Privacy policy


 Dementia UK is committed to protecting and respecting your privacy.

 Whenever you share personal data with us we aim to be clear with you and not to do anything that you would not reasonably expect us to do. We will always endeavour to tell you when we are collecting data from you and in this document we describe what we will and will not do with your personal information.

We have set this out in seven sections:

  1. The type of personal information we collect
  2. How we use your information
  3. How we collect your information
  4. How we share your information
  5. How we keep your data safe and who has access to it
  6. Accessing and updating of your information
  7. Changes to this Policy

Please note that this Privacy Policy applies to all Dementia UK’s activities and our website, (the ‘Website’). By continuing to use this Website or engaging with us you are agreeing to the processing of your personal information in accordance with this privacy policy.

1. The type of personal information we collect

We receive personal information about you in a number of ways:

(a) Personal information you provide to us

We receive personal information from you when you ask about our activities, order products and services from us (such as publications and email newsletters),use our services,  make a donation to us, fundraise on our behalf, or otherwise give us personal information.

The type of personal information we collect will therefore depend on the reason why you are engaging with us. It may include information such as your name, date of birth, email address, postal address, telephone number and credit/debit card details.

Sometimes it may be appropriate for us to ask for information about your health or personal circumstances (for example, when requesting information about our services or if you wish to take part in a high risk event). We will only do this when we need to.

Occasionally, it may be useful for us to find out why you are supporting us as this helps us understand the benefits of our work.  You do not have to answer this question and we only want you to answer if you are happy doing so.

(b) Personal information provided to us by third parties

Sometimes, we receive personal information about you when you engage with other organisations. Details of information about this is set out in the section ‘How we collect your information’. When this happens we will treat the information in the same way as if you had shared it directly with us.

(c) Extra personal information we generate – analysis of your personal information

From time to time we may keep your records up-to-date and add information to them by checking against external publically available information. For example, we might use an external service to find your new address. We may also research information about you, either from publically available information or from information that we have already collected from you. We do this so we can operate efficiently and to ensure you receive information that is relevant to you and the purposes for which you have shared your personal information.

2. How we use your information

We will use your personal information primarily to:

  • Administer any donation from you or support your fundraising efforts, including the claim of Gift Aid on your donations (as requested by HMRC)
  • Thank you
  • Record your involvement with us
  • Let you know about changes to our services or policies
  • Provide any information you have requested from us, and direct you to any services that may be relevant
  • Manage your preferences for hearing from us
  • Send you communications about our work and how you can help us, for example, information about our fundraising activities, volunteering and campaigns

You can let us know if you would prefer not to receive these communications at any time by contacting our Supporter Care team on 0300 365 5500, emailing or writing to Supporter Care, Dementia UK, 2nd Floor, 356 Holloway Road, London N7 6PA

  • Investigate and respond to complaints, legal claims or other issues
  • To detect and reduce fraud and credit

We also monitor electronic communications and use of our Website. You can find out more about how we use information about the communications devices you use, such as IP address (the location of the computer on the internet) and cookies, in the section ‘How we use cookies’ and in our Cookie Policy which can be found at

2.1 Building profiles

We may also analyse the information we collect about you so that in certain cases we can build a profile and better understand you and target our communications to you appropriately, and with the most relevant information. For example, we may wish send you invitations to attend special events or to discuss specific fundraising projects. Where we use such profiles it enables us to cost-effectively and efficiently raise funds to support our work.

When building a profile we may analyse geographic, demographic and other information relating to you.   In doing this, we may use additional publicly available information about you, for example addresses, listed Directorships or typical earnings in a given area.

Occasionally, we may use your personal information for other purposes consistent with our charitable purposes, but we will notify you about this, and more importantly, obtain your consent.

2.2 Why we build profiles

We believe our collection and use of your personal information is necessary and in the charity’s best interests so that we engage with you in the most effective way, using our resources efficiently, and so that we may raise donations to support the beneficiaries of Dementia UK. In doing so, we do not consider that it will cause undue harm to your privacy.

We believe this because:

  • the personal information about you has either been provided by you, generated by your engagement with Dementia UK or is personal information that is publicly available from legitimate sources
  • we have made you aware of how we use your personal information and that we undertake this level of research at the point you first provided your personal information to us
  • we directed you to the further detail contained in this Privacy Policy should you wish to learn more about how we use your personal information
  • you will expect us to know information about your interests, preferences and the level of potential support you might provide to Dementia UK – in order that we make best use of your time and efforts in engaging with us
  • we aim to ensure you are informed that we have collected and used your personal information in this way and that you have access to a copy of the Privacy Policy at our first point of contact, in our first meeting, or otherwise in our first correspondence with you following our meeting.

However, please be assured that you can ask us to stop using information about you or processing your personal data in this way by contacting our Supporter Care team at any time by calling on 0300 365 5500, emailing or writing to Supporter Care, Dementia UK, 2nd Floor,  356 Holloway Road, London N7 6PA.  If we do not need to use the information for the purpose you shared it with us, we will stop using it.

3. How we collect your information

Your personal information may be shared with us in the following ways:

Direct collection:

  • you may give us your information when you sign up for one of our events, make a donation or communicate with
  • you may contact us through the Admiral Nurse Dementia Helpline, and to enable us to assist you in the best way possible we may ask you to provide certain information about yourself and/or the person who you are calling about. Any information that we collect and process will be held in line with the provisions of this Privacy Policy. Please see the section below headed ‘Information collected via the Admiral Nurse Dementia Helpline’.

Indirect collection:

  • your information may be shared with us by fundraising sites like JustGiving or Virgin Money Giving or by event organisers such the London These independent third parties will only do this when you have specified that you wish to support Dementia UK and with your clear consent. You should check their privacy policy when you provide your information to understand how they will process your data
  • your information may be shared with us via referrals from trustees, volunteers or staff members
  • your personal details may be available from public sources of personal information. Please see the sections above for more detail
  • your information may be shared with us from other online accounts. Depending on your settings or the privacy policies for other online services like Facebook or Twitter, you might give us permission to access information from those accounts or The information we get from those online services depends on your personal settings, and therefore it is recommended that you check them regularly.

4. Information collected via the Admiral Nurse Dementia Helpline: Helpline” for further information.

All the other provisions of this Privacy Policy apply in respect of information we obtain via the Admiral Nurse Dementia Helpline unless a contrary position is set out in this section.

When you contact Admiral Nurse Dementia Helpline (including by email) whether in respect of yourself or someone you care for, you may be required to provide personal information, some of which may be sensitive personal information. This could include names, details relating to the health of the relevant individual, medication for the individual and other health related information. We might also ask about the purpose of the call. You do not have to give us this information, but if you do so we will use it carefully.

Our Admiral Nurse Dementia Helpline is there to assist with the care of vulnerable individuals. As such we treat this sensitive information with the utmost confidence and respect and will not share this information with any third party. The information is stored on a database which can only be accessed by our registered nurses who are governed by the Nursing and Midwifery Council and their code of conduct and a small number of staff who help to administer the service. It is possible that any call to the Admiral Nurse Dementia Helpline may be recorded in order that we can monitor the quality of our service. Copies of all recorded calls will be retained, but only for as long as we consider necessary.

The information that you give to our dementia specialist registered nurses will only be used to:

  • provide advice in respect of the care of the relevant person (if you are calling about another person) or about your own health;
  • monitor any advice we have given you; and
  • to contact you in relation to any communications between us and any advice we have given you.

We may also share any information you provide to us with the relevant GP in circumstances where we are legally required to do so or if we consider it is in the best interests of the person living with dementia to do so.

We will also use some of the information to evaluate our Helpline and assess trends such as who is using it and the types of enquiry that are being made. However, all , information used in this way will be anonymised.

Whenever you contact the Admiral Nurse Dementia Helpline on behalf of another person, you must ensure that you have the right to share personal information with us relating to the individual. This will usually be the case if you are their primary carer or you have their express consent.

We will only hold the information provided via the Admiral Nurse Dementia Helpline for so long as it is necessary for the intended purposes or as is required by law.

5. How we share your information

We will not sell your details to any third parties, but we may sometimes share your information with our trusted service providers who are authorised to act on our behalf. For example when you indicate that you would like to receive information from us in the post or via email, we may provide your name and address or email address (as applicable) to a third party sub-contractor who will compile and send out the relevant mailings on our behalf. This third party will not use or process the information for any purpose other than compiling and sending out the relevant mailing. The information you receive will be information which you have agreed to receive from us and the third party will not contact you for any other purpose.

In addition, from time to time we may exchange your personal information with other organisations for the purposes of fraud and credit risk reduction. We may also share information with our financial and legal advisers for the purposes of obtaining advice and protecting our legal rights.

6. How we keep your data safe and who has access

Dementia UK is responsible for collecting your personal information. We use rigorous procedures and strict security features when we collect your personal information in order to prevent unauthorised access. However, no data transmission over the Internet is 100% secure and although we try to protect your personal information, Dementia UK cannot guarantee the security of any information you transmit to us and you do so at your own risk.

We have appropriate technical controls in place to protect your personal details (for example our online forms are always encrypted and our network is protected and routinely monitored).

Regular reviews are carried out to establish who has access to information that we hold. This ensures that your information is only accessible by appropriately trained staff, volunteers and contractors.

We may, in some limited circumstances, have an obligation to disclose your details to the police, regulatory bodies or legal advisors.

We will only ever share your data in other circumstances if we have your explicit and informed consent.

Where we store your personal data

The data that we collect from you may be transferred to, and stored at, a destination outside the European Economic Area (“EEA”). It may also be processed by staff operating outside the EEA who work on our behalf. Information which we collect will be stored on our secure services which are hosted in both the UK, EU, and in the United States of America. By submitting your personal data, you agree to this transfer, storing or processing.

External Links

The Dementia UK website may include links to other sites, not owned or managed by us. We cannot be held responsible for the privacy of information collected by websites not managed by us.

How do we use cookies?

The Dementia UK website, like most websites, uses cookies to give you a more personalised web service and to provide information to the owners of the site.

Cookies mean that a website will remember you. Cookies are small text files that sites transfer to your computer (or phone or tablet) to make interacting with a website faster and easier.

We use cookies on the website for our own internal purposes, to track how users navigate through the website and therefore how to improve our online services.

The information gathered from cookies help us to: review how our website is being used and therefore help us to improve our website and online services; simplify your ability to navigate through the website; personalise and improve the service offered to you by understanding your preferences and establishing which areas of the website are most relevant to you and know if the website is operating effectively.

In addition, the type of device you are using to access our website and the settings on that device may provide us with information about your device, including its type, what specific device you have, what operating system you use, the device settings, and why a crash may have happened. The operating system provider or the manufacturer of the device will have more details about what information your device makes available to us.

For more information please see our Cookie Policy which can be found at

Aged 16 or under

If you are aged 16 or under, you must get your parent/guardian’s permission before you provide any personal information on our Website.

7. Accessing and updating your personal information

We will use publically available information to update your details wherever possible. However, it is a great help to us if you are able to let us know if your details have changed.

You can request access to any information we hold about you by contacting us at Supporter Care, Dementia UK, 2nd Floor, 356 Holloway Road, London N7 6PA. If there are any discrepancies in the information we provide, please let us know and we will correct them.

If you wish to access your information, please send a description of the information you want and also send proof of your identity by post to the address above. Please note that we do not accept these requests by e-mail, but you can e-mail us at if you have any questions.

8. Changes to this policy

This policy is written in accordance with the Data Protection Act 1998 and describes how Dementia UK collects and uses personal information given directly or indirectly by people who engage with us and or visit our Website.

Dementia UK is registered under the Act as a Data Controller under number Z1250036. If you have any questions about the policy, please contact our Data Protection Officer at Dementia UK, 356 Holloway Road, London N7 6PA or email or call 020 7697 4160.

We may change this Privacy Policy from time to time so please check back periodically. If we were to make significant changes to the policy, we will highlight this clearly on the Website or we will contact you directly.