementia. Every now and then you’ll find a support group that is for both. So you and your loved one go, and the person living with dementia goes off to a group, and you go off to a group. But they are, like I said, few and far between. There is an organization called Dementia Minds that is focused specifically for people living with dementia. They have virtual support groups online. Their board of directors is all people living with dementia. Not the people who work there, but the board of directors is. So their whole goal is to provide activities and things and highlight, you know, people living with dementia and support them. So if your loved one is interested, check out Dementia Minds. It’s a good place to go look for support for them.
All right, let’s talk about step five. Step five is not something you’re gonna do with your loved one. This is for you. And that is to educate yourself on some early caregiving topics. Just two. We want you to listen to two specific podcasts. Podcast number two on memory loss and podcast number three on communication.
These podcasts or read the blogs, as I’ve said, the blogs have the same number as the podcast. These podcasts really help set that foundation for what’s getting ready to happen or probably is happening with you and your loved one. Memory Loss Podcast talks about those little punches in the gut and really help you realize you’re not alone. This is normal what you’re going through. And then the communication one is about.
How to empathize better and think about your communication style as your loved one progresses through their journey. I’ve had a lot of people tell me they wish they had listened to particularly the communication podcast earlier, that they would have been a much nicer caregiver and a much more empathetic caregiver earlier in the journey had they done that. So highly recommend you listen to those two podcasts or read the blogs early on in the journey.
And finally, step six. This is a US-specific step. In step six, we want you to investigate the Medicare Guide program. Now, we have a podcast to explain the guide program, so you can listen to it or read the blog. The Medicare Guide program is a pilot program for Medicare. We’re a couple of years into it, but it is a Medicare innovation that’s focused on how do we support people living with dementia and their caregivers with the expectation that care that Medicare will have less expenses, that Medicare will have less expenses if they’re caring for the caregiver as well. So there’s $2,500 of respite, which means the ability for a caregiver to take a break and pay for someone to come into the house or for your loved one to go to a program annually, $2,500 annually paid for by Medicare.The organizations that deliver Medicare guide programs, are required by Medicare to have 24-7 helplines so that you can call in and get your questions answered 24-7. They also have social workers, the Medicare Guide program participants do. So there’s someone to guide you through this journey, like we’ve talked about. The eligibility requirements are linked to in the roadmap so you can see if you’re eligible for the guide program. As well as hide how to find a guide program near you, also linked to in the roadmap.
So let’s summarize. In this episode, we talked through steps one through six, which are the first six steps Sue and I believe you should take in your dementia caregiving journey right after the diagnosis.
Step one: Reach out for guidance.
Step two: Update legal documents, end of life planning, and other long-term care plans.
Step three: Understand the financial situation.
Step four: Find support groups.
Step five: Educate yourself on early caregiving journey topics.
And step six: Investigate the US Medicare Guide Program.
Now if you have tips, on things that people should do right after the diagnosis, please leave them on our Facebook page or our Instagram page. The links are in the podcast description.
For every podcast, there’s a matching blog, so find this podcast number, go to the caregiversjourney.org, find the blog with the exact same number, and you’ll effectively find the notes written for this podcast.
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