“When someone gets a diagnosis of dementia, there are two people who need to be cared for: the person living with dementia and you, the primary caregiver.” Nancy Treaster
Are you inserting yourself more and more into the activities of daily living for your loved one who is living with dementia? Are you struggling to find the knowledge and resources you need to manage?
We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we know how quickly the daily demands grow once you reach the middle of the caregiving journey.
This article covers steps 11 through 14 of our 20-step Navigating Dementia Caregiving Roadmap. They are part of the stage we call “The Messy Middle”.
The Three Stages of Dementia Caregiving
We identify the twenty steps as stages of dementia caregiving, not stages of dementia. Each roadmap step is tied to a caregiving stage, so you can focus on what matters most based on where you are in your journey right now.
Stage 1: In the Beginning.
The ten steps of this stage begin right after the diagnosis. We’ve broken them down into 2 sections. You can find them here:
- Steps 1 through 6. These are best completed hand in hand with your loved one, as much as possible. They include updating legal documents, understanding the financial situation, and finding support groups.
- Steps 7 through 10. These are steps you mostly take on your own as their caregiver.
Stage 2: The Messy Middle.
The seven steps of this stage are when you begin asserting more control and inserting yourself into the activities of daily living. These steps are when things begin to get messy. We cover steps 11 through 14 of this stage below and steps 15–17 in a future blog post.
Stage 3: Later On.
The three steps of this stage are when you are managing all aspects of your loved one’s care. Your loved one has relinquished control, and you are fully responsible for their care. We cover steps 18–20 in a future blog post.
Where to Find the Complete Navigating Dementia Caregiving Roadmap
We launched the roadmap in August 2025. The current version of the roadmap is always available on The Caregiver’s Journey Roadmap page. Click on any step number in the blue circle, and the recommended resources for the step appear with direct links.
At the top of the roadmap page, you will also find:
- A free five-question self-assessment. This gives you an idea of the stage you are currently in on your caregiving journey. You can return to this assessment at any time to determine if you’re moving into a different stage of your caregiving journey.
- A free downloadable digital guide. The guide is exactly the same information that is on the interactive webpage. Many caregivers like to print this guide so they have a copy on hand to refer back to.
Hint: No matter where the self-assessment places you, look back at the steps in the previous stages to make sure you haven’t missed anything important.
Why the Messy Middle Gets Messy
In the beginning, we encourage you to protect your loved one’s dignity and independence by stepping back as much as you can. At some point, though, you need to step in more and more to help with bathing, dressing, brushing teeth, and the other activities of daily living.
In the messy middle, your loved one is often frustrated, and sometimes scared, because they aren’t always sure what to do. As you step in to help, you may find yourself needing to become a little “bossy”. Frustration on one side and bossiness on the other is what makes this stage messy. Two things help:
- Observe and adjust continuously. What your loved one can and can’t do will keep changing throughout this stage.
- Hold on to your empathy. This is a difficult time for you, and it’s an equally difficult time for your loved one.
Step 11: Focus on Safety
The goal of step 11 is to get ahead of safety issues before they become challenges.
Living at Home Alone
If your loved one lives alone, can they continue to? The episode 6 podcast and blog, titled Home Alone, cover what we call the deal breakers. These are the abilities which, if your loved one has lost them, mean they should not live alone or be left alone for very long. Examples include:
- Feeding themselves successfully, which means getting their food out, eating it, and maintaining their weight.
- Taking their medication successfully.
- Communicating and using the phone, including calling 911 in an emergency.
Medication Management
Taking medication successfully includes taking it safely. If someone takes three days of medication at once, and this medication can cause a major health issue at triple the dose, the consequences can be serious. The episode 20 podcast and blog, titled Medication Management Matters: Your Key Role in Dementia Care, cover how to help you manage medications closely.
Home Safety
Even if your loved one has caregivers, is the home itself safe? Questions to consider include:
- Do they have to navigate steps to get to their bedroom?
- Are there knives or other hazards on the kitchen counter that should go into a locked cabinet?
- What needs to be adjusted in the current home, or in a home your loved one may move into, to make it safe?
The episode 7 podcast and blog, titled Home Safety: Three Essential Tips / Alzheimer’s and Other Dementias, cover home safety in more detail.
Wandering
Wandering is about more than leaving the house. People living with dementia also wander inside the home. By this point in the journey, many are fidgety and need things to do, which creates safety risks indoors as well. The episode 4 podcast and blog, titled Wandering: Ten Essential Tips / Alzheimer’s and Other Dementias, cover how to keep your loved one from leaving the house without your knowledge and how to protect them as they move around inside the home.
Step 12: Continue to Prioritize Self-Care
When someone receives a dementia diagnosis, two people need to be cared for: the person living with dementia and you, the primary caregiver. If you’re running on fumes, you can’t be a successful caregiver, and this can be a long journey.
We introduced self-care in Stage 1: In the Beginning. This is when you built a solid foundation of support for yourself. The information is in:
- Step 4: Finding a support group of people who understand what you are going through and may have advice to share.
- Step 8: Enlisting friends and family so you can get relief to go to the gym, the grocery store, or your own doctor’s appointments.
You can review the details of these steps Here.
We bring self-care back in the messy middle because this is when the mechanics of caregiving really take hold and there is much more to do. Self-care can’t get pushed aside. Podcast and blog 27, The Realities of Self-Care, features our friend Elizabeth Miller, the Happy Healthy Caregiver, whose work focuses entirely on caregiver self-care.
Step 13: Educate Yourself on Activities of Daily Living
Early in the messy middle, you’ll start to see the first signs that their activities of daily living are eroding. For example, you tell your loved one it’s time to get dressed for lunch, and they come out wearing only a bathrobe, proud they got dressed. You recognize this as a sign dressing is becoming difficult, but your loved one doesn’t. Your role is to slowly and gently insert yourself into the process.
Each of our activities of daily living episodes walk you from the very earliest signs of trouble through how the activity progresses across the entire journey. Learning this early in the messy middle means you’re prepared for what comes next.
Preparing for Incontinence
Incontinence will come, but there are early signs it is approaching. Podcast and blog 9, Preparing for Incontinence: Four Essential Tips / Alzheimer’s and Other Dementias cover these signs and ways to support your loved one’s independence and dignity before incontinence begins.
Bathing and Dressing
Learn the early signs your loved one is struggling, how these activities progress, and how to protect their independence and dignity as you become more involved.
Personal Care
Brushing teeth, cutting fingernails, and cutting hair all go more smoothly with a calm, flexible approach.
Nancy once called Sue for advice, since Sue was two or three years ahead in her caregiving journey with her husband, Jack. Nancy was trying to cut her husband’s fingernails, and after two, he was done. He was fidgety, getting up off the sofa, and wanted nothing to do with it. Sue asked whether Nancy was trying to cut them all at one time. Of course she was. Sue’s advice:
Cut as many as you can. If you get one done, try again in an hour, in two hours, or tomorrow. Two today, two tomorrow, and two the next day is perfectly okay.
This is the kind of practical, dignity-preserving approach we share for each personal care activity.
Eating and Drinking
Many caregivers miss the early signs of eating and drinking struggles, assuming their loved one is simply eating less. While this may be true, it’s just as likely your loved one is forgetting how to eat, what comes next, or how to use utensils correctly. Podcast and blog 16, Eating and Drinking: Seven Essential Tips / Alzheimer’s and Other Dementias, explain how and when to prompt your loved one, so they eat as much as they possibly can.
Step 14: Create a Care Plan
At a minimum, create a family emergency plan. In the messy middle, the activities of daily living need a lot of support. What if something happens to you? How will someone else care for your loved one in the way they’re used to and comfortable with?
This is the heart of person-centered care. Sue’s dad, for example, didn’t like his food to touch on the plate. When the family began helping feed him, they respected this preference. Anyone stepping in can only provide person-centered care if they know what it looks like for your loved one.
Options for Your Care Plan
- A binder or book: Sue created her care plans in binders. This works especially well if your loved one lives in a care community, where staff won’t be accessing your Google Drive or sharing an app with you.
- An app: There are apps available that let you create and share a care plan.
- A shared drive: Some families keep their care plan on a shared online drive.
What to Make Sure Your Family Emergency Plan Covers
- Where to find the caregivers you use and how to reach them, including phone numbers.
- How your loved one is used to having daily activities done, so care stays consistent and familiar.
Taking Action: Steps 11 Through 14 of the Roadmap
- Focus on safety: Address living alone, medication management, home safety, and wandering before they become challenges.
- Continue to prioritize your self-care: Lean on your support group, friends, and family so you don’t run on fumes.
- Educate yourself on activities of daily living: Learn the early signs and how incontinence, bathing and dressing, personal care, and eating and drinking progress.
- Create a care plan: At a minimum, a family emergency plan so someone else can step in and care for your loved one the way they are used to.
- Visit the Caregiving Roadmap page at thecaregiversjourney.org to access the resources for each step, download the digital guide, and take the self-assessment.
Do you have tips on safety, self-care, activities of daily living, or care plans? Share your ideas in the comments below or on our Facebook or Instagram pages.
Using the number for this blog, 73, 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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