'Worry' at reliance on emergency care for dementia patients nearing end of life

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There has been a "worrying" increase in the reliance on emergency care for dementia patients nearing the end of their lives, experts have warned.

Researchers have called for better support in the community for dementia sufferers after a new study found that patients are increasingly relying on emergency care as they near death.

They warned that emergency department visits can be "distressing" for patients and are considered preventable in a high number of cases.

And emergency department use towards the end of life may indicate inadequate availability of community care, according to the authors of a new study published in the journal Alzheimer's & Dementia.

Experts from King's College London conducted a retrospective study examining electronic medical records from a large mental health care provider in south London.

They examined data on 4,867 dementia patients who had died between 2008/9 and 2012/13 with a mean age of 85.

During their last year of life, these patients attended A&E 10,361 times - with 79% of patients having at least one attendance.

Researchers found that the frequency of attendance at A&E increased as participants drew closer to death, with 44% of the participants having at least one attendance during their last month of life.

These attendances were more likely to be emergency referrals, by ambulance or out of hours, which suggests these visits were "unplanned and precipitated by an acute crisis," the authors added.

The average number of A&E attendances per patient during the last year of life increased over the time from 1.6 visits in 2008/9 to 2.4 visits in 2012/13.

"For people with dementia, high rates of emergency department attendance near the end of life may indicate inadequate availability of community care, a paucity of advance directives, or lack of focus on patients' quality of life," the authors wrote.

Being resident in a care home was associated with reduced likelihood of A&E attendance, the authors said, adding: "Although care home capacity has increased in some parts of England in recent years, other areas have seen a loss of care homes. Given the projected increase in prevalence of dementia with population ageing, this issue requires urgent attention."

Lead author, Dr Katherine Sleeman, from the Cicely Saunders Institute at King's College London, said: "Our results show a worrying increase in the reliance on emergency care. In light of the current pressures on the health service, our ageing population and the associated increase in deaths from dementia, there is an urgent need to look at ways we can provide better support for care in the community."

Commenting on the study, Simon Jones, director of policy and public affairs at the charity Marie Curie, said: "Admissions to A&E for people with dementia in the last year of life are often unnecessary and avoidable. We know that, with the right support and resources in place, it is possible to deliver high-quality end-of-life care within the community.

"This research adds to the growing evidence that health and social care services are simply not receiving enough support to ensure that people receive the care that they need. Hospital can be the worst possible environment for someone suffering from the confusion associated with dementia and it should not be considered the default place for people to be cared for in their final days.

"One third of people in the UK aged over 65 will die from some form of dementia and many are currently not getting the care that they need and deserve. With numbers only set to increase, thousands will continue to experience unnecessary pain and distress at the end of their lives unless drastic measures are taken."

A Department of Health spokesman said: "We want England to be the best place in the world to live with dementia.

"As part of this, the implementation of our Dementia 2020 challenge will ensure that everyone can be supported to be as independent as possible and get the care and support they need, wherever they live.

"High-quality care isn't just about care home beds - 61% of people are cared for in their own home and since 2010 there has been a growth in home care agencies of more than 2,900.

"We've given local authorities in England an extra £2 billion boost over the next three years to maintain access for our growing ageing population."