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PART 2 - Ethical dilemmas from the first possible signs of dementia onwards

2014: Ethical dilemmas faced by carers and people with dementia

In Part 1, we considered how the experience of dementia can contribute towards situations and changes which are sometimes difficult to manage and may lead to ethical dilemmas. We also explained what we meant by “an ethical dilemma” and gave an overview of some of the main ethical theories, principles and values. Apart from a few brief examples, we have not yet described specific situations, changes or ethical concerns typically experienced by people with dementia and their carers, and how these sometimes constitute ethical dilemmas. This is the focus of Part 2 which is divided into the following seven sections.

  1. The period of uncertainty or not knowing (pre-diagnosis),
  2. The process of understanding/finding out (diagnosis),
  3. The initial period of adaptation (shortly after diagnosis),
  4. Living with dementia (getting on with routine life/adapting to challenges),
  5. Caring for/receiving care (when increased levels of support are needed),
  6. The possible transition into a care home (when continued care at home becomes problematic),
  7. Care for a dignified end of life.

Each of the sections covers a different period in the lives of people with dementia and their carers. These periods can also be understood as turning points whereby something happens or there is a realisation that something has changed. This may result in reflection about the need to make further changes, come to a decision or come to terms with what is occurring. The challenges and the processes of adaptation, dealing with losses and reorganising expectations, hopes and plans may be experienced as a crisis or a more gradual awareness. These transitions may occur smoothly and harmoniously, without any great upheaval or emotional disturbance, but can sometimes be problematic. In addition to the practical and emotional issues surrounding many difficult situations, it is sometimes unclear what would be the right or wrong action to take or attitude to have.

In each section, you will find:

  1. a brief overview of issues and challenges which typically arise during the period described,
  2. a short story (vignette) which brings these together in the context of a specific situation [1],
  3. an ethical commentary on this story explaining the different ethical issues at stake and suggesting possible ways to address them.

We describe these different periods and associated challenges in a linear manner, progressing from the first signs or doubts about dementia to the end of life. However, people are very different. Their experience and the challenges they face might occur at different times, in a different order or in relation to different situations.

[1] These stories are fictional but based on events and situations which many people with dementia and carers have experienced.



Last Updated: Monday 08 February 2016