What information you should receive after a dementia diagnosis
Being told that you or someone you care for has dementia can feel overwhelming. It is not always easy to take in everything that is said at appointments.
This page explains the key information you should be given after a diagnosis. You can use it as a guide to understand what support and explanations you should expect, and to help you ask questions if anything is unclear.
About this information
This advice is based on national guidance from the National Institute for Health and Care Excellence (NICE). NICE provides evidence based guidance for health and care services in England.
The guidance was first published in 2018 and was reviewed in 2025 to make sure it remains relevant.
1. Your diagnosis and what it means
You should be told which type of dementia you have and what this means for you. This should include an explanation of how the condition may affect memory, thinking, communication or daily life, and how it may change over time.
You should feel able to ask for information to be explained again or in a different way if it is not clear.
2. What treatments and support are available
You should be given information about any treatments, therapies or support that may help. This includes medicines, non medical support, and activities that may help you stay independent and well for as long as possible.
You should also be told about possible side effects and how treatments are reviewed.
3. Who will be involved in your care
You should know who to contact if you have questions or concerns. This may be a GP, memory service, specialist nurse or another professional.
You should be told who will help guide your care and how different services will work together to support you.
4. Support for carers, family and friends
Dementia can affect the people around you as well. Family members or carers should be told about support that is available to them, including information, training and emotional support.
They should also be told about carers assessments and their right to ask for help.
5. How dementia may affect daily life
You should be given clear information about how dementia may affect everyday activities. This may include driving, work, managing money, medication and living safely at home.
You should also be told where to get advice if you are unsure about any of these areas.
6. Planning ahead
You should be offered information about planning for the future. This may include advance care planning, lasting power of attorney and making decisions while you are able to.
These conversations can be difficult, but having information early can help you make choices that feel right for you.
7. Where to find further help and information
You should be given details of organisations that can offer advice and support, both locally and nationally. This may include charities, support groups and helplines.
You should also know where to go if you feel you have not been given the information or support you need.
If you did not receive this information
If you have not been given some of this information, or if anything is unclear, you can ask a health or care professional for further explanation.
You can also contact Healthwatch North Yorkshire for free, confidential advice. Whilst we can't give medical advice or a diagnosis, we can help you understand what support should be available and how to raise concerns if something is not right.
Read more
Take time to read the guide in full to get a better understanding of the support that is available to people with dementia, and their carers.
