Working in Alzheimer’s disease research: Amanda’s story

Staff at Oxford Health NHS Foundation Trust are recruiting people with mild Alzheimer’s disease for a study that looks into the reasons for the decline in the ability to function in social situations in people with the condition. The specific cause of why this happens is not currently understood.

Working in Alzheimer’s disease research: Amanda’s story

The Social Cognition and Functioning in Alzheimer’s Dementia study aims to recruit 207 participants with the condition, each with a study partner, a friend or a family member who can answer questions on the participant’s behalf.

Participants are being recruited from 10 NHS sites across England until June 2026.

Amanda Colston, Senior Research Nurse and Oxford Health Clinical Research Facility (CRF) Team Lead explains more about the study and shares her motivation for becoming a dementia research nurse.

What is this research study about?

People with Alzheimer’s dementia can find it difficult to socialise as they used to, and this can get worse as the disease progresses over time. As we don’t currently understand exactly why this happens we don’t have specific ways to help people with this problem.

Previous research indicates that difficulties in being social with dementia could be linked to “impaired theory of mind”, the inability to understand that other people have their own thoughts and cannot imagine what their thoughts might be. This study is trying to see if this is a cause of people stopping being social and, if this is proven, it could help us design programmes that could help people manage their condition.

What does taking part involve?

At the first appointment, we will visit a person with dementia and their study partner at home to assess their current social abilities using detailed questionnaires and assessing their responses to videos. At 4 and 8 months following the initial visit, participants will be contacted on the phone for another questionnaire and the full tests will be repeated after a year with another home visit.

What motivates you to work in research?

I became a dementia research nurse as I know people with dementia and their families have a really hard time and I want to make a difference in people’s lives. Alzheimer’s is a disease still without a cure and there is a lot of misunderstanding about the condition. As a research nurse, I have the opportunity to make a difference not just to individual patients and their families, but potentially to all people with dementia. It is an exciting field to work in, and I am constantly amazed by the generosity of time from our research participants.

What would you say to people about considering whether to take part in research?

People taking part in research provide valuable knowledge to help people live healthier and better lives now and in the future. Research helps improve health and social care, and can help advance science to find new cures and better treatments for future generations.

We have strict rules about research in the UK. It is important to us that anyone who is involved is treated with respect. People who’ve participated in research often say that they felt well cared for and had a dedicated contact within the research staff team to help them feel involved and informed.

If you are offered the chance to take part in a research study, please look carefully at the information and consider if it is something you may find interesting. You might learn more about the condition and make a difference to other people now or in the future. My advice would be to ask lots of questions until you completely understand what taking part would mean for you and your family. If you do join a study, it is completely voluntary and you can always change your mind.

Talk to your healthcare professional about taking part in research or search for studies seeking volunteers at Be Part of Research.

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Published: 23 January 2024