How we use information about volunteers

Your information helps us unite with you through volunteering to create a world without dementia.

What is personal data?

Personal data is information that identifies you, such as your date of birth or address. It can also be information that reveals something about you. For example, your email address, contact preferences, or the reason why you want to volunteer with us. If you have volunteered with us before, or supported us in another way, we may hold information about that too.

However we are connected, we will respect your privacy and rights and only process information about you when there is a legitimate need to do so.

How we use your information

To recruit volunteers

When you enquire about volunteering or apply for a role, we will gather and store information about you. To do this we will ask you to provide information that is relevant to roles you are interested in. This is to make sure the opportunity is suitable for you (for example, that we can meet any mobility or disability requirements, or that any conflicts of interest are addressed). You do not have to give this information, however some of the details may be necessary for carrying out certain roles. By not providing it you may not be able to carry out those roles. In these cases we will try to suggest alternative opportunities for you.

Examples of these kinds of information include details of people who can provide you with a reference, dietary requirements, or information about your health and wellbeing (for example for a role that involves some physical exertion volunteering at an event). We will use the information to make a decision about your suitability for the role/s.

Depending on the role you apply for, we may be required to ask you to undertake a criminal records check. If this is the case, it will be clearly stated in the role advertisement or role description. We will only ask you to do this if it is a legal requirement, or if we have a contractual obligation to the organisations we deliver services on behalf of.

To provide you with the best volunteering experience possible

Once you become an Alzheimer’s Society volunteer, we will use the information you provide to make sure you have the best volunteering experience possible. It will be used to ensure you have a safe volunteering experience and that you are provided with information and learning opportunities relevant to your volunteering role.

We’ll communicate with you about your volunteering role through your preferred method of contact. If at any point you want to change how we communicate with you, please tell your role manager or the Volunteering Support team.

To see how effective our work is

As a charity, it’s really important to us that we are spending our money and resources effectively and efficiently. For that reason, we may analyse the details you have provided us to help us understand why people are motivated to become a volunteer, and to help us create a better picture of our volunteers.

Sometimes as part of the contracts we deliver for commissioning bodies, we need to show that we are running services that are representative of the communities we serve. When this is the case, we may use the demographic information you have provided us with to provide anonymous statistics about our employees and volunteers to the commissioning body.

From time to time we’ll ask you to provide us with feedback on your experiences. Participation is completely voluntary but it helps us to know what we are doing well and what you feel we could be doing better. This will help us make sure our volunteering opportunities provide the best experience possible, as well as helping us achieve our goal of creating a world without dementia.

To promote our work

When we explain our work, it makes a difference if we can use real-life stories and information. It helps to bring our work to life by showing the impact of dementia and how individuals are uniting together to take action.

To do this, we may take photographs or footage at our events to use in future marketing materials. When this is going to happen, we will tell you at the start of the event and give you opportunity to choose not be photographed or filmed.

Where information is collected that clearly identifies you (for example, your volunteering story), we will explain beforehand that we’d like to do this and what it will be used for. We will ask for your consent to use it for these purposes and regularly check you are still happy for your information to be used. We won’t use your information in any other way without your agreement.

Anonymous statistics about volunteer participation may be created from the information you provide and shared with relevant and appropriate partners. This will be done to highlight our work and the size of the movement for change.

To send you information about other ways to get involved

By volunteering with 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 other volunteering opportunities.

With your consent we will 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 in different ways.

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

Sharing your information

We never sell your information to other charities or organisations.

Sometimes, we may use suppliers to help us provide you with a fulfilling volunteering experience and to engage with you. For example, if you need some training for your role, we may share your email address with our externally-hosted e-learning platform so you can log-in and complete the relevant modules. Or if you are volunteering at an event, we may ask one of our fulfilment houses to send you a T-shirt. We have undertaken due diligence on all

these organisations and have contracts in place that require them to only process your information for the purposes we instruct them to, and to do it in a safe way.

If you sign up to take part in an event that is hosted or organised by a third party, we may need to share relevant information with them to make sure you can participate safely.

If we feel there are areas of Alzheimer’s Society or other organisations who may be able to help you outside of your volunteering role, we will only share your information if we have your consent.

We may share some information with agencies who offer volunteering awards so that the fantastic contribution you give to your local community and the fight against dementia is recognised and celebrated.

If you volunteer for a service which is funded by a public commissioning body, we may be required to share information with them as part of the commissioning contract. This will normally be in the form of anonymised information, but sometimes may involve sharing limited personal information. In those specific circumstances, you will be informed when personal information needs to be provided.

We will not share your information with any other organisation without your consent other than:

  • With the organisers of events you’re attending (as long as sharing your information is justified and lawful
  • If we are required to by law, for example to the police if we agree it is essential in the prevention or detection of a crime
  • If we feel it is in the vital interests of you 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 and 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

We will only receive information from third parties about you:

  • When you have expressed an interest in volunteering with us through another organisation (for example, volunteer centres, websites or your employer)
  • As a result of seeking references from people you nominated to be your referees
  • In response to a criminal records check.

When this is the case, or in any unique circumstance not covered by the list above, we will make sure you know it has happened and explain what kind of information the third party has given to us.

Storing your information

We have a robust schedule for securely holding and disposing of volunteer information. We only keep your information for as long as it is needed and then dispose of it securely. The length of time we hold it for depends on the purpose we were collecting and using it.

If you are not successful in becoming a volunteer, information will only be held for 12 months. If you do become a volunteer, we will keep your information for up to three years after you finish volunteering with us.

Where is your information held?

We hold most information on our central IT system which meets international security standards. Some information may be kept in a paper record format, but where possible we will transfer it to an electronic record and dispose of the paper version.

When we use other organisations to help us operate, they may hold information outside the UK. However, where this is the case we make sure that your rights are protected and do this through appropriate due diligence and robust contract management.

Security and confidentiality

We take care to ensure your information is secure when we use, store and transmit it. It is only accessed by people who have been verified and authorised to do so. Every one of us who has access to your personal information is obliged to respect that it is confidential and we deliver training to make sure this happens.

Your consent

If we are using your personal information on the basis of your agreement, you can withdraw your consent at any time and we will stop using it.

Further rights

Please contact us at any time you want to:

  • See what information we hold on you
  • Request a portable copy of your information
  • Ask for corrections to be made
  • Ask us to stop using your information in any way
  • Ask us to delete some or all of your data.

We’ll do our best to respect your wishes

How to contact us

If you have any questions about how we are using your information please contact us:

  • by phone to Customer Care on 0330 333 0804
  • in writing to Customer Care, Alzheimer’s Society, Scott Lodge, Scott Road, Plymouth, PL2 3DU
  • by email to [email protected]

You can also use the online form for general enquiries.

For a copy of your personal information, to ask us to correct the information we hold about you, to stop using your information or to delete some or all of it, contact the Information Governance team at:

Information Governance Team
Alzheimer's Society
Suite 2
1st Floor East Wing
Plumer House
Tailyour Road

You can also email our team at [email protected]


If you are unhappy with how we are processing your information, please contact us using the details outline above. If you are still unhappy after receiving our response, you can raise your concern with the Information Commissioner’s Office.

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.

  • Page last reviewed: