In June 2018 the National Institute for Health and Care Excellence (NICE) published guidance on dementia – which was the second dementia guideline – refreshing and replacing the original one published in 2006. This guideline is the key resource around diagnosis and management of dementia. It covers off a number of recommendations around training for dementia care staff as well as helping people to live with dementia now and in the future.
I have been privileged to be a member of both the original and the refreshed dementia guideline committees, and have reflected on many changes and developments over the years. Both guidelines were quite revolutionary in their scope in that they covered both the health and social care of dementia whereas, traditionally, NICE guidance has focused largely on health interventions. This gives a clear message that dementia affects people on a range of levels; physically, mentally and socially.
With regard to my own research interests in end of life care in dementia, it is clear that there was a lack of guidance on how to approach this area. However, I know that these new guidelines have improved the situation greatly, and not just for end of life care. A huge growth in dementia research has followed and many of the most prominent researchers in the field are now based in the UK which is very heartening.
The guidelines contain new advice on a number of areas, including support for people with dementia and their carers, end of life care and staff training. However, of most interest to me and Admiral Nursing are the recommendations that help in developing a case management approach for families affected by dementia – an approach that lies at the heart of the Admiral Nurse model. These include:
- Providing people living with dementia with a single named health or social care professional who is responsible for coordinating their care
- The importance of palliative care and ensuring that families living with dementia have access to the most appropriate care pathways in response to their needs, rights and wishes
- Assessing and managing other long-term conditions in people living with dementia to ensure that they have equal access to diagnosis, treatment and care services for secondary conditions when compared to people who do not have dementia
- Supporting carers in education about dementia, its symptoms and the changes to expect as the condition progresses; coping strategies and building carer skills; training to help people provide care, including how to understand and respond to changes in behaviour, and much more.
Overall, these new NICE guidelines represent a major advance over the original guidance, and should improve the diagnosis, management and care of all those with dementia. It’s a big step forward that these guidelines now recognise the great importance of the case management approach as well.
Dr Karen Harrison Dening
Head of Research & Publications
 NICE (2018) Dementia: assessment, management and support for people living with dementia and their carers. https://www.nice.org.uk/guidance/ng97/chapter/Recommendations#supporting-carers