Advice

What if you have dementia and it feels like people aren’t really listening to you?

We all need to feel heard. It helps us feel safe, connected and valued. It also supports our sense of who we are.

That doesn’t change with a dementia diagnosis. If someone isn’t listening to you, it can lead to your needs not being understood or met properly.

Not feeling heard or respected could make you feel like you don’t matter. It may affect your confidence. You might feel like you don’t have control over your life or what happens to you.

This can bring up difficult emotions, such as anxiety, fear, panic, sadness, grief, frustration and anger. It can also affect your relationships.

Do activities to stay calm and confident

If you start feeling difficult emotions, try to do something that calms you and brings you peace.

For some people, this could be meditation or listening to music. For others, it’s gardening or going for a walk. What could work for you?

Keep doing things that help you feel confident and relaxed. Perhaps you need to adapt how you do these as time goes on. That’s OK – the important thing is to still do things that you enjoy.

Keep talking about how you feel

Tell people how you feel and try not to become isolated.

Even with the best intentions, people can sometimes take over or assume they know what’s best.

Maybe they’re struggling to adapt to the situation, and they’re trying to help in the only way they know how.

You’re not responsible for how others treat you. But tell people what you need from them, and how important it is that you feel heard by them.

Your tips for when you don't feel heard

David Joseph says, ‘I have experienced people not listening to me or overlooking something I’ve said, or acting as if I’ve said nothing.

It makes me want to ask them, “Have you not heard what I’ve said, or do you just not understand my meaning? Or do you just not care?”

‘I write down my feelings and thoughts, what it’s like emotionally, in simple, direct words of description and explanation.

‘When the hurt feelings subside, I use what I’ve written in prose to write a short poem. This relieves my bad feelings and gives me something creative to do – a win-win!

‘Later, it helps me to put it into spoken language. This started two years ago, when I wrote an emotional poem describing my first experience of having been diagnosed with this horrible disease.’

Jennifer Bute says, ‘A cup of tea always sorts me out and everyone in my community knows that. Any signs of distress, even if mild, and a cup of tea arrives. Often, we have a good laugh about it, but I am very grateful.

I would want the person upsetting me to know that they were upsetting me. Then I would want to help them understand why and learn from it to do better next time, and toward others.

‘It would be good if someone else around them who understands could intervene by showing a better way of responding – hoping to instruct by example but, if necessary, actually saying something to explain.’