The first three months following a dementia diagnosis are critical. The actions you take now will shape the quality of care your loved one receives and determine how well your family navigates the years ahead. This checklist breaks down exactly what needs to happen in the first 90 days, week by week, so nothing falls through the cracks.
Why the first 90 days matter:
These three months represent a window when your loved one likely still has legal capacity to participate in crucial decisions. It's also when you can establish systems, gather information, and build support networks before care demands intensify. Families who use this time strategically report feeling more prepared and less overwhelmed as dementia progresses.
Quick overview of your first 90 days:
- Days 1-7: Process the diagnosis, schedule specialist appointment, tell key family members
- Weeks 2-4: Attend specialist visit, begin organizing medical information, research elder law attorneys
- Weeks 5-8: Complete legal documents, make home safety changes, set up medication management
- Weeks 9-12: Establish support systems, join caregiver groups, plan financial strategy
Let's break down each phase in detail so you know exactly what to do and when.
Days 1-7: Immediate Actions After Diagnosis
☐ Allow yourself time to process emotionally
The first week is often a blur of shock, denial, anger, and grief. These feelings are normal. Give yourself permission to feel overwhelmed without judging yourself. You don't need to have everything figured out in the first few days.
☐ Schedule a follow-up appointment with a specialist
If your loved one's primary care physician made the diagnosis, request a referral to a neurologist, geriatrician, or geriatric psychiatrist. Specialists have deeper expertise in diagnosing dementia types and creating treatment plans. Try to get an appointment within the next 2-4 weeks.
☐ Tell at least one trusted person
Don't carry this news alone. Tell at least one close family member or friend within the first week. You need emotional support, and you'll need practical help as time goes on. Choose someone who will listen without judgment and who might be able to assist with future care responsibilities.
☐ Start a simple notebook or digital file
Begin tracking important information immediately. Even a basic spiral notebook works. Record the diagnosis date, doctor's name, symptoms you've observed, and any medications prescribed. This documentation becomes invaluable at future appointments.
☐ Research elder law attorneys in your area
Don't wait to handle legal planning. Start identifying elder law attorneys now through the National Academy of Elder Law Attorneys (NAELA) website or ask your doctor for recommendations. You don't need to schedule an appointment yet, just begin researching qualified attorneys.
Weeks 2-4: Medical Understanding and Organization
☐ Attend the specialist appointment
Bring your loved one to this critical appointment. Also bring another family member if possible so one person can support your loved one while the other takes detailed notes.
What to bring:
- Complete medication and supplement list
- Symptom diary with specific examples and dates
- Insurance cards and identification
- List of questions prepared in advance
Questions to ask the specialist:
- What specific type of dementia is this, and how certain are you?
- What stage are we currently in?
- What medication options exist, and what results should we expect?
- What are the most important safety concerns right now?
- How often should we follow up with you?
- When should I call between appointments?
☐ Set up a centralized organization system
Choose how you'll track medical information going forward: either a physical binder with labeled sections or a digital care coordination platform like CareThru.
Information to organize:
- All healthcare providers with contact information
- Medication list with dosages and schedules
- Appointment history and upcoming visits
- Insurance information and policy numbers
- Symptom log with dates and specific observations
- Emergency contact list
☐ Share the diagnosis with key family members
By week 3 or 4, have a conversation with close family about the diagnosis. Be clear about what type of dementia it is, what stage, and what you've learned from doctors. More importantly, start discussing how family members can help and share responsibilities.
Script for family conversation:
"I need to share important news. [Name] has been diagnosed with [type] dementia, currently in [stage]. The doctor expects gradual progression over time. I'm going to need help managing appointments, legal planning, and eventually daily care. Can we talk about how each of us might be able to contribute based on our situations?"
☐ Research and schedule consultation with elder law attorney
By week 4, you should have identified 2-3 potential elder law attorneys. Call to schedule initial consultations, which are often free or low-cost. Aim to have your first attorney meeting within the next 4-6 weeks.
☐ Begin documenting behavioral patterns
Start keeping more detailed notes about your loved one's symptoms. Document specific incidents: dates, times, what happened, triggers if you can identify them, and how your loved one responded. These patterns help doctors adjust treatment and help you predict and manage difficult situations.
Weeks 5-8: Legal Planning and Safety Modifications
☐ Meet with elder law attorney and begin document preparation
This is your most critical task in the first 90 days. You must complete legal documents while your loved one has capacity to sign them.
Documents to prioritize:
- Financial power of attorney
- Healthcare power of attorney (or healthcare proxy)
- HIPAA authorization forms
- Advance directive (living will)
- Last will and testament
- Trust (if recommended based on your assets)
Bring to your attorney meeting:
- List of all assets (bank accounts, property, investments, retirement accounts)
- Existing estate documents
- Insurance policies
- List of people you're considering for various roles (financial agent, healthcare proxy)
For detailed guidance, see our comprehensive guide on legal planning after a dementia diagnosis.
☐ Complete and execute legal documents
Work with your attorney to finalize all documents. This may require multiple meetings or revisions. Once finalized, ensure documents are properly signed, notarized if required, and that copies are distributed to relevant parties (healthcare providers, financial institutions, designated agents).
☐ Conduct a home safety assessment
Walk through your loved one's home (or your shared home) room by room and identify safety hazards.
Safety checklist by room:
Living areas and hallways:
- Remove or secure throw rugs
- Clear clutter from walkways
- Improve lighting; add motion-sensor nightlights
- Mark stair edges with bright tape
- Ensure handrails are secure
Kitchen:
- Install automatic stove shut-off or develop system for removing knobs
- Secure cleaning products and sharp objects
- Check that smoke detectors and fire extinguishers work
- Organize medications in weekly pill organizer
Bathrooms:
- Install grab bars near toilet and in shower/tub
- Add non-slip mats
- Consider raised toilet seat if needed
- Set water heater to 120°F maximum
Bedrooms:
- Ensure lamp, phone, and water are within reach of bed
- Remove trip hazards
- Consider bed rails if fall risk exists
For more detailed safety strategies, read our guide on managing paranoia and other behavior changes.
☐ Set up medication management system
Establish a reliable method for managing your loved one's medications. This might include:
- Weekly pill organizers clearly labeled by day and time
- Medication reminder apps or alarms
- A chart tracking when medications are taken
- Regular pharmacy reviews to check for drug interactions
☐ Assess driving safety
Have an honest conversation with your loved one and their doctor about driving. Ask the doctor to formally assess driving ability. If concerns exist, begin planning for transportation alternatives: family members driving, rideshare services, senior transportation programs, or volunteer driver programs through faith communities.
Weeks 9-12: Building Support and Planning Financially
☐ Join a caregiver support group
By the third month, emotional support becomes critical. Join an Alzheimer's Association support group (online or in-person) for caregivers. Connecting with others facing similar challenges reduces isolation and provides practical advice.
☐ Research adult day programs and respite care options
Even if you don't need these services immediately, knowing what's available in your area helps you plan ahead. Adult day programs provide supervision, activities, and social interaction for people with dementia while giving caregivers respite.
Research options:
- Adult day centers in your area
- In-home companion services
- Respite care programs (short-term residential stays)
- Faith-based or community volunteer programs
☐ Review insurance coverage and understand benefits
Understand what your loved one's insurance covers regarding dementia care:
- Does Medicare or private insurance cover specialist visits?
- What medications are covered?
- Are occupational therapy or social work consultations covered?
- Does long-term care insurance exist, and what does it cover?
☐ Develop a preliminary financial plan
Meet with a financial advisor (ideally one with elder care experience) to understand:
- Monthly costs of current care
- Projected future care costs as dementia progresses
- Available financial resources (income, savings, insurance)
- Whether Medicaid planning makes sense for your situation
- How to protect assets while ensuring quality care
☐ Set up a shared family communication system
Implement a method for keeping family members informed and coordinated. This might be a shared digital platform like CareThru where you can post updates, share calendars, assign tasks, and give everyone visibility into appointments and care needs.
Benefits of shared systems:
- Reduces repetitive phone calls explaining the same information
- Creates transparency about what you're managing
- Makes it easier for family to help with specific tasks
- Maintains records of what's been done and what's pending
☐ Explore additional support services
Research what's available in your community:
- Alzheimer's Association local chapter resources
- Area Agency on Aging services
- Meals on Wheels or meal delivery programs
- Senior center programs
- Faith community support groups
- County or state programs for seniors
☐ Schedule your own medical checkup
Caregiving is physically and emotionally demanding. Schedule a checkup for yourself and be honest with your doctor about new caregiving responsibilities. Discuss stress management, any symptoms you're experiencing, and strategies for maintaining your own health.
☐ Create a daily routine for your loved one
People with dementia often do better with consistent routines. By week 12, establish a regular daily schedule that includes:
- Regular wake and sleep times
- Consistent meal times
- Medication times
- Physical activity or walks
- Mentally stimulating activities (puzzles, reading, conversation)
- Social interaction
- Quiet time
Routines reduce anxiety and confusion while making care more manageable.
Additional Important Tasks for Your First 90 Days
☐ Understand your loved one's type of dementia
Different dementia types progress differently and respond to various treatments. Make sure you understand whether your loved one has:
- Alzheimer's disease (most common, affects memory first)
- Vascular dementia (from stroke or reduced blood flow)
- Lewy body dementia (includes visual hallucinations and movement issues)
- Frontotemporal dementia (affects behavior and language first)
- Mixed dementia (combination of types)
☐ Document your loved one's wishes while they can express them
Have conversations while your loved one can still communicate clearly about:
- Preferences for future care settings
- End-of-life wishes
- Important values and priorities
- Special memories or family history they want preserved
- Messages they want to share with family members
Consider video recording some conversations as a way to preserve their voice and personality.
☐ Organize important documents in a secure location
Gather and organize in one secure, accessible location:
- Birth certificate and Social Security card
- Marriage certificate and divorce decrees (if applicable)
- Military discharge papers (if applicable)
- Property deeds and titles
- Insurance policies (life, health, long-term care, property)
- Bank and investment account information
- Tax returns (last 3-5 years)
- Completed legal documents (POA, will, advance directive)
☐ Notify relevant parties about diagnosis (with permission)
With your loved one's permission and using HIPAA releases, inform:
- All healthcare providers
- Pharmacy
- Insurance companies (especially if disability or long-term care insurance exists)
- Employer (if your loved one is still working)
- Financial advisors or accountants
- Close friends who can provide support
☐ Begin learning about dementia progression
Educate yourself about what to expect as dementia progresses. Understanding typical patterns helps you plan proactively rather than react in crisis. Resources include:
- Alzheimer's Association website and educational programs
- National Institute on Aging resources
- Books recommended by your doctor or support group
- Reputable dementia care websites
When you know what's coming, changes feel less shocking and you can prepare appropriate responses.
How CareThru Simplifies Your First 90 Days
The first three months after diagnosis involve tracking dozens of tasks, coordinating multiple family members, managing appointments and medications, and organizing mountains of information. CareThru is designed specifically to handle this complexity.
Here's how CareThru helps you complete this 90-day checklist:
Task management: Create checklists for all the items above, assign tasks to family members, set due dates, and track completion. Nothing gets forgotten.
Medical organization: Store all provider contact information, insurance details, medication lists, and appointment history in one searchable database accessible from any device.
Family coordination: Share updates instantly with everyone on the care team. Post notes after doctor appointments, share the week's schedule, and let family members sign up for specific helping tasks.
Medication tracking: Set up medication schedules with automatic reminders, log when doses are taken, and maintain a complete history to share with doctors.
Document storage: Upload and organize legal documents, insurance cards, medical records, and other critical paperwork so everything is accessible when you need it.
Pattern tracking: Log daily observations about symptoms, behaviors, and good or challenging days. Over time, these logs reveal patterns that help doctors adjust treatment and help you anticipate needs.
Instead of juggling notebooks, spreadsheets, phone calls, texts, and scattered documents, CareThru centralizes everything your family needs to coordinate care effectively during the critical first 90 days and beyond.
Your 90-Day Checklist at a Glance
Days 1-7:
- ☐ Process emotions and seek initial support
- ☐ Schedule specialist appointment
- ☐ Tell at least one trusted person
- ☐ Start tracking information
- ☐ Research elder law attorneys
Weeks 2-4:
- ☐ Attend specialist appointment
- ☐ Set up organization system
- ☐ Share diagnosis with family
- ☐ Schedule attorney consultation
- ☐ Document behavioral patterns
Weeks 5-8:
- ☐ Meet with elder law attorney
- ☐ Complete legal documents
- ☐ Conduct home safety assessment
- ☐ Set up medication management
- ☐ Assess driving safety
Weeks 9-12:
- ☐ Join caregiver support group
- ☐ Research respite care options
- ☐ Review insurance coverage
- ☐ Develop financial plan
- ☐ Set up family communication system
- ☐ Explore community support services
- ☐ Schedule your own medical checkup
- ☐ Create daily routine for loved one
What Happens After the First 90 Days
Completing this checklist doesn't mean you're done. Dementia is a progressive condition that requires ongoing adaptation. But finishing these tasks in your first three months means you've established the foundation for effective long-term care.
In months 4-6 and beyond, focus on:
- Maintaining regular follow-up appointments with medical team
- Adjusting medications and care strategies as symptoms change
- Deepening connections with support groups and community resources
- Monitoring for signs that care needs are increasing
- Planning proactively for next stages rather than reacting in crisis
As your loved one's needs evolve, you may eventually need to consider more intensive care options. Our guide on how to know when it's time for memory care can help with that transition when the time comes.
Frequently Asked Questions About the First 90 Days After Dementia Diagnosis
What if I can't complete everything in this checklist within 90 days?
Do your best, but prioritize the most urgent items: specialist appointment, legal planning, and home safety. Legal documents are absolutely critical and must be completed while your loved one has capacity. Other tasks like joining support groups or researching respite care can happen in months 4-6 if needed. The key is steady progress, not perfection.
How much does completing all of this cost?
Major expenses in the first 90 days typically include: specialist appointments (usually covered by insurance with copays), elder law attorney fees ($1,500-$3,000 for complete planning), and basic home safety modifications ($200-$1,000 depending on needs). These are investments that prevent much larger costs later. Emergency guardianship can cost $10,000+, and preventable falls can lead to expensive hospitalizations.
Do I really need to rush legal planning in the first 90 days?
Yes. This is the most time-sensitive item on your entire checklist. Legal documents require cognitive capacity to execute. Dementia is progressive by definition. Waiting even a few months could mean your loved one no longer has legal capacity to sign, resulting in expensive, time-consuming court guardianship proceedings. Complete legal planning within the first 60-90 days without exception.
What if my loved one resists some of these steps, especially legal planning?
Frame everything as protecting them and honoring their wishes, not taking away control. Use language like "Let's make sure your voice is heard in future decisions" or "We want to document your preferences while we can." If resistance continues, involve their doctor, who can explain why planning now is crucial. Some families find success when the doctor recommends legal planning as a "prescription."
Should I tell my loved one about the diagnosis before completing legal planning?
In most cases, yes, especially in early-stage dementia. They deserve honesty and the chance to participate in planning. However, how you communicate the diagnosis matters. Use clear, direct language without euphemisms. Emphasize that you'll face this together and that planning now gives them control over future decisions. If you're unsure about how to have this conversation, ask their doctor for guidance.
How do I know which tasks to delegate to other family members?
Assign tasks based on each person's strengths, availability, and proximity. Local family members might handle day-to-day care or drive to appointments. Remote family members might research care options, manage insurance paperwork, or coordinate respite care. Someone detail-oriented might maintain the organization system. Someone good with people might coordinate family meetings. Be explicit about what you need rather than waiting for people to volunteer.
What if I'm already past the first 90 days and haven't done these things?
Start now. It's never too late to implement better organization, safety improvements, or support systems. However, if you haven't completed legal planning yet, treat that as an emergency. Contact an elder law attorney immediately and arrange for a capacity evaluation if there's any question about whether your loved one can still legally sign documents. The sooner you act, the better.
How often should we follow up with the dementia specialist after the initial appointment?
Typically every 3-6 months in early-stage dementia, though this varies based on symptoms and medication adjustments. Your doctor will recommend a schedule. Between appointments, contact the office if you notice sudden changes in cognition, concerning new behaviors, medication side effects, or any medical emergencies. Keep notes about what you want to discuss at each visit.
Disclaimer: This checklist provides general guidance for the first 90 days after a dementia diagnosis and is not a substitute for professional medical, legal, or financial advice. Always consult with your loved one's healthcare providers about specific medical decisions, work with qualified elder law attorneys regarding legal planning, and seek financial advice from licensed advisors regarding financial matters.
Sources
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- Family Caregiver Alliance. (2024). "Legal Planning for Incapacity: A Checklist." Available at: https://www.caregiver.org/resource/legal-planning-incapacity/
- National Academy of Elder Law Attorneys. (2024). "Planning for Your Future." Available at: https://www.naela.org
- Alzheimer's Association. (2024). "Safety at Home." Available at: https://www.alz.org/help-support/caregiving/safety/home-safety
- Medicare.gov. (2024). "Medicare's Coverage of Dementia Care." Available at: https://www.medicare.gov
- National Institute on Aging. (2024). "Medications for Memory, Cognition and Dementia-Related Behaviors." Available at: https://www.nia.nih.gov/health/alzheimers-treatment/medications-memory-cognition-and-dementia-related-behaviors
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- AARP. (2024). "Financial Planning for Alzheimer's and Dementia Care." Available at: https://www.aarp.org/caregiving/financial-legal/