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Children’s privacy notice

  • Publication date: 3rd June 2024

This is our privacy notice for children and young people who use our Children and Young People Consultant Admiral Nurse Service. It tells you how we use your personal information when you or someone else gives it to us.

This service offers support to 11- 17-year-olds. If you are aged 15 and under, you will need your parent or guardian to share information with Dementia UK on your behalf.

Please ask an adult you trust to read Dementia UK’s full privacy notice on our website for more information.

Who are we?

We are Dementia UK. We support families who are affected by dementia. We have a special service for children and young people who know someone who has dementia – this person could be your grandparent, parent, aunt, uncle, a family friend or a neighbour.

If you know someone who is living with dementia, you can talk to a specialist nurse by phone, video call or email – whatever suits you best. You can ask any questions about dementia and how it is affecting your family. And you can talk about ways to look after yourself. Sometimes it is good to talk to someone who understands.

Personal data? What is that?

Your ‘personal data’ is anything that could identify you – for example your name or photo, address, email address, phone number or the name of your school.

There are some types of data that we have to be extra careful with, known as ‘special category data’. This could be something like your religion or an illness you have.

Dementia UK uses a lot of personal data. If you want to read the full list, it’s in our privacy notice for adults.

Why do we need your personal data?

The main reason we need to use your personal data is to know who you are. It also helps us make sure we give you the support you need.

If we don’t have your personal data it could mean you miss out on the things we can do for you.

When you or an adult calls our Helpline and speaks to a nurse, we will record the call. This means we can listen to the call again if we need to check something.

So, can we use your personal data for anything?

No. Just because we have your personal data, it doesn’t mean we can do what we want with it. We have to follow some rules.

Sometimes we need to tell you more about what we’re doing with your personal data.

Sometimes we have to ask you if we can use it, and if you say ‘no ’ then we can’t.

Sometimes we have to use your personal data to do our work – for example, to make sure you get the help you need. There are rules that mean we can do this without asking you first.

Can anyone else see your personal data?

To do our work we might have to share your personal data, or other people might share it with us. We’re very careful about how we do this. There are extra rules that we have to follow.

We might need to share your data with your family if they are helping you. Or we might share it with other professionals who could help you and your family.

We keep a lot of data on a database called Compass. Lots of people who work for Dementia UK use Compass, but we always make sure that they know all our rules first. Only people who are helping you will look at your data.

Sometimes we need help from other companies to do our work. These companies might use your data to help us, but they have to keep it safe. These companies may be based in another country, but don’t worry – we make sure they follow our rules about what to do with your data.

Do we keep your personal data forever?

We only keep your personal data for as long as we need it. Sometimes this might be for up to eight years.

Do I have a say in what happens to my personal data?

Yes you do. You have rights when we use your data. One of these is the right to know what we do with it. That’s what this page is for.

You can ask us to tell you what personal data we have about you. And you can ask us to stop using it or delete it. If your personal data is wrong, you can tell us and we will fix it.

The rights you have depend on what we use your data for, and there is more information in our privacy notice for adults.

Who makes sure we follow all the rules?

Dementia UK has a Data Protection Officer whose job is to protect your information. They make sure we are following all the rules to keep your data safe. If they see something wrong, they tell us how we can fix it.

You can email or write a letter to our Data Protection Officer if you have any questions or worries about what we do with your data.

Or write to:
Data Protection Officer
Dementia UK
7th Floor
One Aldgate

If you want to speak to someone else about how Dementia UK uses your data, there is an organisation called the Information Commissioner’s Office (ICO). Its job is to make sure we follow the rules and make sure we fix anything that we do wrong. You can also call, email, or write to the ICO if you have any worries about what we are doing with your data :

Information Commissioner’s Office
Wycliffe House
Water Lane
ICO helpline number: 0303 123 1113
ICO website: