Dementia: ethical issues

The amount of funding available for dementia research appears low, given both the number of people with dementia and the effect dementia has on people’s lives.

Funding

Research funding bodies rightly choose to fund research that is important and high quality. However, these criteria alone are not enough to make sure that there is a fair distribution of research funding between the needs of very different parts of the population.

We conclude

The major research funders should:

• explain more clearly how and why they divide their research funds between areas of research that have the capacity to benefit very different groups of the population
• if necessary, take active steps to support and encourage researchers who are capable of carrying out high-quality research in dementia
• encourage more research into the experience of living with dementia and how people with dementia can be supported to live the best possible lives

Who should be involved in research?

People with dementia who understand what is involved in a particular research project decide for themselves whether or not to take part. Those who cannot decide for themselves may be able to take part as long as a number of legal requirements are met.

We conclude

Current legal safeguards are an appropriate way of protecting people with dementia from harm. However, more should be done to make it easier for those who have expressed a wish to take part in research to do so. For example:

• Clinical trial networks, which bring together doctors and people with dementia who want to take part in research, should be encouraged
• The possibility of giving welfare attorneys the power to decide if a person with dementia should take part in research should be considered. At present, this is possible in Scotland but not in England or Wales
• There should be research into how advance decisions could be used to help make future decisions about research participation
• Information about a research project should be adapted so that it is easier for people with dementia to understand the key issues and give consent for themselves