4 ways to improve end-of-life care for people with dementia

Efforts to improve the quality of end-of-life care for people with dementia are urgently needed.

Dementia is the leading cause of death in the UK today. Most people with dementia will attend the emergency department at least once in their last year of life and spend an average 20% of their last six months of life in a hospital bed. The number of people dying with palliative care needs is expected to more than double over the next two decades.

People affected by dementia have a right to be heard. Evidence shows us that this is not always upheld – in clinical practice, in health and social care strategic priorities, or in wider society.

To coincide with Dementia Action Week, researchers and academics from the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation went to Parliament to present a new policy briefing: A Right to be Heard: Better palliative and end-of-life care for people with dementia.

The brief details research exploring the quality of end-of-life care and outcomes and experiences among people with dementia.

Informed by the latest evidence, the briefing includes four calls to action for policy makers:

1. Prioritise dementia as a life-limiting condition
2. Ensure equitable access to integrated palliative dementia care
3. Optimise investment in community and primary care closer to home
4. Invest in palliative dementia care research

These evidence-based calls to action aim to counter this and help to ensure people with dementia who are approaching the end of their lives receive the support and respect they deserve.

Next steps towards better palliative and end-of-life care for people affected by dementia will rely on greater investment, strong leadership, and strong collaboration between people affected by dementia, researchers, clinicians, commissioners and government.

We are delighted to have presented our policy brief to key policymakers in Parliament. Too often people with dementia encounter barriers to accessing high-quality care and support towards the end of life. We hope that our recommendations can be used to inspire and drive improvements in care for the near-million people in the UK today, from diagnosis to the end of life.

Dr Lesley Williamson, PhD Fellow at the Cicely Saunders Institute