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Case study: ‘I would encourage everyone to take part in memory research!’ - Anne on how she founded the JDR Advocates programme in the East Midlands

Anne Chafer talks about how she founded the JDR Advocates programme and why it matters

Anne Chafer has spent the last 14 years working in research where she was the inspiration behind founding the Join Dementia Research (JDR) Advocates programme in the East Midlands. Anne has a background in Psychology, where she first found her passion for research.

Anne joined the newly formed Research Team within Lincolnshire Partnership NHS Foundation Trust (LPFT) as a Clinical Studies Officer where she was able to meet new people and have interactions with patients and the public. Anne states that she learned something from every person she met, and her role in research was her ‘way of helping people.’ 

Dementia describes a set of symptoms that over time can affect memory, problem-solving, language and behaviour. It currently affects more than 850,000 people in the UK. However, the public’s perception of dementia is largely focused on older people, and does not showcase its impact on a variety of different groups. Lincolnshire shows a high percentage of young onset of dementia, often due to other neurological conditions.

There is currently no cure for dementia, yet research offers hope. For research to make progress, we need more people with and without dementia to take part in vital studies.

‘Every medicine, therapy, and treatment has been developed through research. Change doesn't happen overnight, but research is the only way we are going to find a cure.’

The JDR Advocates (JDRA) programme serves as a way to raise awareness of dementia research and increase its funding. Only through research can we understand what causes dementia diseases, develop effective treatments and improve the care of those living with dementia.

Within her role, Anne was given the responsibility of overlooking dementia research within the county. During Dementia Action Week 2022, the LPFT Research Team decided that they needed a ‘wider footprint’ of people signing up to the Join Dementia Research (JDR) service. This is a National Institute for Health and Care Research (NIHR) service where you can register your interest in taking part in vital dementia research. To facilitate this, Anne proposed the JDR Advocates programme, which would include organisations and professionals promoting JDR and research nationally. Anne states that ‘health and social care professionals are best placed to spread the word about the importance of research.’ To date, 30 organisations have signed up to be part of the JDRA programme, each with their own representative. 

Frequent discussions are held with JDRA which include representation via conferences, newsletters, and a WhatsApp group. The JDR Advocates programme has a wide reach, with other regions now adapting the same process. This serves as a platform to allow constant discussions around dementia research. 

Since Anne’s retirement from research, the JDR Advocates programme is now led by Lyn Charles. The success of the programme is testament to the efforts of the LPFT team and their dedication to improving research opportunities in the East Midlands. 

Anne has also helped to develop a training course for care home staff to increase knowledge of dementia and research. She is passionate about empowering those with dementia by challenging the public’s preconceived stereotypes. Anne instead focuses on the person and strives to give them a voice. 

When asked what she would say to someone who is thinking about taking part in research, Anne states: ‘I would encourage everyone to take part in memory research and go for it! The research team will give you quality time and not put any pressure on you. Most importantly, you can withdraw at any time.’ 

Research gives a person access to services that they would not otherwise be given. 

Anne retired from research in 2022, and is now a Healthcare Support Worker, specialising in rehabilitation. 

If you would like to help advance dementia care, diagnosis and treatments, visit our Join Dementia Research website to find out more information.