Families ‘Left Without Support Warns Dementia UK at Launch of New Report into Palliative and End of Life Care
Nearly half (46%) of families say they were not told what to expect as a loved one living with dementia approached the end of their life, while 71% of current and former carers say they did not receive enough support.
The findings are published in Dementia UK’s new report, A better death: fixing palliative and end of life care for dementia. The charity warns that many people with dementia are not receiving timely, coordinated palliative care despite dementia being the leading cause of death in the UK.
The report was launched at a parliamentary event in Westminster hosted by Paulette Hamilton, chair of the APPG on Hospice and End of Life Care and Labour MP for Birmingham Erdington, where more than 80 MPs and parliamentary staff including Stephen Kinnock (Minister of State for Care and Labour MP for Aberafan Maesteg), Stuart Andrew (Shadow Secretary of State for Health and Social Care and Conservative MP for Daventry) and Helen Morgan (Liberal Democrat Spokesperson for Health and Social Care and MP for North Shropshire) met with Dementia UK’s specialist dementia nurses, known as Admiral Nurses.
Attendees also spoke to people living with dementia and family carers to discuss how the health and care system can better support people living with dementia and their families as the condition progresses.
Dementia UK is calling on governments across the UK to ensure dementia is recognised as a life-limiting condition and that specialist dementia expertise is embedded within palliative and end of life care services.
The report draws on new quantitative and qualitative research, alongside insights from clinical experts and people with lived experience of dementia. It includes clear calls for action across three areas:
• Earlier planning and support: Ensuring people with dementia receive meaningful advance care planning and guidance from the point of diagnosis
• Better care at the end of life: Improving workforce training so health and care professionals can better recognise and manage symptoms experienced by people with dementia, and ensuring families and carers can access education, respite and emotional support
• Specialist support for every family: Expanding access to specialist dementia nurses, such as Admiral Nurses, to provide continuity of care for families. As well as integrated health and social care records to ensure continuity of care throughout the system
Dementia UK is calling on governments across the UK to take urgent action and explicitly recognise dementia as a life-limiting condition and ensure specialist dementia expertise is embedded in new palliative and end of life care service frameworks. Without reform, the charity warns that increased pressure will be placed on health and social care services by the increasing population of people living with dementia in the UK.
During the event MPs were able to discuss current system failures with Dementia UK’s Admiral Nurses. Attendees also heard how these failures impact people living with dementia first-hand from people living with dementia and people who have cared for someone living with dementia.
Discussing the event, Dr Hilda Hayo said: “We’re grateful that so many MPs joined us for this important event. Every day, people across the UK face the emotional, physical and practical realities of dementia. Yet too often they are left to navigate this journey alone.
With the Government developing new national frameworks for both dementia and palliative care, there is a real opportunity to ensure people with dementia receive the coordinated, compassionate care they need at the end of life.
