A report on dementia published by the World Health Organization (WHO) has highlighted key elements of the Nuffield Council’s ethics framework for dementia.

The report Dementia: a public health priority is the result of work undertaken by WHO and Alzheimer’s Disease International (ADI). It aims to raise awareness of dementia as a public health priority and to encourage action at international and national levels to improve the lives of people with dementia and their carers.

The report references several conclusions made by the Council, including the recognition that different ethical issues arise throughout the course of the life of a person with dementia, “often starting with the diagnosis”.

The report also draws on the Council’s work to emphasise the importance of supported decision-making through the use of proxies, noting that “this form of supported decision-making may help bridge the gap between the time when a person with dementia is fully able to make decisions and the time when formal proxy decision-making becomes necessary on a regular basis”. Similarly, the Council highlights the legal requirement to take all practical steps to support a person in making their own decision and in supporting the person in ‘borderline’ cases where their capacity is uncertain.

A broad societal approach to ethical issues in dementia is also encouraged by WHO. This approach, it suggests, should be comprised of four key elements.

Referencing the Council’s conclusion that dementia, and people with dementia, should become an accepted and visible part of society, the first of these elements concerns combating stigma which – the WHO report suggests – will involve implementing strategies to improve public awareness and understanding of dementia, and ensuring that the work of caregivers is properly valued. In relation to this aim, the WHO report also finds (in its second element) that “people with dementia have the right to live in the community and to have access to health, social and other support services that enable them to lead full and meaningful lives within society. Societies should enable them to take part in activities, have equitable access to facilities and be involved in communal life.” The Council very much concurs with this conclusion, suggesting in its own report that services should be flexible and appropriate to the individual and enable them to live well with dementia – an approach based on respect for the needs, preferences and personhood of the individual person with dementia.

The third element concerns resources. Here, the report notes that “society has a duty to ensure that all people with dementia, including those with inadequate resources of their own, receive good care”.

The final element of the report focuses on the need for further research into dementia. It states that “it is important not only that funding is available but also that mechanisms are in place, including consent procedures that assist appropriate recruitment of people with dementia into research studies”. The necessity of facilitating research with people with dementia was a key recommendation of the Council’s report, with a focus on enabling people with dementia to take part in research by, for example, adapting research consent procedures, and how information about the research is presented, to take account of people with cognitive impairments.

The report is expected to become a resource that will help governments and policymakers address the impact of dementia as an increasing threat to global health.

Find out more about the Council's work on dementia