Dementia sufferers missing out on proper care

By The Press Association1st December 2014News EnglandCare Standards, Dementia, End Of Life Care, News England, Older People

Dementia sufferers lack proper care because the illness is not recognised as a terminal diagnosis, according to a report out today.

The report, by Marie Curie and the Alzheimer’s Society, highlighted the issues faced by dementia sufferers in the late stages of their lives and the barriers to the high-quality care they require.

The report addressed the terminal nature of the illness, calling it “the forgotten aspect of what has been referred to as a ‘silent epidemic'”.

“The issue is system-wide, there are so many opportunities for people to fall through the gaps,” said Phil McCarvill, head of policy and public affairs, at Marie Curie.

The report said: “To date much of the focus has been on living well with dementia, with little focus on the experiences of people with dementia nearing the end of their lives.

“We must ensure a stronger focus on the inevitable conclusion of what is a progressive, terminal condition. Those with dementia will die (whether directly as a result of dementia or of another co-existing condition) and we must improve the care of people in the later stages of dementia.”

This comes as the Alzheimer’s Society suggested around 225,000 people will develop dementia this year, equivalent to one person every three minutes.

The report said that because dementia is not often seen as a terminal diagnosis it can lead to poor access to care, inconsistent quality of care and inadequate pain management.

These problems involve inconsistencies in care standards and inappropriate hospital admissions as well as poor access to palliative care, hospice care and funding.

The report also said: “Many of our responses to terminal illness and ultimately to death and dying have been shaped in response to cancer.”

It went on to say core services needed to transform to respond to the needs of people with conditions such as dementia.

Mr McCarvill said: “Unless someone has a formal diagnosis (of dementia), the response of health professionals will be very different to the patient.

“End of life care for people with dementia remains a hidden aspect of health and social care in England so it is vital that we shine a light on the final stages of dementia to improve care and support for people and their families.

“I know from the personal experience of caring for my father that people with dementia have very specific needs.”

The Alzheimer’s Society said the number of people affected by dementia in the UK will reach 850,000 by 2015. By 2030, the proportion of the UK aged over 85 is expected to double.

The charity said these figures suggested the UK would see a significant increase in the number of people with dementia. The Office for National Statistics has previously said that the illness is the leading cause of death in women and the third leading cause of death in men.

The new report draws on research from across the UK and particularly from University College London, as well as findings from health and social care services.

Following its publication, Marie Curie and the Alzheimer’s Society is aiming to bring several groups dealing with dementia patients together – including NHS organisations, social care bodies, charities and researchers – in a bid to tackle the issues it has raised and develop an action plan.

Jeremy Hughes, chief executive at Alzheimer’s Society, said: “Dementia is frequently overlooked as being a terminal illness and as a consequence, there are unacceptable failures to prepare and plan for end of life care.

“Despite much attention on dementia in recent years, many people with dementia are not dying where they had hoped; others face meeting the end of their life in pain or without dignity.”

A Department of Health spokesperson said: “We are putting an unprecedented focus on ensuring that dementia patients get high quality care tailored to their needs right through their illness – including the end of their lives.

“NHS England is addressing the issues raised by this report as part of a wide range of initiatives, including the upcoming refresh of the End of Life Care Strategy.”