If you’ve ever felt overwhelmed because you don’t know what information you need, can’t find reliable sources, or feel frustrated by too much conflicting advice, you’re not alone — AND — there’s a clear path forward.
We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned having a step-by-step roadmap is crucial for navigating the beginning of your caregiving journey. This led us to create the comprehensive, 20-step caregiving journey roadmap guide, Navigating Dementia Caregiving: Your Resource Roadmap for Every Stage. In this blog post are the first six essential steps to take immediately after diagnosis.
Understanding the Three Stages of Caregiving
Before exploring each of the steps in detail, it’s important to understand that caregiving has three distinct stages:
In the Beginning: Right after diagnosis, when your loved one is still mostly — or fully — independent.
The Messy Middle: More and more challenges are coming at you due to the diagnosis. You’re starting to assert some control because it’s harder for your care receiver to do everything independently.
We call it “messy” for several reasons. Your loved one may need but not want help. They still know they are losing control. It’s incredibly frustrating for them and makes helping them more difficult.
Later On: You’re now fully responsible for their care and safety, and you are managing all aspects of their care.
These initial six steps focus on what we call the “In the Beginning” stage of your caregiving journey.
You’re Now Caring for Two People
From the moment of diagnosis, you become the caregiver for two people: your loved one and you. You have a a common goal for both – to stay safe and comfortable. In the beginning, you are helping your care receiver maintain as much dignity and independence as possible, while providing support from the background.
It’s also helpful in this beginning stage to maintain patience — as much as possible — both with your care receiver AND you! Your natural instinct may be to take over everything — that time will come — try instead to let taking control come naturally only when necessary. Focus on providing you and your care receiver grace and support while they maintain as much autonomy as possible.
Step 1: Choose a Palliative Care Organization
For different reasons, this is the incredibly valuable step we both missed in our caregiving journeys. We definitely don’t want you to miss it!
Palliative Care Defined: Palliative care is a holistic approach to life-limiting diseases. The palliative care team works alongside you and your existing medical team. Palliative care can be provided in hospitals, outpatient clinics, or at home.
When to Call in Palliative Care: You can begin palliative care at any stage of a serious illness — including alongside curative treatments. It supports both patients and their families throughout the care journey.
You’ll find valuable information specifically about palliative care listening to this podcast, or reading this blog post we created with Dawn Kolderman, a registered nurse and Senior Clinical Director of Palliative Care Services at Avow, who has more than 30 years of nursing experience with the last 20 focused on palliative and hospice care.
Key Benefits of Palliative Care:
- Supports both the person with dementia and family caregivers.
- Usually covered by Medicare and other insurance.
- Provides additional medical experts for your loved one.
How to Find Palliative Care:
- Search “palliative care” plus your city, state, or country.
- Get recommendations from your medical providers.
- Read customer reviews.
- If applicable, consider organizations your senior living community already works with.
Step 2: Create Your Advance Care Plan
Your Advance Care Plan is your opportunity to partner with your loved one on crucial decisions while they still have the capacity to express what’s important to them. Getting these arrangements in place now provides security and peace of mind for both of you.
Several Essential Documents:
- Medical Power of Attorney: Names who makes medical decisions when your loved one cannot.
- Financial Power of Attorney: Designates who manages financial decisions and assets.
- Advanced Directive/Living Will: Outlines treatment preferences like do-not-resuscitate orders, feeding tubes, and other significant medical decisions.
- End-of-Life Pre-Planning: Discusses preferences such as burial or cremation.
Take Action: Contact an elder law attorney through the National Academy of Elder Law Attorneys (NAELA). Interview several attorneys to find the one you’re comfortable working with. The advance care plan process involves important, complex, and difficult decisions — for you, your loved one, and your family.
We’ve created both this podcast episode for you to listen to or this blog post for you to read about Elder Law and the vital support they provide.
In the United States, look for free legal help here.
One Source of Resources: While named Alzheimer’s Association, this group serves all types of dementia — not just Alzheimer’s. On their website, they share many original sources of different types of financial and legal support and resources. You will find comprehensive options for legal planning resources HERE.
This End of Life Planning Worksheet is an excellent place to begin your planning and make sure you’re including all areas of consideration.
Step 3: Understand The Financial Situation
Consider Working With Professionals: Consult with your financial advisor, a financial expert who specializes in seniors, or include this in the discussion you have with your elder law attorney.
This is another area where The Alzheimer’s Association shares insights on a variety of resources in support of financial planning.
Key Areas to Review:
- Forms of income (e.g.: Social Security, disability, pensions)
- Long-term care insurance
- VA benefits eligibility
- Medicaid planning
- Investment and bank accounts
- Asset management.
Step 4: Find Support Groups
Support groups are one of your strongest forms of support as a caregiver.
Prioritize In-Person Groups: If possible, attend support groups in person. In this early stage, you’re more likely to be able to leave your loved one alone for short periods AND many organizations with support groups have separate groups for the loved one with the diagnosis.
Where to Look:
- Your medical team (ask if they have groups specific to your situation).
- Local senior centers (search “senior center” on your county’s ‘.gov’ website).
- Search the Internet for support groups for your diagnosis.
- Search ‘(put the name of your loved one’s diagnosis) support group’ plus your city, state, or country.
- Alzheimer’s Association provides support for all types of dementia
– Support Group Finder
– 24/7 helpline: 800–272–3900
For Your Loved One: Consider online support like the Dementia Minds, offering virtual groups, music programs, and art classes specifically for people living with dementia.
Many local senior centers have support groups for your loved one to increase socialization. In the United States, go to your ‘countyname’.gov website and search for a senior center.
Self-Care Focus: Self-care is NOT selfish! You’re one of the two people you’re now caring for. It’s incredibly important to learn how to take care of yourself as you navigate this journey AND for you to prioritize your care. Support groups are a valuable resource for discussing and learning about self-care strategies. The most important thing is to continuously prioritize caring for you.
Step 5: Educate Yourself on Early Caregiving Topics
We’re beginning with two essential education topics to start. These are your immediate priorities. There will be more learning ahead!
Topic 1 – Memory Loss: Learn to understand and frame what’s happening with memory loss. This helps you absorb the challenges that come with early memory loss, and the changes happening to both you and your loved one. Listen to this podcast or read this blog post. They are specific to memory loss in the beginning of the journey with the dementia diagnosis.
Topic 2 – Communication: It’s reasonable to want everything to be the way it was. Effective caregiving requires you to adjust how you communicate. We recently spoke with Jenny Gay, licensed clinical social worker with Emory Integrated Memory Care, about communication. Jenny explains: “You are ‘learning a new language’ and changing behavioral patterns you’ve had in place for decades.” For helpful insights on learning this new language early in your caregiving journey, listen to this podcast or read this blog post.
Both topics help you reframe your expectations and interactions, moving you away from trying to maintain the ‘old normal’ and move you toward creating your new, supportive way forward.
Step 6: Investigate the US Medicare Guide Program
The Medicare Guide Model (Guiding an Improved Dementia Experience) is a pilot program that represents a revolutionary approach to dementia care. Medicare is now paying for services to support both the person living with dementia — and their caregiver.
Eligibility Requirements:
To understand if your loved one is eligible, the GUIDE program has a list of frequently asked questions. You can find this list HERE.
Main requirements include:
- Must have traditional Medicare Parts A and B (not Medicare Advantage)
- Traditional Medicare must be the primary payer
- Cannot be on hospice care
- Cannot live in a skilled nursing facility
- Can live in independent living, assisted living, memory care, or the community.
How to Find a Medicare Guide Site:
- Go to this GUIDE website
- Enter your state
- Under models, select “Guiding an Improved Dementia Experience Guide Model”
- Select “display selected”
- You can use the plus and minus signs in the upper right corner to zoom in closer to your area
- When you find the location you want, click on the blue dot and detailed contact information will show.
As of July 1, 2025, the Medicare GUIDE program expanded from 90 to 390 participating organizations nationwide, so there are likely options in your area.
Moving Forward Together
These six steps form the foundation of your caregiving journey. They’re designed to be implemented while you still have time and capacity to make thoughtful decisions with your loved one’s input.
Caregiving is a marathon, not a sprint. Building these supports early in your journey creates the strong foundation you’ll need for the journey ahead:
- Palliative care
- Legal protections
- Financial understanding
- Emotional support
- Education, and
- Innovative programs like Medicare GUIDE.
Key Takeaway: You don’t have to figure this out alone. There are specific resources and trained experts to help you navigate this journey successfully — from palliative care teams to support groups to specialized programs.
The next phase of “In the Beginning” includes four additional steps that build on this foundation. As you focus on these first six essential steps, take them one at a time. Every step you take now is an investment in both your loved one’s wellbeing and your confidence as a caregiver.
Have you started building your dementia caregiving roadmap? What steps have been most helpful in your early caregiving journey? Share your experiences in the comments below or on our Facebook or Instagram pages.
Connect with us and share your tips:
- Website
- This podcast episode
- YouTube
- If you’d like to support our mission please donate HERE
We’re all on this journey together.
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