As many as 180,000 people with dementia are treated with antipsychotic medication in England every year, but only about 36,000 receive any benefit, according to the 2009 Time for action report commissioned by the Department of Health. Inappropriately prescribing these drugs can double the risk of death, treble the risk of stroke and leave people unable to walk or talk.
‘He reacted very badly to the drugs – one carer’s story
Gwen McFarland knows only too well the problems that can arise from the use of antipsychotic drugs. Her husband, Rodney, was diagnosed with vascular dementia and Alzheimer’s in 2007. He was put on medication to slow down the disease’s progress but his behaviour worsened and this led to him being prescribed an antipsychotic drug.
“He reacted very badly to it,” says McFarland. “It made him hyperactive – he was up all night, he wouldn’t go to bed, he became angry and agitated and was constantly rambling, it was very distressing.
“As a family we decided to take him off the medication after a few days, but because his behaviour had become so difficult he had to go into an emergency respite placement in a care home. It was only meant to be for two weeks, but without consulting me I found out that they had put him back on the same antipsychotic drug that had caused the problems with his behaviour in the first place.
“In the end the home couldn’t cope with him either and he was moved to a mental health ward at the hospital.”
Her husband stayed on the ward for six months and never came home again. From the hospital he was moved to a specialist dementia care home where he died in May 2012.
“According to my research he shouldn’t have been on that antipsychotic drug because he had a heart problem, emphysema and diabetes. The drug also possibly triggered the mini strokes which caused a rapid deterioration in his behaviour. The antipsychotics didn’t help him one bit, they just exacerbated the situation.
“Rodney would get anxious and frustrated because he didn’t know what was going on in his head. This is why some people with dementia become violent and angry, which is why staff need to be trained in understanding their behaviour.
“You need far more practical support in a care home for people with dementia and a longer period of observation before any drug intervention; they shouldn’t be the first port of call. It’s important that staff know the side effects they can cause and that there are alternative options.”
This has long been recognised as an issue within residential care and nursing homes which is why Alzheimer’s Society devised the Focused Intervention Training and Support programme (Fits) for care homes.
A randomised controlled trial of the programme carried out by the charity in 2003-4 showed its potential. Six nursing homes used Fits and six didn’t and, by the end, the proportion of people on antipsychotics in the intervention homes had fallen from 46% to 23% -– with no significant differences in the levels of agitated or disruptive behaviour – but rates had fallen from 49% to only 42% in the control homes.
Now, with funding of £100,000 each from the Department of Health and the HC-One care home group, the programme is being rolled out in 150 care homes across the UK. The reason a programme such as FITS is so crucial is because there is no mandatory dementia training for staff in care homes or nursing homes, says Alzheimer’s Society director of research Clive Ballard.
“Fits helps staff look at things from the perspective of the person with dementia,” he says. “By understanding dementia and the person behind the condition it will help them provide good quality, individually tailored care.
Antipsychotics ‘should be last resort’
“Often antipsychotics are used as a first line rather than a last resort and it is because of a lack of understanding about why behavioural problems occur.”
The University of Worcester’s Association for Dementia Studies (ADS) has been commissioned by Alzheimer’s Society to deliver the training and also to evaluate it. ADS has recruited two dementia practice development coaches who will train 75 existing care home staff from the 150 homes to become dementia care coaches. They in turn will be able to provide training for other care staff in the homes.
The 75 dementia care coaches will be trained at five training centres across England and Wales. Training starts this month (October) and will involve 10 days’ training spread over three months as well as ongoing supervision.
“The core training will be around person-centred planning and meaningful occupation,” says Simon Evans, senior research fellow at ADS. “It’s about seeing the person rather than the dementia.”
Changing staff attitudes
While the main aim is reducing antipsychotic drug use, smaller aims include changes in staff attitudes and goal planning to meet the social and emotional needs of people with dementia.
The programme involves 100 HC-One homes and 50 homes from smaller care home providers, including single-home operators.
“We want to see how the model works across a range of provider sizes,” says Simon Evans, senior research fellow at ADS. There will be different challenges depending on the resources available in each home”,
HC-One has chosen 50 dementia care coaches – though it is calling them dementia ambassadors – to take part – each of whom will cover two care homes. Additionally, all its 241 care homes will have dementia champions.
“FITS is a two-year research programme but we are seeing beyond that by creating specific roles of ambassadors and champions so that all the learning can be rolled out,” says Paul Smith, head of mental health and dementia care at HC-One.
“The government figures are scary and as the third largest care home provider then we will share some of that [problem]. There are cultures to change and we recognise that.”
Improve your practice
Community Care is holding a conference on safeguarding adults in care homes on 4 December, which includes a session on supporting residents who display challenging behaviour. Book now for a discounted place.
How dementia training in care homes can improve