New £1 million initiative aims to transform end-of-life care for dementia patients
Five new research projects aimed at transforming end-of-life care for people living with dementia have been announced as part of a £1 million partnership between charities the Alzheimer’s Society and Marie Curie.
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The initiative comes amid growing concern over inadequate palliative care for dementia patients, with Marie Curie citing that just 25% of those with dementia receive specialist end-of-life support - compared to over 80% of people with cancer.
Nearly one million people in the UK live with dementia, now the country’s biggest killer, according to the Alzheimer’s Society.
The condition leads to a progressive decline in brain function, affecting memory, cognition, mood, and the ability to carry out everyday tasks.
The five funded projects will explore a range of improvements, including:
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– Training homecare workers, many of whom lack training in end-of-life care, to use a tool designed to help carers identify symptoms, assess needs and communicate with healthcare professionals
– Developing an index that contains the information and skills needed to navigate end-of-life care for people with dementia
– Analysing national survey data from bereaved families to look at how primary and community care services affect rates of hospital admissions to try to improve community care
– Adapting a digital tool that allows people with dementia and their carers to log symptoms, triggering alerts for healthcare teams
– Collating information from national healthcare data and people with lived experience of rare dementias to explore how and when palliative care is accessed.
Stuart Jennings, vice-president of the Alzheimer’s Society and whose wife, Carol, died from the disease, said: “Carol and I were married for almost 50 years and I was her carer for 12: It was one of the greatest privileges of my life. Carol was warm, headstrong and confident.
“We know exactly what good end-of-life care should entail, having had brilliant support from a range of carers, nurses and family members, but sadly, we know this is not a universal experience for many people living with dementia.”
He added: “Getting good end-of-life care and support should not be a postcode lottery. It should be universal. We all have a right to spend our final moments in a place of our choosing, free of pain, with our needs and conditions fully understood.
“I welcome this new research focusing on end-of-life care for people with dementia. I hope more people will be able access the quality of care and support we did at the end.”
Lesley Baldrian, senior nurse at end-of-life charity Marie Curie, said: “I’m incredibly proud of the care and support we offer for people living with a late-stage dementia diagnosis here at the Marie Curie Dementia Care and Respite Service in West Glamorgan.
“Sadly, however, we know huge gaps remain, not only in the provision of specialist palliative care for people with dementia but in the understanding of the complex needs of end-of-life dementia care.
“Increasing the amount of research, support, respite and end-of-life care could be transformative for patients and their families.
“There is only one chance to get end-of-life care right.”
The projects are due to start later this year.