Take part in dementia research

Clinical trials, also called interventional trials, involve active testing. For example, testing a new drug. They test new interventions that aim to prevent, diagnose or treat people; or improve their care and quality of life.

Clinical trials are the main way that researchers can identify whether a new approach, such as a new drug or a device, is safe and effective in people.  

A well-designed clinical trial will gather high-quality evidence about which treatments or approaches are most effective. The results of clinical trials often guide decisions about treatment for healthcare professionals, regulatory bodies and people with dementia.

We are partnering with the UK Dementia Trials Network (UKDTN) to publicise a list of available research trials. Use our clinical trial finder tool to review the studies currently open to participants.

Observational studies are about observing without interfering. For example, monitoring people who smoke over to see how it affects their health.

Observational studies collect information about a group of people, without changing anything or deciding on treatments. For example, researchers could look at what factors might increase a risk of developing dementia without interfering in participants daily lives.  

Observational studies may include surveys and questionnaires or using existing records and information, such as hospital records.

This type of research can help us better understand how dementia affects people in real-world situations. They are an important way of identifying questions that may be better answered by future clinical trials. 

Everyone has their own reasons for wanting to participate in research. Some of the reasons people have shared with us include:  

• To help make a difference in the future.
• Accessing new devices or therapies that might improve symptoms and quality of life.
• Spending more time with healthcare professionals.
• Access to information, tests and support that may not otherwise be available.
• To learn more about their condition and its treatment.
• Having a sense of purpose and control.
   

You can read stories from people who took part in research on the Join Dementia Research website.

What’s involved in each study will depend on the questions researchers are trying to answer. Researchers will explain what's involved in their study before you decide if you want to take part.

Studies may take place in a hospital, GP practice or other health centres within a community. Depending on the study, some can also be done at home, online or by telephone.

Below are some examples of what you might do when participating in a study:

• Take memory or thinking tests, also known as ‘cognitive’ tests.
• Record your symptoms.
• Give blood samples.
• Take new medication.
• Stay overnight in a hospital for monitoring.
• Change parts of your lifestyle, such as exercising more.
• Try out new foods or supplements.
• Fill in questionnaires or surveys.
• Participate in talking therapies.
• Test new technology or wearable devices.

Anyone who is a UK resident and over the age of 18 can register their interest in taking part in dementia research.

Each study has its own rules and guidelines as to who can take part. This will depend on the type of study and will be based on things such as:

• the age of the person
• the type of disease
• the stage of a disease
• previous treatment history
• what medical conditions the person has
• any mediation the person is taking.

It’s always your choice whether to take part and you can change your mind at any time.

Before taking part in research, potential participants will receive detailed information about the study. This will include the risks and benefits associated with participating, as well as information such as which procedures are involved.  

The research team will go through this with you, and you will have the chance to ask questions and have these answered to your satisfaction. This will help you make an informed decision whether or not you would like to take part.