Consultant Admiral Nurse at Dementia UK, Sharron Tolman considers how to approach dementia as a life-limiting condition.
There are 885,000 people with dementia in the UK and it remains the leading non-Covid cause of death in England and Wales.1,2 One in three people over the age of 65 in the UK will die with or from dementia,3 yet it is often not considered life limiting in clinical practice. People with dementia and their family carers often do not know it is a terminal condition, and how the term ‘end of life’ is defined and understood may vary. There also remains a significant stigma associated with dementia and a lack of understanding of the condition – for example, of which diseases can coexist with dementia and the uniqueness of each individual’s experience.
This learning module will explore the key issues surrounding these aspects of dementia and the importance of providing palliative care. It will help you:
- Understand the life-limiting nature of dementia.
- Improve your evidence-based knowledge of a palliative approach to its management.
- Understand what factors to consider as the condition progresses.
- Gain confidence in noticing changes as progression occurs and in managing uncertainty.
- Appreciate and address the needs of people affected by dementia and their family carers towards the end of life.
Dementia is a progressive neurodegenerative condition and not a normal part of ageing, yet people affected by it and their families are often not afforded holistic care towards the end of life. Few people with dementia die in their own homes, with most having moved into care homes.
NICE guidance on dementia recommends that, from diagnosis, people should be offered ‘flexible, needs-based palliative care that takes into account how unpredictable dementia progression can be’.4 Palliative care can be given at any stage of an illness, with the aim of providing psychological, spiritual, emotional and social support, responsive symptom management and good quality of life. Despite this, people affected by dementia are not likely to receive comprehensive, holistic reviews of their needs throughout the course of their illness, which results in unmet needs, increased family carer distress and crisis-driven care. The European Association for Palliative Care definition of optimal palliative care in dementia includes: communication; shared decision making; setting care goals and advance planning; continuity of care; family care and involvement; avoiding futile, burdensome treatments; and timely recognition of dying.5
Viewing dementia through a palliative lens is important in terms of offering equitable access to care, addressing unmet needs, reducing crises and maximising opportunities to make end-of-life priorities and conversations part of routine care. It is especially important to give people with dementia the opportunity to express their views, needs, preferences and wishes when they still have the capacity to do so.
Sharron Tolman is a consultant Admiral Nurse at Dementia UK. Admiral Nurses are specialist dementia nurses, supported and developed by Dementia UK
The full CPD module can be found on the Nursing in Practice 365 website.
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