Celebrating our dementia health information

Why should we be talking about dementia?

There are almost 1 million people living with dementia in the UK. Every person with dementia has a network of friends and family directly affected by their loved one’s condition. There are many different types of dementia caused by different diseases that affect the brain. Even though 1 in 2 of us know someone living with dementia, only 1 in 5 of us know that developing dementia is not an inevitable part of ageing. When asked further questions, between 10-22% of people aged 15-65 did not know what happens in the brain when someone has a type of dementia. This shows that even though half of us know someone living with dementia, many do not know enough about what this means.

It is vital that people have access to trustworthy information about dementia and the diseases that cause it. Good quality health information empowers us to make informed decisions about our health and can help to improve our understanding of what treatments and support are available, and how to reduce our risk. It can give us the tools to look after our brain health and enables us to start conversations with others about dementia.

Alzheimer’s Research UK strive to tackle the misconceptions that surround dementia, raising awareness of its causes, symptoms, treatments and prevention. One way we achieve this is through the production of our free dementia health information, that you can access online or by ordering our free booklets. You can also contact our Dementia Research Infoline with any questions you may have about dementia.

What is health information?

We know that your health is important to you, and as the UK’s leading dementia research charity, we feel it is our responsibility to provide you with the best quality information about dementia.

We want to empower people to recognise the symptoms of dementia and feel confident to seek a diagnosis, know which treatments are available and where to go for support.

Knowing more about the diseases that cause dementia and what living with dementia may involve can help people understand and support those around them better. It can also provide the opportunity for people to take steps to reduce their own risk of developing dementia too.

As well as our free booklets, our online information includes web pages, videos, and blogs. We want our information to be as trustworthy, accessible and engaging as possible. We also provide some information in eight different languages and videos are subtitled for people with hearing difficulties.

How is our information developed?

The Patient Information Forum (PIF) was founded in 1997 with the aim of improving access to high-quality healthcare information. They work to develop policies that aim to:

• get members of the public involved in their own healthcare decisions.
• support organisations to produce high quality health information.
• empower shared decision-making around patient experience.
• reduce public health inequalities.

As members of PIF, Alzheimer’s Research UK is working hard to ensure our health information is as useful and relevant as possible to people living with dementia, their friends, family and carers, and for people who want to know more. To do this, we involve people in our information production and update process. We also follow guidelines to make sure our information is written in plain English, our evidence base is reliable and up to date, and that people can easily share their feedback and thoughts with us so we can keep improving.

In April 2021 Alzheimer’s Research UK successfully completed an assessment of our health information production process and received the Patient Information Forum (PIF) Tick accreditation.

The PIF Tick logo displayed on our health information shows the information we provide about dementia is of the highest quality and you can trust that it is accurate and up to date. The accreditation means that our information:

• uses high quality evidence and references such as updated health guidelines and the latest research findings.
• uses feedback from the public to help shape the content and design.
• is user friendly and accessible.
• is promoted to make sure it reaches those who need it.

We will be assessed every year by the Patient Information Forum to ensure we maintain the high production standards and that our information remains as relevant and accessible as possible.

 

Ensuring our information is relevant to you

As part of the guidelines on producing accredited health information, we involve the public during production and ask for feedback via surveys on our web pages. For each piece of information we produce a group of public volunteers give feedback on the content, design, and accessibility. The volunteers who help us with our reviews and updates play an important role, and their valuable input and support benefits everyone who reads our information.

If you are interested in volunteering as a Health Information Reviewer, you can find out more about the role and apply here.

 

How can I access free dementia health information?

• Visit our webpages here.
• Order or download our booklets here.
• Contact our Dementia Research Infoline on 0300 111 5 111 (Monday to Friday 9-5pm) or infoline@alzheimersresearchuk.org.

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