‘Better dementia education is vital for good end-of-life care and a good death’ | Nursing Times

I’ve been a nurse for over 30 years. More than two decades of my career have been dedicated to supporting patients in hospice and palliative care settings. I’ve witnessed the struggle some families face when supporting their loved ones in their final days. For families living with dementia, at a time when they need support, kindness and guidance, they are often stressed and exhausted from navigating a broken care system.

Despite dementia being the leading cause of death in the UK, education and understanding of the way it affects families is still limited. This can lead to poorer outcomes. Due to the nature and progression of dementia, it can be difficult to identify when someone is approaching the end of their life, leading to families not being offered the support and care they desperately need.

“Families are not being offered the support and care they desperately need”

Stigma and taboo around death also contribute to this inequality. Dying can be hard to identify and accept. However, good end-of-life care can enhance an individual’s quality of life and ensure their needs are met, while also easing distress for those around them. Although it may be difficult to broach conversations on the end of life with a loved one who has been diagnosed with dementia, it is beneficial to discuss it as early as possible, while they still have capacity. Understanding a person’s wishes for the future, including where they may want to spend their final days, is vital when it comes to establishing their advance care plan.

For people who have young-onset dementia, there can be additional challenges when navigating the end of life. People may have dependants and/or children and, therefore, require a different level of support for the whole family. A dementia diagnosis affects the whole family so decision making about education, careers and relationships can often be put on hold while they are living with future uncertainty.

We all should have the right to high-quality end-of-life care and a death that is pain free, comfortable, dignified and supported throughout by expert health and social care professionals. To achieve this, better education around dementia is crucial for equipping professionals with the knowledge they need to navigate and identify the later stages of the condition. They must also be provided with the tools to confidently approach conversations around death, keeping the person with dementia and their family at the forefront of care decisions every step of the way.

Dementia UK’s dementia specialist Admiral Nurses are well placed to offer this support. Every day they work alongside families with dementia and professionals to share best practices on dementia and end-of-life care.

Following the Covid-19 pandemic, many hospice and palliative care settings have been left with financial uncertainty. This has left an even greater gap in service provision. Now more than ever, we need a long-term sustainable funding solution for health and social care, in which accessing excellent palliative and end-of-life care services aren’t seen as a ‘nice to have’, but are considered essential.

Caroline Scates is deputy director for Admiral Nurse development, Dementia UK