The report highlights how dementia is often not recognised as a terminal diagnosis, which can lead to poor access to care, inconsistent quality of care and inadequate pain management.
Following its publication, Marie Curie and Alzheimer’s Society are aiming to bring together NHS organisations, social care bodies, royal colleges, researchers, and people with experience in dementia and end of life care, to plot out how to best address the barriers and develop an action plan that each organisation can sign up to.
Marie Curie currently runs a programme aimed at improving end of life care for people living with dementia in Pembrokeshire and Carmarthenshire. The scheme sees three Marie Curie senior nurses working in partnership with Hywel Dda Health Board to provide thorough assessments of those people living with dementia and providing care and support to them and the people who care for them.
However, the charity acknowledges that more needs to be done to reach people with dementia in Wales.
“More and more of Wales’ population are set to be affected by dementia in the future, and in order to best address this growing problem we need to act now,” explained Simon Jones, head of policy and public affairs at Marie Curie, Wales.
“People with dementia who are at the end of their lives need and deserve tailored care that is specific to their condition and experiences, just like the care provided for people with other terminal illnesses.
“We will work with our colleagues at the Welsh Government, health boards and other partners to ensure there is a clear strategy to address the continued rise of dementia as a terminal illness, and break down the barriers preventing people living with dementia from accessing the best quality, end of life care.”
Sue Phelps, director of Alzheimer’s Society in Wales, 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. As a result, many people with dementia are not dying the way they wish. Some are not dying where they had hoped; others are dying in pain or without dignity.
“A lot needs to happen to improve care, increase staff training and awareness to help make the 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. The quality and access to this care is essential to get people the help, support and treatment that they really need.”