Families living with dementia in Surrey and Sussex are being asked to take part in a major new programme, the first of its kind in the world, to help train the healthcare professionals of tomorrow and improve the way that people with the illness are cared for by health services.
Time for Dementia will involve 800 medical, nursing and paramedic students spending regular time with families affected by dementia over two years. About 200 families in Surrey and Sussex are currently taking part and the hope is to recruit at least 400.
The programme is being delivered by Brighton and Sussex Medical School and the University of Surrey in partnership with the Alzheimer’s Society and the NHS. It is funded by Health Education Kent, Surrey and Sussex which is part of Health Education England, the body that funds undergraduate training of healthcare professionals. The other NHS organisation taking part, alongside Sussex Partnership, is Surrey and Borders Partnership NHS Foundation Trust.
Students will visit a family three or four times a year for up to two hours each time. The idea is to improve knowledge, attitudes and empathy towards people with dementia and their carers.
The benefits to students and families will be comprehensively evaluated. Feedback from the 130 families and the 260 students who have taken part in the pilot phase of the project has been highly positive, describing enjoyment of the student visits and new insights from the sharing experience.
Time for Dementia builds on small scale projects carried out in the US. However, these have been optional rather than a core component of the curriculum. They have also only been run in medical schools.
Families interested in taking part can sign up online at Join Dementia Research or by contacting the Join Dementia Research helpline at Alzheimer’s Research UK (0300 111 5 111) or Alzheimer’s Society (0300 222 1122).
Over 850,000 people live with dementia in the UK and 25 million have a friend or family member with the condition. Sussex and the South East has the highest proportion of older people of any area in the UK. Across Sussex over 25,000 people currently have dementia and this is set to rise to 30,000 over the next 10 years.
Time for Dementia is led by Professor Sube Banerjee, Director of the Centre for Dementia Studies at Brighton and Sussex Medical School / Sussex Partnership NHS Foundation Trust, who says:
"We want to help healthcare students understand what it is really like to live with a long-term health condition like dementia. They will learn about what it is to be old and ill in society, and how people adapt and manage living with serious long-term illness over time. This will help build compassion and understanding. It will help equip them for their future careers as health professionals and help us provide better care.
“This is the most ambitious programme of its type anywhere in the world, and we envisage that it will change the way in which healthcare students of the future learn about dementia.”
Sophie Mackrell, Alzheimer’s Society Project Manager for the Time for Dementia programme, said:
“We think it is of the utmost importance to involve people with a diagnosis of dementia and their carers or family on the training of these trainee healthcare professionals. This programme gives the students a chance to learn from the experts on dementia – the people directly affected by the condition. It’s a good way for them to gain knowledge first hand of what it’s like living with dementia and the challenges they have to overcome. There are more than 43,700 people living with dementia in Surrey and Sussex and it’s crucial that more people in the field of healthcare are aware of the condition.”
Eddie Wood, 70, was diagnosed with dementia four years ago. He said: "I'll do anything I can to help bring about changes. Every single person who has dementia is different and they need to be treated that way. When anyone with dementia goes into hospital they are out of their comfort zone. Time for Dementia is so important because if doctors and nurses can have a better understanding of people with dementia and their needs their stay in hospital and their overall treatment is going to be much better."
His wife Mary, 68, added: "I want change, not just for Eddie, but for all people with dementia. We will do all we can to help the health professionals of tomorrow get a better understanding of what living with dementia is like. Our experience of Time for Dementia has been so positive. I'd really encourage other families to get involved and help us make a difference for the future."