Ways you can encourage patients to get involved in dementia research

Research is vital in improving dementia diagnosis, treatment and care. However, many people who would like to take part in research simply do not know how to get involved.

Healthcare professionals can play an important role in changing this. By connecting patients, carers, and families to opportunities through Join Dementia Research.

Start conversations early

Present research as a normal part of dementia care, rather than something separate or only for certain people. Introducing research opportunities early can help patients and families feel more informed and confident.

Even a simple conversation during appointments can help raise awareness. It can also reassure patients that participation is voluntary and flexible.

You do not need in-depth knowledge of every individual study. However, having a general understanding of the research process will help you to support informed decision-making and respond to questions.

In practice, this could include:

• Signposting to services to help people find research opportunities. This includes Join Dementia Research

• Helping people access clear information about research processes, governance and safeguards. For example, through NIHR resources

• Highlighting opportunities to shape or guide research

• Promoting research in ways that are inclusive and accessible.

Highlight the benefits of taking part

People often take part in research to improve future care and treatments for others. It is important that people understand that taking part in research likely will not have a direct impact on their own care or treatment. However, people often find that they learn more about their condition and feel more involved in their care journey.

You can explain that research studies vary and may include:

• Questionnaires or interviews

• Brain scans or blood tests

• Clinical trials for potential treatments

• Studies exploring lifestyle, care and support approaches.

Reassure patients that anyone can take part

Many people assume dementia research is only for those with a diagnosis. However, anyone over the age of 18 can register with Join Dementia Research. This includes carers, family members and people without dementia.

There is also no obligation to take part in a study after registering. Volunteers are matched with suitable studies and choose whether they would like to take part.

Use trusted resources and materials

Promote dementia research through;

• Posters and leaflets

• Waiting room screens and bulletin boards

• Staff newsletters and internal communications

You can use Join Dementia Research’s resources to help support conversations with patients. These resources can also help you to embed research into everyday practice.

Share real stories

Volunteer stories can be one of the most powerful ways to encourage participation and help to challenge misconceptions people might have about research. Hearing directly from people who have taken part in dementia research shows the real-world impact research can have.

Help make research accessible

Small changes can make a big difference when discussing research opportunities. This includes:

• Using plain language

• Allowing extra time for conversations

• Involving carers or family members can help people feel more comfortable about taking part.

Inclusive research is essential to improving outcomes for all communities affected by dementia.

Visit our ‘healthcare professionals’ pages to find out more about how you can help promote Join Dementia Research.