Always a Last Resort

All-Party Parliamentary Group on Dementia

One in three people over 65 will end their lives with dementia and millions more among our families and friends will be affected through providing care and support. There is currently no cure, and only limited treatments, so management of the condition should be of great concern to all of us. Two-thirds of care home residents have a form of dementia, and it is those people who are the subject of this report.

In a care home setting, the management of dementia presents particular challenges. We should appreciate the pressures on those people who provide care but we must not accept swift resort to inappropriate chemical restraint when better care is needed. In the course of this inquiry, it has become clear that the overprescriptionof antipsychotic drugs to people with dementia in care homes is a huge problem. It may arise from inappropriate prescriptions, or from a prescription which is initially justified but which continues for too long, and it does significant harm. It may damage physical well-being, compromise dignity and infringe human rights. It is systematic abuse of people with dementia in care homes.

This report does not just state the problem, but also proposes what we believe to be some workable solutions. It has been produced to inform the National Dementia Strategy for England, which will be published later this year.

The Care Services Minister has indicated his intention to bring dementia out of the shadows. In exploring the use of the wrong drugs for the wrong reasons for people with dementia in care homes, this report seeks to shine a light into one of thedarkest corners of dementia care and in doing so to improve the lives of some of the most vulnerable in our society.

The All-Party Parliamentary Group (APPG) on Dementia, chaired by Jeremy Wright MP, was created to build support for dementia to be a publicly stated health and social care priority in order to meet one of the greatest challenges presented by our ageing population.

In November 2007 the APPG on Dementia announced that it would be undertaking an inquiry into the prescription of antipsychotic drugs to people with dementia in a care home setting. The APPG conducted this inquiry because of concerns expressed by carers, patient organisations and academics about the appropriateness and safety of prescribing antipsychotic drugs to people with dementia.

The inquiry requested evidence from a variety of stakeholder groups including people with dementia, carers, health and social care professionals, care home providers, academics, regulators and trade bodies. These organisations and individuals were invited to submit views on the following issues:

• How widespread is the use of antipsychotic drugs for people with dementia in care homes?

• Why are people with dementia in care homes being prescribed antipsychotic drugs?

• To what extent is the use of these drugs appropriate?

• What alternatives are there to the use of antipsychotics?

• What steps should be taken to ensure the appropriate prescription of antipsychotic drugs for people with dementia?

The Group would like to thank the Alzheimer’s Society for its assistance in organising the oral evidence sessions and with the writing of this report. We would also like to thank the witnesses who took part in the oral evidence sessions, as well as those individuals and organisations that submitted written evidence.

Please direct any comments or queries that you may have about this report or about the Group to the Secretariat at appg@alzheimers.org.uk or alternatively contact the Chairman, Jeremy Wright MP, at the House of Commons, London,SW1A 0AA.

In this report the All-Party Parliamentary Group on Dementia examines the use of antipsychotics for people with dementia in care homes. The Group heard that over-prescribing is clearly a significant problem in many care homes (paragraphs 11–15). Evidence submitted to the inquiry highlights specific reasons for the use of antipsychotics. These drugs are prescribed as a response to the behavioural and psychological symptoms of dementia, experienced as a result not only of the condition, but also as a result of a wider and more complex set of problems external to the individual’s condition (paragraph 18).

These problems include a lack of dementia care training for care home staff, which results in the staff not being able to support people with dementia, for example by providing person-centred care. Further problems include inadequate leadership in care homes, a lack of support from external services (including inadequate monitoring and review of prescriptions) and the exclusion of family and friends from decision-making (paragraphs 19–50).

There are serious concerns that there is widespread inappropriate prescribing, for example, antipsychotics are being used for people with dementia who have mild behavioural symptoms and prescribing is often continued for long periods of time(paragraphs 61–66). This is despite the fact that antipsychotics have limited benefit for people with dementia, particularly when prescribed for long periods, and despite the serious side effects associated with their use (paragraphs 54–56).

Side effects include excessive sedation, dizziness and unsteadiness, which can lead to increased falls and injuries, as well body rigidity and tremors. Research shows that there is almost a doubling in the risk of mortality and an increase the risk of stroke by up to three times.

These side effects can be very harmful and can rob people with dementia of their quality of life. The widespread inappropriate prescribing of antipsychotic drugs is an unacceptable abuse of the human rights of people with dementia.

The Group found that in specific circumstances the use of antipsychotic drugs can be appropriate. The Group recommends that the use of antipsychotics shouldalways be a last resort, used at times of severe distress or for critical need (paragraphs 51–53).

There are good practice guidelines, for example the National Institute for Health and Clinical Excellence and Social Care Institute for Excellence (NICE-SCIE) guideline (2007), that set out effective and appropriate guidance on pharmacological and non-pharmacological solutions. However, the barriers to thisgood practice being implemented, such as a lack of training and lack of support from external services, means the current system does not enable or support this good practice on a wide scale. There is an urgent need to address these barriers (paragraphs 57–60).

In addition, in the Group’s view there are alternatives and solutions to the use of antipsychotics, which some care homes have employed to good effect and which should be widely used. Many of these are small-scale, simple solutions, which couldbe implemented immediately, such as having an individually tailored care plan (paragraphs 69–76).

The Group makes recommendations to ensure the appropriate prescription of antipsychotic drugs to people with dementia in care homes and to ensure that alternatives to the drugs are available and implemented. The overall recommendation is that the National Dementia Strategy for England must includean action plan to reduce the number of prescriptions. Specific recommendations are as follows:

• Dementia training should be mandatory for all care home staff (paragraphs77–84).

• Care homes must receive effective support from external services, including GPs, community psychiatric nurses, psychologists and psychiatrists, which should involve regular, pro-active visits to the care home (paragraphs 85–87).

• The use of antipsychotics for people with dementia must be included in Mental Capacity Act training for all care home staff (paragraphs 88–91).

• Protocols for the prescribing, monitoring and review of antipsychotic medication for people with dementia must be introduced (paragraphs 92–100).