Living with Dementia May 2008

You might expect medical students and trainee psychologists to have a thorough grounding in dementia. In fact, despite five years of medical study, just a few hours are spent on dementia training

Training in dementia care is sorely lacking in the UK. Medical and psychology students may have some training in the physiology and biology of dementia, but the human side of the disease is largely neglected.

One carer and early member of Alzheimer's Society, Margaret Butterworth, decided to do something about this lack of training and many years ago established a group of carers to talk to medical, psychology and nursing students.

The group is known as CRAC Dementia (Council of Relatives to Assist in the Care of Dementia). Through her contacts at University College London (UCL), Margaret was invited to run carer training sessions for second-year post graduate clinical psychologists. Margaret ran the sessions for 15 years until her death five years ago.

Success

The training module proved so successful it is now in its twentieth year. In 1995, the group was invited to extend the sessions to medical students. Former carer Shirley Nurock now chairs CRAC Dementia. Shirley first met Margaret when her husband was diagnosed with dementia almost 20 years ago. Shirley says, 'I was given Margaret's name as my local contact by Alzheimer's Society. She passionately believed that carers were the people to advise on the kind of support they needed, and felt that they should be involved in the commissioning of services.'

These sessions are now an official part of the students' curriculum at the Royal Free & University College Medical Schools in London. The sessions for medical students take place in a lecture theatre each term, and psychology trainees have a half-day session once a year. Their aim is to demonstrate how families deal with dementia in real life, outside a clinical environment. 

Carers' stories

For example, one carer speaks about his experience of caring for his wife at home until she died, another about how she had to overcome bureaucratic obstacles to find the support she needed to look after her husband, who had fronto-temporal lobe dementia. One woman describes the effect of dementia on her family when her husband developed Alzheimer's in his fifties; their three children then in their early teens. One of the aims of the training sessions to medical students is to emphasise how doctors can be more supportive.

The presentations to clinical psychology trainees are followed by small group discussions, each led by a different carer. Shirley says, 'These group discussions allow us to reflect on our roles and the questions from the trainees bring into focus the problems we encounter and how we deal with them. Some students do find the sessions difficult to deal with and for some, it is the first time they have encountered close up the effects of dementia.'

Feedback

Feedback is an essential part of the training. Students and trainees complete evaluation forms following each session. One trainee wrote, 'The lecture left me feeling upset. But we are training to be psychologists. In our daily work, we will be dealing with upsetting stories and issues.' Another student questioned why the carers seemed so negative about their roles.

Shirley responds, 'It is overwhelming, having to care for a loved one with dementia. We tell the students how it is. Should we be putting a gloss on it and telling others how rewarding carers find it? We don't think so. For many of us, caring is, or has been, a traumatic experience and left us with psychological and physical scars. This is often reflected in what we say. Hearing these accounts may well be an introduction to harsh reality for students.'

Shirley says that while some carers find these sessions emotionally cathartic, others find them quite upsetting. 'For ex-carers, especially, it can bring back memories that they would rather forget. But we feel the students should hear our stories and we see this as one of the most worthwhile activities we undertake.'

Dr Joshua Stott is Course Administrator at UCL, and believes the programme has the potential to change clinical practice. He says, 'The students do hear from carers in their clinical settings, but in the training sessions it is from a different position. The carers can talk about their experiences not from a position of seeking help, but from a position of being educators.'

CRAC Dementia is looking to attract more carers in London by linking up with other carer networks. The group would like to see the concept of carers as educators and trainers rolled out in university medical schools across the country. Anyone interested in finding out more can email the group at crac.dementia@hotmail.co.uk