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Dementia and Decision Making at the End of Life

Kerry Jones


Dr Kerry Jones is a Lecturer in End of Life Care at the School of Health, Wellbeing and Social Care at The Open University.

Kerry’s career has focused on raising awareness of the dying and the individual experiences of grievers.

With the NHS celebrating its 70th anniversary this month, in this blog Kerry looks at the support and care people with dementia receive towards the end of life. 

Kerry Jones

Globally, it is estimated that there are 36 million people living with dementia, rising to 66 million by 2030. The World Health Organisation (WHO) describes dementia as a public health priority which urgently needs attention. 

The WHO recognises that despite recent national and international government initiatives, such as the Scottish Government’s Strategic Framework for Action on Palliative and End of Life Care, people with dementia continue to receive inadequate support and care towards the end of life. 

Although people with severe dementia have physical and psychological need, the condition is not always recognised as terminal.

The WHO suggests that Advance Care Planning (ACP) can reduce the burden of decision making about best treatment and palliative care in the event that a person loses capacity.

However, the legal standing of these plans and the complexity and range of the various forms involved (Advance Statements, Advance Directives) can contribute to the lack of implementing ACP in a range of settings.

Planning for the end of our life is something that concerns us all, young and old, whether for ourselves or for those we care for, but we may be unsure how or when to talk about it and to whom.

Hands holdingBringing these discussions out into the open could allay some of our concerns, and result in better provision of care.


This is why The Open University (OU) in Scotland hosted an event in Dumfries to bring about these discussions with people with dementia, their families, and health and social care practitioner’s from the NHS, Alzheimer’s Society and researchers working to improve end of life care for people experiencing dementia.

This was an event which coincided with the launch of Scotland’s Anticipatory Care Planning Toolkit. People experiencing dementia spoke about their plans towards the end of life and the value of anticipatory care planning.

These discussions however, are not without their challenges since it can be hard to imagine our future selves when we are relatively well.

While Anticipatory Care Planning (ACP) is a challenging and complex area to enact, Scotland’s Anticipatory Care Planning Toolkit is a way forward in which dedicated NHS professionals and support staff can begin discussions.

The toolkit outlines some points which can help with this process of initiating discussion with people experiencing dementia:

  1. Ask the person what they understand about their current situation and what they think might happen in the future. It is useful to know what they have been told by other health and care professionals and have learnt from other sources, like the Internet.
  2. Ask about past experiences with illness, either their own or others.
  3. Clarify concerns, expectations and fears about the future in relation to their health care.
  4. Identify any gaps in their understanding by describing what ACP is and what the rationale is for having Anticipatory Care Planning conversations. They should be made aware that they are able to change their views and preferences at any time and make changes to their Anticipatory Care Plan as and when they wish.

People may need time for reflection and discussion after they have had an initial discussion about ACP.

Discussions about ACP need to take place in a supportive environment and conducted sensitively. However, decision-making is not a one-off event, it necessitates adjustment along with that of a dementia pathway which is at times unpredictable.

This is why discussion needs to be the remit of all members of a clinical team and which promotes wide discussion of care goals, treatment decision and management and to a much greater extent, involve the family.  

Understandings of death and dying and how this affects the experiences of dying people, bereaved people, those who work with them, and their carers is explored in a new OU course Death, dying and bereavement, starting in October 2018. 


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