What to Do After a Dementia Diagnosis: 4 Important Steps

Recently, a client reached out to me after being newly diagnosed with dementia disease. He wanted to talk about what he could expect as the disease progressed. He had questions about the physical and emotional changes that might occur, but he also wanted to think ahead. What kind of care might he need in the future? What could he do now to prepare? And perhaps most importantly, how could he make the most of the time he has today?

If you have been newly diagnosed with dementia there are four areas I encourage you and your family to prioritize.

1. Talk It Out

A diagnosis can bring grief, fear, anger, uncertainty, and a lot of questions.

You do not have to process all of this alone.

Consider who can be part of your support system. This might include:

• Joining a support group

• Meeting with a therapist

• Talking with a trusted friend or family member

• Connecting with a spiritual advisor

• Finding a professional who can help you navigate the aging process

Sometimes simply having a safe place to say, “I’m scared,” or “I don’t know what to do next,” can make a tremendous difference.

2. Get Your Legal Documents in Order

If you have not already done so, this is an important time to review your legal and healthcare documents.

Depending on your circumstances, this may include:

• Financial Power of Attorney

• Durable Power of Attorney for Healthcare

• POLST, when appropriate

• Release of Information for healthcare providers or agencies

• Living Will or Advance Directive

• Trust or other estate planning documents

The goal is not to assume the worst. The goal is to make sure your wishes are known and that the people you trust are prepared to help if you are no longer able to make certain decisions yourself.

3. Build Your Healthcare Team

A diagnosis often comes with more questions than answers.

Bring your questions to your healthcare providers and make sure you understand as much as possible about your diagnosis.

Consider asking:

• What stage am I in?

• What changes might I experience?

• What can I expect over the next year?

• What might the progression look like?

• What treatments or resources are available?

• Who should I contact if new symptoms or concerns arise?

• What should my family know?

You do not have to remember everything your doctor tells you. Bring a notebook, write down your questions, or bring someone you trust to appointments.

Understanding what you are facing can help you make informed decisions about the future.

4. Live

This may be the most important one.

If you are currently feeling well, relatively mobile, and able to do the things you enjoy, ask yourself:

How do I want to spend the next 1–5 years?

Who do I want to spend that time with?

What experiences are important to me?

Maybe there is a trip you've been putting off. Maybe there are people you want to reconnect with. Maybe you want to spend more time with your grandchildren, sit by the ocean, work in your garden, attend your granddaughter's wedding, or simply enjoy your morning coffee with the people you love.

Planning for the future does not mean forgetting to live in the present.

Make this time count.

You Don't Have to Navigate This Alone

Whether you are living with a new diagnosis, supporting someone you love, or simply trying to better understand what comes next, having the right information and support can make a difference.

If you'd like to learn more or schedule a complimentary 15-minute consultation, I'd be honored to connect with you.