Adjusting to your diagnosis

Find out more about Creutzfeldt-Jakob disease

Support after a diagnosis is very important. If you have recently been diagnosed with dementia, this page is for you. It will help you, and your family and friends, to understand more about the condition and how it can affect you. It covers some of the feelings you might have and suggests ways of staying positive.

Remember that there is no ‘right’ or ‘wrong’ way to feel. However you feel, it is right for you, at this moment. And don’t worry if it all seems to be overwhelming at first. There are good and bad times, and with support many people come to terms with their diagnosis.

It may help to talk things over with friends and family, or with a health or social care professional who understands dementia.

Things you should try to think about after a diagnosis include:

  • emotions and relationships
  • treatments and ways to stay active and healthy
  • financial matters and planning ahead
  • your job – if you’re still working
  • driving
  • practical and emotional support – from the NHS, social services, private companies or voluntary organisations.

You won’t need to think about all these things straightaway, so take it at your own pace.

Managing your feelings

You may have a number of different feelings after a diagnosis. This is normal and there are ways to cope with them.

  • Many people feel a sense of sadness or loss after their diagnosis. You may feel that you will no longer be able to do the things that you enjoy or that you had planned. It is true that having dementia may mean you need to make changes. But with the right information and support, you can carry on with regular aspects of your life for some time.
  • Shock, disbelief and denial are all common reactions to a diagnosis of dementia. Sometimes this can be a good thing. It can give you the time you need to deal with your diagnosis.
  • Fear is another very common reaction. You may be afraid of the future, of losing control or of becoming a burden to your family. Talking about this with others can help. It is important not to feel that you are on your own.
  • Some people worry that they did something wrong to get dementia, or did not do enough to prevent it. In many cases it is not known why dementia develops. Don’t dwell on this. Instead try to keep going with a positive outlook.
  • A few people feel relief after a diagnosis. This may sound strange, but it can be better to have an explanation for the changes you have been experiencing, rather than worry about what else it could be. Once you have a diagnosis, you can deal with it and do something about it.

Talking to others

After a diagnosis, you may want to talk things over with other people. You might only want to do this with your partner, or with close family and friends. You may not want to talk about it at all.

Talking to others with a similar experience can help as well. You could try:

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

Changes to relationships

Dementia changes your relationships with people. You and the people close to you will have to adapt to new challenges. It’s important to be aware of this, talk about it as openly as you can, and look for solutions together.

Those close to you will need to offer you more support in daily life. In time they may become your ‘carer’.

Telling young children

If you have young children or grandchildren, it is a good idea to tell them about your dementia. We have some guidance on how to explain dementia to children and young people, helping you do so in a way that feels right for their age and ability to understand things. You might be surprised at how adaptable they are.

Find out more

After a diagnosis you may or may not feel like you want to read lots of dementia-related information. Both these feelings are natual, but know that information and support are avaialble whenever you're ready. 

Our 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.