Dementia Action Alliance privacy statement

updated 07/05/2019

Personal data – what is it?

Your personal data is information that identifies you; such as your date of birth or your address, or describes you and reveals something about you, for example your health information, company email address or your opinions.  Alzheimer’s Society collects personal information via this website on behalf of the Local Dementia Action Alliances (LDAA).

If you have engaged with the Society previously, for example if you have joined a campaign, you are a Dementia Friend and/or if you have raised funds for us, we will hold information about this separately. Alzheimer’s Society will respect and use your information for these purposes in line with its Supporter privacy notice, available at alzheimers.org.uk/privacy

The information in the remainder of this privacy notice explains how your information is used for the purposes of joining an LDAA.

How we use your information for the purposes of joining a LDAA

To help you take action

Where you sign up to join an LDAA, we will collect, hold and use your information to help you undertake that action. Alzheimer’s Society will share the information that you provide on this website with the LDAA that you would like to join in order for them to send you information about your membership, monthly newsletters and information from the local community group.

Where we ask for information about you that is not mandatory, such as Job title or telephone number you do not have to provide this, but, if you choose to, it helps the LDAA to personalise news or updates which may be interesting to you, and also the Society to assess the effectiveness of our campaigns and awareness materials.

To analyse the effectiveness of our work

As a charity, it’s really important to us that we ensure we are spending our money and resources effectively and efficiently. For that reason, we may analyse the details you have provided us along with further information about you that we have obtained from public and/or private sources. In some instances we may make use of additional factors such as demographic information and measures of wealth to help us better understand the persona of our supporters.

We do this to help us understand why people are motivated to support Alzheimer's Society, and to help us create a fuller and better picture of our supporters. This enables us to communicate with our supporters more effectively and appropriately, and to reach out to individuals who may wish to give additional support with a further monetary gift or volunteer their time/services.

We may contact you and ask you to take part in market research opportunities or ask for feedback. Participation is completely voluntary but it enables us to know what we are doing well, but equally what you feel we could be doing better. This will help us ensure what we are offering as opportunities for people to get involved is relevant, appropriate and helps us in achieving our goal of creating a word without dementia. You can opt out of being contacted about market research at any time by contacting us.

Sharing your information

Alzheimer’s Society does not sell your information to other charities or organisations.

Alzheimer’s Society will share the information you provide on this website with the lead contact from the LDAA that you indicate that you would like to join. 

Alzheimer’s Society acts as an administrator for the LDAAs and is the data controller for information obtained and stored on this website.

Most LDAAs are managed by external volunteers who act independently.  In which case, once your information is shared with the LDAA that you have indicated you would like to join, that LDAA becomes a data controller and is responsible for how it uses information about its members.

Occasionally, the lead contact for a LDAA may be an employee or volunteer of Alzheimer’s Society.  Where this is the case, Alzheimer’s Society will be data controller for future use of your information for LDAA purposes.

Alzheimer’s Society will not share your information with any other organisation without your consent other than under the following circumstances:

  • If we are required to by law e.g. to the police if we agree it is essential to the prevention or detection of a crime;
  • If we feel it is in the vital interests of yourself or another person for example in a medical emergency.

Receiving information from third parties

Alzheimer’s Society will not receive information about you from the LDAA you have joined, unless it is placed on this website.  In which case Alzheimer’s Society will have access to it, however, we will not use it outside of the purposes stated in this privacy notice.

In any unique circumstance where we may receive information about you, we will ensure you know this has happened and explain what kind of information the third party has given to us.

Storing your information

We keep your information only as long as is needed for the purpose we were collecting and using it for and then we dispose of it securely.

Alzheimer’s Society has a robust 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 anonymise the information so that you cannot be identified any more

Where is your information held?

Your information is held on servers hosted in the EU.

Your information will be held for the duration of your LDAA membership.  If you no longer wish to be a member of the LDAA, you should notify your LDAA lead or the Alzheimer’s Society DAA team dementiaactionalliance@alzheimers.org.uk If the LDAA you are joining chooses to hold your information elsewhere, it will be responsible for the method it in which it decides to hold your information.

Security and confidentiality

Alzheimer’s Society takes care to ensure the security of your information in use, storage and transmission and that it is only accessed by verified persons who have the necessary authority. All of our people who have access to your personal information are obliged to respect the confidentiality of this information and we deliver training to make sure this happens.

Each LDAA is responsible for the security and confidentiality of information it holds about its members.

Your consent

If Alzheimer’s Society are using your personal information on the basis of your agreement then at any time you can withdraw your consent, by telephone, email or letter, and we will not carry out any further processing on that basis.

Further rights

If, at any time, you want to see what information we hold on you, receive a portable copy of it, ask for corrections to be made or ask us to stop using your information in any way, then please do contact us and 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 then you can contact us as follows:

by phone to Customer Care on 0330 333 0804;

in writing to Customer Care, Alzheimer’s Society, 43-44 Crutched Friars, London, EC3N 2AE

or by email to dementiaactionalliance@alzheimers.org.uk

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

If you wish to receive a copy of your personal information or ask us to correct the information we hold about you or to stop using your information then please contact the Information Governance Team at:

Alzheimer's Society, 43-44 Crutched Friars, London, EC3N 2AE

or by email to: information.governance@alzheimers.org.uk

Complaints

If you are unhappy with how we are processing your information then you can contact us as outlined above including using the on-line feedback form. If you are still unhappy after receiving our response, you can raise your concern to the Information Commissioner’s Office for them to investigate.