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Steps 1–6 of the 20 Steps of the Navigating Dementia Caregiving Roadmap

68. The First Six Steps to Take After a Dementia Diagnosis

“Your caregiving is responsible for the health and safety of two people — your loved one, and you. You can’t be a good caregiver if you’re running on fumes.” Nancy Treaster

Did your loved one recently receive a diagnosis of dementia? Are you at a loss for what to do next? Maybe you’re overwhelmed because you can’t find the information you need, or maybe it’s the opposite, and you’re drowning in so many conflicting resources that you don’t know where to start.

We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we know how disorienting the first weeks after a diagnosis can be. That’s why, in this article, we’re covering just the first six steps of the 20-step Navigating Dementia Caregiving Roadmap.

The complete 20-steps guide you through your entire caregiving journey. The steps are organized into the three stages of dementia caregiving:

  1. In the Beginning
  2. The Messy Middle
  3. Later On.

To learn more about all three stages, check out our episode 66. What Stage of Dementia Caregiving Are You in? / Alzheimer’s and Other Dementias. Here are the links to the Podcast and the Blog .

These first six steps are the steps we recommend you take right after the diagnosis, during the “In the Beginning” stage.

On The Caregivers Journey Roadmap website you’ll find the complete interactive roadmap. You’ll also find a free downloadable version.

Set the Foundation Before You Start the Steps

Before we get into the first six steps, here are a few key areas of consideration to ground yourself in during this early stage. These will set the tone for how you make decisions throughout your entire caregiving journey.

You’re Now Caregiving for Two People

Right after the diagnosis, it’s natural to focus entirely on your loved one’s needs. Your caregiving is responsible for the health and safety of two people: your loved one, and you.

You can’t be a good caregiver if you’re not taking your own health just as seriously as that of your care receiver.

Make caregiving for yourself just as much of a priority as caregiving for your loved one. The journey will be incredibly challenging if you’re running on fumes.

Use Safe and Happy/Comfortable, Dignity and Independence, to Guide Decisions

Set two checkpoints now that you’ll return to again and again as you make decisions:

  1. Safe and happy/comfortable: Does this decision keep my loved one safe? Does it keep me safe? Does it support my loved one being happy/comfortable? Does it support me being happy/comfortable? While our definitions of what safe, happy, and comfortable look like will change throughout our journey, our goal is to keep adjusting these so we prioritize what this looks like for us and for our loved one.
  2. Dignity and independence: Does this decision preserve as much dignity and independence for my loved one as possible?

Dignity and independence are especially important in the beginning, when your loved one is still capable of doing many things on their own. It can feel natural to want to take over everything once a diagnosis is confirmed. Stepping back, using reminders and prompts instead of direct correction, and letting your loved one continue doing what they can, preserves their dignity, and independence longer. If their clothes don’t match, ask yourself whether that’s worth a correction, or whether it matters more that they got dressed on their own today. Your time to take over more fully will come. Let it come naturally rather than rushing it.

Honor Your Grief Along the Way

Early in the journey, you’ll experience what we call drip grief. It’s the small, sharp moments when you realize your loved one no longer has access to something they once did: they forget your birthday, their phone number, their address, their ATM code. Each of these is a little punch in the gut. Recognize them for what they are, and give yourself permission to grieve them as they come.

Step 1: Reach Out for Guidance

Investigate organizations that can guide you through the early stages of your journey and beyond.

Palliative Care

Palliative care isn’t the same as hospice, though the two are related. Palliative care programs are often provided by organizations that also provide hospice care. Your loved one becomes eligible for palliative care as soon as they have a diagnosis of a life-limiting disease, and palliative care can be offered at the same time your loved one is receiving treatments for their illness. Any costs are mostly covered by insurance. A palliative care team gives you a highly-trained set of eyes and ears on your loved one, alongside your medical team, and they also provide support to you as the caregiver. A very important note about palliative care; their team stays with you and your care receiver throughout their entire journey, even when hospice care begins. At this point, your palliative care works alongside the hospice team, with their focus shifting entirely to comfort and symptom management.

Your Area Agency on Aging

Your Area Agency on Aging (AAA) is a free, state-sponsored government program (They’re not the roadside assistance company.) Some states even have dementia care specialists within their AAA. They can help you understand what free government programs are available and guide you through this early part of your journey. Because AAAs are organized geographically, use this link to find the one that covers your specific region.

A Certified Senior Advisor

Certified senior advisors are trained to help you through many of the topics in this post; legal, financial, and more. Some of what they offer is free; other services are fee-based, similar to hiring a consultant. Use this link to search for ones near you and learn what support they provide.

Step 2: Update Legal Documents and Long-Term Care Plans

With your loved one’s input, get key documents and plans in place while they’re still able to participate and sign. Don’t wait. Competency and involvement of your loved one matter here.

Consider an elder law attorney, someone who guides families through this process every day.

Look into free legal help if cost is a barrier to working with an attorney. One place you can go is to LawHelp, a national nonprofit dedicated to bringing the power of the law to everyone.

Get core legal documents in place. For example, medical power of attorney, financial power of attorney, a will, and advance directives or living wills.

Use The Caregiver’s Journey free End of Life Service Worksheet to talk through decisions together, such as burial or cremation preferences and whether they want a celebration of life.

Something very helpful to know is that The Alzheimer’s Association isn’t just for Alzheimer’s. It supports all types of dementia. On its site, it includes an overview of each of the legal documents important for you to prepare.

Step 3: Understand the Financial Situation

It can feel uncomfortable to start asking about a parent’s or spouse’s finances. Understanding the full financial picture now will save you significant stress later.

  • Work with a financial advisor, ideally one who specializes in working with seniors.
  • Lean on your elder law attorney if you have one. Many are well-versed in this part of the process too.
  • Check on long-term care insurance and understand when and how to execute it.
  • Check on Social Security eligibility, including eligibility for Social Security disability if your loved one isn’t yet receiving benefits.
  • Look into Medicaid eligibility.
  • If your loved one is a veteran, contact the Veterans Administration about available support.
  • Account for any other sources of income.

Step 4: Find Support Groups

Start with support groups for yourself. Early in the journey, while your loved one can still be safely left at home alone, is the best time to attend in person. It gets harder to get to meetings in person once your caregiving responsibilities grow.

  • Use the Alzheimer’s Association’s support group finder. It covers all types of dementia, not just Alzheimer’s.
  • Visit our Trusted By Us page at The Caregiver’s Journey for support group finders specific to Lewy Body, frontotemporal, and other types of dementia.
  • Consider whether you want an in-person, virtual, or combination support group, and whether you’re looking for support as a spouse or as an adult child.
  • Take advantage of 24/7 helplines, including the Alzheimer’s Association helpline and other disease-specific lines listed on our Trusted By Us page. These are also a great resource to hand to family members who have questions you’re tired of answering.
  • Support groups specifically for the person living with dementia are sometimes offered at the same locations of the support groups for caregivers of the specific types of dementia. There are also virtual support groups for people living with dementia. One example is Dementia Minds. It is run by a board of directors made up entirely of people living with dementia themselves. If your loved one is interested, these are good places to start.

Step 5: Educate Yourself on Early Caregiving Topics

This step is just for you. Listen to, or read the blog for, two specific episodes:

  • Episode 2. Memory Loss: Four Essential Tips / Alzheimer’s and Other Dementias. Here are the links to the Podcast and the Blog.
  • Episode 3. Communication: In The Beginning. Here are the links to the Podcast and the Blog.

The memory loss episode will help you recognize those drip-grief moments and understand that what you’re feeling is normal. The communication episode will help you think about empathy and how your communication style needs to evolve as your loved one’s journey progresses. Many caregivers tell us they wish they’d listened to the communication episode earlier, explaining it would have made them a more patient, more empathetic caregiver sooner.

Step 6: Investigate the Medicare GUIDE Program (U.S.)

The Medicare GUIDE program is a Medicare innovation pilot focused on supporting people living with dementia and their caregivers. It’s built on the idea that caring for the caregiver reduces overall costs to Medicare. It offers $2,500 annually in respite funding, which you can use to pay for in-home help or a program for your loved one so you can take a break. Organizations that deliver GUIDE programs are required to offer 24/7 helplines and social workers to guide you through your journey. Step 6 of the roadmap provides information about for eligibility requirements and a link to find a GUIDE program near you.

Taking Action: Your First Six Steps

The beginning stage of your caregiving journey is about setting a foundation for decision-making, for your loved one’s dignity and independence, and for your own wellbeing. Take these six steps one at a time:

  1. Reach out for guidance from palliative care, your Area Agency on Aging, or a certified senior advisor.
  2. Update legal documents, end-of-life plans, and other long-term care plans with your loved one’s input.
  3. Understand the financial situation, including insurance, Social Security, Medicaid, and VA benefits.
  4. Find support groups — for yourself, and if possible, for your loved one.
  5. Educate yourself on early caregiving topics, starting with memory loss and communication.
  6. Investigate the Medicare GUIDE program to see if you’re eligible for respite support.

You can find the full 20-step roadmap, along with a free downloadable guide, at the Caregiving Roadmap page of our website.

Using the number for this blog, 68, 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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We’re all on this journey together.

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