Telling family & friends

I was shocked and saddened when Dave told me he had young onset dementia.  Major illnesses are something that happen to other people, not good friends.  But I wasn’t worried it would change our relationship.  Our friendship is stronger than an illness.

- David

If you, or someone close to you, receives a young onset dementia diagnosis, consider who you tell about it and when.  You may find it difficult to talk about the diagnosis, particularly at the start.  It can be very useful to tell those closest to you early on so that they understand the changes they may see and can offer support. 

Plan how to share a diagnosis

It is a good idea to think through who you want to tell and the best time and place to do it.  Dementia will impact on your family and friends in different ways so it can help to think about this before you start a conversation about the diagnosis.  It is sensible to expect a range of reactions - sadly, not all of them will be supportive.  Some people may need some time to think about what you have told them and young children may need particular reassurance.

  • Try to prepare in advance for the specific questions each person might ask - questions are likely to vary depending on what relation they are to you eg child, parent, partner, friend.
  • Making notes for yourself about what you want to say or asking someone close to you to do this for you might be helpful.
  • Choose a quiet setting where you are able to concentrate on what you want to tell them.
  • If you can, try to give just one piece of information at a time.
  • If possible, make sure the person you are telling has someone who can support them, either at the time, or when they get home.

Your friends and family are going to be concerned about you and about your relationship together and how that may be affected in the future.  It generally helps not to overload people with too much detail initially, they can always ask more questions at a later date.  It might also be a good time for you to share what help you think you will want and need, and how friends and family can best support you.  When the time is right, you may find it helpful to tell your neighbours as they may be able to offer assistance if needed when family and friends are not close by.  

If someone you are close to is diagnosed with dementia, you will want to share the diagnosis with people too.  Many people are unaware that you can be diagnosed with dementia as a younger person, and it can be difficult to explain the impact of young onset dementia to others.  It is important that you also get the support you need and have time to take in the changes that will occur to your relationships and life.

YoungDementia UK has created a short film titled Adapt – Who & how to tell which features people affected by young onset dementia discussing how they shared the news of their diagnosis with family and friends.  They talk about how people reacted to the news and share advice for others in a similar situation.  You can watch the film below. 

Kate Swaffer has written a piece for our website about the impact of her young onset dementia diagnosis on her husband and family.  You can read it here

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