First steps after diagnosis

What happens after diagnosis?

"When I finally received the diagnosis of probable frontotemporal dementia, I was like, 'OK, now we know. And now I can fight this thing.'" - Mary Beth (pictured above), from Ontario. Mary Beth lives with frontotemporal dementia.

Now that you've been diagnosed, what's next?

While receiving a diagnosis of dementia can be devastating, it may also bring a sense of relief. Now that you're able to put a name to the symptoms you've been experiencing, you can start finding dementia education and resources that are tailored to helping you.

Nevertheless, it can be hard to know what to do first. You likely have a lot of questions! Getting the information and support you need can help you take charge of your condition.

The Alzheimer Society is here to help. The steps outlined below are informed by the advice and shared experiences of other people who live with dementia. Know that, despite the effects of this serious disease, you can live well with dementia.

10 steps to start living well

Step 1: Call or email the Alzheimer Society’s First Link® service for free dementia help

The Alzheimer Society is here to help anyone in Canada who is facing the challenges of dementia. The Society can help by:

• Giving you information you need to learn more about dementia and coping strategies.
• Providing support by telephone or email, or through a support group.
• Locating services for you in your community.

Reach us at 1-855-705-4636 or info@alzheimer.ca for free support and referrals. Or learn more at alzheimer.ca/FirstLink.

Step 2: Recognize that you are going through a variety of emotions

You may respond to the news of the diagnosis and the changes caused by dementia with a variety of emotions. You might feel angry, embarrassed, frustrated, afraid or sad. These emotions and more are normal and may come and go.

Let those close to you know how you are feeling. Your family and friends may also be experiencing the same types of emotions. Sometimes, people with dementia feel sad or depressed. If your feelings are overwhelming and won’t go away, talk to your doctor.

Learn more about managing emotions and stress.

Step 3: Learn about dementia

Find out what you can about dementia and how it will progress. Learn about tips and strategies that might help you day to day. The Alzheimer Society has many useful resources to help people with dementia, such as our “Shared Experiences” booklet, our website (alzheimer.ca) and support groups.

Learn more about dementia.

Step 4: Tell people

If possible, let the people closest to you know that you are living with dementia. Explain what dementia is and how it is affecting you. Sharing this information will help them understand that the difficulties you are experiencing are a result of dementia. Sharing this information will also allow you to tell them how they might be able to support you.

Refer friends and family to your local Alzheimer Society for useful information and resources.

Learn more about talking about your diagnosis.

Step 5: Explore treatment options

While there is no cure for dementia, medications may help with managing some of the symptoms. Read about the treatments that are available. Discuss their risks and benefits with your doctor. You may wish to participate in a research study. Your local Alzheimer Society will have information on treatment options and research studies in your area.

Learn more about how to treat dementia.

Step 6: Focus on what you can do – and on what you enjoy doing

• Adapt your interests and abilities.
• Pursue a hobby you enjoy or listen to your favourite songs.
• Find ways that help you cope with the changes. For example, write down important things in a memory book, smartphone or tablet.
• Whenever possible, simplify your life.
• Following a routine may also be helpful.

Learn more about managing the changes in your abilities.

Step 7: Develop a support group

Find people you are comfortable with to share your feelings and emotions. It may be a member of your family, a good friend, another person with dementia, a therapist or an Alzheimer Society support group.

No matter who it is, the important thing is to share your experiences and how you are feeling. Some people also find it helpful to write their thoughts, feelings and experiences in a journal.

Find support groups near you.

Step 8: Plan for the future

Start planning now for the future:

• If you are working, it may be important to prepare for your future retirement. Also, if you are employed, you may want to discuss disability accommodation with your employer.
• If you own a business, you will need to make plans for when you can no longer do things on your own.
• If you have been putting off decisions about your personal life, make them now.
• Make sure your paperwork and important documents are in order, including legal and estate planning.
• Ensure that you have chosen someone to make financial and healthcare decisions for you when you are unable to do so. Talk to the person about your wishes and write them down. This will ensure that your requests are followed when you are unable to communicate them yourself.
• Talk to staff at your local Alzheimer Society for any relevant workshops or supports they might have on advance care planning, finances, work or other related topics.

Learn more about planning for your future.

Step 9: Consider getting involved in advocacy and/or research

The Alzheimer Society Advisory Group of People with Lived Experience helps direct our national strategies and policies. Visit alzheimer.ca/AdvisoryGroup for more details. Dementia Alliance International and Dementia Advocacy Canada are run by people living with dementia. These organizations (and more) offer contacts, learnings, connections and meaningful activity.

Research studies can help you access scientists, new drugs, therapies and peer connections. Participating can also help advance dementia research. Find a list of current studies seeking participants at alzheimer.ca/Find-Studies.

Step 10: Take care of yourself

Maintain your mental and physical health, stay active, make healthy food choices and spend time with your family and friends. Enjoy life to the fullest. Take your prescribed medications and attend all medical follow-up appointments. Try to maintain or improve your sleep, and talk with your health workers about that too.

Learn more about living well with dementia.

More useful links and resources

First steps. Alzheimer Society of Canada. This print-friendly, downloadable brochure lists ten steps that a recently diagnosed person can take that will help them manage the changes in their abilities and live well with dementia.

Note: This information was updated on September 9th, 2022