If you just learned that your parent or spouse has dementia, you're probably feeling shocked, scared, and unsure where to begin. That's completely normal. Here's what to do right now:
Immediate next steps:
- Schedule a follow-up appointment with a neurologist or geriatrician within 2-4 weeks
- Tell at least one other trusted family member or friend so you're not carrying this alone
- Start a simple notebook or app to track medications, appointments, and symptoms
- Begin researching elder law attorneys to start legal planning while your loved one can still participate
- Take care of yourself: this is a marathon, not a sprint, and you'll need support
The most important thing to know: you have time. Dementia progresses gradually, often over years. You don't have to make every decision this week. What matters most right now is getting organized, asking the right questions, and building a support system.
Step 1: Take a Breath and Understand What the Diagnosis Really Means
A dementia diagnosis can feel like the world just stopped. But it's a starting point for planning, not an immediate crisis.
Dementia is an umbrella term for brain conditions that affect memory, thinking, and daily functioning. Common types include Alzheimer's disease (60-80% of cases), vascular dementia, Lewy body dementia, and frontotemporal dementia. Each progresses differently.
What a dementia diagnosis does mean:
- Changes happen gradually over months and years
- Early planning makes future care easier
- Treatments and lifestyle changes may slow progression
- Your loved one can still participate in many activities and decisions
What it does NOT mean:
- Your loved one's personality didn't disappear overnight
- You don't need to move them immediately
- They can still make many decisions
- Life doesn't end today
Many people live well with early-stage dementia for years, continuing hobbies, seeing friends, and maintaining independence with support. Right now, focus on gathering information and building your team. Everything else can wait.
Step 2: Schedule Follow-Up Appointments and Ask the Right Questions
Your first appointment after diagnosis should be with a specialist: a neurologist, geriatrician, or geriatric psychiatrist. If the diagnosis came from a primary care doctor, ask for a referral.
Bring to the appointment:
- List of all current medications and supplements
- Symptom log: when you first noticed changes, specific behaviors or memory issues
- Insurance cards and photo ID
- Another family member to take notes
Essential questions to ask:
About the diagnosis:
- What specific type of dementia is this, and how certain are you?
- What stage is my loved one in now?
- Do we need any additional testing?
About treatment:
- Are there medications that might help with symptoms or slow progression?
- What are potential side effects?
- Should we consider clinical trials?
- What lifestyle changes could help?
About safety and daily life:
- Is it still safe for them to drive?
- Can they live alone, or do they need supervision?
- What safety risks should we address at home?
About the care team:
- Should we see other specialists (occupational therapist, social worker)?
- How often should we follow up?
- What symptoms should prompt us to call between appointments?
About planning:
- How quickly is this likely to progress?
- What should we expect in the next 6-12 months?
Write down answers or record the conversation with permission. You won't remember everything when you're overwhelmed.
Step 3: Start a Simple System for Tracking Information
From now on, you'll juggle multiple doctor appointments, medication changes, insurance calls, legal documents, and daily observations. Getting organized now saves countless hours of stress later.
What to track from day one:
- Medications: name, dosage, frequency, purpose, start/change dates
- Healthcare providers: names, specialties, contact info
- Appointments: past and upcoming, with notes on discussions
- Symptoms and behavior changes: specific examples with dates
- Good days and bad days: patterns help doctors adjust treatment
- Legal and financial tasks: what's completed, what's in progress
- Emergency contacts: family, neighbors, care manager, after-hours lines
Low-tech option: Use a three-ring binder with dividers. Keep it in an easy-to-find spot.
High-tech option: Use a caregiving coordination app like CareThru. Digital tools let you store provider info, set medication reminders, share updates with family instantly, and access information from your phone anywhere.
The best system is the one you'll actually use. Whatever you choose, share access with at least one other family member so someone can step in if you need a break.
Step 4: Begin Legal and Financial Planning While Your Loved One Can Still Participate
This is the most important step in the first 90 days, and families most often delay it until it's too late.
Legal documents must be signed while your loved one has "legal capacity." Dementia is progressive. There will come a day when they can't legally sign, and if that happens first, you'll face months of expensive court proceedings for guardianship.
Planning isn't giving up or taking away autonomy. It's ensuring their wishes are honored and they're protected.
Essential documents to complete now:
- Financial power of attorney: Names someone to manage accounts and pay bills
- Healthcare proxy: Names someone to make medical decisions
- HIPAA authorization: Allows specific people to access medical information
- Living will/advance directive: Spells out end-of-life care preferences
- Last will and testament: Directs how assets are distributed
- Trust (if applicable): Helps avoid probate and provides control over assets
How to get started:
- Ask the doctor for an elder law attorney referral, or search through the National Academy of Elder Law Attorneys (NAELA)
- Schedule a consultation within 2-4 weeks
- Gather: list of assets, existing documents, insurance policies
- Have the conversation with your loved one using language like "This protects you and ensures your wishes are followed"
- Include your loved one in the attorney meeting if they can participate
Learn more in our guide on legal planning after a dementia diagnosis.
Cost concerns: Elder law attorneys typically cost $1,500-$3,000. It's worth it. Emergency guardianship can cost $10,000-$15,000 and takes months.
Step 5: Make the Home Safer for Early-Stage Dementia
Simple changes now reduce fall risks and confusion as dementia progresses.
Quick safety checklist:
Throughout the home:
- Remove throw rugs and clutter
- Improve lighting, add nightlights
- Install grab bars in bathrooms
- Mark stair edges with bright tape
- Lock up firearms, power tools, dangerous chemicals
Kitchen:
- Install automatic stove shut-off or remove knobs
- Lock up cleaning products
- Use medication organizers with reminders
Bedroom:
- Put lamp, phone, and water within reach
- Consider bed alarm for wandering
Bathroom:
- Add non-slip mat in tub/shower
- Install raised toilet seat if needed
- Set water heater to 120°F to prevent scalding
Two critical safety conversations:
Driving: Ask the doctor to assess at every visit. Watch for getting lost, near-misses, or frequent honking. When it's time to stop, have alternatives ready: family drivers, rideshares, senior transportation.
Wandering: Consider enrolling in MedicAlert + Alzheimer's Association Safe Return, installing locks out of easy view, and alerting neighbors.
For more guidance, read our article on managing paranoia and other behavior changes.
Step 6: Build Your Care Team and Share the News with Family
You can't do this alone. Your care team includes medical providers, family caregivers, and community support.
Telling family about the diagnosis:
"I need to share difficult news. [Name] was diagnosed with dementia. The doctor says it's [type] and they're in [stage]. I know this is shocking.
Here's what happens next: We have a follow-up on [date]. We're starting legal planning this month. We're making safety changes.
I need help. I can't do this alone. Can we talk about sharing caregiving responsibilities? I'd like to use a shared calendar so we're all informed."
Be prepared for different reactions. Some will jump in, others will deny or disappear. Focus on building your core team with people who show up.
Using a shared care platform: Tools like CareThru let you share appointment schedules, post updates after doctor visits, assign tasks, and give everyone visibility without constant calls or texts. When family sees what you're managing, they're more likely to help.
Step 7: Look After Your Own Emotional Health from Day One
You're not just managing a diagnosis. You're grieving the future you thought you'd have.
This grief has a name: ambiguous loss. It's mourning the person they were while they're still here. It's normal to feel angry, sad, resentful, scared, and exhausted, sometimes all at once.
Normal feelings after diagnosis:
- Denial: "Maybe the doctor is wrong"
- Anger: "This isn't fair"
- Guilt: "I should have noticed sooner"
- Grief: "I'm losing them bit by bit"
- Isolation: "No one understands"
How to support yourself:
- Join a support group: Other caregivers truly understand
- Consider counseling: Process feelings in a safe space
- Talk to your employer: Ask about flexibility and caregiver leave
- Build in regular respite: Schedule time away, even in early stage
- Watch for burnout signs: Sleep changes, withdrawal, constant anxiety, frequent illness
If you're experiencing these, talk to your doctor and get more help. You can't pour from an empty cup.
Looking Ahead: What to Expect in the Next 6-12 Months
In early-stage dementia, you might see:
- More memory lapses for recent events
- Repeating questions or stories
- Trouble finding words
- Getting lost occasionally
- Difficulty with complex tasks
- Personality changes: less patience, more anxiety
- "Sundowning" (confusion in late afternoon)
Planning in layers:
This month: Get follow-up appointment, start legal planning, organize medications, tell family, make home safer.
Next 3-6 months: Complete legal documents, try new medications, explore day programs, join support group.
Next 6-12 months: Monitor progression, adjust care plan, consider respite options, begin conversations about future care.
For guidance on future decisions, read how to know when it's time for memory care.
How CareThru Can Help You Stay Organized and Supported
CareThru is a caregiving coordination platform built for families managing complex care like dementia.
It helps you:
- Store all provider contact info and medical history in one searchable place
- Set medication reminders and track when doses are taken
- Share updates with family so everyone sees the same information
- Log behavior changes to identify patterns for doctors
- Coordinate responsibilities through shared calendars and tasks
CareThru doesn't replace medical care or family support. It makes both more effective by keeping everyone informed and organized, reducing stress in the overwhelming early months.
Frequently Asked Questions About What to Do After a Dementia Diagnosis
How soon do we need to change my parent's living situation after a dementia diagnosis?
In most cases, not right away. Many people with early-stage dementia continue living independently or with minimal support for months or years. Focus first on safety modifications, medication management, and regular check-ins. You'll have time to consider bigger changes as the disease progresses.
Should I tell my loved one they have dementia?
In most cases, yes, especially in early stage when they can understand and participate in planning. Being honest allows them to be part of decisions about care and finances while they have capacity. Use clear, compassionate language: "The doctor says you have dementia, which means your memory will change over time. We'll work together to plan ahead." If your loved one has moderate dementia or severe anxiety, talk with their doctor about whether and how to share the diagnosis.
Is it normal to feel angry or resentful after a dementia diagnosis?
Absolutely. Anger and resentment are common among dementia caregivers. You might feel angry at the disease, at your loved one for behaviors they can't control, at family who aren't helping, or at the unfairness. These feelings don't make you a bad caregiver. They make you human. Acknowledge them and find healthy outlets like therapy or support groups.
How do I balance work, kids, and a new caregiving role?
This is extremely challenging for the "sandwich generation." Have honest conversations with your employer about flexibility and look into FMLA or caregiver leave. At home, involve kids in age-appropriate ways. Lower your expectations: you can't do everything perfectly. Prioritize what must get done, let go of what can wait, and actively ask for help. Consider this a season of survival, not success.
When should we consider stopping driving?
Warning signs include: getting lost on familiar routes, driving too slowly or fast, failing to notice signals, near-misses, other drivers honking frequently, difficulty with turns, or anxiety while driving. Ask the doctor to assess at each appointment. When it's time to stop, remove keys, disable the car, or sell it. Offer alternatives like family drivers, rideshares, or senior transportation.
How often should we follow up with the dementia specialist?
Initially, expect visits every 3-6 months to monitor progression and adjust medications. Frequency may change based on stability. Between appointments, contact the doctor for sudden changes in cognition, new concerning behaviors, medication side effects, or medical emergencies.
What's the difference between dementia and Alzheimer's disease?
Dementia is an umbrella term for diseases causing decline in memory, thinking, and daily functioning. Alzheimer's disease is the most common type (60-80% of cases). Other types include vascular dementia, Lewy body dementia, and frontotemporal dementia. Your doctor should specify which type, as treatments and progression differ.
Can my loved one still make their own decisions after a dementia diagnosis?
In early-stage dementia, yes. A diagnosis doesn't automatically mean someone loses capacity. They can still express preferences and make choices about daily life. Capacity is decision-specific and can fluctuate. Over time, they'll need more help. That's why completing legal documents early is critical, while they can still participate.
Disclaimer: This article provides general information about steps to take 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 and with qualified elder law attorneys regarding legal planning.
Sources
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- Mayo Clinic. (2024). "Dementia: Diagnosis and Treatment." Available at: https://www.mayoclinic.org/diseases-conditions/dementia/diagnosis-treatment/drc-20352619
- National Academy of Elder Law Attorneys. (2024). "Why You Need an Elder Law Attorney." Available at: https://www.naela.org
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- National Institute on Aging. (2024). "Providing Care and Comfort at the End of Life." Available at: https://www.nia.nih.gov/health/end-life/providing-comfort-end-life
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