Palliative care: time for a change of focus

Professor Nathan Davies, University College London 

As people live longer, more are being diagnosed with dementia, leading to what is referred to by Paola Barbarino in this issue of JDC as a “tsunami of demand”. We know that it is now the leading cause of death in the UK and that palliative care needs are expected to increase 25% by 2040, with the biggest increase expected among those living with dementia.  

More often than not, the condition is not recognised as terminal or seen as requiring palliative care, which is perceived as care provided only at the end of life. The unpredictable trajectory and nature of dementia means it can be hard to identify when someone is at the end of life and palliative care may be appropriate.  

But there is also a debate about when palliative care should begin for someone with living with dementia.  Should it begin immediately following diagnosis, which some consider too soon, or in the severe stages of dementia which many people may not actually reach?  In our view, palliative care can be adopted earlier in the disease trajectory and should not be limited to the end of life.  

Our recent work at UCL suggests there should be a shift of focus from prognosis and time-based approaches to palliative care for dementia, towards a more needs-based approach that considers the holistic needs of the individual and those close to them.  It should attend not just to their physical needs, but also their emotional, psychological, and spiritual needs. 

As dementia is the main underlying condition for deaths from Covid-19, the pandemic has made made palliative care more visible through 2020 and 2021. It brought about a different approach to care and new ways of working, especially given the loss of face-to-face support services.  Many family carers felt alone when providing end of life care at home and were having to make difficult and emotive decisions with little support.  

Consequently, we developed a decision aid to help carers make these tough decisions on things like hospital admissions, care home support and continuing to live at home. As the pandemic continues into 2022, it is important we consider how best to support families and people living with dementia at home, as adopting a palliative care approach early on can provide notable benefits.  

It’s good to see that Marie Curie, a charity dedicated to care and support through terminal illness, is leading calls for the commissioning of end of life care services in England.  This is vital in light of the increase in numbers of people dying at home during the pandemic. But we need to do more. Our Empowering Better End of Life Dementia Care (EMBED-Care) programme aims to spark public conversation about about death and dying, develop new approaches to delivering palliative care and share with everyone the value of palliative dementia care.  

Dr Nathan Davies is associate professor of ageing and applied research, and deputy director of the Centre for Ageing Population Studies at UCL.