Additional Resources Mentioned
Takeaways
In this episode we covered steps 7-10 of the 20 step roadmap.
The last of the steps in the In The Beginning stage.
- Step 7: Continue your education
- Step 8: Start planning for the next stage of care
- Step 9: Investigate your local government community support
- Step 10: Evaluate driving risks
Read More in This Blog
Full Episode Transcript
Nancy Treaster
Did your loved one recently get a diagnosis of dementia? Have you gone through the first six steps of the navigating dementia caregiving roadmap? In this episode, I’m going to cover steps seven through 10 that Sue and I recommend you take on your 20-step dementia caregiving journey. We’re still in the beginning.
This episode covers steps seven through ten of the 20-step Navigating Dementia Caregiving Roadmap version 4. We first launched the roadmap in August of 2025, and we’ve been updating it. We updated it based on podcasts that we’ve published that relate directly to a step in the roadmap, as well as things we’ve learned from others in the dementia caregiving space.
The good news is the most up-to-date version of the roadmap is always available on our website, thecaregiversjourney.org. On the homepage, there’s an icon that says Caregiving Roadmap. Click on that, and it takes you to the page, the roadmap itself. It’s interactive. There’s 20 steps. You literally click on a step number and it brings up what we recommend you do in that step and hot links to the resources available in that step.
So on that same page, the Caregiving Roadmap is also a link to a downloadable digital guide. And it is exactly what’s in the interactive web page, but in a guide. And if you use the digital version, the hot link still works. So you can click on a hot link in the digital version, it takes you to that website or that place. Now you can also print it off. A lot of people feel more comfortable with something in their hands. So download the digital guide, print it, if you’d like to have something in front of you.
Of course, there’s 20 steps in the dementia caregiving roadmap, like I said. And so we’ve divided those steps up based on your stage of dementia caregiving. Now, this is the dementia caregiving stage, not the stages of dementia. Hmm, they’re loosely aligned because your caregiving changes as the dementia changes. But we’re here talking about your stage of dementia caregiving.
There’s also a self-assessment tool on the Caregiving Roadmap page that you can click on and answer five questions, and it’ll give you a good idea of which stage of caregiving that you’re in. Regardless of where you land, we recommend you go back and look at the steps before that stage. So let’s say you land in the messy middle, go look at the ‘in the beginning’ steps to make sure you didn’t miss anything important to creating your caregiving foundation.
That’s really when we talk about steps one through six. Those are really the steps that you need to take to create a good, solid foundation for caregiving. And a lot of those you take with your loved one side by side. So let’s quickly go through what the three stages of dementia caregiving are. This is still in the beginning, so we’re going to cover that in a little more detail. But the three stages are in the beginning, which is right after the diagnosis, the messy middle, which is later in your journey, when your loved one is struggling with a lot of the activities of daily living, and you’re starting to assert more control, they’re getting frustrated because they don’t know exactly what to do. And you’re getting bossy because you’re telling them what to do, and it can get messy. And then the third stage is later on. And this is really towards the later part of your dementia caregiving journey, and your loved one at this point has relinquished control, and you’re really managing all aspects of their care.
So we’re going to focus, as I said, on the ‘in the beginning’ stage. And in the beginning, we want you to set a solid caregiving foundation. We have a podcast, Podcast 66, takes you through all the stages of dementia caregiving from beginning to end and really talks you through how things unfold and where and how you should think about your caregiving journey as they unfold. But in this episode, we’re going to talk specifically about ‘in the beginning’.
And the ‘in the beginning’, as I said, you’re setting a lot of the foundation for your caregiving journey. And there’s some foundational level things we want you to think about. First, we want you to think that you’re not caregiving just for one person. You’re caregiving for two people at this point. What do we mean by that? Well, of course, you’re caregiving for your person that’s living with dementia, but secondly, you can’t survive a dementia caregiving marathon is probably a good description of it because these go on for a very long time typically, if you’re not healthy yourself. And so you have to take seriously caregiving for your loved one and caregiving for you. So always think of yourself as caregiving for two people. Secondly, as you make decisions through your caregiving journey, we want you to keep a couple of things in mind.
The first one is – Safe and comfortable, or Sue likes to say safe and happy. Does this decision keep me and my loved ones safe? And does it keep us comfortable and or happy? So check your decisions. That’s an easy way to check against safe and happy or safe and comfortable. The second thing we want you to keep in mind is dignity and independence. And that is for your person living with dementia. Does this support their dignity and does it support their independence as much as possible? Later in the journey, that’s very difficult, but we want to try to support their independence as much as possible. But particularly here in the beginning, we want to support their independence as much as possible and their dignity. And that means not taking over control of everything.
My first reaction after my husband got a diagnosis of dementia was well, now it’s confirmed. I knew something was wrong, but now it’s confirmed and he’s got dementia, so he’s gonna need all sorts of help. Well, the reality is they can still manage a lot on their own in the beginning, and we’re not doing them any favors by taking over. Matter of fact, we’re undermining their dignity and undermining their independence. No one wants that. So back up and and and think of yourself more in the beginning as behind the scenes. What are you doing behind the scenes? Leave sticky notes. Label things if that’s necessary. Prompt your loved one on things that they need to do, like go take a shower. Don’t ask them, don’t you remember you were gonna go take a shower? So you know, check your language. Part of what we do in the first six steps is there’s a podcast on communication that helps you build some empathy in the way you communicate with your loved one.
And then the last thing we want you to do to set this solid foundation is to realize you are going to be grieving along the way. And you need to honor that grief and find support for it. So, particularly in the beginning, we think of it more as drip grief. And drip grief is those little gut punches that happen throughout the early part of the journey. You realize that they don’t know their phone number anymore or their birthday or how old they are. And it just hits you like a little punch in the gut every time. And that’s what Sue and I call drip grief. And that’s why you need support. You need to honor that, understand it’s part of grief, and get the support you need to emotionally get through that. So drip grief is real and we want you to honor it as you set your foundation for your journey.
Now, as I said, in this episode, we’re going to concentrate on steps seven through ten. And we recommend if you haven’t gone through steps one through six, go back and listen to that episode or read that blog and make sure that you’ve covered steps one through six so that you have created a good solid foundation. And a lot of those steps you’re going to do with your care receiver.
Now you do steps one through six right after the diagnosis. And the way we’ve broken in the beginning up is steps one through six right after the diagnosis. Give yourself a break after that. Everything doesn’t have to be done immediately. But when you find yourself ready for more, and you think, okay, I can take on a few more things now. I’ve got steps one through six under my belt. Come back to the steps seven through ten. We want you to get these done too, before you get to the messy middle. But they don’t have to be done right away.
All right, let’s start. Step seven is ‘continue your education’. So by ‘continue your education’, we did a little bit of education in the first six steps. We listened to those two podcasts, one on memory loss and one on communication, just to set some foundational level things. But now we’re ready to get sort of a bigger view of what this caregiving journey is going to look like. And there’s two really good high-level overviews that can help you get that, education and confidence that you know what to expect. And of course, we won’t know what to expect every day, but to get a general idea of what to expect.
The first one is a course called Savvy Caregiver. It is well known as probably the gold standard for dementia caregiving training. We recommend in the beginning, if you can still leave your loved one at home, they can stay home by themselves or leave them by themselves, that you take the savvy caregiver course in person if possible. It is a wonderful course and sort of a little support group at the same time because you’re around other people who are supporting their loved one who’s living with dementia. But it doesn’t have to be taken in person. It can be taken online. And at a minimum, please take the Savvy Caregiver course online.
Now, in that same vein, another good sort of high-level view of the dementia caregiving journey is a magazine called Mayo Clinic Living with Dementia: A Guide to Caregiving and Support. We have a link to this particular magazine so that you can buy it. It’s not expensive in the roadmap. So take advantage of that. It’s a good thing to have and to read to also give you a high-level view of what the caregiving journey is going to look like.
We don’t want you to get too far ahead of yourself because part of the roadmap is this is what we suggest you focus on now. You don’t have to worry about all the messy middle and what’s coming and later on. You’ll get there. No need to worry about all those things or to focus on any of those things. But we do want you to get sort of a general idea of what’s coming.
The last thing in the education department that is worth doing is going on a virtual dementia tour. We have a link to how to find one in the roadmap. We also have a podcast on what is a virtual dementia tour. But to give you a high-level idea, this is available worldwide. This is an in-person thing you do, but you go and they put you in a room and mimic what it’s like to have mid to late stage dementia. So you start to build some empathy for how much change your loved one is going to go through and what to expect in terms of vision changes and their sensitivity and feel changes. And it’s just a really good way to build some empathy for the journey. I’ve never talked to anyone who did it who didn’t say that was so outstanding and I wish I’d done that earlier. So we’re recommending you do it pretty early in your journey in step seven.
All right, let’s talk about step eight. Step eight is to start planning for the next. Step eight is to start planning for the next stage of care. We’re not talking about professional caregivers at this point, but we are talking about building your personal support network, your personal care network. This is friends and family at this point. We have a great podcast on how to create your personal support network. You can also read it in a blog, but the goal here is to allow other people in to help support you before you need professional caregiving as a bridge to help you find time to go to the grocery store or to get your loved one out of the house so they’ve got things to do. Go to lunch with someone. Really all the little things that will help you get some reprieve, both for yourself and for your loved one. It’s important. And it’s important that you set this network up early. Who’s going to do what when and who’s helping you and who offers to help? Really, really important in the beginning. It doesn’t feel important in the beginning. We’re telling you it’s important in the beginning. Do it so that you’re ready so you know what’s coming, the next stage of care, as we said.
Another thing in the next stage of care is dementia day centers. You don’t need to execute on dementia day centers now unless you want to, but we want you to investigate dementia day centers. Find the ones near you, go visit some. Understand what their clientele look like. Figure out which ones might be good ones for your loved one to go to. Dementia day centers are really not something you can go to later in your journey. They’re only really appropriate ‘in the beginning’ and in the early middle part of your journey. And so they are a place where you can take your loved one. Usually the Dementia Day Center will let you come in and sort of have coffee with everybody. So you just say, I’ve met some new friends, let’s go have coffee with them. And you go have coffee and you figure out is this an environment that your person living with dementia would thrive in? I’ve heard people say that they took their person to one dementia day center and they couldn’t wait to leave. They took them to a different dementia day center. and you do like anything, it’s like leaving your child in daycare. You know, you do need to, they’re not gonna love it immediately anyway. So you have to find a way to sneak out, and the people who run these day centers will be able to help you with how that works because they do it all the time. But they took them to another dementia day center and their person kept calling them, telling them not to come pick them up because they wanted to stay. So, you’ll find the right one. But a dementia day center, later in your journey, we’ll talk about this in the messy middle. It can be a real lifesaver and it can even be a real lifesaver earlier in the journey to give your loved one a way to get out of the house and get and have things to do.
In addition to dementia day centers, there are things called memory cafes. And memory cafes are also a great way to get out and have things to do. This you do with your loved one together. So together you go to a memory cafe and you do projects and things together, but it keeps the pressure off having to keep your person entertained and gives you another place to go and meet other people who are going through the same journey as you. So it acts a little bit like a support group as well.
We have a link to how to find a memory cafe near you in the roadmap. The last thing we’d like for you to do in this next stage, investigating the next stage of care, is have a home safety assessment. If you were eligible in step six for the Medicare guide program, they will perform a home safety assessment as part of that program. So you may already have one. But if you weren’t, you can talk to your doctor, your loved one’s doctor, about writing a prescription for occupational therapy, which those people will come in and do a usually a home safety assessment. If you can’t get it done at no charge, you can hire somebody to come do a home safety assessment. This is also important to do in the beginning because once you get to the messy middle, safety’s gonna turn out to be one of the things we’re most focused on right at the beginning of, well, that’s confusing. At the early part of the messy middle, home safety’s one of the first things we’re gonna focus on. So we wanna have a home safety assessment now so we know what things to expect and what needs to possibly change.
Step nine, investigate your local government community support. Best way to do this is back to step one, where we talked about your area agency on aging or your AAA. Now, if you didn’t leverage the AAA in step one, fine. But at this point, we want you to make that phone call. If you’re in the US, this is US-specific government program, if you’re in the US, we’ve got a link to how to find your regional triple A, not the kind that changes your tire, area agency on aging, a link to find your regional. And by say when I say regional, this is state specific, and there might be 10 to 15 in any state. So it’s specific to your region in the state, but we have a link to how to find the area agency on aging that’s for your area. We want you to call them and find out what the local government resources and community resources are that are available to you in your area. In six or eight states, some AAAs have dementia care specialists. And so they might pass you to a dementia care specialist who literally focuses all day on just resources for people who are supporting someone living with dementia. Also at this point, they can help you figure out if you’re eligible to be paid as a caregiver. So worth checking in on that as well.
Step ten, evaluate driving risks. When we originally built the 20-step dementia caregiving roadmap, this was at the beginning of the messy middle because it’s part of safety. And that’s one of the first things we cover in the messy middle. However, before we ever published the first version, we had five different social workers go through the roadmap with us and make their recommendations. And one of them suggested this, and then they all agreed, which is nope, driving can’t wait. You have to evaluate driving risks in the beginning. Why? The rules in every country and every state on driving with dementia are different. In some states, the doctor has to tell the driver’s group, whoever that is, the government, the transportation department, that someone has a diagnosis of dementia. And in some states, like the state I live in, the state of Georgia, it’s really up to us as the caregiver, can the person still safely drive? However, I have heard horror stories about people who are driving early with dementia and they’re in an accident, and their dementia diagnosis comes out, and they get blamed for the accident, even though it wasn’t their fault, and they were tragic financial implications.
Now, I let my husband drive for the first couple of years of his dementia diagnosis until I felt like it was no longer safe. But you need to evaluate the risks. That’s what this step is all about. We do have a podcast on this as well. So it’s worth reading when it is time to take away the keys. Sometimes it’s easy, sometimes it’s not. So we want to help you through that process. And that’s what that podcast is all about, or read the blog.
All right, let’s summarize. In this episode, we discussed steps seven through 10 of the 20-step dementia caregiving journey. We’re still in the beginning, so make sure you go back and look at steps one through six if you haven’t yet.
But let’s talk about what we covered today.
Step seven, continue your education. High-level education now on what the whole journey is going to look like.
Step eight, start planning for the next stage of care. Get your ducks in a row for the support you’re gonna need.
Step nine, investigate your local government community support. Those AAAs in the US, Area Agency on Agent. If you’re in a different country, find the local government community support group for you.
And step ten, evaluate driving risks.
If you have tips in the beginning, please share them on our Facebook page or our Instagram page. The links are in the podcast description. Every podcast has a matching blog. So go out to thecaregiversjourney.org. You can take the number of this podcast, find the blog with the same number, and you’ll find a blog which covers the topic of this podcast. So it’s effectively taking the notes for you.
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