Dr Emma Wolverson
Research Lead at Dementia UK and Senior Lecturer in Ageing and Dementia, The University of Hull, UK.
Dementia is the leading cause of death in the UK, and the number of people dying from dementia will double by 2040.
A recent survey found that only 42% of the British public is aware that dementia is a terminal illness. Concerns have been raised that, in an effort to reduce stigma and encourage people to seek an early diagnosis, messages about ‘living well’ with dementia may have inadvertently silenced conversations about the advanced stages of the condition and its life-limiting and progressive nature.
Conversations around dying
Failure to recognise dementia as a terminal illness impacts the end-of-life care provided to people with dementia.
Currently, people with dementia and their families face inequalities in access to palliative and end-of-life care services. As a result, people experience frequent transfers to and from hospitals, burdensome and invasive treatments and poor pain management.
Dying with dementia is different
Dementia is often wrongly regarded as being no different from other conditions that people die from. But providing end-of-life care for people with dementia requires a high level of skill, as they tend to live with multiple chronic health conditions and frailty. This makes their care complex.
The course of dementia is difficult to predict. It does not fit in well with existing palliative or hospice models of care, and there is no one specialist with a clearly defined role to care for the person with dementia during this time.
Healthcare staff often report lacking the knowledge, skills and confidence to support people dying with dementia who are unable to communicate their needs and preferences in the advanced stages of the condition.
Providing end-of-life care for people with dementia requires a high level of skill, as they tend to live with multiple chronic health conditions and frailty.
Most people living with dementia are cared for by a family member. As a person approaches the end of their life, exhausted family members who are experiencing anticipatory grief, witnessing distress and disorientation are often asked to become proxy decision-makers.
Life and death decisions are quite literally demanded of them. Many have never had important conversations with their relatives about their wishes in such a situation. Clinicians may witness disagreement from family members as a result of a lack of understanding and preparedness.
Dementia UK researchers are leading the way in pioneering research to explore what a good death looks like for people with dementia. The charity is also collaborating with the European Association of Palliative Care to review the definition of optimal palliative care in dementia.