Dementia and End of Life: Compassion and Skill in Nursing Care

Dementia Action Week – May 17th – 23rd 2021

Catherine Best, Practice Educator and Kay Dunderdale, Staff Nurse, Dementia Training Facilitator and Link Nurse at Saint Catherine’s Hospice, Scarborough, take time out during Dementia Action Week to highlight how nurses can provide specialist and compassionate health care to those who are not only living with dementia but are also near end of life.

The Global Story

Dementia affects 50 million people and their families and carers worldwide. The Global Action Plan developed by the World Health Organization (WHO) seeks to improve the lives of those living with dementia. The overall aim being to:

• Support the World in making dementia a public health priority
• Heighten awareness of the often-severe impact of dementia
• Reduce the risk of dementia
• Improve care, treatment and support for those living with dementia
• Develop evidence-based practice and research to improve the quality of patient care.

The vision is to enable those living with dementia and their carers to live life to the full.

The UK Story

Within the UK currently more than 850,000 people are estimated to be living with dementia; by 2025 this number is expected to be more than 1 million. This increase is likely to place an increased burden on families and carers, as well as the nursing profession as a whole.

So, what is Dementia?

Put simply, dementia is an umbrella term that captures a number of progressive disorders that affect the brain.

According to DementiaUK there are over 200 subtypes of dementia. The five most common being:

• Alzheimer’s disease
• Vascular dementia
• Dementia with Lewy bodies
• Frontotemporal dementia
• Mixed dementia.

Symptoms

A range of symptoms are associated with dementia. And although every person’s experience of dementia is unique, there are still some similarities, which can affect both physical, psychological, social and spiritual wellbeing of the person diagnosed.

Living well with dementia is therefore an essential aspect of patient care and nurses are in a unique position to support the needs of those affected by this cruellest of diseases.

End of life planning is also considered to be an important element of patient care and again nurses may be actively involved in supporting those with dementia [and their relatives] to ensure their wishes are known in advance, enabling palliative and end of life care needs to be managed smoothly, when the time comes.

Palliative Care and End of Life

However, recognising when someone is near end of life can often be fraught with significant challenges. The charity Marie Curie has developed a number of learning resources that can help health care professionals understand the signs and symptoms associated with nearing end of life; with the Alzheimer’s Society providing information regarding later stage dementia, all of which can ultimately help to support preparation for end of life.

Hospice Care

Within a hospice setting, a plethora of healthcare professionals work collaboratively to ensure the delivery of high-quality palliative care, which also includes end of life care.
Delivered by compassionate and motivated healthcare professionals able to navigate often-complex patient needs, hospice care is designed to provide care which is patient focused, dignified and respectful.

A number of organisations exist, including Hospice UK, that provide guidance and information to healthcare professionals on hospice-enabled dementia care. By understanding symptoms, drug therapies and potential complications, nurses
working within hospice care, through a process of professional collaboration and joined-up thinking are expertly able to support patients with dementia and their families navigate end of life.

However, being able to anticipate the needs of the patient who is near end of life, including pain management, spiritual and comfort needs, is an essential element of professional nursing practice in many settings and is not solely the domain of the hospice nurse.

By improving professional knowledge of dementia and its associated symptoms, health care professionals and nurses in particular, are in a strong position to be both advocates and skilled care providers for those whose lives have been affected by a dementia diagnosis and who are now near end of life.

Dementia Link Nurse

As a nurse, if you work for an organisation that provides care for those with dementia as well as end of life care, and you are keen to understand more about this most rewarding of service, why not consider being a link nurse. It is after all Dementia Action Week and it’s never been easier to explore, as the Royal College of Nursing has recently produced a framework explaining how to create this most valuable of roles, albeit in the context of infection control.

As the number of those being diagnosed with dementia continue to rise, nurses who continue to maintain their professional knowledge in dementia care, are not only able to provide appropriate and compassionate care but are also able to recognise when end of life is imminent, and at such times continue to provide care that is compassionate, skilful and truly person-centred.