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New NICE guidance on supporting people living with dementia

The National Institute for Health and Care Excellence, NICE, has updated its guidelines on providing care and support for people living with dementia.

NICE guideline NG97, Dementia: assessment, management and support for people living with dementia and their carers, was published in June 2018. It updates and replaces the previous guideline, CG42.

The new guideline also replaces recommendation 1.3 in the NICE technology appraisal guidance on donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer’s disease (TA217).

Written to reflect the latest thinking on person-centred care, NICE states that the new guideline also takes into account latest methods for diagnosing and assessing dementia and makes recommendations on dementia diagnosis based on a review of the recent evidence.

For instance, the updated guidance refers to evidence on different approaches to assess and diagnose dementia subtypes. In addition, amyloid imaging techniques have been licensed for use in the UK, and new evidence is available for cerebrospinal fluid examination.

NICE states that 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. Instead, the 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 and focuses on areas where there is variation in practice. It addresses areas where there is evidence to identify what works best, including where this involves care coordination and staff training, and how dementia may impact on the care offered for other conditions.

The guideline was developed by a multidisciplinary expert committee using an extensive review of research evidence. It has been developed to support and complement existing legislation and strategy, including the Care Act 2014 and the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014.

The guidelines make a wide range of recommendations, including:

  • people living with dementia should be encouraged and enabled to give their own views and opinions about their care (recommendation 1.1.1)
  • people living with dementia and their family members or carers (as appropriate) should be provided with information that is relevant to their circumstances and the stage of their condition (recommendation 1.1.4)
  • after diagnosis, people and their family members or carers (as appropriate) should be directed to relevant services for information and support (recommendation 1.1.8)
  • at the initial assessment a history should be taken from the person with suspected dementia and, if possible, from someone who knows the person well (recommendation 1.2.1)
  • people living with dementia should be provided with a single named health or social care professional who is responsible for coordinating their care (recommendation 1.3.1)
  • people living with dementia should have equivalent access to diagnosis, treatment and care services for comorbidities and long-term conditions to people who do not have dementia (recommendation 1.8.1)
  • care and support providers should provide all staff with training in person-centred and outcome-focused care for people living with dementia (recommendation 1.13.1)
  • care providers should provide additional face-to-face training and mentoring to staff who deliver care and support to people living with dementia (recommendation 1.13.2)

Announcing the publication of the new guidelines, Professor Gillian Leng, deputy chief executive at NICE, said:

‘Our recommendations align with the government’s ambitions for dementia care. They also chime with the recently published guidance from the Department of Health and Social Care on what to expect from health and care services after a diagnosis of dementia.

There are over 850,000 people in the UK with dementia, and this figure is expected to double in the next 30 years. It is therefore more important than ever that we work together to be able to support those that are affected as well as their families and carers.”

The new guidelines have been welcomed by those involved in supporting people living with dementia.

For instance, Sally Copley, Director of Policy, Campaigns and Partnerships at Alzheimer’s Society, said:

“With one person developing dementia every three minutes in the UK, it is vital we prioritise dementia care. This is the first update to the NICE guideline in 10 years, so it’s encouraging to see the steps it’s taking to ensure the needs and rights of people with dementia are met.”

NG97, Dementia: assessment, management and support for people living with dementia and their carers, is available online on the NICE website https://www.nice.org.uk/.

The new guidance sits alongside NICE guideline NG16, Dementia, disability and frailty in later life – mid-life approaches to delay or prevent onset, published in October 2015.