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You have dementia... what now?

You’ve just been diagnosed

Hearing that you have dementia can bring up all kinds of difficult emotions. It can be a confusing and worrying time with many thoughts about the changes a diagnosis might bring, including things you might have to do.

That’s why it’s very common to experience a mix of things – including feeling numb – as you try to make sense of the news and figure out what to do next.

It’s OK to feel whatever you’re feeling, and you’re not alone. Here are some of the common emotions you might be feeling.

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When you’re first diagnosed with dementia, you might feel:

  • Angry – your life will be taking a different course to that which you’d planned. This sense of a lack of control over your future can make you feel angry.

  • Resentful – with anger often comes resentment. Some people wonder if they did something wrong, or can’t understand why it’s happening to them and not others.

  • A sense of loss – many people mourn the life that they’d planned. Diagnosis of any illness brings change and it can take time to come to terms with the loss of the future you might have had.

  • Relieved – you may have sensed something wasn’t quite right, but were unsure or have spent a lot of time second-guessing yourself. Sometimes naming an issue and getting certainty can be helpful. 

  • Afraid – it’s totally normal to feel scared about uncertain life changes and how the disease will affect you and your loved ones. That’s why connecting who understand is so useful.

  • Lonely – you might feel you want to keep the news to yourself, or that others will be upset to hear it or that they won’t understand. This will only make you feel alone. It’s important to share with others.

  • Sad – some people feel very low or depressed when they’re diagnosed and worried or hopeless about life changes.

  • In denial – it’s common to not want to face up to a dementia diagnosis. It can feel very overwhelming.

Here’s what can help:

  • Take time to acknowledge and accept your feelings – there’s no right or wrong way to feel.

  • Continue doing the things you love for as long as you can – don’t feel the need to stop activities that make you happy.

  • Write down how you’re feeling – it can help you work out your emotions.

  • Share how you’re feeling with loved ones.

  • Join an early-stage support group. You can find a group in your area here