Marie Wynne cares for her husband, Denis, who has dementia, in their home in Stillorgan, Co Dublin. Overall, she manages pretty well and pays particular attention to his medication.
So when Denis was prescribed anti-psychotic medication last December, she waited until their adult children had returned to their homes after Christmas to start him on the medication.
“The doctor said he was agitated,” she says. “ Now, I called it restless but I started him on the medication anyway.”
Three days later, while the Wynnes were out with a “Living Well with Dementia” group, Denis collapsed and was taken by ambulance to St James’s Hospital. Tests at the hospital could find no reason for the collapse.
Marie Wynne is convinced that the anti-psychotic medication caused his collapse.
“Denis has vascular dementia and atrial fibrillation [irregular heartbeat, which can increase the risk of stroke or heart failure] and I discovered that these anti-psychotic medications are contra-indicated for that. I also discovered that they are very powerful drugs that can be of value if someone becomes violent and aggressive. But Denis wasn’t a suitable candidate.”
She says Denis has the occasional aggressive outburst, which she’s not surprised about as when he was younger he was very active: “He played rugby. He was a sales director in a company. He was always building or making something at home or working in the garden.” She is concerned that these anti-psychotic medications are prescribed too quickly for people with dementia who become agitated.
Paddy Sheridan has been the full-time carer of his partner with dementia for five years. His partner was also prescribed an anti-psychotic medication to help reduce agitated behaviour.
“I found that it led to more sleepiness and lack of co-ordination during the day,” Sheridan says. “So I stopped the daytime tablet and continued with the night-time one so we could both get a better night’s sleep.”
Jacqueline Keane, whose husband is now in a nursing home, believes that the use of anti-psychotic medications led to serious deterioration in his condition.
“When my husband, John, was still at home, he was put on anti-psychotic medication because he became aggressive sometimes. But when I saw how they impacted on his ability to walk, talk and feed himself, I took him off this medication.”
However, when John Keane was taken to hospital, following an episode of extremely agitated behaviour, he was again prescribed the same anti-psychotic medication.
“I begged them not to put him back on these drugs,” his wife says. “I know he was difficult to manage, but again after 1½ days on these drugs, he couldn’t walk, talk or feed himself again. Yet they continued to give them to him for seven weeks.”
John was transferred directly to a nursing home from hospital and “now totally incapacitated a result of these medications”.
These three carers are keen to speak out about the use of anti-psychotic medication for their spouses and partners so that other family carers can become aware of the potentially negative effects. Marie Wynne, Paddy Sheridan and Jacqueline Keane also also took part in De-Stress, a study to access the health and wellbeing of spousal carers of people with dementia in Ireland.
At the June launch of the study in Trinity College Dublin, one woman spoke about her battle with medical staff regarding the use of similar anti-psychotic medication for her husband.
“It was the most severe aspect of the whole disease. I felt like I was fighting a fog and a wall of medication, which was isolating my husband more and reducing his physical capacities as well. There were so many medications that we fought against, but we felt like we were interfering. The doctors will admit that none of them are specifically for Alzheimer’s, but they are believed to keep him safe.”
Sabina Brennan, director of the Neil Memory Research Unit at Trinity and lead researcher of the De-Stress study, strongly believes that there are other ways to minimise agitated behaviour other than putting people in chemical straightjackets. "Giving people with dementia anti-psychotic medication is a violation of their human rights," she says.
Brennan herself had personal experience of the use of these medications when her mother, who had dementia, was in hospital.
“I used to ask the medical staff to call me if my mother was confused and walking the corridors,” she says. “I would go there as soon as I could and calm her down. But sometimes, the medication had already been administered by the time I’d arrive.”
At the study launch, family carers called on the Alzheimer Society of Ireland to campaign against the use of anti-psychotic drugs for people with dementia.
Tina Leonard, head of advocacy and public affairs at the Alzheimer Society, says the use of such medications should be a very last resort.
“It is crucial that local GPs, pharmacists and medical professionals regularly consult with people with dementia and their family members and carers over any medical treatment for their loved ones,” Leonard says. “We would encourage any family member and carers who are concerned over medical treatments for their loved ones to voice their concerns immediately.”
Adds Ann Twomey, the Alzheimer Society's advocate for carers: "You are in charge of their medications. It's very important for the carer to inform healthcare professionals about the tablets that agree with their spouse and the ones that don't. It's a good idea to keep a log of medications and show this to the doctors."
Dr Shaun O’Keeffe, a consultant geriatrician at University Hospital Galway, has spoken out about the “unnecessary use of potentially hazardous anti-psychotic drugs” in nursing homes.
Treatment of dementia patients with anti-psychotic medication over a three-month period can lead to death in one in 100 cases, according to O’Keeffe. “One in 60 people will have a stroke if regularly prescribed these drugs. Chemical restraint and the misuse of psychoactive drugs is a violation of personal and bodily integrity and a breach of article three of the European Convention on Human Rights.”
To further complicate the picture, many anti-psychotic medications are not licensed for use with people with dementia but are still administered. “They are unfortunately being used a first rather than a last resort in too many cases – particularly in hospitals which don’t have specialists in dementia care,” adds O’Keeffe.
Prof Brian Lawlor, old-age psychiatrist at St James's Hospital in Dublin, agrees that the use of anti-psychotic medication for people with dementia is widespread and needs to be curbed, although he says the medication is beneficial for a small proportion of patients with dementia who might harm themselves or others.
“The message is to start low [dose] and go slow and review the medication every four to six weeks,” he says. “If there are side effects such as problems with sedation, swallow and mobility, then the person should be taken off it.”
Lawlor believes there continues to be inappropriate and excessive use of anti-psychotic medications for patients with dementia in nursing homes and acute hospitals.
“It’s a question of education and training,” he says. “Sometimes a person with dementia can be in pain or distressed about being in a strange environment and he/she isn’t able to verbalise what’s wrong. Even for cases of delirium, the cause can be an infection, pain or constipation.”
Studies find that hospital staff were often focused on the acute medical or surgical reason that led to hospitalisation of the person, rather than the overall care of the person with dementia.
Most healthcare professionals agree that dementia awareness training would go some way to dealing with overuse of anti-psychotic medication for people with dementia who seem agitated. And if everyone was more aware of looking after the basic needs of a person with dementia first, perhaps the medical profession wouldn’t be so quick as to prescribe anti-psychotic medication.
PANEL: Widening the focus – ‘We need to be able to put ourselves in their shoes’
A wider focus on the ongoing care of people with dementia can reduce the use of anti-psychotic medication prescribed for agitated behaviour. And the active engagement of carers of people with dementia in their hospital care is extremely important, according to the Irish National Audit of Dementia, which was published in 2014.
Firstly, medical staff are often more focused on the acute medical or surgical reason that led to hospitalisation rather than the overall care of the person with dementia. Secondly, people with dementia can experience difficulty having their needs understood and met in acute hospitals, so a family member is often more familiar with their personal needs.
Dementia awareness training for all hospital staff is also considered to be crucial for the holistic care of patients with dementia.
“Three years ago we introduced dementia awareness training for everyone from porters to doctors and nurses,” says Prof Brian Lawlor of St James’s Hospital. “There is still a need for more education and training to manage and support people with dementia. We need to be able to put ourselves in their shoes and have an empathic understanding of what is going on for them.”
Specific training for care attendants would also help ensure the needs of people with dementia are not neglected in the busy environment of an acute hospital.
In the absence of family members, care attendants can also ensure patients with dementia are kept away from chaotic or stressful zones and check that their basic needs for food, water, going to the toilet and pain relief are always considered before, during and after receiving treatment.