Emerging evidence indicates that there has been an increase in the prescription of antipsychotic medications for people living with dementia in care settings during the COVID-19 pandemic. In this blog, Patient Safety Learning explores the patient safety concerns relating to the use of antipsychotic medications for people with dementia and suggests areas for further investigation and action.
The pandemic has had a devastating impact on those living in care settings, particularly on people with dementia. During the initial wave of the pandemic (between March and June 2020) over a quarter of people who died from COVID-19 in England and Wales had dementia, making it the most common pre-existing condition associated with COVID deaths. In addition to this, the imposition of restrictions to slow the spread of virus has had a particularly detrimental impact on the mental health, cognitive abilities, and physical wellbeing of people with dementia.
Recently there has been emerging evidence and reports indicating that, during the pandemic, there has been an increase in the number of prescriptions of antipsychotic medications for people with dementia. This has raised the possibility that a patient safety concern that pre-dates COVID-19, namely the inappropriate prescription of antipsychotic medications to people with dementia, may have been exacerbated by the pandemic.
Why are antipsychotic medications prescribed for people with dementia?
Antipsychotic medications are commonly prescribed for people living with dementia in response to the behavioural and psychological symptoms of the condition. Symptoms can vary and can include psychotic symptoms, such as hallucinations and delusions, as well as behavioural symptoms, such as aggression, restlessness, depression, and anxiety. If these symptoms appear to be causing the person significant distress, or if there is a risk of the person harming themselves or others, antipsychotic medications may be prescribed by their doctor to reduce the intensity of their symptoms.
Antipsychotic medications are accompanied by serious side effects for people with dementia, particularly if they are used for a period of several weeks. Side effects can include drowsiness, shaking and unsteadiness, and increased risks of infection, falls, blood clots and strokes.
Government acknowledgement of risks around the prescription of antipsychotic medications
Given the significant health impacts of these side effects, the widespread use of antipsychotic medications in care settings for people with dementia is a contentious issue. Alzheimer’s Society have raised concerns about the potentially inappropriate prescription of these medications given their harmful side effects. They have made the case that, in many instances, these medications may only have a moderate benefit and fail to tackling the underlying causes of patients’ behavioural and psychological symptoms.
The validity of these concerns has been accepted at a government level in the UK. A 2009 study by the Department of Health investigated this issue in depth and set out several recommendations aimed at reducing the use of antipsychotic medications for people with dementia. The study estimated that, out of 180,000 people with dementia treated with antipsychotic medication annually, around 140,000 prescriptions were inappropriate. Subsequently, through various dementia action plans and strategies, the UK Government and devolved administrations have set out plans to reduce this use of antipsychotic medications.  
However, although identified as a safety risk for the past decade, it has proved difficult, in practice, to reduce the inappropriate use of antipsychotics in care settings. Despite policy commitments aimed at addressing this issue, there has been a lack of progress.  This was the case before the COVID-19 pandemic. Now, the situation is potentially becoming worse.
Increased use of antipsychotic medications during the pandemic
Emerging evidence suggests that this patient safety issue may have been exacerbated by the pandemic, with new data indicating a notable increase in the prescription of antipsychotic medications for people with dementia in the UK and Canada.  Campaigning groups and the media have drawn attention to this issue, highlighting the risks posed by a potential increase in inappropriate prescriptions of these medications.    Alzheimer’s Society has called for the Government as part of its roadmap to ease lockdown to formally investigate why the use of antipsychotic medications for people with dementia has risen during this period.
A range of causes are suggested as being responsible for this increase:
- Prescriptions being made in response to a worsening of symptoms, such as agitation and aggression. This deterioration is being linked to restricted contact with friends and family as a result of pandemic restrictions.
- Significant pressures on staff and insufficient levels of staffing, resulting in antipsychotic medications becoming the primary option for a person experiencing distressing symptoms, rather than first trying non-drug strategies for behavioural and psychological symptoms of dementia.
- Reduced ability of carers and family members to be effectively involved in making decisions over the use of these medications due to significantly reduced contact during the pandemic.
Key patient safety issues
There is a need for further work to be undertaken to establish whether this increase in prescriptions of antipsychotic medications also represents an increase in cases where this is being done so inappropriately. However, given our awareness of the pre-existing problem with inappropriate prescriptions, we believe there are potentially three key patient safety concerns arising from this issue.
1. Health impact
One concern about the increased use of antipsychotic medications in care settings is an increased risk of serious side effects. As noted earlier, there are a range of health risks associated with taking antipsychotic medications, particularly for older people with dementia, who face an increased risk of pneumonia and stroke.  This is even more concerning for people with Lewy body dementia (dementia with Lewy bodies or Parkinson’s disease dementia) who are at risk of particularly severe reactions to antipsychotic medications and a significantly increased mortality risk.
2. Informed consent and shared decision-making
On informed consent, the NHS states “the person must be given all of the information about what the treatment involves, including the benefits and risks, whether there are reasonable alternative treatments, and what will happen if treatment does not go ahead”. We believe it is important that people are not treated as passive participants in their care; it is vital that health and care staff respect the rights of patients and enable them to make fully informed decisions about the treatment they receive.
In many cases where a person with dementia is prescribed antipsychotic medications they may lack capacity to make decisions about their care, with this responsibility falling to a person with power of attorney for decisions regarding their health and welfare. This person, who may be a family member or friend, needs to be able to make decisions on their behalf in an informed way.
In normal circumstances this can be challenging. The person with power of attorney may not be aware of the right questions to ask about antipsychotic medications, their side effects, or when this treatment will be reviewed, reduced, and stopped. The concern now is that this may become even more difficult because of the pandemic, with reduced contact between a patient’s family and friends and the patient, as well as between a patient’s family and friends and those responsible for the patient’s care. They will also have significantly fewer opportunities to assess the impact of the symptoms that these antipsychotic medications are being prescribed for and to use this to inform their decision-making process.
3. Safe staffing levels
Concerns about staffing levels are nothing new in social care, which was already overstretched prior to the pandemic; there are currently an estimated 112,000 vacancies in care staff in England alone. Near the beginning of the pandemic, Patient Safety Learning identified this as a potential patient safety concern, noting how the increased pressure of the pandemic, coupled with a lack of care staff, may impact the quality of care.
Working in these high-pressure conditions, it is possible that non-drug strategies for treating behavioural and psychological symptoms of dementia are not being fully pursued. Instead, the use of antipsychotic medications may become a first choice to calm a person experiencing distressing symptoms, rather than initially employing potentially more time-consuming and resource intensive non-drug strategies.
Patient safety investigation and action needed
Patient Safety Learning believes that there is a need for patient safety investigation and action by the Department of Health and Social Care and the Care Quality Commission in several areas:
Investigating patient safety concerns of antipsychotic medication
- We support calls for the Department of Health and Social Care and the Care Quality Commission to investigate the increased prescription of antipsychotic medications for people living with dementia during the pandemic.
Informed consent and shared decision-making
- As part of its investigation, the Department should review the information provided to people with dementia and their carers on what involvement they should expect in decisions about antipsychotic medications, considering whether this is sufficient.
- The Department should work with charities, such as Age UK, Alzheimer’s Society, Dementia UK, and the Lewy Body Society to ensure the widest possible dissemination of patient guidance on this issue.
- We believe that the Department should work with organisations such as Skills for Care and the Social Care Institute for Excellence to assess what additional training may be required for staff in this area.
- The Department should work with these bodies to share good practice for those working in social care on the use non-drug strategies for treating the behavioural and psychological symptoms on dementia. 
Guidance and advice for care providers
- The Department should consider and report on the opportunities and financial incentives for non-drug strategies for treatment, providing case studies of good practice.
- The Department should consider and report on whether there are any financial disincentives or barriers that may be preventing the use of non-drug strategies for treatment, such as potentially increased costs of person-centred care and personalised solutions.
We would like to hear your views
We are keen to explore this issue further and would like to learn more from people’s experiences concerning the prescription of antipsychotic medications for people living with dementia.
- Are you a carer or a family member of a person living in a care setting with experience of this issue?
- Do you work in a care home, nursing home or in domiciliary care and have a view on this issue?
10. Ala Szczepura et al, Antipsychotic prescribing in care homes before and after launch of a national dementia strategy: an observational study in English institutions over a 4-year period, BMJ Open Vol. 6. Issue 9, 2016.
15. Daily Mail, Dementia patients ‘are being given “archaic and dangerous” anti-psychotic drugs to keep them sedated during lockdown putting them at risk of early death’, as grandmother, 86, dies six weeks after starting medication, 26 October 2020.