At Dementia Disco, we are committed to protecting your privacy and handling your personal data responsibly and transparently. This Privacy Policy explains how we collect, use, store, and share your information, and outlines your rights under the UK General Data Protection Regulation (UK GDPR) and the Data Protection Act 2018.
Dementia Disco is a registered micro-charity. We uphold the Charity Commission's guidance on good governance, which includes transparency and accountability in how we manage data.
1. Who we are
Dementia Disco provides free, monthly discos that are safe, vibrant havens for people living with dementia, their carers, families, and friends in Stockport and wider Greater Manchester. We sometimes collaborate with partners, such as CareYourWay, to provide professional carer support for attendees.
2. What information we collect
We collect information directly from you when you register for the first time, or communicate with us. The types of personal data we may collect include:
Contact information
- Your full name, email address, and best contact phone number.
Information about the person living with dementia
(With consent from their carer or legal representative where applicable.)
- Full name, relationship to contact, date of birth.
- Primary dementia diagnosis.
- Communication needs or preferences (e.g. simple language, visual cues).
- Mobility needs (e.g. wheelchair use, assistance required).
- Relevant health conditions, allergies, or key medications for safety at events (not full medical history).
- Specific behaviours or triggers to be aware of for their comfort and safety.
- Dietary requirements or allergies (if refreshments are provided).
Other information
- Emergency contact: name, relationship, and phone number of a person not attending the event.
- Demographic information: full postcode (for understanding geographical reach for funders).
- How you heard about us: information about how you discovered Dementia Disco.
- Consent preferences: your choices regarding WhatsApp group inclusion and photography/filming.
3. How we use your information
We use your personal data for the following purposes, based on specific lawful bases under UK GDPR:
To provide and manage our services (contractual / legitimate interest)
- To register you and the person you are accompanying for events.
- To understand specific needs (communication, mobility, health, behavioural) to ensure the safety, comfort, and appropriate support for all attendees at our discos.
- To manage attendance lists and event logistics.
For safety and emergency contact (vital interests / legitimate interest)
- To contact your nominated emergency contact in the event of an incident or emergency during a disco.
- To inform our staff and any professional carers (e.g. from CareYourWay) of essential safety information.
For communication (consent / legitimate interest)
- To send you event reminders, updates, and important information via email or, if consented, via our WhatsApp group.
- To respond to your enquiries and feedback.
For monitoring and reporting (legitimate interest / public task where applicable)
- To collect aggregated, anonymous data (e.g. number of attendees, age ranges, postcodes) for reporting to our funders (e.g. UK Shared Prosperity Fund, The Fore) to demonstrate the impact and reach of our activities. This data will never identify individuals.
For marketing and promotion (consent)
If you provide explicit consent for photography/filming, we may use images and videos on our social media channels, website, and in promotional materials to showcase the positive impact of Dementia Disco and encourage wider participation and support.
4. How we share your information
We will only share your information when it is necessary, lawful, and relevant to the purposes outlined above. We do not sell or rent your personal data to third parties.
- Emergency services: in the event of an emergency, we may share necessary information with emergency services (e.g. NHS, Police) if it is in the vital interests of the individual or others.
- Funders: as a charity, we are required to report to our funders on the impact and reach of our work. This data will always be aggregated and anonymised, meaning individuals cannot be identified.
- Social media platforms: if you provide explicit consent for photography/filming, images and videos may be shared on platforms like Facebook, X (formerly Twitter), etc. Please note that these platforms have their own privacy policies.
5. How we store and protect your information
We take the security of your personal data seriously. We implement appropriate technical and organisational measures to protect your information from unauthorised access, alteration, disclosure, or destruction. These measures include:
- Storing digital data on secure, password-protected systems.
- Restricting access to personal data to authorised staff and volunteers only on a "need-to-know" basis.
- Using secure communication methods (e.g. encrypted email where appropriate) when sharing sensitive information.
- Ensuring any physical records are stored securely in locked cabinets.
6. How long we keep your information
We retain personal data only for as long as necessary to fulfil the purposes for which it was collected, or as required by law (e.g. for safeguarding purposes or Charity Commission regulations).
- Registration data: we will retain core registration data for the duration of your active engagement with Dementia Disco and for a reasonable period thereafter (e.g. 2–3 years) to facilitate re-engagement or for historical reporting.
- Safeguarding records: records relating to safeguarding concerns will be retained in line with statutory guidance and best practice for safeguarding children and adults, which may be for extended periods.
- Financial records: financial transaction records are kept for a minimum of seven years for HMRC and Charity Commission compliance.
- Consent records: records of your consent preferences (e.g. for WhatsApp, photos) will be retained as long as they are relevant to your participation.
- Photography/filming: images and videos consented for public use may remain on social media platforms indefinitely, unless you withdraw your consent for future use.
Once information is no longer required, it will be securely deleted or anonymised.
7. Your rights
Under UK GDPR, you have the following rights regarding your personal data:
- Right to be informed: you have the right to know how your data is being used (as explained in this policy).
- Right of access: you can request a copy of the personal data we hold about you.
- Right to rectification: you can request that we correct any inaccurate or incomplete personal data we hold about you.
- Right to erasure (the "right to be forgotten"): in certain circumstances, you can request that we delete your personal data.
- Right to restrict processing: in certain circumstances, you can request that we limit how we use your personal data.
- Right to data portability: in certain circumstances, you can request to receive your personal data in a structured, commonly used, and machine-readable format.
- Right to object: you can object to our processing of your personal data in certain situations (e.g. for direct marketing).
- Rights in relation to automated decision-making and profiling: we do not use automated decision-making or profiling that would significantly affect you.
8. Withdrawing consent
Where we rely on your consent to process your personal data (e.g. for WhatsApp, photography/filming), you have the right to withdraw that consent at any time. To do so, please contact us using the details below. Please note that withdrawing consent will not affect the lawfulness of processing carried out before you withdrew it.
9. Contact us
If you have any questions about this Privacy Policy, our data protection practices, or if you wish to exercise any of your rights, please contact us:
Email hello@dementiadisco.org or call 0300 102 7042.
10. Complaints
If you are not satisfied with how we have handled your personal data, you have the right to make a complaint to the Information Commissioner's Office (ICO), the UK supervisory authority for data protection issues: www.ico.org.uk
11. Changes to this Privacy Policy
We may update this Privacy Policy from time to time to reflect changes in our practices or legal requirements. Any updates will be published on our website, and we encourage you to review it periodically.
See also our Terms & Conditions.
