Additional Resources Mentioned
Takeaways
The three stages of dementia family caregiving and the self-assessment tool on the caregiving roadmap page of our website, thecaregiversjourney.org.
- The first stage is “In the Beginning.”
- The second stage is “The Messy Middle.”
- The third stage is “Later On.”
If our self-assessment tool shows you are further along in your journey, start there. Once you feel confident in where you are, we encourage you to go back and explore the earlier steps. You may find helpful tips that apply to where you are today, even if those steps were designed for an earlier part of the journey.
Full Episode Transcript
Nancy Treaster
Have you ever felt overwhelmed by not being able to find the information you need, or by so many conflicting resources that you don’t even know where to begin? Well, Sue and I have built a roadmap to point you to the right resources at the right time. 20 steps based on where you are in your caregiving journey. We’ve broken the journey into three distinct stages of dementia family caregiving. We’re also in this episode introducing you to a simple self-assessment tool that’ll help you figure out where you are in the journey.
Sue
Before we talk about the stages of caregiving, let’s talk more about the 20-step navigating dementia caregiving roadmap. First, it’s free and it will always be free, as are all of our resources. We created the first version back in August 2025, and we continue to update it as we add other podcast episodes that relate specifically to one of the roadmap steps and as we learn great insight from professionals in the dementia caregiving space.
Nancy Treaster
And the most up-to-date roadmap is always available on our website, thecaregiversjourney.org. We have a specific page called the Caregiving Roadmap. Click on the icon, it’s on the home page of Caregiving Roadmap, and that will take you directly to the roadmap page. On the roadmap page are the 20 steps numbered. Click on a number and it behind and then it’ll bring up the resources that are available or that you should focus on for that particular step.
Now, also on that page is a link to a downloadable digital guide, which is effectively the roadmap that’s on the interactive page, but in a digital guide that you can keep for yourself.
Sue before we get into the stages of dementia caregiving, let’s talk a little bit about how the roadmap was designed, because I think that’s gonna give them some context about the stages.
Sue
Absolutely. We designed the roadmap so that while there are 20 steps total, you don’t have to deal with all 20 steps or say, okay, well, I’m going to read through all of these and then figure things out. So we don’t want you to have to do that all at once. Our goal is to meet you exactly where you are in your caregiving journey and help you focus on what matters right now.
Nancy Treaster
So later in this episode, we’re also introducing you to a self-assessment tool that we created. This tool will help you figure out which caregiving stage you’re in so you know where to focus your attention. The roadmap is designed to help you focus on what’s important now because you don’t need to do everything at once. And then the self-assessment tool is also on the roadmap page of our website. So you can find everything you need on that roadmap page.
You can take the self-assessment now, figure out what caregiving stage you’re in, and then as things change, take it again. See if your caregiving stage has changed.
Sue
And that’s so important. You can take it over and over again so that you always are updated on where you are in your journey and know what to be addressing right now.
Nancy Treaster
Exactly. Sue let’s give a little bit of history, or at least a little high-level overview of the three stages of dementia family caregiving before we jump into the more detail.
Sue
Okay. When Nancy and I talked through our caregiving journeys, we recognized three distinct stages. And in this, we’re not talking about the stages of your care receiver’s dementia diagnosis journey. We’re talking about your family caregiving stages.
So the three stages we came up with are in the beginning, stage number one. This is when our loved one is still able to be completely or somewhat independent. So it’s right in the beginning. One of the things that we do when the diagnosis has come, but it’s really in the beginning of it.
And that transitions into stage two, which we call the messy middle, and we call that for a very good reason. this is when you start asserting more control because they’re not able to successfully manage everything on their own anymore.
And yes, it gets messy because often they still think they can. And then that leads us to stage three. And stage three is later on. This is when we’re now managing all the aspects of their care, and they’re not resisting, and they’re not able to support us in that anymore.
So, Nancy, let’s talk in more detail about that first stage one in the beginning.
Nancy Treaster
The first stage, as you said, Sue, is in the beginning. This is pretty much right after your loved one has received a diagnosis. And the steps we want you to go through in the beginning are steps that we believe will help you create a solid foundation for the rest of your caregiving journey. So let’s talk for a second about a few of the things that you need to consider in the beginning.
First, you go to the doctor, you get a diagnosis of dementia. Your first thought is, I need to caregive for my loved one who has a diagnosis. We want you to think that you are now the caregiver, not for just one person, but you are a caregiver for two people. And it’s just as important that you keep both those people’s health in mind. And the th the second
That you are now the caregiver for two people. And you have equal responsibility for caregiving for both. Now the first person’s obvious, your care receiver. The second person, not so obvious. It’s you.
Sue
Yeah. And it’s so important. Nancy and I both learned this the hard way. And part of the reason we’re prioritizing it so much is that while we may hear all the time that, you know, it’s it’s important to practice self care and take care of ourselves, you know those of us who’ve been on the journey who talk about it, we talk about it for a reason because no one else can do your own self care for you. And if you don’t, you’re gonna need a caregiver.
Nancy Treaster
True. That’s so true. And we talk about dementia family caregiving. Sue and I talk about this. It’s specifically dementia family caregiving. It’s a marathon. It’s not a sprint. And so you have to keep your energy up till the very end. And there are a lot of people who can’t get comfortable with the concept of self-care. It feels too much like it’s about them and they want to focus on their care receiver.
And so I want you to think about it this way. Think about how you act when you’re stressed, when you’re exhausted, when you’re overwhelmed. Personally, I’m not so pleasant. You can ask Sue. I mean, I get really impatient. I get kind of short. You know, I’m not the most pleasant person to be around. And so you need to take the time to give yourself a break and recharge.
If not for yourself, for your care receiver, so that you can be a patient, pleasant caregiver for them.
Sue
And Nancy, part of the reason that this is so incredibly important is we would really want to do the very best for our care receiver. And so we shave off our own self-care. And we don’t necessarily know because we don’t have experience with knowing when we’ve shaved off too much. And I know for myself I didn’t know that. And so when I had shaved off more than I could and I was not pleased with the outcome, I got an accountability partner. I got somebody else who could see in me what I could not see in myself. So the most important thing is that one way or another we are prioritizing our self-care so we have the capacity to care for our care receiver throughout their journey. As we’re going through the steps here in the very beginning, there’s another concept that’s really important for you to prioritize for both you and your care receiver.
I picked two words and they have kind of different connotations, but I look put it through everything through the lens of is this helping my care receiver be safe? And is it helping them be happy? Is what we’re going to be doing going to help them be safe for themselves, be safe with everything around them? And is it going to help keep them happy?
And as their journey progresses, happy is probably not necessarily the word that you would choose, but comfortable, so that they’re not in as much stress, that they’re in the best place for them. And when I got professional caregivers supporting me as well, and supporting my loved ones, we used the same model. What is this doing to keep them safe? What is this doing to keep them happy?
Nancy Treaster
I like that Sue. Happy or comfortable, either way, you’re right. That works great. Another concept that you and I talk about a lot, and these remember, these are foundational. So we’re gonna get in the habit of thinking this way now in the beginning, so that we’re creating a solid foundation throughout the journey. So another concept in the beginning is dignity and independence. So we want to ensure as much as possible throughout the journey, our care receiver has their dignity and their independence, as much as possible. And of course, what’s possible changes throughout the journey. But it’s especially important here in the beginning, while they’re still very aware of what’s going on, while they’re still very capable of contributing to what’s going on.
Sue
As you’ll see from the twenty steps, the first six are specifically designed with that in mind. We are doing steps that include our loved one as much as possible because they can and they should participate in creating as much of the foundation for the rest of the journey as possible while they still can.
Nancy Treaster
And you know, Sue, your natural instincts, at least mine, were right after the diagnosis, my goodness, I’ve been suspicious, my loved one’s struggling, but now we have an official diagnosis of dementia. So I just need to take over everything. They can’t do anything. And talk about dignity and independence. That doesn’t support either one of those two things, by the way. If you take over everything too soon, you undermine their dignity and undermine their independence. And that’s not helping anybody. So resist that urge to take over and step back and support them as much as you possibly can behind the scenes.
I had a friend I was talking to the other day, and her spouse just got a diagnosis of dementia. And she said, I’m having to check myself because I keep wanting to tell him and keep do telling him, don’t you remember? Blah, blah, blah. I know it. And bless his heart. I know he doesn’t, she said.
And I said, you know, honestly, Sue taught me this, but think of it more as prompting. You’re not asking them to remember that it’s time to go take a shower so that you can go because it is you because you are all going out to dinner, but prompt them. You know, now would be a good time to go take a shower because we’re going out to dinner tonight. So just think of yourself in the beginning as prompting them behind the scenes or quietly so that you’re supporting their dignity and independence as much as possible.
Sue
And while this is great to be doing, there’s something else going on in the background. And I know for me, I wasn’t even aware of it in the beginning at all. And it’s that we begin grieving losses along the way. Some of them are minor, some of them are more significant, but there’s a little loss here and a little loss there. And we call this drip grief. It’s still grief. One of the first ones that hit me with Jack was I was fixing something and it occurred to me we needed an ingredient we didn’t have. And I almost let out of my mouth, hey honey, would you run to the store and pick this up? And I realized I couldn’t do that. And so you grieve those in the moment. Give yourself so much grace when those moments come.
Nancy Treaster
And I used to think of those Sue, as punches in the gut. You know, your birthday’s next week and they have no earthly idea. You know, it’s a punch in the gut. You know, they don’t know their telephone number, you know, it’s a punch in the gut. And really all those punches in the guts are just grief. It’s drug grief. So honor it. You know, recognize it, honor it, and let yourself work through it. Don’t just ignore it.
Sue
And don’t necessarily work through it alone.
Nancy Treaster
Even better, right? If you can get other people involved to help you work through it, that’s even better. Have a friend to talk to, etc. I agree.
So we’ve talked about caregiving for two people. That’s a good example. Don’t manage your drip grief by yourself. Get a friend. You’re caregiving for two people, not just your care receiver. The other one is you. We talked about the foundation of ‘does this keep my loved ones safe and happy or safe and comfortable’? Does this support my loved one’s dignity and independence?
And does this honor my grief, my drip grief? Is it drip grief? And am I honoring it and recognizing it and letting myself work through it? Okay, so let’s move on to stage two.
Sue
Stage two is called the messy middle. I began using this term many, many years ago early in my caregiving journeys because there was a real transition to where things started getting really messy. They’re getting more and more frustrated. There are more things they think they can do, but they really can’t. When they do them, they’re not turning out well.
We’re needing to assert more control.
Nancy Treaster
Some might call that getting bossy.
Sue
Yes, some might. but this is when it does get messy. Your care receiver still does think they can do most things. They are still kind of with it. And we’re becoming more actively involved directly or indirectly because they really can’t. And this adds to their frustration, but it also adds more to the work that we’re doing.
Nancy Treaster
Exactly. And there’s a lot in the messy middle of observing and adjusting because it’s a little bit of two steps forward, one step back, you know, where they don’t get dressed correctly and then, you know, for a few days and then they do one day. And you know, it’s just a lot of observing and adjusting. What do they have access to today or right now? And what are they losing access to and you need to step in and take complete control over it because it’s no longer something they can do? Or they can only do a certain part of it.
A lot of the podcasts where we have around activities of daily living, we talk you through the progression of it so you can start to see when it’s starting to fall apart and we talk you through how you will insert yourself into that activity slowly over time as you begin to to take it over
But it is messy, as you said, Sue.
Sue
Well and and and we do want them to maintain their independence as much as possible and do everything we can support you know, for example, I had with Jack one day he came out and he had his shirt on backwards. Well, I didn’t want to tell him your shirt’s on backwards, you need to go change your shirt. I said, Honey, it looks like you’ve got a spot on your shirt. May I please see your shirt? So he took his shirt off and I said, Yeah, I think you’ve got a spot.
And I handed him a shirt to wear, but I handed it to him where it was facing forward and he would put it on correctly. So it made it very simple. Now there’s another example of this though that is where it gets even messier. his whole career my husband was a numbers guy. So obviously he was doing our finances. Well, he started doing a number on the numbers. And he still wanted to do them and I wanted him to be able to do them as much as possible, but after he went to bed, I would go in and I would fix back up the numbers.
Well, that’s messy and that’s not sustainable, but it’s one of the things that we do until, you know, either they can’t do it anymore, or we just have a conversation with them about it.
Nancy Treaster
Or we can’t do it anymore, right?
Sue
Or we can’t do it anymore either, yeah, ’cause there are only so much. So yeah. At any rate, there’s an inciting incident that’s gonna come to the end of it.
Nancy Treaster (19:36.236)
Right. And that’s part of observing and adjusting. You know, you’re adjusting, you’re adjusting, and eventually they’re you have to recognize they’re probably getting really, really frustrated and maybe even scared because they don’t know what to do. So part of your part of your role is observe and adjust and know when to just remove the activity all the way around. While this is challenging for you and for them.
We’ve already talked about, you know, it’s frustrating to watch them be frustrated and it’s frustrating to have to go fix the numbers. It’s also very important as these are in the messy middle, probably more than any other time, but all really throughout your journey.
But the messy middle is when I think this concept will be challenged the most. And this was part of my foundation. I learned it in the messy middle because I didn’t act this way and I caught myself and retrained myself to think.
How would I want Kim, that was my husband’s name, how would I want Kim to treat me if the roles were reversed? So if I came out with my shirt on backwards, would I want him to be frustrated and huff and puff about how I didn’t do it right? Or would I want him to be empathetic and kind and more like what Sue said, you know, you’ve got a spot on your shirt, let’s change shirts. Incontinence, another example. What you know, that that’s embarrassing, I’m sure, for him and so how do I want to treat it? Even though it’s frustrating for me, I want to treat him with as much dignity as possible. So that means I need to think, if the roles were reversed, how would I want him to treat me?
I think of this as kind of do unto others as you would have them do unto you. And I created that foundation in the messy middle after not doing it, obviously. I taught myself to do that. And I’m telling you, it helped a lot.
Sue
Yeah. Nancy, that’s so powerful.
So yes, so stage two is messy and it’s called the messy middle for a reason, but then it transitions into stage three. And stage three is what we call later on. And this is where we’re now managing all the aspects of their care. They’re not resisting, they don’t even necessarily recognize what many of the things are. Caregiving becomes easier in some ways in this stage, and then it also becomes harder in some of the others.
Nancy Treaster
It sure does. And part of it is because you are managing all aspects of their care. It is you know you’re doing everything. And that can be exhausting for sure. Now we hope that when you went through the early stages in the beginning, as Sue talked about, those first six steps, we want you to go through those as much as you can with your loved one. You’re making end of life decisions, you’re making advanced directives, you’re planning out cremation or burial, you’re planning out other celebration of life opportunities, you’re filling out legal documents and financial information and you’re leveraging your loved one to help make those decisions.
But when you get to the later on stage, you need to revisit those. We hope you did a lot of it up front. Even if you did, it needs to be revisited at this point because now’s the time where, before you’re in the full grief and shock of your loved one passing away, now’s the time to go refresh those documents and make sure that you still have what you need. And there are actually some additional steps that you need to take at this point beyond what you were able to do in the first six steps with your loved one. So we’ve got some worksheets out there and some things to look at that are all accessible in these later on steps.
Sue
And one of the things we talked a little bit about drip grief, but there’s another kind of grief that’s coming in now, which is in this later on stage, we recognize we may not know that the end is, you know, next week. It could still be several years. We don’t know that. But what we’ve recognized is that, wow, they’ve really declined and there’s a lot more going on.
And we actually kind of get in it’s called anticipatory grief. We’re kind of now grieving the loss of them and what it might be like after they’re gone. And when you feel that kind of grief, that’s the kind of grief you reach out and talk to someone about.
Nancy Treaster
Exactly. This is another opportunity to prioritize your own self-care and your own support lines. So check yourself and check your own self-care and make sure that you’re getting the support you need at this point in your journey.
Sue
Very good. Nancy, you mentioned earlier, and this is the perfect transition into it, that we created a self-assessment tool. And it’s on the roadmap page of the website. It’s very straightforward. It’s five questions. What they’re designed to do is to help you figure out which of these caregiving stages you’re in. So you’re able to narrow your focus to the things that are important right now.
And one of the things that makes this tool so valuable for you is it’s specifically designed for you to keep coming back and taking throughout your caregiving journey so that you know where you’re transitioning from one stage to the next. So then you begin looking at the roadmap, at the steps of the roadmap that are gonna be relevant to where you are in your stage of the caregiving journey, and you’re focusing on those things.
Nancy
Thank you Sue, that’s so valuable as well. So let’s summarize.
In this episode, we covered the three stages of dementia family caregiving and the self assessment tool. All of these are available on the Caregiving Roadmap page on our website, thecaregiversjourney.org.
The three stages of dementia caregiving, stage one, in the beginning.
Sue
Second stage is the messy middle.
Nancy Treaster
Stage three, later on.
One thing we want to make sure you know is if the self-assessment tool says you’re saying in the messy middle, that’s great. Those are the steps you should focus on. But we want you to go back. Remember, we talked about in the beginning, a lot of those steps in the beginning help you create your foundation for your caregiving journey. So even if you show up in the messy middle, definitely start there, but go back and look at the steps in the beginning and make sure you’ve had a chance to go through and create the best foundation for your caregiving journey as possible.
Links to the Caregiving Roadmap page of our website, as well as all these tools, are available in the podcast description.
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Sue
We’re all on this journey together.
Nancy Treaster
Yes, we are.
