Privacy policy, DDI

Who we are

The Dementia Dialogue Initiative ("DDI", "we") runs the website dialoguefordementia.com and the community platform at app.dialoguefordementia.com. We are the data controller for the personal information described here. You can reach us at hello@dialoguefordementia.com.

What we collect

Account details: your name, email address, the role you choose (for example carer, patient, professional) and a password we store only in hashed form.
Content you share: stories, posts, questions, replies, direct messages and anything else you choose to publish or send on the platform.
Contact messages: what you send us through the contact form or by email.
Usage information: pages visited, features used, approximate location from your IP address, browser and device type, and the date and time of visits.
Cookies: strictly necessary cookies that keep you signed in and keep the platform secure. We do not use advertising cookies on this website.

Because DDI is about dementia, the content you share may reveal information about health, ethnicity, religion or family life. Under UK data protection law this is special category data. We process it only because you choose to share it, and you can edit or delete it at any time.

Why we use it

To run the platform, create your account and show you relevant stories, boards and resources (performance of our contract with you).
To keep the community safe: moderation, preventing abuse and investigating reports (our legitimate interest in a safe service).
To respond when you contact us (legitimate interest).
To understand how the platform is used and improve it, using aggregated statistics wherever possible (legitimate interest).
To send service emails such as password resets and important notices. We only send newsletters or updates if you opt in, and every one has an unsubscribe link.

For special category data, the lawful basis is your explicit consent, given when you choose to publish or send that content.

Who we share it with

We never sell personal information. We share it only with providers that help us run the service, such as hosting, database, email delivery and error monitoring providers, each bound by contract to protect it and use it only on our instructions. Where a provider stores data outside the UK, we rely on the UK International Data Transfer Agreement or an adequacy decision.

We will disclose information if the law requires it, or where we reasonably believe someone is at serious risk of harm.

What other members can see

Stories, posts and replies are visible to other members of the platform. Direct messages are visible only to the people in the conversation and to DDI moderators if a message is reported. Think carefully before including details that could identify a person you care for.

How long we keep it

We keep your account and content for as long as your account is open. If you delete your account we remove or anonymise your personal information within 30 days, except where we must keep a record for legal reasons or to deal with a dispute. Contact messages are kept for up to two years. Server logs are kept for up to 12 months.

Your rights

You can ask us to give you a copy of your information, correct it, delete it, restrict how we use it, or provide it in a portable format. You can object to processing based on legitimate interests, and withdraw consent at any time. Email hello@dialoguefordementia.com and we will reply within one month.

If you are not happy with how we handle your information, you can complain to the Information Commissioner's Office at ico.org.uk. We would appreciate the chance to put things right first.

Security

Connections to DDI are encrypted, passwords are hashed, and access to personal information is limited to people who need it. No system is perfectly secure; if we ever discover a breach affecting you, we will tell you and the ICO as the law requires.

Children

DDI is for people aged 16 and over. We do not knowingly collect information from anyone younger. If you believe a child has created an account, contact us and we will remove it.

Changes

If we change this policy in a way that matters, we will tell you by email or with a notice on the platform before the change takes effect.

DDI is not a substitute for medical advice. Nothing on the platform should be used to diagnose or treat a condition. Always speak to a clinician about diagnosis and treatment.