‘Limited access’ to specialist dementia nurses at end of life, report finds

A dementia charity has called for expanded access to specialist dementia nurses after a survey revealed that people living with dementia are routinely left without support they need at the end of their life.

Dementia UK’s new report, A better death: fixing palliative and end of life care for dementia, warned there was ‘limited access’ to specialist dementia nurses, such as Admiral Nurses, across the country and urged government to invest in specialist services such as this to ensure continuity of care.

The findings are based on two surveys conducted last summer – one of 357 people who had been diagnosed with dementia or who are currently caring for someone with dementia (cares) and one of 1,259 people who had previously provided care for someone with dementia who had since died (former carers).

The report surmised that ‘many people with dementia are not receiving timely, coordinated palliative care’ and that access to Admiral Nurses ‘remains inconsistent and unfairly distributed across the UK’.

Admiral Nurses are specialist dementia nurses, developed and support by Dementia UK, who provide free, expert advice to support families.

In the report, the charity explained that Admiral Nurses ‘already provide [a] lifeline for many families’ through ‘their expert knowledge, continuity of care and emotional support’.

However, results showed only 12% of former carers reported that they had accessed a specialist nurse during the end of life stage.

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This is despite 42% of carers reporting that access to specialist dementia nurses was the most useful/beneficial resource for people with dementia at the end of their life.

The charity added that Admiral Nurses can ‘support the wider workforce to deliver high-quality palliative and end of life care’.

Other key findings included that almost half (46%) of families said they were not told what to expect as a loved one living with dementia approached the end of their life, while 71% of current and former carers said they did not receive enough support.

Meanwhile only 28% of current carers and people living with dementia said they had been supported by a professional to plan for future health and care needs.

The report sets out a list of recommendations for the government, including a call to ‘ensure continuity of care is a priority by funding specialist dementia services, such as Admiral Nurses’.

In addition, the charity is also called for ‘consistent, meaningful advance care planning’ for those diagnosed with dementia and better care at the end of life by ‘improving workforce training’ so health and care professionals can ‘better recognise and manage symptoms experienced by people with dementia’.

Dr Hilda Hayo, Dementia UK’s chief Admiral Nurse and chief executive, said the report marked a ‘real opportunity’ to make improvements for palliative care.

‘Living with dementia brings physical, emotional and practical challenges, and too many people are left to navigate this journey alone,’ she said.

‘This report reflects the clinical expertise of our Admiral Nurses and the honest experiences of people living with dementia in the UK today.

‘With the government developing new national frameworks for both dementia and palliative care, there is a real opportunity to ensure people with dementia receive the coordinated, compassionate care they need at the end of life.

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‘We hope these recommendations are taken on board during a period of significant reform for the health and care system.’

Stuart Andrew, shadow secretary of state for health and social care has lent his support to the report. He said: ‘Too many families are being left to navigate the final stages of dementia without the support, guidance or specialist care they need.

‘Dementia is a life-limiting condition, yet too often people are not given the information and support to plan ahead, leaving families unprepared at the most difficult time.

‘This report from Dementia UK highlights the urgent need for earlier planning, better end of life care and greater recognition of the challenges faced by people living with dementia and those who care for them.’

Today’s findings come as a parliamentary committed warned that too many patients are spending their last days in hospitals rather than at home or in hospice care.

The Public Accounts Committee (PAC), which has been running an inquiry focused on hospice finances, revealed how some hospices have recently reduced ‘essential services’ despite demand for palliative and end-of-life care rising.

A report from Hospice UK revealed last year that some district nurses were having to employ ‘less qualified staff’ to fill roles that require specialist palliative care skills because of recruitment challenges.

The Department of Health and Social Care spokesperson said: ‘Following a decade of neglect, we are aware that our health and adult social care system has struggled to support those with dementia and other complex needs and are committed to turning this around.

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“’e want every person living with dementia to receive the high standard of care they need and deserve from diagnosis through to end of life.

‘We will deliver the first ever Modern Service framework for Frailty and Dementia to deliver rapid and significant improvements in quality of care and productivity.’

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