The days and weeks following a dementia diagnosis feel overwhelming and paralyzing. You're processing the emotional weight of what this means for your loved one and your family while simultaneously knowing you need to take action. There are legal documents to establish, financial planning to address, medical appointments to schedule, safety modifications to make, and support systems to build. The sheer volume of what needs to happen is crushing, especially when you're grieving and don't know where to start or what's most urgent.
This checklist breaks down the critical tasks into manageable steps with clear priorities. Not everything needs to happen immediately, but some actions are time-sensitive and must occur while your loved one still has legal capacity to sign documents and participate in decisions. Other tasks can happen gradually over the first few months. Understanding what's urgent versus what can wait reduces panic and helps you focus energy where it matters most during this difficult transition period.
Here's what to do right now:
- Schedule a follow-up appointment with a neurologist or geriatrician within the next two weeks
- Contact an elder law attorney this week to establish power of attorney and advance directives while your loved one can sign
- Start a simple notebook or app to track medications, symptoms, and appointments
- Tell at least two close family members or friends about the diagnosis so you're not alone
- Take a deep breath and give yourself permission to tackle this one step at a time
Key Takeaway:
The weeks after diagnosis require balancing urgent legal and medical tasks with longer-term planning for care, finances, and support. Focus first on time-sensitive legal documents and medical follow-up, then systematically address safety, financial planning, and building your support network. You don't need to do everything perfectly or immediately, you just need to start.
Immediate Priorities (First 1-2 Weeks)
These tasks are most urgent because they require your loved one's participation or become harder if delayed.
☐ Schedule follow-up medical appointments
Don't stop at the initial diagnosis. Comprehensive evaluation and treatment planning take multiple visits.
What to schedule:
- Follow-up with diagnosing doctor (neurologist or geriatrician) within 2-4 weeks
- Primary care doctor visit to coordinate overall care
- Any recommended specialists (if not already involved)
Questions to ask at follow-up:
- What type of dementia do they have?
- What stage are they in currently?
- What medications might help symptoms?
- What progression should we expect?
- What safety concerns should we address now?
- What referrals do we need (physical therapy, occupational therapy, social work)?
☐ Contact an elder law attorney
This is the single most urgent legal task. Your loved one needs legal capacity to sign power of attorney and other documents.
Call within the first week to schedule appointment.
What you need:
- Financial power of attorney
- Healthcare power of attorney
- Advance directives (living will)
- Will or trust review and updates
- HIPAA authorizations
☐ Have the conversation with your loved one
If you haven't already, sit down with your loved one to discuss the diagnosis, their concerns, and their wishes.
Topics to cover:
- Acknowledge feelings (fear, sadness, anger)
- Ask what matters most to them
- Discuss who they trust to help make decisions
- Talk about preferences for future care
- Ask about end-of-life wishes while they can articulate them
For guidance on this conversation, see our article on how to talk to someone about memory problems.
☐ Tell key family members
You need support, and family needs to know what's happening.
Who to tell first:
- Spouse or partner
- Adult children
- Siblings (yours and your loved one's)
- Close friends who can provide support
See our guide on how to tell family about dementia diagnosis.
☐ Create a simple information tracking system
Start documenting everything from day one.
What to track:
- Medications and doses
- Doctor appointments and notes
- Symptoms and changes
- Important phone numbers
- Questions for doctors
A simple notebook works, or use an app like CareThru to organize everything digitally and share with family.
Essential Tasks (First Month)
Complete these within the first 30 days after diagnosis.
☐ Financial planning and assessment
Understand the financial situation and begin planning.
Gather information:
- List all income sources (Social Security, pensions, retirement accounts)
- List all assets (bank accounts, investments, real estate, vehicles)
- List all debts and monthly expenses
- Locate insurance policies (health, life, long-term care)
- Find existing legal documents (wills, trusts, POA if they exist)
Consult with financial advisor or elder law attorney about strategies for protecting assets and planning for care costs.
☐ Register power of attorney with financial institutions
Once you have POA documents, register them everywhere.
- All banks and credit unions
- Investment and brokerage accounts
- Credit card companies
- Insurance companies
- Mortgage lenders
- Any other financial institutions
This process takes time. Start immediately and expect multiple visits and forms.
☐ Set up medication management system
Early-stage dementia often affects medication adherence.
- Pill organizers (weekly boxes with daily compartments)
- Medication alarms or apps
- Automatic prescription refills
- Regular check-ins to ensure medications are taken correctly
- List of all medications, doses, and timing
☐ Address driving safety
One of the most contentious early decisions.
Assess safety:
- Talk to the doctor about driving ability
- Consider professional driving evaluation
- Observe your loved one driving if possible
- Note any concerning behaviors (getting lost, slow reactions, confusion)
If driving is unsafe:
- Have doctor recommend stopping (easier than family being "the bad guy")
- Gradually reduce driving (start with highways, night driving, long distances)
- Eventually remove car access
- Arrange alternative transportation
☐ Begin home safety modifications
Start with simple changes that reduce immediate risks.
- Remove throw rugs or secure with non-slip pads
- Improve lighting, especially in hallways and stairs
- Install grab bars in bathroom
- Check smoke detectors and carbon monoxide detectors
- Remove or secure hazardous items (chemicals, weapons, excess medications)
- Consider stove shut-off devices if cooking is becoming unsafe
Important Tasks (First 3 Months)
Address these within the first quarter after diagnosis.
☐ Research and understand the specific dementia type
Learn about your loved one's specific diagnosis and what to expect.
Resources:
- Alzheimer's Association (alz.org) for Alzheimer's disease
- Association for Frontotemporal Degeneration (theaftd.org) for FTD
- Lewy Body Dementia Association (lbda.org) for Lewy body dementia
- Books and reputable websites about the specific type
☐ Join support groups
Connect with others who understand what you're experiencing.
- Local Alzheimer's Association or dementia support groups
- Online communities specific to dementia type
- Caregiver support groups (general)
- Faith-based support if that's meaningful to you
☐ Identify and contact local resources
Build your network of support services.
- Area Agency on Aging (eldercare.acl.gov)
- Adult day programs
- In-home care agencies
- Memory care facilities (even if not needed now, know your options)
- Respite care options
- Meal delivery services
- Transportation services
☐ Address financial exploitation risks
People with dementia are vulnerable to scams and exploitation.
- Set up account alerts for unusual transactions
- Remove from mailing lists (DMAchoice.org)
- Block robocalls
- Monitor accounts regularly
- Limit access to checkbooks and credit cards
- Consider credit freeze
☐ Plan for employment and income
If your loved one is still working, address this proactively.
- Discuss work capacity with doctor
- Explore workplace accommodations if early stage
- Apply for disability benefits if stopping work
- Understand impact on health insurance and retirement benefits
- Plan transition carefully with elder law attorney and financial advisor
If you're the caregiver and working, assess: Can you continue working full-time? What workplace accommodations do you need? What's the financial impact of reducing hours?
☐ Create emergency plan
Prepare for crisis situations.
- Who to call in emergency
- Backup caregivers if you're unavailable
- Medical information for emergency responders
- List of medications and doctors
- Advance directives location
- ICE (In Case of Emergency) contacts in phone
☐ Begin financial applications if eligible
Research and start applications for benefits.
- Social Security Disability Income (if your loved one is under 65 and can't work)
- Veterans benefits (Aid and Attendance)
- Long-term care insurance claims (if policy exists)
- Medicaid planning consultation (even if not eligible now)
Ongoing Tasks (First 6-12 Months)
These can be addressed gradually over the first year.
☐ Establish care routines
Consistency and structure help manage dementia symptoms. Create regular daily schedules.
☐ Build your knowledge
Become educated about behavior management, communication techniques, and progression.
☐ Plan for future care needs
Think ahead: when will in-home care be needed? When might memory care be appropriate?
☐ Address legal and financial loose ends
Complete estate planning, beneficiary designations, and insurance policy reviews.
☐ Focus on your own wellbeing
Establish regular respite, support systems, boundaries, and self-care routines.
☐ Maintain your loved one's quality of life
Encourage social connections, physical activity, hobbies, and meaningful engagement.
For more detailed guidance, see our comprehensive first 90 days after dementia diagnosis checklist.
Common Mistakes to Avoid
Learning from others' mistakes helps you avoid them.
❌ Waiting too long on legal documents
The most common and costly mistake. Many families delay until capacity is gone, forcing expensive guardianship.
✓ Do it now: Schedule attorney within first week. Complete documents within first month.
❌ Trying to do everything alone
Isolation and refusing help leads to burnout.
✓ Instead: Tell people what's happening and accept help offered. Build support network early.
❌ Not tracking information
Without documentation, you forget important details and can't track progression.
✓ Instead: Start tracking system immediately (notebook, app, or tool like CareThru).
❌ Ignoring your own needs
Sacrificing your health doesn't help your loved one.
✓ Instead: Prioritize self-care, respite, and support from day one.
❌ Making major decisions in crisis
Waiting until emergency forces rushed, suboptimal choices.
✓ Instead: Plan proactively when you have time to research and consider options.
❌ Not communicating with family
Keeping diagnosis secret or not involving family creates problems.
✓ Instead: Share information, involve family in planning, and establish clear communication.
❌ Focusing only on problems
Getting consumed by loss and difficulty without maintaining joy.
✓ Instead: Focus on what your loved one can still do and enjoy. Maintain activities and connections.
Using This Checklist Effectively
Don't try to do everything at once
This list is comprehensive and meant to guide you over weeks and months. Pick one or two items daily or weekly and make progress gradually.
Prioritize based on your situation
Not every item applies to everyone. Focus on what's most relevant to your loved one's stage, type of dementia, and family circumstances.
Get help with the list
Share this checklist with family members or friends who want to help. Assign tasks to willing helpers.
Check off completed items
Track progress to feel accomplishment and see what remains.
Revisit regularly
Your needs change as dementia progresses. Review this list every few months to see if previously unimportant tasks are now priorities.
Be patient with yourself
You won't do everything perfectly. Some tasks will take longer than hoped. Some decisions will need revisiting. That's okay. You're doing your best in an impossible situation.
How CareThru Can Help You Manage This Checklist
Managing dozens of tasks across legal, medical, financial, and caregiving domains is overwhelming. CareThru helps organize everything in one place.
Track this checklist: Check off completed tasks and set reminders for what's next. The platform helps you stay organized when life feels chaotic.
Store documents: Keep all the documents you're gathering (medical records, legal documents, insurance policies, account information) where you and trusted family members can access them quickly.
Track medications and appointments: Document medications, appointments, and symptoms from day one. This becomes valuable as you work with doctors and plan care.
Share progress with family: Everyone knows what's been done, what remains, and who's handling what. This prevents duplication and ensures nothing falls through cracks.
Coordinate tasks: If three siblings want to help, assign tasks through the platform so everyone contributes without overlap or confusion.
Frequently Asked Questions About Getting Started After Dementia Diagnosis
What should I do first after a dementia diagnosis?
The three most urgent priorities are: (1) schedule follow-up medical appointments within 2-4 weeks, (2) contact an elder law attorney within the first week to establish power of attorney and advance directives while your loved one can sign, and (3) start documenting everything (medications, symptoms, appointments). These time-sensitive tasks create the foundation for everything else.
How quickly do I need to get power of attorney documents signed?
As soon as possible, ideally within the first month after diagnosis. Your loved one must have legal capacity to sign these documents, and capacity declines as dementia progresses. Waiting risks losing the window when they can participate in decisions. Contact an elder law attorney within the first week and schedule the signing appointment as soon as documents are drafted.
Can I handle everything on my own or do I need help?
You cannot and should not handle everything alone. Dementia caregiving is too complex and demanding for one person. Build a support network immediately: tell family members, connect with friends who can help, join support groups, hire professional help as needed, and accept offers of assistance. Trying to do it all alone leads to burnout.
What if my loved one is in denial about the diagnosis?
Denial is common, especially in early-stage dementia. Don't force acceptance if it causes conflict. Focus on practical steps rather than making them acknowledge dementia explicitly. Frame actions as "planning for the future" or "being prepared just in case." Work with their doctor who may be able to communicate the diagnosis more effectively.
How do I know which tasks are most urgent?
Legal documents requiring your loved one's signature are most urgent (power of attorney, advance directives, will updates). These must happen while capacity exists. Medical follow-up and establishing care coordination are next. Financial planning and benefit applications come third. Safety modifications and support building can happen gradually over first few months.
Do I need to tell my employer about the diagnosis?
That depends on whether caregiving affects your work and whether you need accommodations or leave. If you need flexible schedule, time off for appointments, or FMLA protection, you'll need to inform your employer. If caregiving isn't impacting work yet, disclosure is personal choice. Many caregivers find that being open allows workplace support.
How much does it cost to get started with all these tasks?
Costs vary significantly by location. Elder law attorney for basic documents typically costs $1,500-$3,000. Medical appointments may have copays depending on insurance. Modifications vary from minimal (securing rugs) to thousands (major renovations). Support groups and many resources are free. Budget several thousand dollars for initial legal, medical, and basic safety needs.
What if I don't have family support or anyone to help?
Connect with formal support systems: Area Agency on Aging for local resources, support groups for emotional support, social workers who can help navigate systems, paid care services as affordable, online communities for connection, and faith communities if relevant. Consider hiring a geriatric care manager who can coordinate care and provide guidance.
Disclaimer: This checklist provides general guidance for getting started after a dementia diagnosis and is not a substitute for medical, legal, or financial advice. Every situation is unique. Consult with your loved one's healthcare team, elder law attorney, and financial advisor for guidance specific to your circumstances.
Sources
- Alzheimer's Association. (2024). "After the Diagnosis: Next Steps." Available at: https://www.alz.org/help-support/caregiving/stages-behaviors/early-stage
- National Institute on Aging. (2024). "Getting Your Affairs in Order: Legal and Financial Planning." Available at: https://www.nia.nih.gov/health/getting-your-affairs-order
- Family Caregiver Alliance. (2024). "Legal Planning for Incapacity." Available at: https://www.caregiver.org/resource/legal-planning-incapacity/
- Mayo Clinic. (2024). "Alzheimer's Disease: Planning for the Future." Available at: https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers/art-20047783
- National Academy of Elder Law Attorneys. (2024). "Questions and Answers When Looking for an Elder Law Attorney." Available at: https://www.naela.org
- Centers for Medicare & Medicaid Services. (2024). "Long-Term Care Planning." Available at: https://www.medicare.gov/what-medicare-covers/whats-not-covered-by-part-a-part-b
- National Institute on Aging. (2024). "Home Safety Checklist for Alzheimer's Disease." Available at: https://www.nia.nih.gov/health/home-safety-checklist-alzheimers-disease
- Alzheimer's Association. (2024). "Safety Issues." Available at: https://www.alz.org/help-support/caregiving/safety
- U.S. Department of Veterans Affairs. (2024). "Aid and Attendance Benefits and Housebound Allowance." Available at: https://www.va.gov/pension/aid-attendance-housebound/
- Administration for Community Living. (2024). "Eldercare Locator." Available at: https://eldercare.acl.gov