Dementia: ethical issues

Good, ethical care recognises the value of the person with dementia. It aims to promote the well-being and autonomy of the person with dementia. At the same time, it pays attention to the interests of carers who provide so much of the day-to-day support.

We conclude

How things are done, so that people with dementia feel that they are valued individuals, will often be far more important than the particular structure or format of services.

Professionals and care workers should treat families as ‘partners in care’, reflecting the solidarity being shown within the family.

Diagnosis

Early diagnosis has important benefits, but not every person with dementia will find that these advantages outweigh the possible disadvantages. A timely diagnosis is one which is at the right time for the person concerned, and for their family.

We conclude

People should have access to good quality assessment and support from the time they, or their families, become concerned about symptoms that relate to a possible diagnosis of dementia. Doctors and others giving a diagnosis of dementia should actively encourage the person with dementia to share information with their family.

There is some evidence to suggest that people in some cultural groups may be more hesitant in coming forward for diagnosis than those from other cultural groups, possibly because of stigma.

We conclude

Further research should be carried out on the reasons why there is variation between cultures in readiness to come forward for diagnosis, and the role that misinformation and misunderstanding plays in these reasons.

Information and ongoing support

Access to supportive care, including appropriate information, emotional support and practical support, is essential for people to live well with dementia. Such care must be flexible, recognising the different needs, preferences and values of different individuals.

We conclude

We welcome the idea of ‘dementia care advisers’, whose role would be to help people diagnosed with dementia to access appropriate services and support.

End of life care

End of life care for people with dementia is a matter of particular concern. At the moment, people with dementia are less likely than others to receive good quality palliative care.

We conclude

We welcome the recent emphasis throughout the UK on the importance of improving end of life care for people with dementia. A key factor will be the development of models of end of life care which are appropriate to dementia. We welcome the commitment in the English dementia strategy to develop and evaluate such models.