Ethical issues and decision-making in dementia care

Dr Julian Hughes

This article was published in Living Ethics: issue 81 spring 2010

As the number of Australians with dementia in Australia is predicted to rise from over 250,000 today to about one million by 2050, Professor Julian Hughes is calling for a revolution to achieve more positive attitudes to dementia.

Ethical dilemmas in dementia are ubiquitous. They are everyday. Many of the ordinary, day-to-day decisions that have to be made by the stressed, unpaid, usually family carers of people with dementia are difficult precisely because they are ethical. The carers are often asking, in effect: “what is the right thing to do?” Or: “am I doing the wrong thing?”

Some years ago a wife of someone with dementia told me that the most difficult decision she faced concerned when to take over tasks from her husband. He’d always been keen on do-it-yourself. He was the man who fixed things around the house, but increasingly the jobs were botched. The difficult decision, therefore, for his wife was: when should she call in someone to fix a door that was causing problems? She knew that this would greatly upset her husband, that it would undermine his self-esteem and irritate him. But she could no longer watch his frustration when he was not able to do the job himself. Deciding when and how to deal with this situation was for her a real moral dilemma.

I recently served on the working party of the Nuffield Council on Bioethics, which produced its report in October 2009 entitled: Dementia: ethical issues. Dementia care is full of mundane, but nonetheless difficult decisions of an ethical nature. Part of the idea behind developing a framework to deal with ethical decisions was that it could be adapted to help carers face the difficult decisions they encounter daily.

The ethical framework we developed has six components:

1. Take a case-based approach to ethical decisions.
   It involves identifying the relevant and particular facts for a given situation. These then require interpretation and appropriate ethical values have to be applied. The case-based approach also involves comparing one situation with similar situations. The key thing is to spot the important moral differences between seemingly similar cases. It is then that the application of appropriate values comes into play.
2. Dementia arises as a result of a brain disorder.
   This may seem obvious, but it’s worth stressing in order to emphasise that dementia is harmful to the individual. It is harmful in the same way that heart disease, or renal failure, or cancer are harmful.
3. With good care and support, people with dementia can have a good quality of life.
   In other words, you can live well with dementia, but only if the support, which must be biological, psychological, social and spiritual, is optimal.
4. We must promote the interests of the person with dementia and their carers.
   There were two prongs to the idea of promoting interests. First, there is the well-known principle of autonomy (or self-rule). But we wished to emphasise that autonomy was not just about the possibility of rational choice by individuals.
   In our view, it also included supporting important relationships, supporting the person and supporting attempts to express the person’s values. But the need to promote autonomy has to be balanced against the need to promote wellbeing. This includes the moment-to-moment experiences of contentment, as well as the person’s level of mental ability or their level of general health.
   Real wellbeing in dementia may depend more – especially as the disease progresses – on ensuring that wellbeing is maintained through small-scale moment-to-moment interactions and experiences.
5. Solidarity.
   This is the belief that people with dementia are fellow citizens and that we are all fellow travellers. We need to recognise our mutual interdependence, which in turn suggests that we have a duty to support people with dementia.
6. The notion of personhood and the importance of recognising the individual as a person with dementia.
   Our view was that a person with dementia remains the same person despite changes in mood, cognition and behaviour. A person with dementia is of equal value to a person without dementia.

Revolution

It is hard to escape the conclusion that we need a revolution on the part of governments and society – to translate fear of dementia into action that results in more positive attitudes to dementia.

To conclude, the ethical challenge starts and ends with the person with dementia. But we have to see the person as essentially a situated being. He or she is not an isolated atom, but someone situated in a family, in a community, with a culture and history. This means that those around the person must be supported in their endeavours to maintain the dignity and selfhood of the individual.

But these families and communities are themselves part of the wider society and body politic. So this is a state and national issue. The common good, the imperative of solidarity, mean that organisations, institutions and governments must face up to the demographic challenge, not for mere practical reasons, although these are important, but because this is a human moral necessity.