Dying with dementia at home – but relying on emergency care

The number of people with dementia who visit the emergency department in their last year of life is rising, prompting calls for better care planning and more support for families. 

The number of people with dementia who visit the emergency department in their last year of life is rising, prompting calls for better care planning and more support for families 


More people with dementia are dying at home and not in hospital, an indication that end of life care is improving. However, this does not mean they are spending their final months, weeks and days surrounded by home comforts, away from the clinical setting. 

A study of almost 5,000 people with dementia has revealed that nearly eight out of ten attended the emergency department at least once in the last year of life, with some attending multiple times. Almost half were there in the last month of life, and a fifth died within a week of their last visit to the emergency department.

Most people with dementia visit the emergency department in their last year of life, research shows. Picture: John Houlihan

National Institute for Health Research clinician scientist Katherine Sleeman, who led the study, says this dependence on hospital intervention is a cause for concern. ‘Over the last decade there has been a strong focus on dying out of hospital,’ she says. ‘It’s seen as a marker of good quality care. But it’s actually a really simplistic marker, because it doesn’t show where people are in the hours and days before they draw their last breath. And our study shows most people are visiting A&E in their last year of life, which suggests a worrying reliance on emergency care.’


Dr Sleeman, honorary consultant in palliative medicine at the Cicely Saunders Institute, King’s College London, says that although sometimes it might be appropriate for people with dementia to access urgent hospital care, in many cases it is not. And these visits can often be detrimental to patients’ health. ‘It can lead to bad outcomes, such as deteriorated mental and physical function,’ she adds.

‘Hospital deaths are going down and I expected to see that emergency attendances would also be reducing. But they are actually increasing, which is a cause for concern’
Katherine Sleeman

Researchers gathered data from several sources to examine emergency department use among people with dementia in their last year of life between 2008 and 2013 (see box). The finding that surprised Dr Sleeman was that emergency department attendance became more common over time, which suggests that the situation is worsening. ‘Hospital deaths are going down and I expected to see that emergency attendances would also be reducing,' she says. 'But they are actually increasing.’

Although she acknowledges that emergency department attendances are rising across the board – probably as a result of pressures in the wider health and social care systems – Dr Sleeman believes that the increasing attendance among people with dementia indicates a lack of capacity and care planning in the community.

Accessing resources

Dementia nursing expert Deborah Sturdy, director of health and well-being at Royal Hospital Chelsea in London says the research shows the need for not just better advanced care planning but also more support for families looking after loved ones. ‘We need to recognise that dementia does not preclude you from other diseases and conditions associated with later life,’ she says. ‘But we also have to ask if A&E attendance reflects poor access to community support. Are we seeing family carers turning to the A&E in desperation because they are under so much strain?’

Professor Sturdy would like to see improved community-based services as well as targeted help for carers, many of whom feel that they're going it alone. ‘Better hospice provision, properly funded, would help, as would dementia-specific support towards the end of life,’ she says. ‘We also need more community-based hospice specialty teams, such as we are already seeing in care homes, to work in the wider community.’

Giving emergency departments rapid access to community nursing support would also mean that more people can be treated safely at home rather than being admitted to hospital, adds Professor Sturdy.

Carer support

Karen Harrison Dening

Dementia UK head of research and publications and former specialist dementia Admiral Nurse Karen Harrison Dening believes that a lack of carer knowledge and resources in the community can mean people err on the side of caution and send a patient to hospital in their final days and weeks of life, when they would be much better staying at home. ‘If something happens, and family carers don’t have the confidence to deal with it, then they might panic – and the person with dementia ends up in hospital. It’s not that they don’t have a care plan, but there’s nobody to see that care plan through.’

She points to a study completed when she was a consultant Admiral Nurse in London, which looked at hospital admissions for people with dementia. ‘One chap went into hospital six times in his last year of life, at a cost of £42,000,’ she says, adding that this would have paid the salaries of one and a half senior nurses providing education and support for care homes. ‘There are pockets of good practice but what we need is properly coordinated care that works across the disease process, from diagnosis through to end of life.’

The research shows that people living in care homes had fewer emergency admissions, which suggests that residents have care plans in place to avoid this. Professor Sturdy says the developments in end of life care in residential homes could be extended into the community.

‘There has been a growth in partnerships between hospices and care home end of life teams, and this should be welcomed,' she says. 'This work is improving care for many people and is also supporting care home nurses to develop skills. If we were to consider care homes as additional end of life partners in local communities, with skilled staff to support families in caring for a family member at home, we could increase capacity in the system as well as creating local support and advice.’

System under strain

As the population continues to age, more diagnoses of dementia are expected and campaigners insist urgent action is needed to improve end of life care and lessen the burden on hospitals.

Alzheimer’s Society director of campaigns and partnerships Rob Burley points out that dementia is set to be the 21st century’s biggest killer. ‘It’s vital that health and social care professionals work together to get end of life care right,’ he says. ‘Good quality end of life care is also about ensuring that people have a care plan tailored to meet their individual needs and wishes, preventing stressful emergency admissions. People with dementia should receive personalised care at home or in their community, which we know is what they want.’

He is not surprised that the number of people with dementia who visit the emergency department in their final year is rising. ‘Our investigations have exposed a chronically underfunded care system that is unable to fully meet the needs of people with dementia, placing immense strain on the wider health system,’ he says.

‘People with dementia are consistently being let down by poor quality care. We urgently need the government to prioritise social care reform, to not only alleviate the pressures on hospitals, but also create a care system fit for an ageing population.’

A picture of out of hours visits and ‘acute crises’

The King’s College London study identified 4,867 people with dementia who had died over the five years from 2008-13 and found that:
• Almost eight out of ten (78.6%) had at least one emergency department attendance in the last year of life.
• In their last year of life, the 4,867 people attended the emergency department a total of 10,361 times.
• Just under half (44.5%) had an emergency department attendance in the last month in life, and a fifth attended in the last week of life.
• The situation appears to be worsening; people who died in 2013 were 1.6 times more likely to attend the emergency department than those who died in previous years.
• People living in care homes had fewer emergency department visits.
• Attendances were more likely to be emergency referrals, for example by out-of-hours services, suggesting they were unplanned and precipitated by ‘acute crisis’; almost half occurred in the out-of-hours period.

Further information

Read the full study here

Jennifer Trueland is a freelance health journalist

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