There are estimated to be 750,000 people with dementia in the UK, and one in three people over the age of 65 years will die with dementia. With the right care and support, people with dementia can enjoy a good quality of life at every stage of their illness.
However, as their condition progresses, they will find it increasingly difficult to carry out day-to-day tasks and, in the latter stages, are likely to require care in a care home.
Most patients at some point in their illness will manifest behavioural and psychiatric symptoms of dementia (BPSDs). These symptoms include a range of psychological and psychiatric symptoms such as hallucinations, delusions and anxiety, and behaviours such as wandering and aggression. BPSDs are the result of a complex interaction between the illness, the environment, physical health, medication and interactions with other people.
These symptoms are a major source of distress to patients and carers, and significantly impair quality of life for both. Although BPSDs can often remit spontaneously, they can also be persistent and severe. Each symptom needs to be treated specifically, and more than one symptom can occur at the same time. Management of BPSDs requires a range of approaches, including drugs, and behavioural and environmental interventions. The initial management of BPSDs depends on the symptom, its severity, frequency, impact and the situation in which it occurs.
A range of psychotropic drugs has been used to manage BPSDs, with antipsychotics being frequently used to manage the behavioural symptoms. Risperidone is the only drug licensed for the management of BPSDs: it is licensed for management of persistent aggression in moderate to severe Alzheimer’s disease, and then only for six weeks. Unfortunately, antipsychotics are all too frequently used as first-line treatment for a range of BPSDs, and often long-term.
Problems associated with the use of psychotropic medicines in older people, in general, and those with dementia, in particular, have been recognised for many years. Measures have been taken, both locally and nationally, to reduce the use of these medicines in older people. For example, the Omnibus Budget Reconciliation Act 1987 (OBRA), enacted by the US federal government, introduced measures to reduce the use of psychotropic medication in older people in US care homes. This led to significant reductions in the use of a range of psychotropic drugs in older people in care homes.
In England, the National Service Framework for Older People, published in 2001, recognised the problems associated with use of medicines in older people. This framework required NHS organisations to introduce regular medication reviews for people aged 65 years and older.
Issues associated with the use of antipsychotics in people with dementia have been highlighted recently with the publication of the Department of Health’s 2009 report on the prescribing on antipsychotic drugs to people with dementia (the Banerjee report), which estimated that there are 180,000 people with dementia who are currently prescribed antipsychotics and that two thirds of this prescribing is unnecessary. The reports says that excessive use of antipsychotics in this patient group is estimated to lead to 1,800 excess deaths and 1,500 strokes each year.
Antipsychotics can also deprive people of their quality of life and opportunities for social interaction. Their continued inappropriate use in people with dementia is unacceptable and must change. The National Dementia Strategy, which was introduced in 2009 and published by the DoH in 2011, included a specific target for reduction of inappropriate prescribing of antipsychotics.
Call to action
One of the biggest challenges we face is that, although there is a lot of activity and energy for change, unless that energy is directly translated into appropriate prescribing and appropriate review of medicines, it will not achieve the reduction in prescribing that is needed.
The NHS Institute, working together with the Dementia Action Alliance, has launched a call to action to patients, carers, voluntary organisations and the NHS to work together in a way that that will unite us in our common cause to improve the quality of life of people with dementia and their carers by reducing the inappropriate use of antipsychotics. The call to action was launched on 9 June 2011, by minister for health and social care Paul Burstow.
The call to action states that “all people with dementia who are receiving antipsychotic drugs will have undergone a clinical review to ensure that their care is compliant with current best practice and guidelines, that alternatives to their prescription have been considered and a shared decision has been agreed regarding their future care by 31 March 2012”.
Eight groups have been identified to work together and a specific commitment has been developed for each group to enable everyone to play their part to achieve the overall goal. The eight groups are:
- People with dementia and their carers, and voluntary sector and advocacy groups (local and national)
- Leaders of care homes
- GPs and primary care teams
- Psychiatrists and mental health teams
- Hospital doctors and multidisciplinary teams
- Commissioners of health and social care services
- Medical and nursing directors of acute and foundation trusts
Achieving the goal will require each to play their part, and everyone to work together.
The pharmacy commitment
The pharmacy team has been recognised as having a key role to play in supporting prescribers, patients and their carers to reduce the use of antipsychotics in people with dementia.
I have been working with the NHS Institute, pharmacy representative bodies and individual pharmacists, and the other commitment groups, to develop the commitment statement for pharmacy, which states: “I (we) commit to review the people with dementia under my care to identify those who are prescribed antipsychotic medication and to work in partnership with my prescribing and other health care colleagues to review each individual by 31 March 2012.” Pharmacists in all sectors have a part to play in achieving this commitment. I ask all pharmacists to update their knowledge in this area.
We are asking community pharmacists to query every new prescription for an antipsychotic for people aged 65 years or over and those known to have dementia, and to search for and audit all people aged 65 years and over who have received antipsychotic medicines in the past three months.
We are also asking community pharmacists to support patients and carers by signposting to sources of support, for example local branches of the Alzheimer’s Society.
Community pharmacists can play a valuable role in advocating for patients: patients and carers often find it difficult to challenge GP prescribing, so the pharmacist can help by empowering patients and their carers to query prescribing.
Community pharmacists could make better use of the medicines use review service by focusing on older patients prescribed antipsychotics.
Community pharmacists could provide greater support for patients living in care homes. In addition to challenging prescribing, community pharmacists could help by providing advice to care home staff regarding the management of BPSDs.
We are asking hospital pharmacists to query every prescription for an antipsychotic for people aged 65 years and over and to ensure that discharge information is up to date regarding the actions GPs should take (in line with National Institute for Health Clinical Excellence guidelines).
Hospital pharmacists could help to ensure that nurses, prescribers and others are aware of guidelines on the management of BPSDs and the appropriate use of antipsychotics for challenging behaviours.
Hospital pharmacists should also ensure that patients are reviewed post-discharge. All antipsychotics for people with dementia should be flagged on transfer documentation with a clearly identifiable review date.
Primary care pharmacists
We are asking primary care pharmacists to consider including antipsychotic prescribing for people with dementia within quality and outcomes framework medicines management action plans and quality and productivity action plans.
Primary care pharmacists should identify practices with high levels of prescribing of low-dose antipsychotics and challenge these prescribing habits.
We have a choice
We can each of us choose to believe that this is someone else’s responsibility, we can choose to continue to do things in the way we always have, and we can choose simply to be outraged. But people with dementia who are prescribed antipsychotic medicines will continue to suffer unacceptable consequences and many more will join them.
Alternatively, we can choose to respond to the call to action. We can share in the hope that so many people have already demonstrated by playing our part in ensuring that people with dementia get the clinical review that they deserve. This will also have the effect of securing a better future for ourselves, our loved ones and those of us without a voice for whom inappropriate antipsychotic prescribing might become a reality if we do nothing.
Help us to achieve our goal
I ask you to make a choice. I ask you to commit to taking action by joining the pharmacy commitment group, spreading the word about this call to action and leading on taking action in your area to reduce inappropriate prescribing.
Visit www.institute.nhs.uk and click on “Dementia C2A” to find out more or email C2Adementia@institute.nhs.uk and you will be linked to your relevant commitment group.