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Dementia patients lack proper care, says report | Dementia patients lack proper care, says report |
(about 3 hours later) | |
Dementia sufferers are not getting the care they need because the condition is not recognised as a terminal illness, two leading charities have claimed. | Dementia sufferers are not getting the care they need because the condition is not recognised as a terminal illness, two leading charities have claimed. |
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. | 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. |
More than 800,000 people in the UK are thought to have the incurable disease. | 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. | 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. | 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. | 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. | 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. |
'Silent epidemic' | 'Silent epidemic' |
It addresses the terminal nature of the illness, calling it "the forgotten aspect of what has been referred to as a 'silent epidemic"'. | 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 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. | 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." | "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. | 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. | 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? | How common is dementia? |
Source: Alzheimer's Society and the Office for National Statistics | Source: Alzheimer's Society and the Office for National Statistics |
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." | 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. | 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." | "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. | 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. | 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." | "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." |
Is a member of your family affected by dementia? Are you affected by the issues in this story? Email your experiences to haveyoursay@bbc.co.uk. | |
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