Research finds people with dementia receive little specialist support at end of life, despite high levels of need

Researchers have found that despite having complex needs, most of the healthcare received by people in the later stages of dementia is provided by GPs or emergency services, with little support from specialist healthcare professionals.

The researchers, from the Marie Curie Palliative Care Research Department at University College London, found that GPs were the main providers of medical care, with 96% of people with advanced dementia  seeing a GP in their last month of life. Paramedics also played a major role in assessment and healthcare towards the end of life, suggesting a reactive rather than planned response to patients’ needs – nearly one in five (19%) were seen by a paramedic in the month prior to their death. 

Rob Burley, Director of Policy at Alzheimer’s Society, said: “Sadly, I’m not at all surprised by these findings. Dementia is often overlooked as a terminal condition – but it is set to be the 21st century’s biggest killer. More needs to be done to ensure the right services are in place at the right time so that the later stages of the dementia journey are as comfortable as possible.

“Good palliative care should take a holistic view whilst considering a person’s emotional, physical and medical needs, as well as the needs of their family. This study reveals the opposite: dignity and quality of life appears to be playing second fiddle in a care system that is failing to meet the needs of people living with dementia.

“It is degrading and frankly cruel that people with dementia are suffering chronic pain and persistent psychiatric symptoms without specialist treatment. We call for people to unite against dementia and to be well supported by professionals throughout their care journey. The option of palliative care should be made available to all those with a dementia diagnosis.”