The trauma faced by stroke carers

By Jane Elliott
Health reporter, BBC News

Carers can experience acute stress

When Anne Fenton's partner, Anthony Dodd, had a stroke she felt her world had caved in.

While he was ill, Anne found herself unable to eat or sleep properly.

Now scientists say Anne's experiences are not unusual and that carers like her can be badly affected by a loved one's stroke and some even develop post-traumatic stress disorder (PTSD).

Traumatic

Doctoral research student Adam Noble and colleagues at Durham University (in collaboration with the Newcastle General Hospital and James Cook University Hospital, Middlesbrough) studied 86 stroke patients and each one's main carer over four years.

Carers were over three times more likely to experience PTSD than the general population.

We know the actual wellbeing of the carer has significant implications for how well the patient recovers Researcher Adam Noble

Mr Noble said an explanation might be that despite their obvious needs, the carers were themselves getting little or no help or support.

"What is concerning is that these significant others receive little medical attention as they often act as informal carer.

"Yet their psychological health could affect the levels of care they are able to give and reduce the patient's chance of a good recovery," he said.

Mr Noble said the experience of having a loved one suffer a stroke could be as traumatic as experiences of war.

Support needed

He said carers often suffered real and tangible stress - that can manifest as nightmares, palpitations and sweats - which they had not been taught how to cope with.

"We know the actual wellbeing of the carer has significant implications for how well the patient recovers.

"We really need to know how to better support these people," he added.

Dr Joanne Knight, director of research and development at the Stroke Association, agreed that more help was needed for carers.

"Whilst we cannot generalise these findings or presume that one would find PTSD in the family and friends of patients with other illnesses, psychiatry already recognises that the witnessing of or learning of an event that involves threat to a loved one can cause PTSD.

"This research further confirms that more support is needed for the carers of stroke survivors to reduce their likelihood of developing PTSD."

It was terrible looking after him. If it hadn't been for my family's support I would not have managed it Anne Fenton

Anne, from Consett, County Durham, took part in the study although, along with the others, she has not been told by researchers yet whether she officially had PTSD because the results are still not in the public arena.

However, she said that she struggled greatly during Anthony's illness and received little help and advice.

This was despite being a trained carer by profession.

She said that she found caring for her own partner a completely different experience to caring for others.

"It has been a long two years since he got ill - a real struggle," Anne said.

"I never ate or slept while he was in hospital, and when he came home I thought it would be better because at least I wouldn't have to go to the hospital.

"But when he came home I still couldn't eat or sleep properly for the three months he was recovering.

"I would have a couple of hours if he was in bed, but I would hear him tossing and turning.

"It was terrible looking after him. If it hadn't been for my family's support I would not have managed it. I was offered no support or information from anyone else."

Anne said her whole life had changed. She now works only part-time so that she can care for Anthony, who still needs some help.

She said that Anthony's personality had also changed, making him a "completely different person" to the man she married, and that this was still causing her stress.

"He is a totally different person, like a Jekyll and Mr Hyde - his whole personality changed.

"He had been such a happy chappy, who would not say boo to a goose and was not very bad tempered, but he is now," she said.

Adam Noble?s findings were presented at the UK Stroke Forum conference hosted by The Stroke Association.