Palliative care can benefit people with dementia

Dementia is a life limiting, neurodegenerative condition that can be described as mental decline caused by many possible underlying diseases, including Alzheimer’s. The Office for National Statistics reports that dementia was the leading cause of death in England in December 2022.12 What is more, the number of people dying with dementia is projected to more than double by 2040 in England and Wales as a consequence of ageing populations.3

However, public awareness of the life limiting nature of dementia is poor. A recent opinion poll4 conducted with a representative sample of more than 2000 people in the UK found that just 42% were aware that dementia is a terminal condition, and over 90% didn’t know that dementia is the leading cause of death in England.

As people with dementia approach the end of their lives, they often have complex care needs. Palliative care can improve experiences and outcomes for people with dementia. Palliative care is patient centred care that focuses on identifying and assessing physical, psychosocial, and spiritual needs.5 This includes managing and treating symptoms, such as pain and agitation, that become increasingly common as dementia advances. While such symptoms are more common towards the end of life, the involvement of palliative care can be initiated earlier in the disease trajectory and used alongside other disease modifying therapies.

Although most people with dementia prefer to remain living in their usual place of residence, whether home or care home,6 many experience prolonged hospital stays, especially towards the end of their life.7 Not surprisingly, use of acute hospital care by people with dementia, and associated NHS costs, increase steeply closer to death.8 A palliative care approach to dementia care could also improve end-of-life and dying experiences by giving people with dementia and their loved ones opportunities to plan and make choices regarding their care and treatments. But people with dementia often do not access palliative care services. For the small number who do access palliative care, involvement usually starts in a crisis or when the person is imminently dying.9 Part of the problem is lack of understanding about the difference palliative care can make. Only 51% of people responding to a UK survey understood that palliative care can benefit people who have dementia.4

Better access to palliative care for people with dementia would also have knock-on benefits for the wider healthcare system. For instance, people with dementia who were flagged by their GP as having palliative care needs were found to experience fewer unplanned admissions to hospital in the last three months of their lives.10 Access to palliative care has also been associated with reduced attendance at emergency departments by people with dementia.11 Ensuring that people with dementia and their families understand the benefits of palliative care is essential to make informed decisions about healthcare.12

The government has a responsibility to improve public health, especially for conditions such as dementia where inequalities in health experiences and outcomes exist, and where a high burden is placed on the NHS and social care.13 Public health campaigns are needed to demystify dementia, clarify its life limiting aspects, and promote the potential of palliative care to improve outcomes and experiences.

Palliative care knowledge and skills for dementia should be built by including them in core competency and continuous professional development. This is needed in primary care, home care, long term care, specialist medical care, rehabilitation, and palliative services. Investing in community palliative care services and strengthening continuity of care between different services for people with dementia must be a priority as part of the integrated care agenda.

Better care for people with dementia approaching the end of their lives would have benefits for the individuals and their loved ones, and would relieve pressure on the healthcare system. Growing societal awareness of the terminal nature of dementia, and the benefits of palliative care, should be an integral part of public policy.