Ann Pascoe’s husband Andrew had always been a gentle, mild-mannered man.
So when he was diagnosed with dementia seven years ago, she expected him to be forgetful and become more dependent. What she was not ready for were his aggressive outbursts.
Andrew, 65, a former naval engineer, had always had a caring nature. “Yet after he developed dementia, from time to time he would get very agitated – sometimes he would throw things – for no reason,” says Ann, 67, a businesswoman.
“He might come in from the garden and just suddenly shout: ‘I’m not doing it any more,’ and slam the door and storm up upstairs.”
“It was incredibly upsetting and I was permanently walking on eggshells but thought that this must just be part of the dementia.
I was getting to the stage where I felt I couldn’t cope any more.”
Then, last August, she discovered there was more to these outbursts than she realized. Andrew, who tries to lead as independent a life as possible, had fainted at the bus stop in the village near where the couple live in Helmsdale, Scotland.
An ambulance was called and a doctor found Ann’s details in Andrew’s wallet and called her. “He said Andrew seemed very confused and was mentioning something about pain but wasn’t making much sense,” she recalls.
In fact, Andrew had been diagnosed with neuropathic (nerve) pain in his legs two years before. “He’d tried a variety of painkillers and said they didn’t work, but now I wonder if he took them,” says Ann.
“He had said he was hurting from time to time but as he had not been very specific I had not taken it that seriously.”
The doctor suggested Ann keep a ‘pain diary’ for her husband for two weeks, getting him to rate his discomfort on a scale of one to ten at various times of the day. “When he was sitting down he said it was a two out of ten; when he walked in the garden it was as high as a nine,” she says.
From time to time he would get very agitated – sometimes he would throw things – for no reason
Analyzing the diary, the doctor realized Andrew was in considerable pain a lot of the time and prescribed him Gabapentin, an epilepsy drug that interrupts the transmission of pain signals in the brain.
This time Ann watched her husband like a hawk to ensure he took it and, sure enough, the aggressive outbursts all but stopped. “Now I realize that his agitation was not the dementia – it was a result of his pain – he just didn’t know how to tell me,” she says.
Andrew told Ann he often couldn’t find the words to explain many everyday events – including his levels of pain.
The couple’s story highlights an extraordinary new understanding of the behaviour of dementia patients – and could help transform their, and their carers’, lives.
For a growing body of research has found that many of the symptoms often written off as ‘just a part of dementia’ – agitation, aggression, withdrawal or repeatedly asking for attention – are actually untreated pain.
Indeed, pain is the biggest cause of such symptoms – including even language breakdown – according to a recent review in the journal Clinical Intervention In Ageing.
However, the authors concluded that while pain is often the underlying cause of some behaviour, patients may be given ‘inappropriate’ sedating medication instead.
It’s not that dementia causes pain, but the 800,000 people in this country with the disease tend to be older and therefore more prone to aches and pains. Many patients lose the ability to talk, but even those who are coherent may struggle to find the right words to describe their discomfort.
The problem is that not all health professionals or carers are yet aware of this, so they dismiss changes to behaviour such as becoming agitated as part of dementia, says Pat Schofield, professor of nursing at the University of Greenwich.
“Historically, we used to believe that people with dementia do not feel pain because of the effects that their illness has on the brain but in recent years we realised that is not so,” she adds. “They are just as likely to suffer with pain but they cannot express it.”
“Think how frustrating that must be – you can’t find the words to tell someone, ‘I’m in agony,’ or, ‘This is hurting,'” says Prof Schofield.
Scientists from King’s College London and Norway found that when they gave daily pain treatment to patients with ‘significant behavioural disturbance’, their agitation was ‘severely reduced’.
Their study, published in the British Medical Journal in 2011, said that properly treating pain could reduce ‘unnecessary prescriptions for psychotropic drugs’ – drugs such as antipsychotics.
The study found three-quarters of dementia patients in hospital displayed agitation or aggression and that ‘staff are still using sedative and neuroleptic drugs.
For years, agitated or aggressive dementia patients have been given antipsychotics, which act on the brain and sedates them. In 2009, a government-funded report found that 180,000 dementia patients in England were on antipsychotics, yet it estimated as few as 36,000 were getting any benefit.
Furthermore, the drugs carry a risk of significant side-effects – the report suggested they were linked to 1,620 strokes a year and an additional 1,800 deaths.
“In the past, there was a tendency to think, ‘Oh dear, this patient is agitated, we better give them a chemical cosh,’ rather than think, ‘What could be causing this?'” says London GP Dr. Sarah Jarvis, who contributed to a recent report on dementia and pain.
“Then there were anxieties about the drugs’ side-effects, and we are using them less and less.”
However, prescriptions are still too high. A two-year study completed last April by University College London and funded by the Alzheimer’s Society found that three-quarters of dementia patients in hospital displayed agitation or aggression and that staff are still using sedative and neuroleptic drugs to manage these. The problem, suggests Dr. Jarvis, is that while “the message has got across that we should be prescribing fewer antipsychotics, still health professionals are not necessarily thinking of pain as a cause [for challenging behaviour].”
Many dementia patients end up in care homes. Dr. Jarvis says she often finds staff are unaware of the link between agitation and pain.
“I’ve lost count of the number of times that I have had a dementia patient not on antipsychotics and the care home will say to me, ‘But they seem to become agitated.'”
“I will suggest pain as a cause and they will say, ‘No, it can’t be – they aren’t agitated all the time.’ But the point is, pain does tend to come and go.”
Andrew told Ann he often couldn’t find the words to explain many everyday events – including pain
A recent report by Napp Pharmaceuticals found that a third of independent care and residential homes had not reduced their antipsychotic use.
Furthermore, nearly 40 per cent said fewer than a quarter of their dementia patients suffer with pain, yet surveys (such as one in Clinical Intervention In Ageing) have found 50 per cent of dementia patients suffer with regular pain and that the figure will be higher for those in care or residential homes.
“A better awareness of pain could transform the care of dementia patients,” says Dr Jarvis. Yet often carers like Ann have to deal with this challenging behaviour unaware that their loved one’s outburst might be easily cured with pain medication.
“Every day I see carers who are at the end of their tether and come in and ask for tranquilizers to help with their loved ones behaviour,” says Dr. Jarvis.
“But we have to say to them first: ‘We need to try and find out what is causing this behaviour.'”
Now there is a move, backed by the Alzheimer’s Society and other campaigners, to better identify and treat people with dementia who are in pain.
“All too often people with dementia suffering from unrecognized pain are mistakenly deemed to be aggressive, uncooperative or withdrawn,” says Dr. Alison Cook, of the Alzheimer’s Society.
“It is vitally important that care professionals have the tools and training to meet the complex needs of people with dementia.”
It’s a move welcomed by Ann.
“We carers need to be told what to look for, what to expect,” she says. “I am sure there will have been people who will have been caring for loved ones who will have thought they can’t cope and sent their loved one off to a home when actually had the pain been treated they could have carried on.”
“I’m relieved not just that Andrew is less agitated but also that he has a better quality of life. I plan to care for him for the duration of his illness.”
“A year ago, I was thinking, ‘I hate this.’ Now I feel as if our life is back on track.”