DRUGGING THE ELDERLY
Fears rest homes using ‘dangerous’ anti-psychotics to subdue dementia patients
Susan Millar says it’s been a ‘‘constant battle’’ to convince rest home staff not to give anti-psychotic drugs to her husband of 50 years. David Millar, 82, an historian and former assistant director of the New South Wales Art Gallery, was diagnosed with vascular dementia and Parkinson’s disease about 12 years ago. He has been in five rest homes for respite and permanent care and now lives in a home in Dunedin.
As her husband’s power of attorney, staff at the homes would ask Susan for her consent to give David anti-psychotic drugs such as risperidone on occasions when he would become agitated and lash out.
But Susan, 74, a retired high school science department head who recently completed a doctorate, was shocked when she researched the use of antipsychotics for people with dementia.
The powerful drugs were developed to treat schizophrenia, but for decades have been used to sedate people with dementia in nursing homes.
They can almost double the risk of death in such people, usually through heart failure or infection, according to studies.
Not only that, but some of the drugs are particularly risky in cases where the person also has Parkinson’s disease.
Susan says staff would often suggest medication – which has to be prescribed by a clinician – rather than alternatives such as music or exercise therapy.
She says David’s main problem is boredom – he craves social interaction.
‘‘It’s just been a constant battle to stop him being put on drugs... and to get enough stimulation.
‘‘There’s not enough interaction, there’s not enough activity because there aren’t people there who are trained to know how to do it and the rest homes say they haven’t got the resources and you’ve got this medical culture, so this is what you do.
‘‘Once you get what’s called aggressive behaviour – and I hate that word because it implies an evil intent to harm someone, when we’re talking about very vulnerable, very sick people – I would say probably it’s much more convenient to have everyone compliant and just sitting there and doing nothing.’’
Concerned about David’s distress and the safety of staff, she eventually agreed to him taking a second-generation anti-psychotic called quetiapine, often used in rest homes in small doses.
‘‘It’s considered not to be so harmful,’’ she says. ‘‘They’re all risky but sometimes ... when a person with dementia gets to a certain stage it can be torture for them and there’s nothing else to give them really.
‘‘David is at a stage of his disease ... where I just want him to be comfortable – I don’t want him to be in agony or have a miserable time.’’
David remains on quetiapine, but Susan says anti-psychotics are not always effective and she agonises over what is a complex and fraught issue. She says more information needs to be available to people in her position.
‘‘I’ve found this so dreadfully difficult. I’ve tried to find all the evidence – probably from the point of view of the rest home, I’m a bit of a pain.
‘‘But one of your rights under Health and Disability [legislation] ... is to ask these questions. I want to know what the side effects are, what the possible risks are – all those sorts of things. Those sorts of discussions I’ve found really quite difficult to have.’’
It’s a conversation that more and more families are having, as the number of people with dementia rises rapidly.
There are about 70,000 Kiwis living with the disease and that is expected to almost triple by 2050.
‘‘David is at a stage of his disease ... where I just want him to be comfortable – I don’t want him to be in agony.’’ Susan Millar
There’s no data on the number of people with dementia who are being treated with antipsychotics but, overall, elderly New Zealanders make up a sizeable chunk of those taking the drugs.
This is thought to be partly because of the ageing population, and also because people with conditions such as schizophrenia are living longer as care improves.
Risperidone is the only antipsychotic approved for treating the symptoms of dementia in New Zealand – the others are prescribed off-label and come with warnings from Medsafe about increased mortality risk.
Figures provided by Pharmac show that over-70s are far and away the largest age band taking quetiapine, risperidone and the older generation anti-psychotic haloperidol.
Ministry of Health data reveals that dispensings (including repeats) of anti-psychotic drugs to people aged 65 to 99 rose from 248,000 a decade ago to 426,443 last year – a 71 per cent increase.
The number of people in that age bracket taking the drugs rose 66 per cent from 20,718 to 34,558.
Overall, those numbers are in line with the ageing population, but some drugs have been particularly popular – quetiapine dispensings rose 160 per cent, olanzapine 150 per cent and clozapine 216 per cent for the elderly.
The Health Quality and Safety Commission says medication can be considered a ‘‘chemical restraint’’ when used to manage a person’s behaviour or restrict their freedom of movement, and non-pharmacological approaches need to be the first method of treatment.
Recent studies by the commission found the use of psychotropic agents increased with age – on average 6.7 per cent of people aged 85 and over received an anti-psychotic.
The drugs are associated with adverse effects in the elderly including impaired functional ability, agitation, confusion and
falls.
‘‘Given the poor efficacy of anti-psychotics in dementia care, and the evident harms associated, prescribing of these medicines should be reassessed,’’ researchers for the commission said in an article in the New Zealand Medical Journal.
Catherine Hall, chief executive of Alzheimer’s NZ, says antipsychotics can make people sleepy, unsteady on their feet and reduce their interaction with others.
‘‘We are concerned that too often they’re the first choice response to a difficult or challenging situation, when a better option could be to think about staff education and training, staff numbers, think about what is happening for that individual – are they distressed, in pain, do they need to go for a walk, do they need human interaction?’’
Dr Al Power, an American geriatrician, author and educator who has held seminars in New Zealand, says anti-psychotics are overused in rest homes around the world.
‘‘I think they should be the rare exception, and that’s certainly not the case,’’ says Power, whose book Dementia Beyond
Drugs explores alternatives to dealing with the symptoms of dementia.
‘‘You may be upset, distressed, striking out, saying things that don’t make sense, but to treat it chemically the way you treat delusions of schizophrenia – it’s a different thing.
‘‘To me, it’s been a fallacy all along that a person will respond to a pill like this. They basically don’t work and they’re dangerous.
‘‘For some reason we use them because when people are quieter we say they are better – but quieter isn’t always better, it can just be drugged.’’
Power rejects the argument that drugs are needed in cases where a person with dementia has lashed out at carers.
‘‘I think to blame the person and the dementia instead of understanding the care system may be the cause of the problem.’’
Instead, carers need to understand the patient better.
‘‘When you focus on improving different aspects of wellbeing, like having some choice and control, having a feeling of security, having meaningful and consistent relationships with caregivers ... you actually get to the root causes of a lot of this distress and can attend to it without having to use any medication.’’
Dr Ian Hosford, a consultant psychogeriatrician to the Hawke’s Bay District Health Board, says while anti-psychotic drugs are probably used too much with dementia patients, it’s unrealistic to say they shouldn’t be used at all.
‘‘I think some people do benefit from these medications, it can make a huge difference in a positive way for many patients,’’ says Hosford, who contributed to a best practice guide for the use of anti-psychotics in dementia.
Hosford says drugs should be a ‘‘second-line approach’’ for dementia patients who are restless, confused or agitated, after trying other therapies and interventions.
‘‘The message we’re trying to push is that if you are going to use an anti-psychotic, don’t use it long term,’’ he says.
‘‘For example, I saw someone the other day who was highly aggressive and agitated in a rest home and I put him on risperidone – I’ll go back in two weeks’ time to see how it’s going.
‘‘You don’t just put them on risperidone and walk away – I think that was part of the habit even 10 years ago.’’
Hosford has seen the adverse effects the drugs can have.
‘‘I saw a person recently and I put her on this tiny dose of risperidone and God, she just completely shut down within a few days and the family were totally shocked.
‘‘We stopped the drug and she went back to how she was. It was a shock to all of us – it’s not what we’re trying to achieve.’’
Hawke’s Bay man Brian McGurk saw a similar effect with his wife, Averill, who went into care in November, 2018.
She’d earlier been in hospital for an infection and doctors there gave her some tablets to calm her in the strange environment.
When she moved to the rest home, staff said all medication would stop and there’d be a fresh assessment.
‘‘As it turned out, she was still being given the same tablets at the rest home that the hospital were giving her, but we didn’t know until much later.’’
McGurk says after a couple of months, Averill lost all of her energy, ate less and was sleeping all the time.
‘‘It was a very deep sleep, you couldn’t wake her. One time I went in and thought she was dead. I really thought this was the beginning of the end.’’
McGurk says his children began investigating and found his wife was being given a regular dose of haloperidol, marketed under the trade name Haldol and used in the treatment of schizophrenia and Tourette syndrome.
‘‘They found all these articles on the internet about how haloperidol is given to people with dementia when it probably shouldn’t be and that it’s used for anxiety.
‘‘One thing about Averill is that she was seldom anxious. Her dementia was pretty severe but for the last few years she was almost always content, very chatty and funny.’’
The family raised their concerns with Averill’s doctor ‘‘but she didn’t seem too concerned’’.
‘‘I asked her why Averill was on it and she just said the ‘hospital put her on it’,’’ McGurk said.
‘‘I felt she thought we were just trouble makers so we made sure the haloperidol stopped and changed GPs.’’
McGurk says rest home staff asked if they could use the drug when they felt Averill needed it.
‘‘I felt we needed to be pretty firm about it so they couldn’t just use it if they thought it’d make their lives a bit easier so we said ‘no, no haloperidol whatsoever’.’’
He noticed an immediate change in his wife.
‘‘She got her strength back over the next few weeks and before too long she was back to normal – chatty, laughing.
‘‘I’m convinced it was the haloperidol that knocked her out like that and if they’d kept giving it to her ... it would’ve killed her.’’
McGurk enjoyed several more months with Averill, before she died peacefully in September.
Susan Millar says it’s difficult to know how much of the aggressive behaviour her husband, David, has shown in rest homes is because of the disease and how much because of boredom.
He’d been unable to remember any incidents where he’d lashed out at staff and later described the confusion he felt as terrifying.
She says being a carer in a secure dementia unit is a complex and difficult job but so is making decisions for a loved one.
‘‘I think this is an area of dementia care that needs to be discussed and the public – at the very least people in my position – need to have access to evidencebased information about antipsychotics to help them to make choices in difficult situations.’’
‘‘To me, it’s been a fallacy all along that a person will respond to a pill like this. They basically don’t work and they’re dangerous.’’
Dr Al Power