Seeing Dementia Differently Last updated: 10 October 2026

1. Who we are

Seeing Dementia Differently ("we", "us", "our") is a specialist community providing services for young dementia carers and rare dementia carers, founded by Alicia (Cici) Willoughby. We are the data controller for the personal information described in this policy.

Contact: seeingdementiadifferently@gmail.com

2. What this policy covers

This policy explains what personal information we collect through our website, newsletter, social media, events, online community groups and 1:1 guidance calls. Why we collect it, how we look after it, and what rights you have. We follow the UK GDPR and the Data Protection Act 2018.

3. Information we collect

Information you give us directly

• Your name and email address when you subscribe to our newsletter, fill in a contact form or message us

• Details you share when you book a 1:1 guidance call, join an online connection group, or sign up to a meet-up or event (for example your name, contact details, and dietary or accessibility needs)

• Details you share when you buy a product from us, such as your delivery address

• Anything you choose to tell us about your caring situation

• Your story, photos, video or audio, if you take part in our content, such as Carers Conversations and Coffee Corner

Information collected automatically

• Technical information such as your IP address, browser type, device and the pages you visit, collected through cookies and similar technologies (see section 7)

Information from third parties

• If you contact us via social media, we receive the information you share through that platform, in line with its own privacy policy

• Payment providers tell us whether a payment has gone through. We do not see or store your full card details.

4. Sensitive information

Because of the nature of our work, you may tell us about your health, or the health of the person you care for, including dementia diagnoses. This is "special category data". We only collect it if you choose to share it, and we only use it to provide the support you have asked for. We will never use it for marketing or share it without your explicit consent, except where the law requires us to or to protect someone from serious harm.

Please only share details about another person, such as the person you care for, if you feel comfortable doing so.

5. Who we share your information with

We do not sell your personal information. We only share it with trusted providers who help us run our work, and only as much as they need:

• Website hosting and platform: Squarespace

• Payment provider: Stripe

• Booking and video call tools: Google Meet

• Video hosting: YouTube, where our Carers Conversations and Coffee Corner are published

Some of these providers are based outside the UK. Where this happens, we make sure appropriate safeguards are in place, such as the UK International Data Transfer Agreement or an adequacy decision.

We may also share information if the law requires it, or if we believe someone is at risk of serious harm.

6. How long we keep your information

• Newsletter subscribers: until you unsubscribe

• Enquiries and messages: up to 12 months after our last contact

• 1:1 call and group notes: up to 12 months after our support ends, then securely deleted

• Order and payment records: 6 years, as required for accounting

• Published stories and conversations: until you ask us to remove them

7. Cookies

Our website uses cookies. Essential cookies make the site work. With your consent, we also use analytics cookies to understand how people use the site. You can change your choices at any time through our cookie banner or your browser settings.

8. Social media and embedded content

Our website may embed content from YouTube, Instagram, TikTok and other platforms. These platforms may set their own cookies and collect data when you interact with that content. Please check their privacy policies.

9. Children and young people

Our support is created for young carers and young adult carers. If you are under 16, please ask a parent or guardian before you give us your personal information, sign up to the newsletter or book a call. If we learn we have collected information from a child without proper consent, we will delete it.

10. Keeping your information safe

We use sensible measures to protect your information, including secure, password-protected accounts and limiting access to those who need it. No online system is completely secure, but we take care to protect what you share with us.

11. Your rights

Under UK data protection law you have the right to:

• Access the personal information we hold about you

• Correct anything that is wrong

• Ask us to delete your information

• Ask us to restrict or stop how we use it

• Object to us using your information for marketing

• Receive your information in a portable format

• Withdraw your consent at any time, without affecting what we did before

To use any of these rights, email seeingdementiadifferently@gmail.com. We will usually respond within one week.

12. Complaints

If you are unhappy with how we have handled your information, please contact us first so we can put it right. You also have the right to complain to the Information Commissioner's Office (ICO) at ico.org.uk or on 0303 123 1113.

13. Changes to this policy

We may update this policy from time to time. The latest version will always be on our website with the date at the top.

14. Contact us

Seeing Dementia Differently: seeingdementiadifferently@gmail.com