Research

Learning from experience

This award-winning scheme is transforming attitudes for future generations by involving people affected by dementia in healthcare education.

Time for Dementia is a unique programme to help nursing, paramedic and medical students understand the experiences of people with dementia and those close to them. In order to give students a deeper appreciation of the challenges faced by people affected by dementia, students are paired with a person who has dementia and a family carer. The students visit them at home every three to four months over two years. It is hoped this will benefit students’ knowledge, attitudes and behaviour.

The programme is now part of the curriculum at Brighton and Sussex Medical School and the University of Surrey, and is being formally evaluated so that the outcomes for students and families can be measured. If it proves to be effective, this evidence could persuade more educators to take it up. All the people who take part are given questionnaires when they start. For the students, these assess their knowledge of dementia and their attitudes to people with the condition. For the people with dementia and their families, questionnaires measure the severity of symptoms, the person’s quality of life and the impact on carers.

These questionnaires are repeated as the programme progresses to measure the scheme’s impact. Satisfaction surveys are used to gather feedback and additional interviews have provided more detailed ideas for future improvements. Students have also been invited to participate in focus groups. To date, 1,100 students have been involved and there are currently 350 families signed up.

Dr Stephanie Daley, Clinical Research Fellow at Brighton and Sussex Medical School, is leading the evaluation. She says, ‘The feedback we’ve had so far has been very positive. Students say they have gained an understanding of the impact of the condition that they wouldn’t have picked up in the classroom or on a clinical placement.’

Preliminary findings suggest that the families taking part value the project too. Eddie Wood, who was diagnosed with mixed dementia four years ago, says, ‘It’s been brilliant. The beauty of this project is that people training to be doctors, paramedics and nurses are given an opportunity to go into the world of someone with dementia to learn what they really need.’

Alzheimer’s Society has played an important role in recruiting families to take part. Our involvement also means that families are supported and any issues raised during student visits are followed up.

Laura Green, the Society’s Network Manager supporting the project, says, ‘People’s experiences of healthcare vary widely depending on where they live or the attitude of the professionals supporting them. This programme is so exciting because people living with dementia themselves are changing the perceptions of others.’

We will have to wait until 2018 for the full results to be presented, but the programme has already won the Best Dementia Training Initiative 2016 award at the 7th National Dementia Care Awards and the LaingBuisson Award for Excellence in Training. With these accolades behind them, the team hopes to expand into more areas of Sussex and Kent over the coming years.