At Dementia UK, we promise to do our best to keep your personal information safe. This is our privacy notice, in which we tell you how we use and look after your personal information. This privacy notice tells you what to expect us to do with your personal information when you join our Lived Experience Advisory Panel (LEAP), or you are an individual or belong to a group that joins our Lived Experience Advisory Network (LEAN).
We will tell you what information we collect about you; how we use this data; with whom we share it; and how we store it and keep it safe.
If you would like a printed paper copy of this privacy notice, contact the Data Protection Officer by email at dataprotectionofficer@dementiauk.org, call 020 8194 2763 or write to us at:
Data Protection Officer
Dementia UK
7th Floor
One Aldgate
London
EC3N 1RE
We last updated this privacy notice in September 2024.
What are LEAP and LEAN?
Our Lived Experience Advisory Panel (LEAP) is a panel of people with dementia and carers who collaborate, advise, and inform on many aspects of our work.
Our Lived Experience Network (LEAN) is made up of individuals and groups of people living with dementia and carers from across the UK. We reach out to the network to gather knowledge, thoughts and ideas to support the work of Dementia UK.
There are six LEAP meetings each year; five are held virtually on the platform Zoom and one is held in person. Meetings are attended by LEAP members, guest speakers (usually someone who works for Dementia UK), and our Lived Experience Coordinator and Admiral Nurse Academy Coordinator.
What information do we collect?
Dementia UK will store and use the following information about you:
- name
- email address
- names of family members and/or carers
- name of any group you are part of which is a member of LEAN
- any other roles you hold at Dementia UK (e.g. Volunteer Ambassador)
- all email correspondence with Dementia UK staff members
Dementia UK may also store and use the following type of special category data, which is data that we store and use with particular care and sensitivity:
- dementia diagnosis of the person living with dementia
We will keep special category data confidential and only share with staff members other than the Lived Experience Coordinator with your permission.
How do we collect your information and why do we have it?
Dementia UK will ask for your name and email address when you express an interest in becoming a LEAP or LEAN member.
We may make a note of further information you give to our members of staff in conversation or by email, such as names of your family members; your or another person’s dementia diagnosis; your support network or other communities you are part of.
If you are a LEAP member, we use your email address to contact you at least once a month to offer opportunities to support and advise on the work of Dementia UK, and reminders of upcoming LEAP meetings.
How do we store your information? How long for?
Your personal information is stored in a secure, password protected location within the Dementia UK network. Your email correspondence with our Lived Experience Coordinator is stored in a Dementia UK email account.
Your personal information and email correspondence is kept for as long as you are a member of LEAP or LEAN. We delete your personal information and email correspondence within four weeks after you stop being a LEAP member.
Do we share your information?
We minimise the sharing of your data both with Dementia UK staff members and with external organisations. We share your data when we have a legal obligation to, when there is an administrative need, or when it is in Dementia UK’s legitimate interests to do so. We share your information on a ‘need-to-know’ basis. If the recipient does not need to have your information, we do not share it.
Our Lived Experience Coordinator will put you in touch with other Dementia UK staff members or other members of LEAP or LEAN when working together on a project or organising a meeting, sharing your name and email address. Our Lived Experience Coordinator sets up meetings via Zoom and Microsoft Teams.
Dementia UK will share your information with other organisations when we use an application run by that organisation. For example, we share your information with Microsoft when we use Microsoft Outlook or Microsoft Teams.
Dementia UK will also share your information outside of Dementia UK in the following circumstances:
- when there is a legal obligation, for example if we have a contractual arrangement to share data, or we need to report criminal acts to law enforcement
- if you or another person is at risk of serious harm, neglect, death, or threat to personal safety or wellbeing
In these circumstances Dementia UK will also share your information with other Dementia UK staff responsible for safeguarding, governance and compliance.
Do we transfer your information outside of the UK?
By joining a LEAP meeting you may give your personal information such as your name, email address or IP Address to Zoom. Zoom also stores the content of Zoom meetings. Zoom is based in the United States of America, which has different privacy laws to the UK. For more information, see Zoom’s privacy notice.
Dementia UK also stores and uses your personal information using Microsoft software. To support the delivery of its software, Microsoft stores data throughout the world. Microsoft has major data centres in the UK but may also store your data in the United States of America or in other countries. For more information, see this section of Microsoft’s privacy notice.
Lawful basis
To comply with UK data protection law, Dementia UK must have a lawful basis for using and storing your personal information.
In the table below, we share what personal information we use and store, explain how we use it, and indicate the lawful basis for its storage and use.
| Personal information | How we use it | Lawful basis |
| Name | Your first name and last name will be used in communications with Dementia UK staff and other LEAP/LEAN members. | Legitimate interests |
| Email address | To invite you to and remind you of meetings and consultations where your lived experience is used to support, advise and influence Dementia UK. | Legitimate interests |
| Names of support network, family members, and/or carers | To ascertain any support you might need to engage with us at Dementia UK. | Legitimate interests |
| Group name (LEAN) | To be used when describing LEAN, which consists of individuals and groups from across the UK who have offered their time to advise the work of Dementia UK. | Legitimate interests |
| Other Dementia UK roles, e.g. Volunteer Ambassador | To have a fuller understanding of your engagement with Dementia UK. | Legitimate interests |
| Email correspondence | To monitor progress on a project or engagement opportunity. | Legitimate interests |
| Dementia diagnosis | To ensure we have representation from people living with dementia, e.g. different ages, stages and dementia diagnosis. | Consent |
For more information on legitimate interests as a lawful basis please refer to the Information Commissioner’s Office’s online section on legitimate interests.
For more information on consent as a lawful basis please refer to the Information Commissioner’s Office’s online section on consent.
For more information on lawful basis, see the Information Commissioner’s Office’s guide to lawful basis.
Your rights
As a data subject, under UK GDPR you have the right to:
- Access: you have the right to ask for copies of all information we have about you
- Rectification: you have the right to ask us to correct personal information that you think is wrong. You also have the right to ask us to complete information you think is incomplete
- Erasure: you have the right to ask us to delete your personal information
- Restrict storage and use: you have the right to ask us to limit the storage and use of your personal information
- Object to storage and use: you have the right to say no to the storage and use of your personal information unless we have to, as part of our legal obligations
- Data portability: you have the right to ask that we transfer the personal information you gave us to another organisation, or to you
- Withdraw consent: if Dementia UK has asked your consent to use your data for a particular reason, you have the right to take back that consent so that Dementia UK cannot use your data like that in the future. However, if you choose to withdraw your consent this will not change anything that Dementia UK has used your data for in the past with your consent
You can choose to use any of these rights for free by contacting Dementia UK’s Data Protection Officer. The Data Protection Officer will explain any implications of these requests, if carried out.
Dementia UK has one calendar month to respond to you from the time we receive your request. Although you have the right to ask for any of the above actions, Dementia UK does not have to agree to your request. If we do not agree to action your request in full, we must give you an explanation.
Data Protection Officer
For any queries, concerns, or complaints you may have about how Dementia UK collects, uses, or stores your personal information, you can contact our Data Protection Officer at: dataprotectionofficer@dementiauk.org
Or you can write to:
Data Protection Officer
Dementia UK
7th Floor
One Aldgate
London
EC3N 1RE
Information Commissioner’s Office
If Dementia UK cannot resolve your complaint, or if you are unhappy with how we have used your data, you can also contact the Information Commissioner’s Office (ICO: the UK supervisory authority for data protection):
Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
ICO helpline number: 0303 123 1113
ICO website: ico.org.uk