Guidance

About this guideline

About this guideline

Dementia is a term used to describe a range of cognitive and behavioural symptoms that can include memory loss, problems with reasoning and communication and change in personality, and a reduction in a person's ability to carry out daily activities, such as shopping, washing, dressing and cooking. The most common types of dementia are: Alzheimer's disease, vascular dementia, mixed dementia, dementia with Lewy bodies and frontotemporal dementia. Dementia is a progressive condition, which means that the symptoms will gradually get worse. This progression will vary from person to person and each will experience dementia in a different way – people may often have some of the same general symptoms, but the degree to which these affect each person will vary (Dementia Gateway, Social Care Institute for Excellence).

A report published by the Alzheimer's Society found that in 2013 there were approximately 815,000 people living with dementia in the UK. If current trends continue, this number is expected to increase to 1,143,000 by 2025. In England, the National Dementia and Antipsychotic Prescribing Audit found that approximately 31,000 people were newly diagnosed with dementia in 2011. This is an increase of 8% between 2006 and 2011. Finally, in December 2017, there were 456,739 people on GP registers with a formal diagnosis of dementia, up from approximately 290,000 people in 2009/10, with the majority of this difference accounted for by an increase in diagnosis rates.

The Alzheimer's Society report found that in 2013 the total cost of dementia in the UK was estimated to be £26.3 billion. Of this, approximately £4.3 billion consists of health care, and approximately £10.3 billion consists of social care. The remaining £11.6 billion accounts for estimated unpaid care contributions.

Why is it needed?

Providing care and support is very complex, because of the number of people living with dementia and the variation in the symptoms each person faces. This has led to considerable variation in practice. Areas that pose particular challenges for services and practitioners may include:

  • coordinating care and support between different services

  • what support carers need, and how this should be provided

  • staff training.

This guideline makes evidence-based recommendations aiming to support these areas of practice.

Dementia also has significant costs for health and social care services. Because of this, it is important to ensure that people living with dementia can get the care and support they need, and that services provide this in an efficient and cost-effective way.

In addition, new methods for diagnosing and assessing dementia have been developed. Amyloid imaging techniques have been licensed for use in the UK, and new evidence is available for cerebrospinal fluid examination. There is also evidence on different approaches to assess and diagnose dementia subtypes. The guideline makes new recommendations on dementia diagnosis, based on a review of the latest evidence.

What does it cover?

This guideline addresses how dementia should be assessed and diagnosed. It covers person-centred care and support, tailored to the specific needs of each person living with dementia. As part of this, it can help professionals involve people living with dementia and their carers in decision-making, so they can get the care and support they need. It also addresses care coordination and staff training, and how dementia may impact on the care offered for other conditions.

The guideline does not cover every aspect of dementia care or support, or areas where recommendations would be the same for people with or without dementia. It focuses on areas where:

  • there is variation in practice, and enough evidence is available to identify what works best

  • people living with dementia need different care and support to people in the same situation who do not have dementia.

How has it been developed?

This guideline has been developed by a multidisciplinary guideline committee, using an extensive review of research evidence. To ensure that the committee had the necessary social care expertise, a subgroup of social care practitioners was recruited to develop recommendations in this area.

Given the costs of dementia and the financial pressures facing health and social care services, the committee focused on making recommendations in areas where there is good evidence available. This will help services make the most of limited resources. For areas with a lack of evidence, the committee has made recommendations for future research (on health and social care topics) to address gaps in the evidence base. Future updates of the guideline will look at any relevant new research that has been published.

Some recommendations are made with more certainty than others. We word our recommendations to reflect this. In the sections on interventions we use 'offer' to reflect a strong recommendation, usually where there is clear evidence of benefit. We use 'consider' to reflect a recommendation for which the evidence of benefit is less certain. For more information see making decisions using NICE guidelines.

How does it relate to statutory and non-statutory guidance?

The guideline complements existing legislation and guidance. It describes how services and professionals can provide high-quality care and support.

The Prime Minister's Challenge on Dementia 2020 sets out the UK Government's strategy for transforming dementia care within the UK. The aims of the strategy include:

  • improving diagnosis, assessment and care for people living with dementia

  • ensuring that all people living with dementia have equal access to diagnosis

  • providing all NHS staff with training on dementia appropriate to their role

  • ensuring that every person diagnosed with dementia receives meaningful care.

Since the 2006 NICE guideline on dementia was developed, key new legislation has been implemented. The Care Act 2014 created a new legislative framework for adult social care, and also gives carers a legal right to assessment and support.