How we create trustworthy dementia information

Everyone deserves access to clear information about dementia that they can trust.

Good information can help people understand dementia, make informed decisions and find support when they need it.

People come to us at different points in their dementia journey. Whether they’re looking for answers about symptoms, trying to understand a diagnosis, supporting someone they care about or exploring opportunities to take part in research.

At Alzheimer’s Research UK, we work hard to make sure our information is accurate, accessible, easy to understand and based on the latest evidence.

Why trustworthy dementia information matters

There are around one million people living with dementia in the UK, and more than half of us know someone with the condition.

Yet many people are still unsure about what causes dementia, how it affects the brain, what treatments are available, or if dementia is just normal ageing.

Trusted information can help people:

• Recognise possible symptoms.
• Seek support and diagnosis.
• Make informed decisions about their health.
• Support friends and family affected by dementia.
• Find opportunities to take part in research.
• Take steps to look after their brain health.

What makes our information trustworthy?

We believe dementia information should be:

• Evidence-based: developed using the best available evidence.
• Clear and accessible: written in plain English and given in different formats.
• Useful: answering the questions people are asking.
• Relevant: made with our readers in mind.
• Up to date: reflecting the latest evidence and understanding.

Every piece of dementia information we produce goes through several stages of review before it is published.

This helps us make sure our information is accurate, easy to understand and relevant to the people who use it.

People help shape our information

One of the most important parts of our process is involving members of the public.

This includes both people affected by dementia and people without personal experience of the condition.

People affected by dementia help us understand real-life experiences, concerns and priorities of the information they need.

People without personal experience help us check whether information is clear, easy to follow and helpful for someone learning about dementia for the first time.

Their feedback helps us:

• Identify gaps in our information.
• Make information easier to understand.
• Explain complex topics more clearly.
• Reflect real-life experiences.
• Answer common questions.

We also learn from feedback sent by readers and people who contact the Dementia Research Infoline.

By listening to a range of voices, we can create information that is accurate, useful and easy to understand.

Keeping pace with dementia research

Research is changing our understanding of dementia all the time.

Researchers continue to make progress in areas such as diagnosis, treatment and risk reduction.

We routinely review our information every two to three years, and sooner when important new evidence emerges, to ensure it remains accurate and reflects current understanding and clinical practice.

Being honest about uncertainty

Research does not always provide clear answers.

Sometimes there is strong evidence. Sometimes researchers are still building a picture of what the evidence means.

In some cases, there is not yet enough evidence to reach a firm conclusion.

When we create information, we aim to be honest about:

• what we know
• what we do not know
• where more research is needed.

This helps people understand dementia, research and to make informed decisions.

Information in different formats

We know people access information in different ways. That’s why we provide dementia information in a range of formats, including webpages, booklets, videos, easy-read resources, translated materials and support through our Dementia Research Infoline.

What is the PIF TICK?

When you’re looking for dementia information, it can be hard to know what to trust.

The PIF TICK is the UK’s only independently assessed quality mark for health information. It helps people identify information that has been developed using a robust quality process.

At Alzheimer’s Research UK, it means our information isn’t simply written and published. We involve people affected by dementia, review the latest evidence, seek expert input and regularly update our content to make sure it remains accurate and relevant.

Our dementia information has been accredited by the Patient Information Forum since 2021.

Trustworthy information is about more than accuracy alone. It should also be easy to understand, easy to find and relevant to the people using it.

For example, when we produce dementia information, we consider:

• The reading age of our content.
• Whether specialist terms need explaining.
• How easy information is to navigate.
• Whether people can quickly find answers to their questions.
• How accessible our content is for different audiences.

By looking at information through the eyes of the people who use it, we can make dementia information more inclusive and easier to understand.

Have a question about dementia?

If you’re looking for information about dementia, dementia research or opportunities to take part in research, we’re here to help.

Explore our information

• Dementia information
• Take part in dementia research

Contact the Dementia Research Infoline

The Dementia Research Infoline team can answer questions about dementia, dementia research and taking part in research.

Telephone: 0300 111 5 111
Email: infoline@alzheimersresearchuk.org

(9-5pm Monday to Friday, excluding Bank Holidays. A translation service is available)

The team are on hand to answer any questions you may have about dementia, dementia research or taking part in research studies.