Research findings into end of life services for UK dementia patients

by Eilis Keeble
Intern, Analytics team


I recently conducted an evidence review looking at end of life services for dementia patients in the UK. An estimated 800,000 people in the UK are living with dementia – and the number is expected to more than double by 2050. As an intern with the Analytics Team at Marie Curie, I was asked to look at the evidence relating to people with dementia and the end of life care that they get.

Inappropriate care

Although dementia is a leading cause of death, many dementia patients end up with inappropriate care and are unable to access palliative care and hospice services. A study in an acute medical ward suggested that dementia patients who are admitted to hospital are significantly less likely to be referred to specialist palliative care or to be prescribed palliative medication. Research also shows that less than 2% of hospice in-patients have a primary diagnosis of dementia.

Barriers to end of life care

The first barrier is around diagnosis and prognosis. The Alzheimer’s Society found that dementia can be difficult to diagnose in its early stages, and lack of diagnosis can restrict access to services. The social stigma around dementia also means that some people are afraid to ask for help.

The second barrier is a reluctance amongst some healthcare professionals to identify dementia as a terminal illness.

Thirdly, there is often a very long time period between diagnosis and death. This makes it difficult for doctors to provide an end of life prognosis. Waiting for advanced dementia to appear before proceeding with palliative care is not beneficial for patients.

Finally people with dementia often face discrimination which lessens the quality of care they are provided with.  The Alzheimer’s Society has found that dementia is often assumed to be a symptom of getting old, and those with dementia have less access to mental health services, compared with younger people with other mental health conditions. A systematic review of end of life care for patients with dementia also indicated disparities in care between ethnic groups.

Where people die

Studies have shown that many dementia patients would like to die at home. However many die in nursing homes or acute hospitals. Research from UCL has shown that the emergency admission of an older person to an acute hospital increases their short term mortality risk.

Benefits of palliative care

One of the key benefits of palliative care for patients with dementia is its approach to symptom management. There are often communication issues over the severity of pain of dementia patients. Researchers at UCL found that significantly more dementia patients experience pain in the last six months of life compared to those with cancer (75% versus 60%) and pain control is often inadequate. Palliative care could be the ideal approach to caring for people with dementia as it has a huge focus on symptom management.

Another study showed that dementia patients’ families want improved patient comfort and more advance care planning, both of which could be provided under a palliative care strategy.

The UK is not providing the end of life care that people with dementia need. The barriers to good care must be challenged and innovative solutions generated. Palliative care can help to do this.

  • Eilis has just completed a two-month internship with the Analytics Team at Marie Curie. This report and the ongoing research into dementia and end of life care at the Marie Curie Palliative Care Research Unit at University College London are helping Marie Curie and other organisations to ensure that these barriers are tackled.