Telling people about your dementia

Sharing news that you have Alzheimer’s disease or another form of dementia can seem a scary prospect, but being open about it will make life easier. Here’s how to approach the subject…

Discovering that you have dementia can be difficult news for anyone to take in, and the prospect of breaking the news to your friends and family may seem like a daunting task. However, the sooner you tell those closest to you what’s going on, the sooner you can start to get the support you need to continue living well.

Why should I tell people about a dementia diagnosis?

Whether you've been diagnosed yourself or someone close to you has been diagnosed with dementia, you might be unsure about how to let other members of your family know. In the past, dementia was not something people liked to talk about. But as the number of people living with it rises, and general awareness of the condition increases, the stigma is beginning to lift. All evidence now suggests that telling people will make the journey for you and the person suffering dementia much easier.

When should I tell people about my diagnosis?

There is no right or wrong way in which to tell people, nor a right time. You may wish to wait a few weeks for the news to sink in and for you to get used to it, before letting other people know. If it’s you that’s had the diagnosis, you’ll probably want to let your partner or children know what’s going on. But there’s no need to tell other people straight away.

How should I share the news of my diagnosis?

1. Find somewhere quiet and relaxed
2. Go slowly
3. Come with information or notes
4. Expect different reactions
5. Let people help

Once you’ve got used to the idea, find a time where you can have a quiet, undisturbed chat with your friends and explain the situation in a clear and relaxed manner. They’ll probably have lots of questions at this stage, so it’s worth finding out about your particular type of dementia for more information on your condition.

You could also talk to your doctor about the best way to explain the condition, particularly the rate at which you or your family member may decline. Expect different reactions from people – some may not want to accept the news at first and be in denial, while others will want to help.

Give people time if it’s the former – different people have different reactions and it can take time to get your head round it. If people are keen to help, let them know that you’ll call on them when you need them. Letting people help will be key to managing your condition.

Remember, you don’t have to tell everyone you meet about your diagnosis. Just mention it to those you feel most comfortable sharing it with.

Who do you HAVE to tell?

- You need to inform the DVLA (Driver & Vehicle Licensing Agency) after a diagnosis, although this won’t always mean that you have to stop driving. You’ll also need to inform your car insurance provider.

- In some work places there is a legal requirement for you to tell your employer about your dementia diagnosis. However, this isn’t the case for everywhere so it’s worth checking your contract.