Evidence context

The NICE guideline on dementia covers diagnosing and managing dementia (including Alzheimer's disease) with the aim of improving care by making recommendations on training staff and helping carers to support people living with dementia. This includes managing non-cognitive symptoms of dementia such as agitation, aggression, distress and psychosis. The risks and limited benefits of using antipsychotic drugs for treating these symptoms in people living with dementia, are well recognised. They have been the subject of several previous reviews and Medicines and Healthcare products Regulatory Agency (MHRA) warnings, collated in the May 2012 edition of Drug Safety Update. Antipsychotics, with the exception of risperidone and haloperidol in some circumstances, are not licensed in the UK for treating non-cognitive symptoms of dementia. However, antipsychotics are often prescribed off-label[1] for this purpose.

Before starting any treatment for distress in people living with dementia, NICE recommends conducting a structured assessment to explore possible reasons for the distress and to check for and address any clinical or environmental causes (for example, pain, delirium or inappropriate care). Psychosocial and environmental interventions should be offered as initial and ongoing management to reduce distress in people living with dementia. NICE also recommends that carers of people living with dementia should be offered a psychoeducation and skills training intervention to help them provide care, including how to understand and respond to changes in behaviour.

NICE recommends that a person should only be offered an antipsychotic if they are at risk of harming themselves or others, or if they are severely distressed. Use of antipsychotics in people with dementia with Lewy bodies or Parkinson's disease dementia can worsen the motor features of the condition and in some cases cause severe antipsychotic sensitivity reactions. For more guidance, see the advice on managing psychotic symptoms (hallucinations and delusions) in the NICE guideline on Parkinson's disease and the advice on treating delirium in distressed people in the NICE guideline on delirium. Be aware that interventions may need to be modified for people living with dementia.

Before starting antipsychotics NICE recommends discussing the benefits and harms with the person living with dementia and their family members or carers (as appropriate). NICE has produced a patient decision aid to support this discussion. In this situation an antipsychotic should be used at the lowest dose that helps the person, and for the shortest possible time. The person should be assessed at least every 6 weeks and the antipsychotic should be stopped if it is not helping or is no longer needed.

The evidence review of randomised controlled trials in NICE's full guideline on dementia found that antipsychotics can be withdrawn without significant detrimental effects on behaviour in many people (around 50%) living with dementia, particularly when care staff are offered relevant training. The evidence also showed that people living with dementia who discontinued antipsychotic medication had lower levels of mortality compared with those who continued. NICE recommends that care providers should provide additional face-to-face training and mentoring to staff who deliver care and support to people living with dementia including advice on interventions that reduce the need for antipsychotics and allow doses to be safely reduced.

The Department of Health policy paper, Quality outcomes for people with dementia: building on the work of the national dementia strategy, is a revised implementation plan for Living well with dementia. These resources include strategies to reduce inappropriate prescribing of antipsychotics. However, NICE's medicines evidence commentary on antipsychotic prescribing in care homes before and after launch of a national dementia strategy discusses the findings of a large UK observational study (Szczepura et al. 2016) which evaluated the impact of this national policy to reduce inappropriate antipsychotic prescribing in people with dementia. The study found no change in prescribing rates, antipsychotic type (including off-label use) and excessive treatment length over 4 years. There was a 6-fold geographical variation in prescribing rates with areas of deprivation having a higher rate of prescribing. This lack of reduction in prescribing rates is at odds with the National dementia and antipsychotic prescribing audit, which showed a significant reduction in the prescribing rates from 17.05% in 2006 to 6.80% in 2011. Variation in the coding, methodology and data collection may account for this difference and preclude direct comparison of the 2 studies. Medicines optimisation teams should therefore continue to explore effective ways to implement the national policy to reduce the harms from inappropriate prescribing of antipsychotics, in line with recommendations from NICE's guidelines on medicines optimisation, managing medicines for adults receiving social care in the community and managing medicines in care homes.

SCIE guidance on The compassion intervention manual aims to improve end of life care for people living with dementia in care homes. It covers how to manage mental health and non-cognitive symptoms in detail, including many examples of non-pharmacological interventions. This manual advises that, in severe agitation or distress, antipsychotic medications may need to be considered but these should only be initiated under specialist supervision. SCIE have also created a set of films demonstrating and promoting effective practice in person-centred care as the method for managing distress and behavioural challenges among people living with dementia.

In March 2016 the Department of Health published the Challenge on dementia 2020: implementation plan, which sets out more than 50 specific commitments that aim to make England the world-leader in dementia care, research and awareness by 2020. The plan sets out priority actions across 4 themes: risk reduction; health and care; awareness and social action; and research. The National Collaborating Centre for Mental Health dementia care pathway aims to support delivery of the ambitions set out in the challenge on dementia 2020 document.

The Department of Health and Social Care's Talking to people about the government's work on dementia provides guidance and helpful tips for dementia groups and networks about facilitating discussions with people living with dementia and carers effectively and sensitively. The NHS England resource Dementia: Good Care Planning – information for primary care and commissioners is designed to help improve care planning in dementia by supporting a standardised approach, highlighting good practice, ensuring alignment with relevant cross condition care plans and helping to reduce local variation in the process. It includes information on medication review and treatment and support required as core elements of a care plan.

The NICE quality standard on dementia covers preventing dementia, and assessment, management and health and social care support for people with dementia. It describes high-quality care in priority areas for improvement. The NICE Pathway on dementia brings together everything NICE has said on dementia in an interactive flowchart.

A separate medicines optimisation: key therapeutic topic is available on psychotropic medicines in people with learning disabilities whose behaviour challenges.

[1] In line with the guidance from the General Medical Council (GMC) on prescribing unlicensed medicines, the prescriber should take full responsibility for determining the needs of the patient and whether using a medicine outside its authorised indications is suitable.