New end of life care models for dementia patients said to be “synthesis of best practice"

Research published today from University College London (UCL) and King’s College London, which has been funded by the terminal illness charity Marie Curie and the Alzheimer’s Society, showcases four heuristics – or “rules of thumb” – to facilitate high-quality end of life care for dementia patients.

The heuristics have been described as a “synthesis of best practice”, and have been trialled in five clinical and care settings (a complex care acute hospital ward, one general practice, one community nursing team and two palliative care community teams). They offer guidance on providing routine care at the end of life, agitation and restlessness, reviewing treatment and interventions and eating/swallowing difficulties for people with dementia at the end of life.

Dementia is now the most commonly recorded cause of death in the UK but dementia guidelines often have little discussion on how to best care for people with dementia when they are dying. Family members with experiences of supporting relatives with dementia at end of life helped the research team make sure their ideas were based on real-world problems.

There are 850,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2025. A high proportion of people with dementia are living in a care home at the time of their death (just under 60% in England). These heuristics offer an easy to understand training aid for people working in care homes and other health and social care settings where staff need more experience in identifying, and caring for people with dementia at the end of life.

Dr Nathan Davies at University College London who helped design the heuristics said:

“Dementia, and how we care for the people dying with the condition, is a global concern. The rise of the condition is seeing an increased reliance on care homes and also acute care settings where clinical staff have less experience of palliation and end of life care. Having tested the heuristics, healthcare professionals have told us how valuable the guidance is as a training guide for generalist care but also as an on-going reference to help build confidence and, ultimately, improve the care people with dementia receive when they are dying.”

 Julie Pearce, Director of Nursing, Allied Health Professionals and Quality at Marie Curie, said:

“We know that people living with dementia are vulnerable. They often experience challenging and distressing symptoms which they find difficult to communicate, especially towards the end of their lives.  These visual tools enable practitioners to confirm the best way of managing care with the individual person and their family. I can see that they could also be an effective teaching tool for others who are less experienced and are learning to understand the best ways to care for people. As the research paper suggests, I would be interested to see how this heuristics approach could be applied and evaluated in other areas of end of life care for people living with a range of conditions.”

James Pickett, Head of Research at Alzheimer’s Society said:  

“Despite dementia being the UK’s biggest killer, our health and social care system is woefully unequipped to provide good quality end of life care for people living with the condition.

 “We often hear from nurses and GPs that a lack of guidance means even experienced staff feel ill-equipped, for instance in how to manage agitation, help a person with swallowing issues or honour a do not resuscitate order.

 “People with dementia have the right to palliative care which maintains their dignity, keeps them comfortable and reduces their distress.

 “This Alzheimer’s Society supported study is a step towards that goal. Nurses and GPs who trialled the new decision tool said they now feel more confident and empowered to make the right decisions to support people with dementia and deliver better end of life care.”

The evaluation of the heuristics has been published today in the journal PLOS ONE. Heuristics, as described in the paper are “broad principles, which can be applied in complex situations, prompt thinking, and lead to action.”

The heuristics and supplementing guidance can be found on the Marie Curie Palliative Care Knowledge Zone and UCL website.