Dementia: ethical issues

The report sets out a 6–part ‘ethical framework’ to help those who face dilemmas in connection with the day-to-day care of someone with dementia.

The framework also provides the basis for the recommendations to policy-makers made throughout the report. As with any framework, it will need to be applied flexibly, and with compassion. There will rarely be one ‘right’ answer to any particular ethical difficulty.

Components of the ethical framework

Component 1: A ‘case-based’ approach to ethical decisions

Ethical decisions can be approached in a three stage process:

• identify the facts that are relevant to the specific case
• interpret and apply appropriate ethical values to those facts
• compare the situation with other similar situations to find ethically relevant similarities or differences

Component 2: A belief about the nature of dementia

Dementia arises as a result of a brain disorder, and is harmful to the individual.

Component 3: A belief about quality of life with dementia

With good care and support, people with dementia can expect to have a good quality of life throughout the course of their illness.

Component 4: Promoting the interests both of the person with dementia and of those who care for them

It is generally accepted that autonomy and well-being are important aspects of our lives. This is just as true for people with dementia. Autonomy is often defined as the freedom to make your own choices, but people rarely make decisions in isolation. Autonomy can be promoted in people with dementia by encouraging relationships that are important to the person, and by supporting the person in maintaining their sense of self and expressing their values. A person’s well-being includes both their moment-to-moment experience of pleasure, and more objective factors such as their level of mental ability.

The separate interests of carers must be recognised and promoted.

Component 5: Acting in accordance with solidarity

We are all dependent to some extent on one another (a concept often referred to as ‘solidarity’) and people with dementia are fellow citizens. We therefore have a responsibility to support people with dementia, both within families and in society as a whole.

Component 6: Recognising personhood, identity and value

The person with dementia remains the same, equally valued, person throughout the course of their illness, regardless of the extent of the changes in their mental abilities and other functions.

Support for all those providing care

One of the key messages in the report is that those supporting and caring for people with dementia need much more support in tackling the ethical problems they meet every day. Guidelines are helpful, but not enough.

We conclude

Professionals and care workers providing care to people with dementia should have access to ongoing education to help them respond to ethical problems. Carers (family and friends who provide unpaid care and support) who wish to access such education should be able to do so. Professionals, care workers and carers should all have access to forums where they can share and receive support in making ethical decisions.