Care home residents have been affected more by the COVID-19 pandemic than any other patient group; analysis of national datasets from 25 countries showed that care home deaths account for 30% of the total COVID-19 deaths.
The pandemic further exacerbated existing issues within the care sector — including underfunding, staffing issues and lack of training — but care homes have also had to contend with higher rates of COVID-19 infection after thousands of residents in the UK were discharged from hospital without being tested during the first wave of the pandemic.
The resultant pressure meant that progress previously made in terms of medication reviews and deprescribing inevitably came to a standstill and, in some cases, disappeared.
“The last thing we wanted to do was act as a vector for the infection,” says Graham Stretch, chief pharmacist at The Argyle Group in west London.
“So, then opportunities for those informal conversations with carers, or observing patients sat in a lounge, looking drowsy or sleepy or talking to relatives … were lost.”
However, as we emerge from the pandemic, it is only now the true impact is starting to be realised, particularly for patients with dementia and especially those living in care homes.
Research has revealed that prescribing of potentially harmful antipsychotic medicines to people with dementia increased significantly during the COVID-19 pandemic.
“We are aware there was an increase in antipsychotic medication prescribing in older people, especially in care homes, during the pandemic,” says Delia Bishara, consultant pharmacist, mental health of older adults and dementia, South London and Maudsley NHS Foundation Trust.
“This was usually so as to prevent patients with behavioural disturbances wandering around the care home and spreading the virus,” she added.
While deeply concerning, these findings have provided the opportunity — and the motivation — for positive change.
The harmful side of antipsychotics
Antipsychotic medicines are used to treat some of the more distressing behavioural and psychological symptoms of dementia, such as agitation and psychotic episodes; however, they have very limited, short-term benefits and can significantly increase the risk of serious side effects. As a result, there have long been concerns about their use in people with dementia.
“Antipsychotics increase the risk of stroke and mortality in people with dementia,” explains Bishara.
“They’re sedating and they can cause extra pyramidal side effects, so they can increase the risk of falls, which is obviously a big issue in care homes.
“If they’re anticholinergic they can [also] increase the symptoms of dementia, causing more confusion and memory impairment because they affect cognition,” she adds.
In 2009, a report commissioned by the Department of Health and Social Care and carried out by then professor of mental health and ageing at King’s College London, Sube Banejee — ‘The use of antipsychotic medication for people with dementia: Time for Action’ — concluded that antipsychotic use was too high in patients with dementia and that the associated risks outweighed the benefits in most patients. Since then, there have been several pledges by the UK government to reduce antipsychotic prescribing in this cohort.
The National Institute for Health and Care Excellence recommends that the first-line approach for treating agitation in patients with dementia should be non-pharmacological and only once a range of non-medical interventions have been tried without success should antipsychotic medication be considered.
Lelly Oboh, overprescribing lead pharmacist for South East London Integrated Care System, explains that before the COVID-19 pandemic, antipsychotic prescribing was “on a downward trend”.
“People were starting to say: ‘Before you use an antipsychotic you need to think about all the other non-drug [options]’ — the massage, the behavioural approaches etc, and care homes were beginning to get better in reserving the antipsychotic for those who have challenging behaviour where they’re kind of a risk to themselves or others,” she explains.
However, a lot of this has now changed. “I almost feel there was a pressure to prescribe an antipsychotic [during the COVID-19 pandemic] as the only way to manage the challenging behaviour or the agitation and restlessness,” she adds.
During this time, care homes have been under significant pressure and options for assessing patients’ medicines were limited.
“We know that some of the improvements made in reducing antipsychotics — some of which have high anticholinergic burdens — were lost during COVID-19,” says Nina Barnett, consultant pharmacist, care of older people, at London North West Healthcare NHS Trust.
“We also know that, unavoidably, the number of medication reviews reduced.”
In October 2022, NHS data analysed by The Pharmaceutical Journal show that the number of patients prescribed two or more medicines with moderate or high anticholinergic activity increased in spring 2020, when the COVID-19 pandemic struck the UK, and have remained elevated ever since (see Figure 1)[6,7]. Although, the exact reason behind this rise is difficult to pinpoint.
“What we don’t know is which medications were being prescribed at a higher rate — or not reviewed — that had higher anticholinergic burdens,” says Barnett.
However, experts suggest that antipsychotic prescribing could have played a part.
“A lot of the anticholinergics will be antipsychotics, some medicines [for Parkinson’s disease], some urinary tract medicines and, to an extent, some of the sedatives, but [medicines with a high anticholinergic burden score] will probably be more the antipsychotics,” says Oboh.
“A lot of these medicines will be used in older people in care homes or the very frail older people in community,” she adds.
Rising prescribing rates
Emerging research is also highlighting how much antipsychotic prescribing has risen in people in care homes during the COVID-19 pandemic.
In one study, published in August 2022, researchers from the University of Exeter and King’s College London compared prescribing rates recorded as part of the COVID-19 iWHELD study — which is conducting clinical trials to support care homes to improve the wellbeing of patients with dementia — with pre-pandemic data for a similar care home cohort study.
Overall, they found that the number of people with dementia in UK care homes being prescribed antipsychotic medicines soared from 18% in 2016/2017 to 28% in 2021/2022.
And, in more than a third of care homes, more than 50% of people with dementia were receiving antipsychotic drugs during the pandemic.
At the time of publication, study co-lead Clive Ballard, pro-vice chancellor and executive dean at the University of Exeter Medical School, said the pressures of COVID-19 in care homes were likely to blame for the rise in antipsychotic use.
“COVID-19 put tremendous pressure on care homes, and the majority of them must be applauded for maintaining relatively low antipsychotic prescribing levels amid incredibly difficult circumstances,” he said.
“However, there were very significant rises in antipsychotic prescribing in one third of care homes and we urgently need to find ways to prioritise support to prevent people with dementia being exposed to significant harms.”
Work shared with The Pharmaceutical Journal by the NHS London Dementia Clinical Network, which provides leadership and advice to London’s dementia services, has revealed a similar upward trend in antipsychotic prescribing.
The network’s analysis of antipsychotic prescribing data in people with dementia, which are released by NHS Digital on a monthly basis, revealed a national increase during two of the early COVID-19 lockdowns, in March 2020, and again in December 2020 (see Figure 2).
It also showed that the percentage of all patients on the dementia register with an antipsychotic prescription had increased from 9.4% in January 2020 to 10.0% in April 2020, and again to 10.1% in December 2020.
In the South West, South East and East of England, the percentage of patients on the dementia register with an antipsychotic prescription all increased by around one percentage point between January 2020 and December 2020.
Although seemingly small increases, the network were keen to carry out a “deep dive” to investigate the specific reasons behind the rise, speaking to GPs, hospital doctors and those working in community services.
A ‘deep dive’
“We knew people were being admitted to wards because they had COVID-19 and they had delirium,” a spokesperson for the NHS London Dementia Clinical Network, who did not want to be named, told The Pharmaceutical Journal.
“In a lot of situations, the doctor said that they gave them antipsychotics because all other methods to manage the situation hadn’t worked. What we found, though, was instead of stopping the antipsychotics before discharging the patient or giving advice to the GP on a review date, the patient would be discharged on the antipsychotic without advice on when to review to stop the medication.
“What the GP said was that they were doing a lot of remote consultations …[so] they couldn’t really assess the person properly because very often it was the carer who was doing the talking. And the carer was saying, ‘I can’t cope’.”
The spokesperson said there was “reluctance” from GPs to take patients off antipsychotics while they were doing remote consultations and while they were under “pressure” from the carers.
“A lot of it was about carer stress,” they added.
Martin Marshall, chair of the Royal College of GPs, added: “Dementia can be a devastating condition for our patients, their families, and their carers — and the pandemic restrictions will have made things even more difficult, with disruption to people’s usual routines and increased isolation for many.
“The ways in which GPs and our teams delivered care did change during the pandemic, with more care being delivered remotely to keep patients and staff safe.”
Although, Marshall added that when in-person appointments were clinically necessary, they were facilitated.
The network’s analysis also highlighted how the closure of memory services and day services owing to staff redeployment during the peak of COVID-19 put a block on the non-pharmacological interventions usually available to patients, such as massage, multisensory and animal-assisted therapy, as well as the impact of visiting restrictions and reduced mental health support in care homes.
The potential reasons for the increase in antipsychotic prescribing were multifaceted and spanned both primary and secondary care, so the NHS London Dementia Clinical Network established an antipsychotic audit tool to explore the reasons why GPs in London, and also in Yorkshire and Humber, were not deprescribing antipsychotic medicines in dementia patients.
The audit tool included questions about the medication start date, the most recent review date, whether there had been an attempt to deprescribe and, if not, why not. The network was able to identify the highest prescribing GP practices across London integrated care systems, which enabled it to target them directly.
The responses gathered through the audit revealed that clinicians and pharmacists were lacking in knowledge regarding the protocols for monitoring and reviewing medication.
“We noticed that the medication reviews that had taken place often didn’t make specific reference to a review of the antipsychotic medication. We also found that the GPs didn’t feel comfortable deprescribing because, very often, they hadn’t done the prescribing,” the spokesperson said.
The majority of patients prescribed antipsychotics were living in care homes and the network found there was a reluctance from care home staff to suggest reducing or stopped the medication because they were concerned about “rocking the boat” or about deprescribing in dementia patients with a pre-existing diagnosis of schizophrenia.
In addition to the audit, the network also carried out a national pharmacy webinar, which attracted almost 650 pharmacists from across sectors. The webinar enabled pharmacists to discuss antipsychotic medication and side effects and revealed a keen interest among pharmacists to be involved in work on a national level in the different integrated care systems to help reduce prescribing.
The silver lining
As the NHS emerges from COVID-19 pandemic and its services return to normal, these prescribing figures are likely to return to where they were. In fact, an analysis by The Pharmaceutical Journal, carried out in October 2022, has shown that percentage of dementia patients with a prescription for antipsychotic medication has dropped down since the COVID-19 lockdowns, with a noticeable fall around September 2021 (see Figure 2).
However, the learnings from this period still remain and the findings have provided a necessary push to kickstart improvements that were needed long before.
In this case, the NHS London and Yorkshire and Humber Dementia Clinical Networks, in collaboration with NHS England and the Royal College of GPs, have developed a toolkit to aid good practice and to help reduce variation in prescribing across England.
“The very positive thing is that we [London and Yorkshire and Humber Dementia Clinical Networks in collaboration with a team of experts in dementia] created an antipsychotic toolkit for people with dementia,” the network spokesperson said.
“When we did the deep dive, pharmacists in the hospitals were telling us that there were lots of strict protocols in place for reviewing people with dementia on antipsychotic medication, but that over the years since the ‘Time for Action’ report, people had started becoming a bit lax with these protocols.
“So that was an incentive behind it, that yes, the levels may go back after COVID-19, but it’s about reminding people and saying: ‘Don’t forget, do things according to the NICE guidance’.”
The toolkit, which was released on 11 October 2022, aims to support appropriate prescribing and deprescribing of antipsychotic medication, including advice on non-pharmacological approaches, and is intended to help all health and social care professionals, including pharmacists, wherever they may be working.
“Whether the levels go back [to pre-COVID-19 levels] or not we think [the toolkit] is going to be useful for all clinical sectors,” the spokesperson said.
“Prescribing is a key skill for GPs and they will only prescribe a patient medication after consideration of the unique factors potentially impacting on their health, in accordance with clinical guidelines,” adds Marshall.
“GPs know that prescribing antipsychotics for patients with dementia should be kept to a minimum but sometimes they do add value.
“When patients are taking medication long term, this should be periodically reviewed to ensure it is still the most appropriate treatment and consider whether deprescribing is an option. We hope these resources will support GPs and other prescribers to do so appropriately for patients with dementia.”
For many, the COVID-19 pandemic has been a valuable reminder of what is important when it comes to patient care.
“A lot of the work, apart from raising awareness, to reduce antipsychotic prescribing is the hard work around non-drug treatments, and their increased availability,” says Oboh.
“In people with dementia … there’s often an underlying problem that needs to be resolved; it could be dehydration, it could be tension, it could be pain … it’s so easy to stop the antipsychotics once we get to the root problem.”
But to return to where we were will take time and patience.
“The message for me, as somebody who is obsessed about patient-centred care and individualised care [is], any quality care takes time,” says Oboh. “You can’t do safety quickly.”
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