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How do I tell the people I love that I have dementia?

You might feel anxious sharing your news with family, especially younger members. Here’s how to talk to those close to you…

Many people feel uncomfortable at the thought of sharing the news of their dementia diagnosis with others. You might find the idea of talking to loved ones difficult – especially when it comes to grandchildren and younger family members. You might also be struggling to come to terms with the news yourself, so telling others feels hard.

But finding out you are living with dementia is an opportunity to connect with loved ones in a meaningful way. It’s also a time to actively make plans to stay connected in the future. By sharing the news with people you love (and who love and care for you) you are sharing the load. And in the longer term it means you’ll be more able to adapt to any changes.

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Here’s why you should share the news with loved ones, and what to expect:

  • Telling those close to you that you’re living with dementia is important because your diagnosis news is likely to affect them, too. You might need them for support or they may have to be your main carer, which means a change in identity for both of you as your roles in each other’s lives changes.

  • Talk to loved ones as soon as you feel able. A problem shared is a problem halved and talking honestly about your emotions surrounding your diagnosis is helpful. Don’t bottle things up. Talking helps everyone.

  • You probably felt a range of emotions when you got your diagnosis – and it’s likely that others will experience a mix of feelings, too. Their reaction will depend on their personality type and experiences of others with dementia. It’s normal to feel shocked, sad, angry and afraid. However, if you’ve been experiencing unexplained symptoms or difficulties, they might also feel relieved to know what’s going on.

  • It can take time for you to accept your dementia diagnosis – and it might take time for your loved ones, too. Be patient with each other.

  • If you’re struggling to accept your diagnosis and don’t feel able to find the words to tell others, ask your GP or social worker about seeking help from a counsellor or dementia advisor. You can also get advice by calling the Alzheimer’s Society helpline on 0333 150 3456 or Dementia UK on 0800 888 6678 where you can speak to an Admiral Nurse dementia specialist.

Talking to children about dementia

Talking to a child or young person about dementia can feel like a stumbling block or hurdle. Finding the right words, being worried you’ll say the wrong thing or feeling concerned that a youngster may not understand or will feel scared are typical concerns. 

If that young person is a grandchild, sharing the news that you’re living with dementia might feel doubly hard. 

But it’s important that you’re open and honest with children and young people. They might already sense that things have changed or that something isn’t quite right or they might pick up on family tensions. Keeping the news from them will cause them to worry. Children often think that any issues or problems they’re sensing in the family are caused by them, so by being honest, you’ll be putting their mind at rest.

How to tell a young person you have dementia

  • Tell the young person yourself that you are living with dementia and what this means for you, if you’re able to. Ask someone who’s close to both of you to be there for support.

  • Be open and honest. Acknowledge that things may have seemed different lately and explain why. Describe what dementia is in clear language and explain how it’s currently affecting you. 

  • Reassure the young person and answer any questions they might have as best you can. Be patient, and allow them space to talk.

  • Listen carefully to what they have to say, without speaking over them, or telling them that their feelings, worries and concerns are silly or not valid. Let them know that they won’t be judged for how they’re feeling.

  • Let them know that they can speak to you or their parent/guardian any time.

  • Look up other resources that might help. Dementia UK has a YouTube channel and it might help you to watch some of their videos together so you (or their trusted adult) can answer any questions they might have

  • You’ll find more tips about speaking to young people about dementia on our Conversations forum

Explaining dementia to younger children

The Alzheimer’s Society has a list of books aimed at younger children that can help them to understand what is happening to you. You can find out more here

For children aged 5 to 9 years old you can try watching a cartoon with them, such as The Dragon Story, that might help them understand more about dementia. Watch for ideas on the best language to use for this age group

If a youngster needs further support

You can find further resources for young people who might need support with the news of your diagnosis via the website Dementia In My Family – it aims to explain dementia to youngsters from toddler to 16 in an age-appropriate way.

If a young person is struggling to come to terms with your news, Young Minds can help. Visit youngminds.org.uk for information or let the youngster know that Child Line who can offer a non-judgemental listening ear on 0800 1111.