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End of life care

Dementia is a terminal condition and supporting people at the end of their life to die well, or as they would have wished, is part of good person-centred care.

What does a good death mean?

The Department of Health's End of Life Strategy describe 'a good death' as

  • Being treated as an individual
  • Being without pain and other symptoms
  • Being in familiar surroundings
  • Being in the company of close family and/or friends

However, evidence suggests that this is not the case for many people living with dementia.

At a time when dementia is the leading cause of death in the UK, accounting for 11.6 per cent of all deaths in 2015, improvements need to be made.

The Dementia Action Plan for Wales states: “We need to ensure that the options and access to palliative care and end of life care is the same for a person living with dementia as it is for anybody else.”

A number of barriers were identified in the Marie Curie and Alzheimer’s Society report Living and Dying with Dementia in Wales: Barriers to Care:

  • lack of recognition of dementia as a terminal condition
  • inaccurate reporting of cause of death.
  • ineffective advanced care planning, due in part to a lack of timely diagnosis.

Living and Dying with Dementia in Wales: Barriers to Care

Advance care planning for end of life

Advance care planning is a process that enables people to make plans about their future health care.

Advance care plans provide direction to healthcare professionals when a person is not in a position to either make and/or communicate their own healthcare choices.

Advance care planning is crucial for anyone with a life-limiting condition, perhaps more so for people with a dementia, as due to the degenerative nature, people will lose capacity to make their own decisions.

Advanced care planning may be about having a conversation about options, identifying wishes and preferences, and the people to consult on the person's behalf.

Planning your care in advance

The Mental Capacity Act allows future wishes to be expressed in the form of advance directives or Living Wills.

In England and Wales, an advance directive is the only legally binding form of expressing views on care and is situation specific.

End of life care advice from the NHS

The Act also supports the appointment of a Lasting Power of Attorney to act on the persons behalf when they are unable to make their own decisions.

Lasting Power of Attorney can be appointed for health and welfare decisions and/or property and affairs.

Advice from the NHS about lasting power of attorney

The Living and Dying with Dementia in Wales report also highlighted unequal access to palliative care, hospice services and funding, resulting in discrimination and inconsistencies in care standards.

A co-ordinated approach is needed to support a person at the end of life, with family carers, social care staff, district nurses, GPs, Admiral Nurses and Older People’s Mental Health Teams working together to ensure a good death.

In addition, we need to ensure people receive ongoing support after the person has died, whether that is a family carer or a professional.

Many organisations can provide support at this time, listed in the useful links below.

Useful resources

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First published: 10 October 2018
Last updated: 25 September 2022
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