How we use information about supporters

Personal data – what is it?

Your personal data is information about you where you can be identified - such as your name and date of birth or your address, or describes you, for example your health information, or your support for us. If you have engaged with the Society previously, we will hold information about this, for example what campaigns you have joined, whether you are a Dementia Friend or if you have raised funds for us.

However we are connected with you, Alzheimer’s Society will respect your personal information and protect and use your information in line with data protection law. Usually, the Alzheimer’s Society will be the ‘data controller’ of your personal information. This means we’re responsible for how we use your information, for letting you know about how and why we use your information, and for protecting your personal information. 

How we use your information

To help you support us – events, campaigns, donations, legacies

When you support us, for example by

• Signing up to take part in an event
• Joining a campaign 
• Leaving a gift in your will
• Making a donation

We collect, hold and use your information for that action. This may include sending you information about your support, your action or sending you resources to help you take part. 

Sometimes we ask for more information about you, such as your occupation, ethnicity (special category data), or other interests. This information is optional. If you choose to share this information about yourself, it helps us personalise news, opportunities or updates which you may find interesting and can help us assess effectiveness of our campaigns and awareness materials.

When you sign up to take part in activities, we may ask you for health information (special category data) to help us provide a safe and suitable environment for you. For example, if the activity involves some risk or physical effort (such as our trekking events). Or if as part of an event we will provide food, we may ask you about any dietary requirements. We also ask for confirmation that you’re over 16 when needed for events and for sending promotional information.

Where the Alzheimer’s Society may be a beneficiary of a legacy, we will store the names and contact details of executors, a copy of the will, and a grant of probate. We may also obtain contact details and data, including special category data such as health data, relating to other beneficiaries and third parties for us to engage in relevant correspondence to secure payment of a gift.

To send you information about future ways you can take action

By supporting us, you're doing something incredible to help thousands of families affected by dementia. We'd love to keep in touch, and update you on the latest news, including the amazing work we do with our services and research, and how you can do more to help with fundraising, campaigning, or volunteering.

With your consent we’ll keep you up to date with our news by email, SMS, telephone or social media and let you know how you can continue to support us and take part in future action.

In order to support our fundraising and charitable activities, we may also keep you up to date by post. You can, of course, let us know any time you no longer want to receive these letters or change your preferences.

To promote the work of the Society

It makes a difference if, when explaining the work of the Society, we can use real-life stories and information to bring this to life and show the impact of dementia and how people are uniting together to make dementia a priority.

So we may record your first-hand experience of dementia (“your story”) or at our events. This could be a quote, a photo, an audio or video interview – sometimes we may ask you to share your own personal photos. 

When we take photos or footage at Society events to use in future communications and marketing materials you will be informed at the start of the event and given the opportunity to choose not to share your story or be photographed.

Where we do ask for your consent to collect and use your information (for example, for a story) we will explain what it will be used for. You can change your mind at any time and withdraw your consent, and we won’t use your story or photo again. We will never use your information in a different way without asking you first.

We create anonymous statistics and feedback about supporters’ participation from information you provide to share with relevant and appropriate partners and organisations. This will be done to highlight the work of the Society and size of the movement for change.

To analyse the effectiveness of our work

We analyse information about our supporters so we can understand how people engage with us, improve our services, and make sure we use our charitable funds responsibly. This includes reviewing how effective our fundraising and awareness campaigns are, so we can make sure that more of the money we raise goes directly towards supporting people affected by dementia.

How we use profiling and supporter analytics 

To help us understand our supporter community better and make our fundraising activity more relevant and effective, we sometimes use “profiling” or analytical techniques. This means we may use information you give us — such as postcode, age range, donation history, event participation, volunteering and involvement activity with the Society — together with carefully selected and reputable external sources, to group supporters who share similar characteristics or likely interests.

• Publicly available data sourced by external organisations (such as information providers like Experian) like age-bands, council tax band, property prices and length of residency, average earnings where you live, your job, directorships, your financial circumstances, networks, your philanthropic interests (like charity trusteeships).
• Information you’ve put in the public domain, like support to other charities.

We use this information to:

• Ensure communications with supporters are appropriate and relevant
• Develop fundraising campaigns that are more aligned with supporter interests
• Ensure our fundraising costs remain as low as possible, so more of our income goes to our charitable work
• Plan long-term support services, events and research programmes

We rely on legitimate interests as our lawful basis for this type of profiling and analysis. We only use information that is necessary, and we regularly review our methods to ensure they are fair, balanced and do not cause any unjustified impact on you.

Importantly, we never make fundraising decisions about you solely by automated means. Decisions about who receives personalised fundraising communications are always subject to human review.

Your right to object to direct marketing and related profiling

Under UK GDPR Article 21, you have an absolute right to object at any time to the use of your personal data for direct marketing, including any profiling we carry out that is related to direct marketing purposes.

This means:

• If you tell us you don’t want to receive any fundraising or campaign communications, we will stop sending them and will also exclude your information from any profiling or analytical activity used to decide who receives these communications.
• If you object only to a particular method (for example, postal mail, email or SMS), we will stop using that method and will continue to respect your preferred method for marketing communication. We will still include your information for profiling and analytical activity.
• You can change your preferences or object at any time by contacting our Supporter Care team, or by calling Supporter Care on 0330 333 0804 or emailing [email protected].

Objecting to marketing communications does not affect other important communications we send that are not promotional in nature, such as administrative messages, donation acknowledgements, Gift Aid confirmations or updates relating to services you have signed up for.

At times we may contact you to ask you to take part in market research opportunities or ask for feedback. Participation is completely voluntary but it helps us know what we are doing well, and what you feel we could do better. 

This helps us make sure opportunities we offer for people to get involved are relevant, appropriate and helps us towards our goal of creating a world where dementia no longer devastates lives. You can opt out of market research opportunities at any time by contacting us.

To keep accurate records and prevent and detect fraud or other crime

We may use your information, including information obtained from other sources, to check and improve the quality and accuracy of the information we hold about you. 

We keep financial records of donations and fundraising activities to help us manage our accounts information and carry out fundraising due diligence. This includes recording and investigating suspected or alleged fraud to comply with regulatory requirements relating to unlawful acts or dishonesty. We may report our suspicions, any allegations and results of internal investigations to the police or other relevant regulatory body. For example:

• Investigations into false fundraising events.
• Stealing collection boxes.
• Interfering with banking (for example, intercepting cheques or changing bank details). 

If you tell us that you have dementia

We may ask supporters what their relationship to dementia is, for example when you sign up for an event, or make a donation. 

If you choose to share this information with us, it helps us communicate better with you. We may also analyse your response to understand our supporters better and send more relevant messages about our work and reach more people in the future.

If you have told us that you have dementia you have agreed that we can use your health information (special category data) in these ways. 

If you later change your mind about us holding and using that information about you, you can ask us to update or remove it at any time by calling Supporter Care on 0330 333 0804 or email [email protected].

Sharing your information

The Society may share your information for specific reasons, including:

Using suppliers to help us fulfil orders and engage with you. We may also share your personal data with other third parties who provide a service to us. This includes trusted partners that help us maximise our gift aid, for example organisations with whom you’ve signed a universal gift aid declaration. We undertake due diligence on all these organisations and entered into contracts requiring them to only process your information for the purposes we instruct them to and in a safe manner.

If you sign up to take part in an event which is hosted or organised by a third-party, the Society may need to share relevant information with them which is necessary to help ensure your safe participation.

If you sign up to take part in an event through a corporate partnership with your employer, limited depersonalised information may be shared about your involvement with them.

To enable us to efficiently advertise online to people that might be interested in our work, we may share cookie or email address information with social media or networking platforms for them to identify who to show adverts to. Any such data will be shared in a secure and encrypted way.

With your consent, the Society may pass your information (for example, stories and photos) to media organisations for their use to promote the work of the Society.

The Society may need to share information with government agencies where we have a legal obligation to do so (for example, with HMRC for gift aid purposes).

Alzheimer’s Society will share your information after careful consideration when needed under the following circumstances:

• If we are required to by law, for example to the police if we agree it’s essential to the prevention or detection of a crime.
• If we consider there are valid serious concerns for your or others health and welfare, for example safeguarding.
• If we feel it’s in the vital interests of yourself or another person for example in a medical emergency.

We believe making a difference to people living with or affected by dementia should be acknowledged and rewarded. 

We nominate people for awards or honours where they have made a significant difference so we may share relevant information about them with bodies and organisations to support the nomination. 

For some external awards or honours the nominating organisation is asked not to inform the person being nominated.

Receiving information from third parties

Alzheimer’s Society receives information from third parties about you in some circumstances, including:

• Where you have donated money via a third-party platform.
• If you have signed up for a third-party event and are raising money for Alzheimer’s Society.
• Where a network outside the Alzheimer’s Society comes together to support making dementia a priority. They may ask other professionals if they are also interested and share their information with the Alzheimer’s Society to check professionals aren’t contacted multiple times.
• When your information is publicly available, for example, Companies House, Land Registry, or, depending on your privacy settings, from social media and internet services like Facebook and Google.

How long is your information held?

We keep supporter information only as long as needed and then we dispose of it securely. Alzheimer’s Society has a schedule for securely holding and disposing of supporter information. 

Once the business need to keep information has passed, the Society will ensure that it either disposes of this information or anonymises the information so you can’t be identified. 

If you support the Society by donating money, we have to keep financial records of this in our accounts for 7 years.
If you ask us to stop sending you direct marketing material, we may keep limited contact information about you to make sure we don’t mistakenly send you direct marketing in the future. 

Where is your information held?

We hold most information on our  IT systems which have security measures in place. Some information may be kept in a paper record format, but where possible this will be transferred to an electronic record and the paper record securely disposed of.

Where we use other organisations to help us operate, they may hold information outside the UK (for example, some payment companies we use are based in the USA).

However, where this is the case, we make sure that your rights are protected through engaging in appropriate due diligence. 

Use of AI tools (Artificial Intelligence)

Personal data may be in files accessed by AI tools we use. 

We don’t use AI alone to make automated decisions about you. There will always be human intervention to review any outputs from AI tools.

Security and confidentiality

Alzheimer’s Society takes care to ensure security of your information in use, storage and transmission, and that it is only used by verified persons who have necessary authority. All our people who have access to your personal information receive annual training to ensure they respect the confidentiality of your information.

Lawful basis for using personal information

If we use your personal information on the basis of your consent, then you can withdraw your consent at any time (by telephone, email or letter) and we’ll stop further use on that basis.

We may sometimes use your information to fulfil a contract with you, such as where you register for a Society event.
We use some supporter personal information to meet our legal obligations, for example, financial record keeping, Gift Aid, health and safety.

For some uses of your information, for example, creating supporter profiles, sending supporter postal mailings, or contacting you when you are supporting us, this is in our legitimate interests. You can object to our use of your data in this way at any time by calling Supporter Care on 0330 333 0804 or email [email protected].

Your rights

If you want a copy of your personal information or to ask us to correct the information we hold about you, to stop using your information or to delete some or all of it, then please contact us using the details below:

• by phone to Customer Care on  0330 333 0804
• in writing to Information Governance, Alzheimer's Society, Suite 2, 1st Floor East Wing, Plumer House, Tailyour Road, Plymouth, PL6 5FS
• by email to [email protected]

You can also fill in the online form for general enquiries.

You can also contact our Data Protection Officer using the contact information above, or at [email protected]

Complaints

If you’re unhappy with how we are processing your information then you can contact us as above. If you’re still unhappy after receiving our response, you can raise your concern to the Information Commissioner’s Office for them to investigate. 

If you live outside the UK in Guernsey, please contact Guernsey Data Protection Authority, or if you live in the Isle of Man, please contact Isle of Man Information Commissioner.