After the diagnosis: the first 30 days

Hearing the words "you have dementia" can turn your world upside down. This is true whether the news is about you or someone you love. Many people leave the doctor's office with more questions than answers.

You do not have to solve everything at once. This page offers a calm plan for the first month. It covers feelings, telling family, a step-by-step checklist, help from Medicare's GUIDE program, and how to learn about research studies.

The feelings that come with the news

People react in many ways. Some feel fear, anger, sadness or a deep sense of loss. Some feel numb or deny the news. Others feel relief, because there is finally a name for what has been going wrong.⁴ All of these reactions are normal, and they can change from day to day.

A few things can help in the first weeks:⁴

• Give yourself time to take in the news. Most big decisions can wait a few days.
• Write your thoughts in a notebook. Talk with someone you trust.
• Keep doing the things you enjoy for as long as you can.
• Meet others in the same place. Early-stage support groups bring together people who were recently diagnosed.
• A counselor or faith leader can help you sort through your feelings.

Family members grieve too. It is normal to mourn the future you expected while the person is still here. See grieving someone still here.

If low mood, poor sleep or loss of interest lasts week after week, it may be depression or anxiety. Both are common and treatable, and the doctor can help.⁴ Read more about apathy and depression in dementia.

Telling family and friends

There is no single right time to share the news. Some people tell others right away. Others wait until they have had time to adjust. You may want to start with your closest family and friends and widen the circle later.⁵

Tips that many people find helpful:⁵

• Pick a quiet, private time when no one is rushed.
• Write down what you want to say and bring your notes.
• Explain what dementia is, and that it is a disease. It is no one's fault.
• Share what you plan to do next and how others can help.
• Expect different reactions. Some people may not believe it at first. Give them time.
• You do not have to cover everything in one talk. Keep the conversation going.
• Remind people that you are still you. Accepting help does not make you helpless.

With children and grandchildren, use simple, truthful words that fit their age. Tell them they can ask questions any time. It is fine to have the talk in the language your family knows best.

If the person with dementia does not believe they are ill, this may be part of the disease, not stubbornness. See when the person doesn't know they are ill.

A first-month checklist

You do not need to finish this list in 30 days. Use it as a guide and go at your own pace.

Week 1: Learn and ask

1. Write down your questions for the doctor. Ask what type of dementia it is, what stage it is in, how it may change, which treatments may help, and whether clinical trials are an option.⁴
2. Get a copy of the test results and keep them in one folder or a memory notebook.
3. Call the Alzheimer's Association 24/7 Helpline at 800-272-3900. It is free and can help with any type of dementia, not just Alzheimer's.⁴
4. Learn about the diagnosis. Start with types of dementia and early-stage dementia.

Week 2: Make a care plan

1. Book a care planning visit. Ask the doctor for a cognitive assessment and care plan visit. Medicare covers this (see below).³
2. Review all medicines with the doctor or pharmacist, including over-the-counter pills and supplements. Some can make memory worse. See medicines that can worsen memory. Do not stop or change any medicine on your own.
3. Ask about treatment. Ask whether memory medicines or, for early Alzheimer's, anti-amyloid treatments might fit. See dementia medicines.
4. Choose a care partner to come to visits. A second person helps you listen and ask questions.³

Weeks 3 and 4: Plan ahead and get support

1. Start legal papers. Name someone to make money decisions and someone to make health decisions if you cannot. See below.⁶
2. Gather money records. List bank accounts, bills, insurance, pensions and passwords in a safe place.
3. Talk about driving and home safety. See below.⁸
4. Ask about GUIDE and other support programs.^1,3
5. Join a support group in person, by phone or online.⁴
6. Keep up healthy habits. Stay active and social, sleep well, and keep up care for blood pressure, hearing and vision. See staying mentally and socially active.

The Medicare care planning visit

Medicare Part B covers a separate visit to fully check memory and thinking, confirm the diagnosis and make a care plan.³ It is different from a regular check-up. Doctors may call it a "cognitive assessment and care plan" visit. You can read more on the first doctor visit about memory.

During the visit, the provider may do an exam and review your health history and medicines. They may ask who helps you now, make a plan to manage symptoms, and help with an advance care plan. They can also refer you to a specialist and tell you about local help, such as adult day programs and support groups.³

After you meet the Part B deductible, you usually pay 20% of the Medicare-approved amount.³ Ask the office about your cost before the visit.

Medicare's GUIDE program

GUIDE stands for Guiding an Improved Dementia Experience. It is a Medicare test program that began on July 1, 2024 and is planned to run for eight years.¹ Approved dementia care programs across the country take part. As of August 2026, CMS listed 292 participants.¹

What GUIDE offers:^1,2

• A care navigator, a trained person who helps you find medical care and local services
• A 24/7 support line for urgent questions
• Training and support for the family caregiver
• Respite care (short breaks for the caregiver) worth up to $2,500 per person each year, adjusted for inflation
• Checks for needs like food, housing or transportation, with links to help

Cost: GUIDE programs may not charge you anything for GUIDE services, including respite.²

Who may qualify:²

Taking dementia medicines does not keep you out of GUIDE.² Joining is your choice, and you can leave at any time. Your regular Medicare benefits stay the same.²

How to find a program: Ask your doctor whether they take part in GUIDE.³ CMS also posts a list of GUIDE programs and the areas they serve on its website. You can call 1-800-MEDICARE (1-800-633-4227) with questions.^1,2 A program will set up a full assessment, in person or by video, and then confirm whether you are enrolled.²

Other support programs

• Alzheimer's Association. The 24/7 Helpline (800-272-3900) gives information and emotional support. Local chapters run support groups and classes, and ALZConnected is a free online community.⁴
• Eldercare Locator. This free federal service connects you with your local Area Agency on Aging and services like meals, rides and in-home help. Call 1-800-677-1116.⁹
• Adult day programs and respite. These give the person a safe, social place to spend the day and give caregivers a break. See adult day care and respite care.
• Younger people. If the person is under 65 and still working, Social Security may speed up disability claims. Young-onset Alzheimer's, frontotemporal dementia, primary progressive aphasia and mixed dementias are on its Compassionate Allowances list.¹⁰ See Social Security disability for young-onset dementia.
• Veterans. See VA benefits for dementia.

Clinical trials

Research studies test new ways to diagnose, treat, care for and prevent dementia. Joining a study is always your choice.

The Alzheimer's Association runs a free matching service called TrialMatch. You answer about 10 basic questions, and it shows studies that may fit. Your details stay private unless you choose to share them with a study team. People living with dementia, people with mild memory problems, caregivers and healthy volunteers can all use it. You can also call 800-272-3900 for help.⁷

Before joining, ask what the study involves, what the risks are, and whether you can leave at any time. Our page on joining a dementia clinical trial explains how studies work and what to ask.

Legal and money planning

Plan early, while the person living with dementia can still understand and sign legal papers. Signing these papers does not take away anyone's rights right away. They are used only when the person can no longer make decisions.⁶

Key papers to think about:⁶

• Durable power of attorney for money and property. "Durable" means it stays in force if the person loses the ability to decide. See power of attorney.
• Health care power of attorney to name a health care agent. Talk with this person about your wishes early and often.
• Living will and other advance directives, which say what care you want near the end of life.
• A will and, for some people, a living trust. See wills and trusts.

Planning ahead can often avoid the need for a court to appoint a guardian later.⁶ Many people can fill out advance directives with free state forms. For more complex needs, an elder law attorney can help.⁶ It is also wise to watch for scams and financial abuse.

Driving and safety

A diagnosis does not always mean a person must stop driving right away. But dementia makes complex tasks like driving harder over time, even early on.⁸

• Talk about driving early, while the person can help decide how to handle it.⁸
• Ask the doctor about a driving test with an occupational therapist who is a driving specialist.⁸
• Watch for warning signs, such as getting lost on familiar roads, missing traffic signs, drifting between lanes or getting angry while driving.⁸
• Plan other ways to get around before the keys are given up.⁸

Read more about driving and dementia, making the home safer and wandering.

For the care partner

You matter too. Protect your sleep, see your own doctor, and accept help. A care circle can share tasks among family and friends. See caregiver stress and burnout and caregiver training and support programs.

Questions to ask the doctor

About the diagnosis

• What type of dementia is it, and what stage is it in?
• What other tests, if any, do we still need?
• How might it change over the next year?
• Should we see a specialist? See which specialist to see.

About treatment and care

• Which medicines might help? Are any of my current medicines a problem?
• Can we schedule a care planning visit?
• Do you take part in the GUIDE program?
• Are there clinical trials I might join?

About daily life

• Is it safe to keep driving? Should I have a driving test?
• Can I keep working, cooking and handling money on my own?
• Who do we call with questions between visits?

When to get help

• Call 911 for sudden confusion, a fall with injury, signs of a stroke, or any danger to life.
• Call or text 988 if anyone is thinking about suicide or feels in crisis.
• Call the doctor soon if memory or behavior changes quickly over days. Sudden change is not typical of dementia and may be another illness, like an infection or a medicine side effect. See treatable conditions that look like dementia.
• Call the Alzheimer's Association Helpline (800-272-3900) any time you need information or someone to talk to.⁴

Education only. This page is general information written from the sources listed. It is not medical, legal or financial advice and does not replace a doctor, therapist or lawyer who knows your situation. How we write and check pages.