Knowledge is power. The more you understand about dementia caregiving, the more confident you’ll become, the more patience you’ll have with your care receiver, and the greater peace of mind you’ll experience.
Have you completed the first six essential steps of the comprehensive 20-step caregiving journey roadmap guide: Navigating Dementia Caregiving Roadmap: Your Resource Roadmap for Every Stage? Are ready to take on more? Do you find yourself wanting to learn faster and more easily than trying to figure everything out on your own? If you answered ‘Yes’ to any of these, you’re in the right place for the next phase of the dementia “In the Beginning” stage of your caregiving journey.
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 Roadmap: Your Resource Roadmap for Every Stage.
Understanding the Three Stages of Caregiving
In this blog post, we’re sharing steps 7–10. There are two more blog posts bringing you the remaining 10-steps. Steps 7–10 represent the second part of the first stage: “In the Beginning”. Before exploring each of the steps 7–10 in detail, here’s a review of the three distinct stages of caregiving:
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 progression of dementia. You’re starting to assert 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.
Why These Steps Matter Now
After completing steps 1–6 (immediate post-diagnosis priorities), you’ve built a foundation of legal protections, financial understanding, and support systems. Now it’s time to deepen your education and start preparing for the progression that lies ahead.
Whether you’re truly “In the Beginning” or further along in your journey, these steps provide valuable insights for each caregiver. The goal is to help you gain confidence, patience, and peace of mind through knowledge and preparation.
Step 7: Continue Your Education
This step focuses on education that won’t overwhelm you with information you don’t need until the dementia progresses further. These resources provide the right level of detail for where you are now.
The Savvy Caregiver Program
The Savvy Caregiver program offers the most helpful educational information available for dementia caregivers. From this comprehensive course you’ll learn:
- Extensive education about various types of dementia and disease progression.
- Understanding disease stages and how to work with your loved one.
- Techniques to help your loved one be successful without triggering agitation.
- How to grow your personal care network of family and friends — your ‘caregiver village’.
- Planning and paying for future care.
Program Features:
- Videos, workbooks, and detailed manuals.
- Weekly virtual or in-person conferences.
- Homework assignments to practice new approaches with your loved one.
- Community support from other caregivers and trained instructors.
- Opportunities to workshop your experiences and get feedback.
The program creates both education and community — two essential elements for successful caregiving.
Mayo Clinic Living with Dementia Guide
This special magazine-style resource from the medical experts at Mayo Clinic provides similar comprehensive information in a book format. “Mayo Clinic Living with Dementia: A Guide to Caregiving and Support” offers you:
- General overview of what’s happening and what to expect
- Framework for understanding the caregiving journey
- Practical guidance without overwhelming detail
- Help getting in the right mindset for upcoming challenge.
Virtual Dementia Tour
One of the most transformational educational experiences available is the Virtual Dementia Tour. This evidence-based, scientific, immersive experience, literally puts you in your loved one’s shoes. It helps you understand what they’re experiencing. It provides you with a valuable perspective on the dementia experience, to support you developing the empathy and understanding that can transform how you approach caregiving situations.
Finding a Tour:
- Search “virtual dementia tour” plus your state or country.
Step 8: Start Planning for the Next Stage of Care
While your loved one is still largely independent, it’s time to start thinking about the next level of support. This isn’t about permanent placement or professional caregivers yet — it’s about community-based options that provide quality of life and safety.
Build Your Personal Support Network
Your first priority is creating a network of family and friends who can help. This is the time to keep in mind our mantra:
When someone offers to help, say yes!
Listen to this podcast episode or read this blog post to learn how to build your personal support network.
Key Strategies:
- People want to help! Prepare a list of specific tasks that includes the task description and the estimated amount of time each will take.
- When people offer to help, thank them. Ask them:
– What they would like to do. Record it in your list.
– The days and times it’s easiest for them to help. - It’s better to have more people on your list and multiple people who have offered to help with the same type of care, than limiting yourself to one person/task.
- Check back in periodically with people who have offered to help to make sure this is still something they have capacity to do.
Don’t fall into the trap of “It’s easier to do it myself”.
Common Support Tasks:
- Grocery shopping and errands
- Transportation to appointments
- Meal preparation or delivery
- Companionship visits
- Household maintenance.
Memory Cafes
Memory cafes provide safe, engaging spaces for both you and your loved one. These programs, typically housed in churches or senior centers, offer:
- Music, games, and social activities
- Compassionate environments where you don’t need to worry about incontinence episodes or behavioral outbursts
- Structured, safe engagement opportunities
- Community connections with other caregivers and families.
Specialized Dementia Adult Day Programs
Two types of dementia adult day programs provide respite and engagement:
Adult Day Health Programs:
- More clinical-based care with medical oversight
- Medication administration
- Assistance with incontinence
- Skilled therapies on-site
- Full business day operation.
Social Day Programs:
- Focus on routine, structure, and social engagement
- Cannot manage incontinence or medications
- Excellent for early to moderate stage dementia
- More affordable than other care options.
Both types of dementia day programs help your loved one stay engaged at their current abilities level while providing you with essential caregiver relief time.
To find programs near you, use a community resource finder:
- In your web browser, use this link to find Community Services.
- Choose Adult Day Centers for your search.
Home Safety Assessment
Request a comprehensive home safety assessment to identify potential hazards and necessary modifications. The goal is to have someone evaluate your home for safety and dementia care needs.
You can access these through:
- Asking your loved one’s medical team for a home safety assessment.
- Community-based palliative care providers.
- Medicare GUIDE program enrollment.
- Skilled therapy services (speech, occupational, or physical therapy).
- Home health orders following hospital discharge.
- You can get a free assessment from social services with these orders, or you can pay for an independent assessment from a private organization.
These assessments help ensure your home environment supports safety and independence for as long as possible.
Step 9: Investigate Local Government Community Support
Your Area Agency on Aging (AAA) offers resources that vary widely by location and can provide additional support at little to no cost.
How to Access Services
Search “Area Agency on Aging” plus your city or state to find your local office. Call to set up an assessment or screening to learn about:
- Available community services
- Eligibility requirements
- Cost structures (many services are free or subsidized)
- Potential payment for family caregivers.
National Resources
- Website: Eldercare.acl.gov
- Toll-free number: 800–677–1116
These resources help you navigate the complex landscape of local services and benefits.
Family Caregiver Payment Programs
Be sure to find out if you are eligible to get paid to be a caregiver. Some states offer programs where family members can be paid to provide caregiving services. While these don’t provide executive-level salaries, they can offer meaningful financial support for families providing care.
Step 10: Evaluate Driving Risks
This is perhaps one of the most challenging step emotionally. It’s also crucial for safety and legal protection. For many people, driving represents independence. Losing this ability creates compounded losses for your loved one.
Why This Matters Now
Even in early stages, it’s important to begin conversations about driving because:
- Legal Protection: If your loved one has an accident, their medical records can be summoned in legal proceedings, creating potentially devastating financial consequences.
- Safety Concerns: Executive functioning required to navigate accidents becomes impaired with dementia.
- Future Planning: Early conversations make eventual transitions easier.
Listen to this podcast episode or read this blog post that specifically address strategies for driving and taking away the keys.
State-by-State Variations
Driving regulations for people with dementia vary significantly by state and country. Research your local requirements, as some areas have much stricter rules than others.
It’s also important to talk with your auto insurance provider. They will explain to you the potential impacts if your loved one with a diagnosis is in an accident.
Approaching the Conversation
Every family’s experience differs:
- Financial Approach: Some respond well to understanding the financial implications of accidents.
- Medical Approach: Some benefit from professional driving evaluations.
- Gradual Approach: Many families find success with slowly reducing driving responsibilities.
Professional Driving Evaluations
Driving evaluations can serve as protective factors, providing:
- Professional assessment of current abilities
- Documentation for insurance and legal purposes
- Gradual transition planning
- Alternative transportation discussions.
Transportation Alternatives
Begin exploring the variety of alternatives early:
- Family and friend networks
- Community transportation services
- Ride-sharing services
- Public transportation options
- Adult day program transportation.
Moving Forward with Confidence
These four steps — continued education, planning for the next stage of caregiving — The ‘Messy Middle — investigating community support, and evaluating driving risks — build on your initial foundation while preparing you for the progression ahead.
Key Takeaway: Knowledge truly is power in caregiving. The more you understand about dementia, available resources, and upcoming challenges, the more confident and patient you’ll become. This translates to better outcomes for both you and your loved one.
Our Essential Mantra: When someone offers to help, say yes! This simple phrase can transform your caregiving experience and help you build the support network you’ll need for the journey ahead.
The next phase of our roadmap will cover “The messy middle.” — steps 11–17. These address the more complex challenges as your loved one’s independence decreases and your role as caregiver expands. For now, focus on these four steps. They strengthen your foundation and prepare you for whatever comes next.
Important Note: Throughout everything we recommend, we never suggest a product, program, or service we haven’t personally participated in or the experts we are working with haven’t validated extensively. These recommendations come from our lived experience as caregivers and our partnership with professionals like Jenny Gay who support families every day.
Have you started implementing these educational and planning steps in your caregiving journey? What resources have been most helpful as you prepare for the next stage? 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.
#Alzheimers #dementia #caregiver #caregiving #dementiacaregiver #dementiacaregiving #podcast #advice #howto #braindisease #dementiasupport #memory #blog #braincare
