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: Recognize that you are going through a variety of emotions
You may respond to the news of the diagnosis and the changes caused by the disease with a variety of emotions.
- You might feel angry, embarrassed, frustrated, afraid or sad. These emotions are normal and may come and go.
- Let those close to you know how you are feeling. Members of your family may also be experiencing the same types of emotions.
- If your feelings are overwhelming and won't go away, talk to your doctor.
Step 2: Tell people
Let the people closest to you know that you are living with dementia.
- Explain what your type of dementia is – whether it's Alzheimer's disease (the most common type) or a different type of dementia – and how it's affecting you.
- Sharing this information will help them understand that the difficulties you are having are a result of the disease.
- Sharing this information will also allow you to tell them how they might be able to support you.
Step 3: Learn about dementia
Find out what you can about the disease and how it will progress.
- Get answers to common questions people have about dementia.
- Learn about tips and strategies that can help you in your day-to-day life.
- The Alzheimer Society has many useful resources to help you learn more about dementia, both online and in person.
Step 4: Explore treatment options
While there is no cure for dementia, medications can help some people with some of the symptoms.
- Read about the treatments that are available. Discuss their risks and benefits with your doctor to know whether they are right for you.
- You may wish to participate in a research study on possible therapies and treatments.
- Your local Alzheimer Society will have information on treatment options and research studies in your area.
Step 5: Recognize that you have a disease that affects your abilities
Focus on what you can do, not what you can't do and find ways that help you cope with the changes.
- Know what to expect as your dementia progresses from the early to later stages.
- Get answers to difficult decisions, like whether or not you should stop driving.
- Simplify your life whenever you can. Routines and reminders can help.
6. Seek help
We can help. Getting in touch with the Alzheimer Society will connect you to people who can help you and give practical tips and advice.
- Your local Alzheimer Society runs programs and services like First Link® that are focused on helping you live well with dementia.
- We also provide education and resources about dementia to help you learn independently.
- We can also connect you to people and organizations in your community that can offer practical assistance with shopping, preparing meals and other needs.
7. Look for support
There are other people who know what you're going through. Find people you are comfortable with to share your feelings and emotions.
- They may be a member of your family, a good friend, another person with dementia 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.
8. Plan for the future
Start planning for the future now and take charge of your dementia.
- If you are working, it's important to prepare for your future retirement.
- If you own a business, you will need to make plans for when you can no longer do things on your own.
- Ensure that you have chosen someone to make financial and healthcare decisions for you when you are unable to do so.
9. Take care of yourself
Healthy living will help you live well with dementia for as long as possible, slowing the progression of the disease into the later stages.
- Maintain your physical health, stay active, make healthy food choices and spend time with your family and friends.
- Enjoy life to the fullest. Focus on what you can still do. Do the things you enjoy and that bring you meaning and fulfillment.
- Some days may be better than others, but strive to create those times each day that are satisfying and worthwhile.
10. Know the Alzheimer Society is here to help
The Alzheimer Society can help you in many different ways.
- We have resources that can help you learn more about the type of dementia you have, as well as how to manage the progressive changes in your abilities.
- We provide support that works best for your needs – whether by telephone, online or through individual or group support.
- We can locate other services in your community that can provide you with further help and support.
If you are newly diagnosed with dementia, our First Link® program can connect you to the help you need as soon as possible — learn more about First Link®.
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.