What to Do After a Dementia Diagnosis: A Comprehensive Action Plan

A dementia diagnosis can feel overwhelming. You may experience a whirlwind of emotions, fear, sadness, relief, or even denial. These feelings are completely normal. But while you're processing this life-changing news, there are critical steps you need to take immediately to protect your health, finances, and quality of life. 1. Allow Yourself to Grieve, But Don't Delay Action

Being diagnosed with Alzheimer's is life-changing, but you are not alone. It is normal to experience a range of emotions, including anger, sadness, relief, denial, and fear. Acknowledging these feelings is an important first step. However, as difficult as this moment is, time is your most valuable asset right now.

Why? Because a timely diagnosis often allows the person living with dementia to participate in legal and financial planning, and to decide who will make medical and financial decisions on their behalf in later stages of the disease. The sooner you act, the more control you retain over your own care decisions.

2. Get Regular Medical Care and Explore Treatment Options

Your first step should be scheduling appointments with your healthcare team. Attend appointments with your primary care doctor and any recommended specialists, and ask your doctor for a referral to a memory disorders clinic. This isn't just about diagnosis confirmation—it's about exploring available treatments.

While there's no cure for Alzheimer's disease, medications may manage symptoms and slow its progression. In fact, two treatments—donanemab (Kisunla™) and lecanemab (Leqembi®)—demonstrate that removing beta-amyloid from the brain reduces cognitive and functional decline in people living with early Alzheimer's. Ask your doctor which treatments are right for you, and inquire about clinical trials you may be eligible to join.

3. Create Essential Legal Documents Immediately

This is perhaps the most critical action you can take. Legal documents need to be completed while you still have clear cognitive capacity to make decisions. A power of attorney for health care allows a person with dementia to name a health care agent to make health care decisions when they are no longer able.

You'll need several documents:

Advance Directives/Living Will: A living will lets doctors know how you want to be treated if you are dying or permanently unconscious and cannot make your own decisions about emergency treatment.
Durable Power of Attorney for Finances: A durable power of attorney for finances allows you to designate another person to make decisions about your finances, such as income, assets and investments, when you can no longer do so.
Healthcare Power of Attorney: Name someone you trust to make medical decisions on your behalf.

The good news? Most people do not need an attorney to prepare advance directives. Many U.S. states have designed advance directive forms for people to complete on their own by filling in the blanks. If you want professional guidance, consider consulting an attorney who specializes in elder law, an area of legal practice focused on issues that affect seniors.

4. Plan for Long-Term Care and Financial Management

People diagnosed with Alzheimer's or a related dementia and their family members should begin planning for the possibility of long-term care as soon as possible. This includes understanding your insurance coverage and exploring options like Medicare, Medicaid, and long-term care insurance.

Have detailed conversations with family members about your wishes early on. Start discussions early with your family members and put important papers in one place and make sure a trusted person knows where.

5. Address Driving Safety Proactively

For many people, driving represents independence and autonomy. But dementia affects judgment, reaction time, and spatial awareness. Talk with your doctor if you become confused, get lost, take a long time to run a simple errand and can't explain why, or if others worry about your driving.

If concerns arise, the American Occupational Therapy Association maintains a national database of driving specialists, or you can check with your state's DMV or a health care professional to recommend someone who can evaluate driving skills. A professional assessment is objective and can help you make informed decisions about when to transition from driving.

Find other options for a person with dementia to travel safely around their community, which may include free or low-cost buses, taxi and similar private transportation services, or carpools for older people.

6. Build Your Support Network and Access Resources

You don't have to navigate this alone. Find local services by visiting the Eldercare Locator online or calling 800-677-1116. The Alzheimer's Association, available at 800-272-3900, connects you with a live person who can provide information, local resources, crisis assistance and emotional support in over 200 languages.

Support groups for both people living with dementia and their caregivers provide practical advice and emotional validation. These connections can be life-changing.

7. Plan for Safety and Accessibility at Home

It's important to remove household hazards that could lead to falls and injuries, as dementia affects cognitive abilities, memory, coordination, balance, and depth perception. Work with an occupational therapist to identify safety risks and implement modifications before they become problems.

8. Maintain Your Health and Quality of Life

After diagnosis, prioritizing your overall wellbeing becomes even more important. Be active. Exercise can help you feel better, and it keeps your muscles, joints, and heart in good shape. Eat a well-balanced diet. Stay connected with family and friends.

Participate in meaningful activities, such as hobbies or volunteering, to keep your mind active and engaged.

How Careyaya Can Support Your Journey

At Careyaya, we understand that receiving a dementia diagnosis marks the beginning of a complex caregiving journey. We've designed our platform specifically for families navigating this path—providing education, resources, and connection to professional caregivers who understand the nuances of dementia care.

Rather than treating diagnosis as an endpoint, we view it as the beginning of proactive planning. Our resources guide you through legal planning, finding the right care options, and accessing support when you need it most. Whether you're the person newly diagnosed or a family member stepping into a caregiving role, Careyaya connects you with vetted professionals and a community of others walking the same path.

Take Action Today

A dementia diagnosis is not a death sentence, it's a call to action. You have more agency and options than you might think. By taking these steps now, you're honoring your autonomy, protecting your interests, and ensuring that your wishes will be respected throughout your care journey.

For more information and resources, visit the Alzheimers.gov website for information and resources on Alzheimer's and related dementias from across the federal government or contact the National Institute on Aging's Alzheimer's and related Dementias Education and Referral (ADEAR) Center at 800-438-4380.

Your next step? Schedule that doctor's appointment. Meet with an attorney. Call your family together for a planning conversation. Every action you take today strengthens your ability to live well with dementia.