“Our goal is to meet you exactly where you are in your caregiving journey and help you focus on what matters right now.” — Sue Ryan
Have you ever felt overwhelmed searching for the right information at the right time, or found yourself drowning in conflicting resources that leave you more confused than when you started? You’re not alone. Dementia family caregiving is a long journey, and it looks very different depending on where you are in it.
We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we built the Navigating Dementia Caregiving Roadmap to help you find the right resources at the right time. The 20-step roadmap is available on our website thecaregiversjourney.org. We provide all of our resources free for you. The roadmap page also includes a self-assessment tool to help you identify which caregiving stage you’re in right now. Revisit this assessment tool throughout your caregiving journey to help you know the caregiving stage you’re currently in.
Let’s walk through the three stages of dementia family caregiving so you know what to expect and where to focus your energy.
Stage 1: In the Beginning
Stage 1begins right after your loved one receives a dementia diagnosis. It’s about building your solid foundation for the entire caregiving journey ahead.
Now You’re Caregiving for Two People
When caregiving begins, you become the caregiver for two people whose health matters equally: your loved one and you.
Dementia family caregiving is a marathon, not a sprint. This means prioritizing your own energy and health isn’t optional. Keeping yourself well helps you stay present and resilient for the journey ahead.
Think about how you act when you’re stressed, exhausted, or overwhelmed. You’re probably not at your best and your care receiver will feel this. Prioritizing self-care isn’t selfish, it’s what makes you a better caregiver for them as well.
Keep Safety and Happiness as Your Filter
Run every decision through two questions: Does this keep my loved one safe? Does this keep them happy/comfortable? These two lenses will guide you well throughout the entire journey, especially when decisions get hard.
Protect Their Dignity and Independence
Resist the urge to take over everything at once. In the beginning, your loved one is still very capable of participating in decisions and contributing to planning. The first six steps of the roadmap are specifically designed to include them as much as possible.
Honoring this means being intentional about how you interact with them. For example, instead of: “Don’t you remember we’re going to dinner?” try something like: “We’re going out to dinner tonight. Would you like to freshen up?” This shift, from asking them to remember to prompting, preserves their dignity.
Recognize and Honor Drip Grief
Beginning early in Stage 1 of your caregiving journey, you’ll experience losses. They’re small ones at first, then larger ones over time. We call this drip grief. It might be the moment you realize you can no longer ask your loved one to run a quick errand, or when you realize they don’t remember your birthday. These moments feel like a punch in the gut. These are grief.
Give yourself grace when these moments come. Don’t ignore them, and don’t work through them alone. Reach out to a friend, a support group, or a counselor. Honoring your grief is part of caring for yourself.
Stage 2: The Messy Middle
We call this stage “the messy middle” for a very good reason. This is when your loved one can no longer successfully manage many things on their own…but they often think they still can. You’re now asserting more direct control, and this often creates friction.
Observe and Adjust Constantly
This stage is characterized by two steps forward and one step back. Your loved one may get dressed correctly one day and not the next. Your job is to stay present in the moment, moment by moment. Keep watching, keep adjusting, and know when to step in more fully. Ask yourself: “What can they still do today?” “ What are they losing access to?” “Where in the process do I need to insert myself?”
Find Creative Ways to Preserve Dignity
When Sue’s husband Jack came out with his shirt on backwards, she didn’t say “Your shirt is on backwards.” She said, “Honey, it looks like you’ve got a spot on your shirt. May I see it?” Then she handed him a fresh shirt facing the right direction so he could put it on correctly himself. This is the art of the messy middle: finding creative solutions that keep their dignity intact.
Ask Yourself: What if the Roles Were Reversed?
This is the stage where your patience will be tested most. When you’re frustrated, ask yourself: “If the roles were reversed, how would I want to be treated? Would I want my caregiver to huff and puff when I made a mistake, or would I want empathy and kindness?”
This is the golden rule in action. Making it a foundational habit in the messy middle will help carry you through the challenging moments ahead.
Stage 3: Later On
In Stage 3, you’re managing all aspects of your loved one’s care. They are no longer resisting. In many cases, they’re no longer aware of many of the things happening around them. Caregiving becomes easier in some ways during this stage, and harder in others.
Revisit the Foundation You Built Earlier
If you did the work in Stage 1, including advanced directives, legal documents, end-of-life planning, and financial decisions, now is the time to revisit all of it. Things may have changed. There are additional steps that are only relevant now, in this stage. Review the Later-On steps of the roadmap, and the worksheets we’ve made available, to ensure nothing is left out and everything is clear when you need it most.
Taking care of these details now, before you’re in the full grief and shock of losing your loved one, is one of the most important things you can do for yourself.
Anticipatory Grief Is Real. Reach Out
Stage 3 often brings a new kind of grief: anticipatory grief. You can see your loved one has significantly declined. You don’t know if the end is next week or several years away, but you’re beginning to grieve their loss, and think about what life might look like after they’re gone.
This grief calls for support. Perhaps a counselor, a support group, and/or a trusted friend. Please don’t carry this alone. It’s your reminder to check in on your own self-care.
Self-care matters just as much in Stage 3 as it did in Stage 1.
Taking Action: Use the Self-Assessment Tool to Find Your Stage
Wherever you are in your caregiving journey, there’s a stage that describes your experience and a set of focused steps to help you navigate it. You don’t need to tackle all 20 roadmap steps at once. You just need to know where you are right now, so you take your next right step.
Use the self-assessment tool on the roadmap page of The Caregiver’s Journey to find your current stage. You can take the assessment as often as you want. For example, as your loved one’s diagnosis advances, return to this assessment to clarify where you are on your journey. Here are some recommended actions for you:
- Visit The Caregiver’s Journey Roadmap page.
- Take the free 5-question self-assessment to identify your caregiving stage.
- Focus on the roadmap steps most relevant to your current stage.
- Even if you’re in Stage 2 or 3, go back and make sure you’ve taken the steps in Stage 1 to build your solid foundation.
- You are caring for two people now. Prioritize your own self-care at every stage.
- Whether it’s the drip grief in the early steps, or the anticipatory grief in later ones, honor your grief and don’t carry it alone.
Where are you in your caregiving journey? Have you recognized yourself in one of these stages? Share your experiences in the comments below or on our Facebook or Instagram pages.
Using the number for this blog 66, go to thecaregiversjourney.org where you will find additional resources and information. If you find this blog helpful, please share it with other people who you think it might help. Please follow us or subscribe to our updates. We appreciate it.
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