Although dementia is a progressive neurological condition and the leading cause of death in the UK, it is often not recognised as life-limiting. People with dementia may also have other illnesses and families are often living with uncertainty and anxiety about the future.
Palliative care improves the quality of life for people with life-limiting conditions and their families, who often face challenges associated with the diagnosis and prognosis. A palliative approach is an integral part of good dementia care, from the time of diagnosis, with early identification, assessment and treatment of problems which may be physical, psychosocial or spiritual.
How can Admiral Nurses help?
Recognising the need for high quality, personalised end of life dementia care and support, Dementia UK has collaborated with several hospice, palliative and end of life service providers across the UK to help improve palliative and end of life care for people living with dementia and their families.
There are now 21 dementia specialist Admiral Nurses working specifically in the hospice and palliative care sector, with more in development. Many Admiral Nurses working in other care sectors such as care homes, hospitals and in the community also support families affected by dementia towards end of life. They support families to understand the impact of dementia and the complexities of change as the condition progresses.
Why is end of life planning so important?
A key aspect of good end of life care is giving people with dementia and their families opportunities and support to talk and share their wishes and preferences and what matters to them.
However, future care planning is often approached too late. This can cause significant distress to families who may be left to make important decisions at a time of crisis.
Reducing stress and enhancing comfort and quality of life is essential to good dementia care. A continuous approach to future planning is needed, alongside more open conversations about death and dying to help people understand what support and services are available at the end of life.
Supporting other professionals
People with dementia and their families have their own unique needs, and understanding these individual needs is essential for the professionals who support them as their condition progresses and at the end of life.
As well as working directly with families affected by dementia, Admiral Nurses can support the education, knowledge and best practice of others involved in providing palliative dementia care. This may include support with communication, decision-making, care goals and advance planning, comfort care, treatment of symptoms and timely recognition of dying.