After receiving a dementia diagnosis

Being told you have dementia

You have the right to be told you have dementia, rather than this being kept from you. If you want to know your diagnosis, you will be offered a meeting with the specialist to discuss this. You can go to this meeting on your own, but it can be helpful to bring someone you trust with you.

If you are given a dementia diagnosis, the doctor should:

• tell you the details of your diagnosis sensitively but honestly
• explain what options there are for support and treatment (including medicines, activities and therapies)
• talk about how dementia is likely to progress and what to expect in the future.

It is important that you understand the language being used by the doctor. If they are speaking too fast, or giving you too much or complicated information, you can ask them to slow down or explain things differently. If you are unsure about any part of your diagnosis, you can ask them to explain again or make it clearer to you.

After being diagnosed with dementia

If you do receive a diagnosis of dementia, you may struggle to take in everything that is said.

It can be a lot to deal with all at once and you may be feeling upset or anxious. You may also be given information to take away that can be quite difficult to understand. Remember that you don’t have to read this immediately. 

You have plenty of time after the meeting to read any leaflets or booklets that you’ve been given or that you find online to help you understand more about what it means to have dementia.

You will have had to go through a lot of tests and waiting to get your diagnosis, so you may feel relieved that you now have an explanation for your symptoms. However you feel, it’s natural and it is okay to give yourself time to process your feelings.

Talking to others

You're not alone. There are lots of ways to connect with people who understand what you’re going through. You could try:

• finding a support group – where you can talk to others with a similar experience
• joining an online community (for example, Alzheimer’s Society’s Talking Point)
• talking with a dementia support worker or dementia adviser
• seeing a qualified counsellor or psychotherapist.

Adjusting to your dementia diagnosis

There’s a lot for you to process with a new diagnosis. Once you feel ready, our information can help you adjust to living with your condition. 

The dementia guide is for anyone who has recently been told they have dementia. It will help you understand more about dementia and the treatments, support and services that are available.

It includes information about how you can live as well as possible with dementia and about making plans for the future. It also contains helpful information for anyone taking on a caring role.

My Life, My Goals is a self-help guide for people in the early stages of dementia. It can help you feel more confident and in control by walking you through how to set meaningful goals that matter to you.

How we can support you

Call our support line for advice, or connect with people in similar situations through our online community