A report by Marie Curie Cancer Care and the Alzheimer’s Society said dementia sufferers faced barriers to receiving the high-quality care they require.Â
More than 800,000 people in the UK are thought to have the incurable disease.
The government said the issues raised were being addressed. The charities say they will develop an action plan.
Dementia is an umbrella term used for about 100 diseases in which brain cells die on a huge scale.
Alzheimer’s disease is the most common form of dementia, which affects brain function and causes problems with memory, mental agility, language skills, and the ability to carry out everyday tasks.
The report draws on research from across the UK and particularly from University College London, as well as findings from health and social care services.
It addresses 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, a charity that provides care for terminally ill people.
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.”
It said the response to terminal illness and death from these types of illnesses had been shaped in response to cancer.
And said core services now needed to transform to respond to the needs of people with other diseases, such as dementia.
How common is dementia?
Mr McCarvill said: “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.”
Jeremy Hughes, chief executive at the 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.”
Both charities now aim 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 the report has raised and develop an action plan.
A spokesman for the Department of Health 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.”
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