Some of the key issues covered in the report include:

• understanding the significance of staging dementia, the challenges and decisions occurring at each stage, and the specificities of different types of dementias.
• delving into the impact of diagnosis on people living with dementia, their carers, relatives, and communities.
• addressing the symptoms and changes commonly associated with dementia, and the pharmacological and non-pharmacological interventions that can help people living with dementia and their carers.
• showcasing international and national perspectives on models of care.
• laying the groundwork for forward-thinking, principled approaches to dementia, necessary in order to move the needle forward.

Recommendations

The report makes the following recommendations:

• National dementia plans need to become a policy priority
• Person-centred care must become the norm
• Care should be culturally appropriate and gender inclusive
• Support for carers must be prioritised
• Care needs to be coordinated and accessible
• We must continue to challenge stigma and raise awareness – it remains a severe barrier
• Education must be improved and expanded
• Further trials of cost-effective and evidenced-based psychosocial interventions are needed
• Risk reduction must be bolstered

• what to expect from the memory assessment process
• taking care of your well-being
• available support
• what if I am diagnosed with a form of dementia?

Key recommendations to improve support for those living with dementia include:

• Urging the Government to accept the Committee’s recommendation from a previous report in 2020 that social care funding should be increased by an additional £7 billion per year by 2023–24 to cover demographic changes, uplift staff pay in line with the National Minimum Wage and to protect people who face catastrophic social care costs.

• Calling on Department of Health and Social Care and NHS England and Improvement use its future social care White Paper to develop clear guidance on the care and support those living with dementia and their carers should expect to receive from diagnosis through to lifelong post-diagnostic support. This guidance must encourage integrated working across the health and social care system while also establishing clear responsibilities for Integrated Care Systems in coordinating care. Alongside this, there must be appropriate data collection along the whole dementia pathway to monitor activity and support improvement.

• Stating that the Government’s new dementia strategy must include cross-departmental initiatives to ensure people with dementia are able to remain connected to their community.

• Calling on the Government to ensure reforms enable unpaid carers to better support those living with dementia, the Government must provide unpaid carers with the opportunity to contribute to any plans for reform.

• visiting restrictions, which led to isolation, loneliness and lack of stimulation.
• frequent bed moves and disrupted continuity of care.
• communication difficulties exacerbated by staff wearing PPE.
• loss of specialist staff due to redeployment, sickness and shielding.

It also highlights changes implemented as as result of the pandemic that have resulted in care improvements, including:

• new methods of joint working between services.
• the creation of dedicated family liaison teams.
• making some patient follow-up virtual, resulting in quicker responses.

1. reducing regional variation in diagnosis
2. supporting those from an ethnic minority community to access a diagnosis
3. increasing diagnosis for people residing in a care home or hospital setting.

The reports set out a roadmap in how to achieve this change. But a diagnosis is not done in isolation. It requires all health and social care professionals involved in dementia care to recognise the symptoms of dementia and to initiate the process to diagnosis, which itself facilitates access to vital care and support that enables people to live well with the condition.

The recommendations set out in these reports, targeted at Integrated Care Systems, will address the current barriers to diagnosis. 

When he was living at home with us, we never flagged these symptoms to his GP. They didn't seem to cause Dad distress, and we knew it was a symptom of his Alzheimer's. But now he's in a care home and the staff are concerned that these hallucinations are causing him, and other residents, some distress. The care home set up a meeting with Dad’s mental health team to talk about how to deal with his symptoms. 

The outcome of the meeting was to carry out a blood test to rule out any underlying discrepancies in Dad’s blood that could be causing or exacerbating his behaviour. They wanted to do this before resorting to antipsychotic medication. But, Dad wouldn’t let them take his blood. 

Despite this, Dad was placed on a high dose of antipsychotic medication. 

Why we’re so concerned

Dad’s place at the care home is funded by NHS Continuing Healthcare Funding. This took a long time for us to secure. The care home has requested multiple times that Dad has 1:1 peer support put in place via this package to help them best support him. But the NHS has continuously said no. 

Dad was placed on anti-psychotic medication when there were obvious non-drug based alternatives to pursue. The first was investigating other underlying reasons. The second was providing him with this 1:1 support. This support could have meant that he wasn’t left on his own to get as agitated by his hallucinations. 

Given he has been having hallucinations for three years without concern, any amount of time on these drugs won't actually help with the underlying cause. Dad doesn’t have psychosis. He has Alzheimer’s disease and this antipsychotic medicine won’t cure him of that. When he’s taken off the medication, his symptoms will likely return.

The medication completely transformed him for the worse. He went from being extremely mobile to sitting in a wheelchair and sleeping all day. Where he used to sing, he hardly uttered a word. He became a shell of who he was in a very short amount of time. I fear this damage is unrepairable.  

Alongside all of these concerns about him and his health, we’re also worried that we can’t do anything about it. What if the NHS decides to remove his healthcare package if we raise concerns? What if his care home no longer wants to care for him if we make a fuss? 

All of these concerns have arrived at a time where, up until a short while ago, we weren’t allowed to visit him. We had 4-minute long video calls, but these were hopeless. He’d often walk away from the screen or shout. It’s been so hard for us to see how he’s really doing. 

To make matters worse, the decision to put him on antipsychotic medication was made without involving or informing his family. We’ve had to continuously phone and ask to speak to the right people to piece together recent developments. We’ve still got no idea how long he’ll be on this medication, or what the plan is for when he eventually comes off it. 

How to fix this

• Pursue non-drugs based alternatives first. 1:1 support might involve more resources, it might cost more. But the chances are, it’ll lead to better patient outcomes. 
• Involve patient’s families in decision-making processes. They need to know what you’re doing, for how long, why, and whether there are non-drugs-based alternatives. They need updates on what’s working and what’s not. 
• Families need to know that they can voice concerns and their loved ones won’t face repercussions. This one is trickier to solve - it’s reliant on creating a safe environment. 

Patient Safety Learning 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?

• Why is the person being prescribed an antipsychotic? Which symptoms is the drug meant to be helping with?
• Have possible medical causes of their symptoms (such as infection, pain or constipation) been ruled out?
• Can non-drug approaches be tried first?
• What can I do as a carer to help? Do you need to know more about the person as an individual to work out what may be causing their symptoms?
• How will we know if the drug is working?
• What side effects might the drug cause?
• What is the plan for the person to come off the antipsychotic?
• When will the use of this drug be reviewed?

Follow the link below to find out more. 

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.[1] 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.[1]

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.[2] 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.[3] 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.[4]

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.[3]

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.[5] 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.[5]

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.[6] The study estimated that, out of 180,000 people with dementia treated with antipsychotic medication annually, around 140,000 prescriptions were inappropriate.[6] 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.[7] [8] [9]

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.[10] [11] 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.[2] [12] 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.[13] [14] [15] [16] 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.[1]
• 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.[17] [18] 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.[19]

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”.[20] 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.[21] 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.[22]

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.

Staff training

• 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.[23] [24]

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?

If you have insights you would like to share, please email the Patient Safety Learning team or share your thoughts on the hub.

References

1. Alzheimer’s Society, Worst hit: dementia during coronavirus, September 2020.

2. Robert Howard, Alistair Burns and Lon Schneider, Antipsychotic prescribing to people with dementia during COVID-19, Lancet Neurol, November 2020.

3. Alzheimer’s Society, Antipsychotic drugs, Last Accessed 13 February 2021.

4. Social Care Institute for Excellence, Antipsychotic medication and dementia, Last Accessed 13 February 2021.

5. Alzheimer’s Society, Alzheimer’s Society’s view on antipsychotic drugs, Last Accessed 13 February.

6. Department of Health, The use of antipsychotic medication for people with dementia: Time for action, 2009.

7. Medicines and Healthcare products Regulatory Agency, Antipsychotics: initiative to reduce prescribing to older people with dementia, 11 December 2014.

8. Welsh Government, Dementia Action Plan for Wales, 2018-2022, 2018.

9.  Scottish Government, Scotland’s National Dementia Strategy 2017-2020, 2017.

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.

11. Welsh Government, Measuring the prevalence of antipsychotic use in care homes in Wales: Report of the Short Life Working Group, 2019.

12. Nathan M. Stall et al, Increased Prescribing of Psychotropic Medications to Ontario Nursing Home Residents during the COVID-19 Pandemic, medRxiv, 2020.

13. Jane Buchanan and Kim Samuel, Another COVID risk – overuse of psychotropic drugs on seniors in care, Human Rights Watch, 15 January 2021.

14. ITV News, ‘It’s a chemical cosh’: How Covid increased the use of antipsychotics among people with dementia, 21 January 2021.

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.

16. Vancouver Sun, COVID-19: More care home residents given ‘potentially inappropriate’ mood-calming drugs in 2020, data suggests, 13 February 2021.

17. Wilma Knol et al, Antipsychotic drug use and risk of pneumonia in elderly people, Journal of American Geriatrics Society, 2008.

18. Sanja Zivkovic et al, Antipsychotic drug use and risk of stroke and myocardial infection: a systematic review and meta-analysis, BMC Psychiatry, 2019.

19. The Lewy Body Society, Treatment, Last Accessed 17 February 2021.

20. NHS England and NHS Improvement, Consent to treatment, Last Accessed 22 February 2021.

21. Skills for Care, The state of the adult social care sector and workforce in England, October 2020.

22. Patient Safety Learning, Covid-19 and social care; we must act now to ensure patient safety, Patient Safety Learning’s the hub, 14 April 2020

23. Alzheimer’s Society, Organising treatment and care for people with behavioural and psychological symptoms of dementia: A best practice guide for health and social care professionals, 2011.

24. Social Care Institute for Excellence, Alternatives to antipsychotic medication, Last Accessed 18 February 2021. 

• The prevalence of dementia experiences and the cost of dementia care will continue to dramatically escalate in the next 20 years.

• At a strategic level, commissioning frameworks in the UK are prioritising effective integrated, multidisciplinary working.

• We know very little about the challenges encountered by practitioners at the ground level.

What this paper adds

• Unique interpretative analysis of the views and perspectives of a range of dementia service practitioners.

• Insights into how current commissioning frameworks risk accentuating inter‐practitioner prejudices, communication breakdown and practice overlap.

• Suggestions of how commissioning frameworks could proactively diffuse inter‐agency prejudices. For example, through encouraging statutory and third‐sector service providers to form consortia bids and to build relationships through shadowing and shared office space.