Dementia: ethical issues

Ethical dilemmas arise on a daily basis for those providing care for people with dementia. The way in which these dilemmas are approached will have significant impact on the lives of people with dementia and their carers. This is why support in dealing with ethical issues is crucial. We discuss several specific dilemmas below.

Assistive technologies

New technologies have the potential to make a big difference to the lives of people with dementia and their carers. For example, ‘smart’ houses, with taps or cookers that turn off automatically, may make it possible for people to live in their homes for longer. Tracking devices may make it safer for people to go out on their own. However, some people are concerned that this kind of monitoring intrudes too much on people’s privacy.

We conclude

Where a person with dementia is not able to decide for themselves whether to make use of a particular technology, the relative strength of a number of factors should be considered on a case-by-case basis, including:

• the person’s own views and concerns, for example about privacy
• the actual benefit that is likely to be achieved
• the extent to which carers’ interests may be affected
• the dangers of loss of human contact

Balancing freedom and risk

Taking risks is part of everyday life – a life without risk would be unimaginable. When caring for someone else, there is a natural desire to try to reduce risk as much as possible. However, this may mean missing out on benefits and restricting a person’s freedom.

For example, it may seem safer not to allow a person with dementia to use the cooker. However, if they gain pleasure and a sense of achievement from cooking, the benefits may outweigh the risks.

‘Risk assessments’ often focus only on the possible risks, without considering what opportunities and benefits are being lost as a result.

We conclude

‘Risk assessments’ should be replaced by ‘risk-benefit assessments’. These should take into account the well-being and autonomy of the person with dementia, as well as their need for protection from physical harm and the needs and interests of others.

Restraint

It may be legal for a person to be restrained if this would prevent harm either to the person or others. ‘Restraint’ may be physical or less obvious, such as leaving a person in a low seat that they cannot get out of without help. Being restrained can be very distressing and demeaning. However, carers may sometimes find that a lack of outside help leaves them little choice but to restrain the person for whom they care, in order to get on with essential household tasks.

The Mental Capacity Act limits the use of restraint to circumstances where it is a “proportionate” response to the likelihood of the person suffering harm. There is, however, little guidance on what counts as a “proportionate” justification for restraint.

We conclude

There should be:

• more guidance for carers on when restraint might count as “proportionate”
• support for carers that will minimise the need for restraint at home
• detailed and practical guidance on the appropriate use of restraint in care homes for all those working in this sector