This was originally written 4 years ago, unfortunately, high prescribing rates still exist and recent research* suggests that rates are climbing again during Covid-19. Unfortunately the questions remain in relation to appropriate pathways of support for people living with dementia who are distressed.
Why does it matter if we use antipsychotic medications to address distressed behaviour in people with dementia?
When I started my very first job in care in 1989 we had some interesting ideas about the behaviour of people with dementia. I was still living in the US at the time, but from what I have gathered, care of people with dementia wasn’t so different in the UK at the time. If someone “wandered” we restrained them, in their wheelchair, in their bed, in their lazy boy recliner. Of course now we recognise that this is not an appropriate intervention. It restricts the rights of the individual, and often it causes injury rather than preventing it.
In fact when I train new carers they are often appalled at the idea that this could ever have been seen as good way to support a person with dementia. But if there is one thing that I have learned over the past 27 years in dementia care, it is that we still don’t have it all figured out. Though we do not use physical restraint any more, we do still regularly chemically restrain some people with dementia. This usually happens in the context of distressed behaviour.
In the past two Scottish dementia strategies, The English strategy and the Prime Ministers Challenge on dementia this reliance on chemical restraints has been highlighted, and approaches to reduce the use of antipsychotics medications to modify behaviour in people with dementia have been implemented. They are meant as a last resort, when all other non-pharmacological interventions have failed and when the behaviour poses a threat to the well-being of the person with dementia. But as family carers and front line practitioners it is important to understand why this reduction is so vital.
Most of us are aware that the more medication a person receives the more likely they are to have to have negative side effects and drug interactions. But when we look at the potential for negative consequences from antipsychotic medications usage more closely, it reveals a very disturbing picture. Many people are inappropriately prescribed these medications because some of the medications have been shown to impact on behaviour. They are not developed for this purpose, they are developed to treat psychosis. It is possible for someone who has dementia to also have psychosis, and when this happens then these medications are often prescribed to treat the psychosis and it would be seen as appropriate usage. In the case of a diagnosed psychosis, it is often determined that the benefits to the individual taking the medication outweigh the not inconsiderable risks of taking the medication. But when someone with dementia, who does not have a psychosis is prescribed an anti-psychotic to “help with their behavioural symptoms” at best they receive a toxic medication that causes increased confusion, sedation and reduces their mobility, leading to serious illnesses and increased falls.
In 2009 the Department of Health commissioned an independent report on the use of antipsychotic medication for people with dementia in which it was noted that the use of medications in care homes was a major problem.“It appears that anti-psychotics are initiated too freely, that they are not reviewed appropriately following initiation, and that they are not reduced or withdrawn as quickly as they could be” (Banerjee, 2009). Dr. Banerjee went on to say that research had shown that although there are benefits in the treatment of aggression and psychosis over six to twelve weeks, antipsychotic medication is not effective in the treatment of other behavioural symptoms and is not effective if taken for longer periods of time. Even when used in the short term, they must be balanced against the side effects. Of the available antipsychotic medications only risperidone is actually licensed for use with people with dementia, and even then the recommended length of usage is six weeks.
So what are those increased risks that warrant such tight guidelines for usage?
• 80 % increased risk of Pulmonary Embolism
• 300% increased risk of having a stroke
• 200% increased risk of faster cognitive decline
• 200% increased risk of mortality
In fact Dr. Bannerjee has stated “The use of these drugs in those with dementia has substantial clinical risk attached, including a conservative estimate of 1,800 extra deaths and 820 extra serious adverse events such as stroke per year”
It sure is a good thing we put a stop to the inappropriate prescribing of anti-psychotic medications….Or did we?
This month a report in the British Medical Journal, which was produce by researchers at the Universities of Warwick, Lancaster, East Anglia, Coventry and City University London, concluded that the National Dementia Strategy in England was “not associated with reduced PP (antipsychotic prescribing point prevalence) levels or the types of antipsychotic prescribing in care homes.” It went on to call for “Clear standards specifying recommended agents, dosages and length of treatment, together with routine monitoring and greater accountability for antipsychotic prescribing…”as a means of tackling the issue more effectively.
And what of Scotland? Well to my knowledge there has not been any official tracking information released about the antipsychotic prescribing rates since the issue was first addressed in the 2010 strategy (see Time trends in psychoactive prescribing to people with dementia in Scotland 2001-2011) This report was much touted as it showed a decline in antipsychotic prescribing for the first quarter in 2011, but what has happened since then? We do have some evidence to suggest that Scotland has not been any more successful than England in this area (see the Mental Welfare Commission report, 2014). The Scottish Dementia Strategy 2013-2016, commitment 13 states: “We will finalise and implement a national commitment on the prescribing of psychoactive medications, as part of ensuring that such medication is used only where there is no appropriate alternative and where there is clear benefit to the person receiving the medication.” However we are at the end of that strategy cycle and it is not clear what that national commitment and implementation process actually looks like.
But enough of politics, the question I am posing is: Who is responsible for tackling this issue? Part of the answer is that this is not an issue that can be solved at only one level. Ultimately the medications are prescribed by a GP or Psychiatrist, who is often put in an untenable situation in which their only tool to help in a time of crisis for their patient is a prescription pad. So this is an issue that requires all parties involved in the support of the individual to understand their part in using non-pharmacological interventions.
We cannot just mandate to doctors and psychiatrists that they cannot prescribe these medications for the purposes of alleviating the behavioural symptoms that may accompany dementia. We must also educate them about why it isn’t an appropriate therapeutic response and even more importantly we need to educate them about the use of non-pharmacological interventions and what questions to ask of support staff and family carers to determine if other interventions have been tried. It also requires an accepted multidisciplinary approach to why distressed behaviour occurs in people with dementia, and a belief that all behaviour has meaning.
We cannot just blame hospital staff for starting people on inappropriate medications while in hospital, without addressing the reasons why the medication is used. How can we adapt hospital spaces to feel safer and more secure for people with dementia in hospital, and how do we help hospital staff at all levels understand the paramount importance of their approach in the midst of a traumatic experience for the patient.
We cannot just blame care homes for the high level of inappropriate antipsychotic use in their clients with dementia. They need to have a clear system for timely medication reviews set up, which is followed by their GP and Chemists. Care and support staff in all settings (including home care and housing staff!) need to be educated about how to understand distressed behaviour and helped to use therapeutic interventions beyond “distraction with a cup of tea”. This requires an investment in staff development. As someone who has been involved in the training of support staff in understanding distressed behaviour I can tell you that this is not a one-off topic. We cannot expect the average care worker who has attended one afternoon of training about distressed behaviour to be proficient at supporting someone who is distressed. It often takes staff multiple training sessions, opportunities to reflect on their practice (alone and in group settings), and mentoring in order to really develop their skills in this area. But this is the vital link to reducing antipsychotic use in care settings. One of the really great outcomes of investing in this (beyond having proficient and empathetic staff) is that front line staff become more confident in helping the voice of the individual with dementia and particularly those with advanced dementia to be heard.
And finally, families desperately need training and support to understand distressed behaviour and what they can do to support their loved one through these behaviour changes. Families rarely have the background knowledge to question the prescribing of antipsychotics, and may view this as a positive because someone is at last addressing a very difficult issue for them. We are frequently contacted by families to find out if they can attend our Understanding Distressed Behaviour training days for professionals. And sometimes they do attend, but a family specific course is needed because when it comes to behaviour changes in the person you love, getting signposted somewhere else is not much of a comfort. The issues and concerns that need to be addressed for someone being supported by family in their home are often very different than what we see in care settings. But as of this time there is no funding for the development of such a course, nor is there means to offer this to carers as a free service.
Overarching all of these areas we need, as the report mentioned above indicates, a clear guidance for the use of antipsychotics (the what, when, why and how) when it is used with individuals living with dementia. It needs to be one in which everyone involved in the support process understands. No practitioner or carer sets out to reduce quality of life in the individual with dementia, so let’s make sure everyone involved in the process has the knowledge and tools required to support the wellbeing and reduce the distress of those they care for.
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*Howard, R., Burns, A. and Schneider, L., 2020. Antipsychotic prescribing to people with dementia during COVID-19. The Lancet Neurology, 19(11), p.892.
Banerjee S. (2009) The use of antipsychotic medication for people with dementia: Time for action. London: Department of Health
Szczepura A, Wild D, Khan AJ, 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 2016;6:e009882. doi:10.1136/bmjopen-2015- 009882
Scottish Government (2013) Scottish National Dementia Strategy: 2013-2016.
Scottish Government (2010) Scottland’s National Dementia Strategy.
Guthrie, B., & Clark, S. (2012). Time trends in psychoactive prescribing to people with dementia in Scotland 2001-2011. Dundee, Scotland: University of Dundee & NHS Fife.
Mental Welfare Commission for Scotland (2014) Dignity and Respect: dementia continuing care visits
Links to reports: