Dementia training puts care staff in residents’ shoes

Training care staff how it feels to have dementia has helped tackle overdependence on antipsychotic drugs, writes Rowenna Davis

Your vision is blurry because your glasses have been smeared with Vaseline; your sense of sound is muffled by earplugs, and your right arm is bound to your body, inhibiting your movement. You lean heavily on the stranger who leads you into the day room, but she’s talking over you, moaning to a colleague about her cigarette break. Out of nowhere, a spoon is pushed into your mouth full of slippery, tepid oats. You don’t like porridge, but if you refuse, you’ll be punished for kicking off.

This is the new experiential training programme being undertaken by staff at a leading independent healthcare provider of care homes. It is designed to give staff a sense of empathy with their residents who have dementia, and to stop staff handing out unnecessary medication. Those taking part in the training are ignored, and fake pills are pushed down their throat without consent. Sometimes a wet pad is left between their legs to give them a sense of what it is like to be incontinent.

Four Seasons Health Care is one of 45 organisations, including the Alzheimer’s Society, the Social Care Institute for Excellence and Bupa, that have joined the Dementia Action Alliance, a new coalition of public, private and charitable organisations that last week pledged to improve dementia care and reduce their use of anti-psychotic drugs. A report last year found that just one in five dementia patients benefit from the tranquillisers they were prescribed, and that this “chemical cosh” was responsible for an additional 1,800 deaths a year.

Best practice

Four Seasons chief executive, Peter Calverley, wants its experiential training to provide an example of best practice. Last year, he says, he even went on the training himself. “You’d be sitting at the dinner table and staff would be talking over you as if you weren’t there; calling you ‘love’ rather than by your name as if you’re not worth talking or listening to,” he says. “At age 30 you’d be humiliated by that kind of treatment. It’s rarely done deliberately, but we’re dealing with unintentional infantilisation.”

The training is part of Four Seasons’ Pearl project, which aims to achieve a cultural shift within its care homes. So far it has had impressive results with the 12 homes in which it has been piloted, seeing a 54% drop in the use of antipsychotic drugs, while communication among residents increased and staff satisfaction levels soared.

How best to care for 750,000 people in the UK who already have the degenerative mental illness and how to pay for caring for them, with that number projected to double in the next 30 years, is an increasingly difficult topic. The National Dementia Strategy published last year laid out a vision for early diagnosis and better quality treatment, but it was frank about the scale of the challenges.

As a former GP who witnessed the over-use of antipsychotics first hand, Calverley says he is keen to extend Pearl status from 28 homes to the rest of Four Seasons’ 190 specialist centres.

“I used to go into care homes [as a GP] to visit patients and it was shocking to see how over-sedated they [the residents] were,” he says. “Chemical tranquillisers were being used as the main tool for modifying stress reaction. You’d find clients being given medication without review; sometimes when it wasn’t necessary. I’ve seen clients who were so sedated they couldn’t talk in the middle of the day. Now things have improved, but Pearl proves you can always do more.”

Achieving Pearl status requires more than experiential training – a process that only takes six hours. Instead of talking about “challenging behaviour” and doling out medication, staff refer to “distress signalling” and spend hours observing residents in an attempt to “map” the real causes of their distress, which may be as simple as being sat too close to another resident. Instead of rolling their eyes at “wanderers” who pace up and down corridors, staff are trained to appreciate that residents are just looking for stimulus. Lighting and bedroom allocations may be switched to save distress, and dolls could be used to help give anxious patients the confidence to communicate.

Joanne Agnelli, project manager of Four Seasons dementia services team, recently completed the training and says that it has made a big difference: “We never act out of malice, but residents can become a bit like objects to some members of staff,” she says. “I remember putting bobbles in residents’ hair because I wanted them to look pretty, but if someone couldn’t express that they didn’t want it, we’d probably do it anyway. After the training the whole atmosphere and the way the staff treated the patients changed. They were excited about knowing more about the residents … it brought out their sense of empathy.”

Making a difference

The Pearl scheme is also making a difference to families. One resident’s relative at the Ashcroft Centre, Chesterfield, whose husband was bedridden for 16 months and unable to leave his bedroom to eat, says the change has been remarkable: “The home took him off night medication first, then daytime medication,” she says. “In a matter of weeks he was up and about, on our next visit we sat in the lounge eating breakfast together and he is much more awake and alert. The only medication he is on now is blood pressure tablets.”

Care services minister Paul Burstow, who has joined the Alliance, says that there is a “compelling case” for training like that offered by Four Seasons but he cannot guarantee that dementia services – which are partly funded out of the £8.2bn health and social area budget – will not face cuts. “We are determined that regardless of means you have a safe, responsible care that gives you dignity,” says Burstow. “If people choose to use additional resources to get extra quality that’s up to them”.

More than a third of residents with dementia in care homes are self-funded and that number is rising as the population ages and cash-strapped local authorities further ration financial support to meet older people’s care needs. Yet there is still a cost to the NHS. A constant supply of antipsychotic drugs costs approximately £2.50 a day per resident, according to Four Seasons, while the Pearl programme is 10 times cheaper to deliver.

If all of Four Seasons’ care homes cut their drug rates in half through the programme, staff estimate they could save £1.6m a year.

Calverley says: “Obviously the cost of medication should be a consideration for the NHS, but the real issue is the inappropriate use of sedation. Ignoring the real trigger factors for distress can lead to a real diminution of quality of life for patients that is much more important than the cost.”