y Tabitha Justice & JT Hunter
Hearing the words “Your loved one has dementia” can be overwhelming, heartbreaking, and confusing all at once. What happens next? What do you need to do? How do you prepare for the road ahead? While every journey is different, having a clear plan in place can help ease the burden and provide clarity during a challenging time. Here’s a roadmap to guide you through the first critical steps after a dementia diagnosis.
Step 1: Understand the Diagnosis
Not all dementias are the same. It’s important to ask your loved one’s doctor for as much information as possible about their specific type of dementia, how it typically progresses, and what treatment options may help.
Types of Dementia & How They Differ
- Alzheimer’s Disease: The most common form of dementia, Alzheimer’s typically starts with short-term memory loss and progresses to confusion, personality changes, and difficulties with speech and mobility. Planning early is crucial, as the disease can span many years.
- Lewy Body Dementia: Known for its fluctuating symptoms, hallucinations, and movement issues, Lewy body dementia can cause unpredictable behavior and requires specialized medication management. Some common dementia medications can actually make symptoms worse, so working with a knowledgeable doctor is essential.
- Vascular Dementia: Caused by reduced blood flow to the brain, this form of dementia often follows strokes or other cardiovascular issues. Symptoms may include difficulty with problem-solving and focus rather than memory loss.
- Frontotemporal Dementia (FTD): Unlike Alzheimer’s, which starts with memory loss, FTD often begins with behavioral and personality changes. This can be particularly challenging for families, as their loved one may act in ways that seem out of character.
What You Can Do Now:
✅ Schedule follow-up appointments. Dementia care is ongoing. Regular check-ups will help monitor changes and adjust care as needed.
✅ Keep a symptom journal. Documenting daily behaviors, mood changes, and memory issues can help doctors fine-tune treatment and medication.
✅ Ask about clinical trials. Some dementia patients may qualify for research studies or new treatments that could help slow disease progression.
Step 2: Get Legal & Financial Planning in Place ASAP
Dementia care is costly and legally complex, and waiting too long to put financial and legal protections in place can create huge challenges later. While your loved one still has the ability to make decisions, it’s time to act quickly to ensure their wishes are honored.
Essential Legal Documents to Set Up Now:
📌 Power of Attorney (POA): Assigning both a financial POA and a healthcare POA ensures that someone trusted can make decisions when the person with dementia is no longer able to. Without a POA, families may have to go through a lengthy and expensive court process to gain decision-making authority.
📌 Advance Directives & Living Will: These documents allow your loved one to clearly state their preferences for end-of-life care and medical treatments, removing the burden of guesswork from family members.
📌 Guardianship (if needed): If your loved one is already experiencing significant cognitive decline, guardianship or conservatorship may be necessary to manage their financial and personal affairs legally.
Financial Considerations:
💰 Dementia care can cost anywhere from $4,000 to $10,000 per month, depending on whether care is provided at home, in assisted living, or in a memory care facility. Most families are not financially prepared for this reality.
💡 Review savings and assets: Look into what financial resources are available and how long they might last.
💡 Explore long-term care insurance (if applicable): Some policies cover home health aides or assisted living costs. If your loved one already has a policy, review the terms now so you understand what is covered.
💡 Learn about Medicaid planning: Medicaid can help cover long-term care costs, but eligibility rules require careful financial planning to avoid spending down assets unnecessarily. Speaking with a Medicaid specialist or elder law attorney can help ensure your loved one qualifies when the time comes.
💡 Consider veteran’s benefits: If your loved one served in the military, VA benefits may help offset some healthcare costs.
Step 3: Build a Support Team
Caring for someone with dementia is not a one-person job. You’ll need a strong care team to help navigate medical decisions, emotional challenges, and day-to-day needs.
Who Should Be on Your Care Team?
👩⚕️ Medical Team: Doctors, neurologists, physical therapists, and other healthcare providers to monitor and manage symptoms.
⚖️ Legal & Financial Experts: Elder law attorneys, financial advisors, and Medicaid planners to help protect assets and plan for care costs.
👨👩👧 Caregivers & Support System: Family members, professional caregivers, respite care providers, and adult day care programs.
🏡 Community Resources: Local support groups, dementia-friendly social programs, and organizations that provide educational resources.
Dementia Caregiver Coach:
A caregiver coach provides one-on-one guidance, practical caregiving strategies, and emotional support to help families navigate the complexities of dementia care.
🧠 JT Hunter, co-author of this blog, is a Certified Dementia Practitioner and Care Partner Coach with REMT Care Partner Coaching. He offers personalized coaching to help families understand the disease, manage behavioral challenges, and reduce caregiver stress. To learn more about his services, visit remtme.com.
Avoiding Caregiver Burnout:
Taking on too much alone can lead to exhaustion, stress, and health problems for caregivers. Consider:
✔ Hiring in-home help for even a few hours a week.
✔ Using adult day programs to give caregivers a break.
✔ Joining a caregiver support group—either in-person or online—to share experiences and get emotional support.
✔ Making self-care a priority. Caregivers need rest, exercise, and emotional outlets to avoid burnout.
Final Thought: The Importance of Early Planning
Dementia is unpredictable, but early planning makes all the difference between a smooth transition and a crisis. By understanding the diagnosis, putting legal and financial protections in place, and building a strong care team, you can ensure that your loved one gets the best care possible while also reducing stress on the family.
At Just Us Retirement, we specialize in helping families plan ahead. Whether it’s understanding Medicare, planning for long-term care, or getting legal documents in order, we’re here to support you every step of the way.
📞 Contact us today to start planning for your loved one’s future.
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Disclaimer:
The information provided in this blog is for educational and informational purposes only and should not be considered medical, legal, or financial advice. While Tabitha Justice is an experienced insurance professional specializing in Medicare and long-term care planning, she is not a medical provider. JT Hunter, co-author of this blog, is a Certified Dementia Practitioner (CDP), CEO of REMT Care Partner Coaching, and Co-owner of Equipped, Empowered, and Enabled, LLC. With over 16 years of experience in dementia care coaching and caregiver education, he has trained healthcare and long-term care providers nationwide. For personalized dementia care guidance, visit remtme.com. Always consult a qualified medical, legal, or financial professional regarding your specific situation.