How we use information about service users

Who we are

We are Alzheimer’s Society – as a charity we build understanding, support more people affected by dementia than anyone else and fund groundbreaking research

We may collect and decide how to use your personal information. The legal phrase that's used to describe an organisation that makes these decisions is 'data controller’. Occasionally, we may act on behalf of another organisation when we manage your personal information and, in those instances, we will tell you this.

Personal data – what is it?

Your personal data is information that identifies you, such as your date of birth or your address.  

It can also be information that reveals something about you, for example information about your dementia diagnosis or your ethnicity.  

We may also hold health information or other relevant details. Whatever information you give us, we will respect your privacy and your rights.

How we use your information

To deliver services you have asked for

With your consent, we will use your personal information to:

• help you decide which services are suitable for you
• help us to work with you to provide the services you receive
• work effectively with other organisations who also provide you with care and support
• help us manage any safeguarding concerns

If you have any concerns about our services, we will use the information you have given us to investigate and answer your query.

To see how effective our work is

We want everyone affected by dementia to know that we are here to give support, help and advice. We will use the information you provide us with to:

• check the quality of our services and make sure they are safe and effective
• help with planning new services
• understand who is using our services, who we may not be reaching, and where support might be needed. This helps us measure the impact of our work, identify any gaps, and make our services more accessible to everyone affected by dementia

Occasionally we may ask for your feedback. We do this to understand how well our services are working, to make sure they are being delivered as they should be, and to help us decide, where to focus our research and campaigning. This is completely voluntary and helps us to improve our services

If you have engaged with the Society in other ways, for example as a volunteer, supporter or donor we will hold information about this.  

Sharing your information

There are some circumstances when we may share your information with other organisations. These include:

• when you have given us your consent or have asked us to share your information. For example, we may refer you to another organisation that may provide support you would like to receive, you can withdraw your consent at any time (by telephone, email or letter) and we’ll stop further use on that basis.
• if we are required to by law – for example, passing your details 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 you or another person, for example in a medical emergency
• sharing information for safeguarding purposes, where you or others are at risk of harm or to prevent future harm. We will inform you that we have shared this information, unless there are exceptional circumstances that would prevent us from doing so. For example, if this disclosure could cause further risk of harm
• when a public commissioning body, where they are entitled (under the Care Act 2014), asks for your information to examine what support we are providing to you, or to deal with a complaint you have made
• when we are providing our services to you as part of an Integrated Care Service. Then, we may share relevant information with other partner organisations. This includes NHS trusts, memory clinics, GPs and other service providers, as part of providing you with the correct support, for example, the Society may be part of Multi-Disciplinary Team meetings where some of these organisations discuss your care/support together
• when we nominate people for awards or honours, where they have made a significant difference to people affected by dementia. 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.

We do not use your personal data for fundraising or marketing or share your information with other organisations.

Receiving information from third parties

We will receive information from third parties about you:

• when you have agreed to be referred to us (for example, by your GP)
• if we reach out to other agencies you are engaged with (with your permission)
• if someone tells us they are worried about your safety
• from public authorities and other organisations as part of Integrated Care Services

In these situations, or in any circumstance not covered by the list above, we will let you know what kind of information the third party has given us about you.

How long information held for?

We have secure processes in place to protect all personal information including how we keep and delete it. After your last contact with us, we will keep your information for eight years. Sometimes, for example if the service has been paid for by another organisation or for safeguarding records, we may need to hold records for longer.

Where is 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. 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

We take care to make sure your information is secure when we use, store and transmit it. It is only accessed by people who we have authorised to do so. All our people who have access to your information receive training to ensure they respect the confidentiality of your information.

Your rights

You have rights about how we use your information. If you get in touch with us, we’ll do our best to respect your wishes.

Please contact us if you want any of the following:

• to see what information we hold on you
• to ask for a copy of your information
• to ask for corrections to be made
• to ask us to stop using your information in any way to ask us to delete some or all your information

Contact us about any of these requests using the online form for general enquiries or email [email protected] or write to the Information Governance team at the address in the next section.

How to contact us

For any other questions about how we are using your information, please contact our enquiries team by phone on 0330 333 0804 
or by email to [email protected]

Our address to write to is:

Alzheimer’s Society 
Suite 2 
1st Floor East Wing,  
Plumer House,  
Tailyour Road 
Plymouth, 
PL6 5FS

Complaints

If you are unhappy with how we are processing your information, please contact us using the details outlined 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 the Isle of Man Information Commissioner.

If you are using one of our services that is commissioned by a public organisation, then your complaint may be made available to them so that they can address your complaint and our response. Where this applies, you may also complain directly to the commissioning body.