The report published today by Marie Curie and Alzheimer’s Society, examines the reasons why people with dementia are often unable to access high-quality care at the end of life in England.
One of the main barriers highlighted is the fact that often dementia is not recognised as a terminal illness. The report also says that ineffective advance care planning and poor pain management, as well as limited access to palliative and hospice care, contribute to poor care for those at the end of life.
The report highlights other problems such as inconsistency in care standards in hospitals, inappropriate hospital admissions and a failure to adapt practice to reflect the different nature of dementia.
‘Dementia remains hidden’
The national charities are aiming to bring together NHS organisations, social care bodies, royal colleges, charities, researchers, and people with experience of dementia and end of life care, to plot out how to address the barriers and develop an action plan that each organisation can to sign up to.
Phil McCarvill, head of policy and public affairs at Marie Curie, 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.
“I know from the personal experience of caring for my father that people with dementia have very specific needs. All too often, services do not respond to the needs of the individual. That is why are calling on a number of organisations to work with Marie Curie and Alzheimer’s Society to improve care and support for people with dementia at the end of life.”
Jeremy Hughes, chief executive at Alzheimer’s Society, added: “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 lot needs to happen to improve care. Improving staff training and awareness is vital in order to help make people’s final days as good as they can be. Mapping this journey is difficult but considerations for end of life care for people with dementia are essential to meet the needs and dignity of each individual and their loved ones.”
Hospices are increasingly providing care for people with dementia
Jonathan Ellis, director of policy and advocacy at Hospice UK, commented: “There is an urgent need to improve care for people with dementia facing the end of life and it is shocking that they face so many barriers to getting the support they need.
“Hospices are very aware of this challenge and are increasingly providing care for people with dementia, with many taking on specialist staff to meet their needs. Outreach support to care homes and shared day services are some of the many initiatives already in place. Hospices are running joint education programmes for colleagues in dementia services to increase confidence with advance care planning and support in the final months of life.
“Most hospice care is provided in the home, so hospices are well placed to support care for people with dementia in a familiar setting and which also includes vital support for their families. Many hospices are working with their local hospitals to reduce inappropriate admissions at the end of life, including those people with dementia, and provide alternative care options. Earlier this year Hospice UK launched a programme to expand this work across the country.
“We welcome this report’s recommendations, particularly the need for a wide range of organisations with expertise in dementia and end of life care to work together to tackle this issue and ensure that more people with dementia have access to high quality end of life care and are treated with dignity.”