The Nuffield Council on Bioethics’ most recent report explores the ethical dilemmas raised by caring for someone with dementia. These range from deciding when it is appropriate to use restraint, to questions about how the past and present wishes of a person with dementia should be factored into decisions about their care.
For this project, it was clearly going to be important to seek the views of those at the frontline of dementia care. However, reaching the many people who provide unpaid care at home was not going to be easy. Fortunately, dementia had become a hot topic when we launched the public consultation in May 2008 and it enjoyed widespread broadcast coverage, particularly across BBC outlets.
The Alzheimer’s Society also helped publicise the consultation through its extensive regional network, and care homes were targeted with a poster campaign. The Council received 200 written responses to the consultation, with almost half of respondents describing themselves as a carer or relation of someone with dementia and seven having a diagnosis of dementia themselves. Many more people with dementia and carers contributed via local and national Alzheimer groups.
Face-to-face engagement activities also took place. A discussion workshop was held for individuals working and living with dementia, including family carers, social workers, GPs, care home staff and people with early stage dementia. To find out what people who had no direct experience of dementia thought, 55 members of the public, recruited to broadly represent the UK population, took part in a one-day deliberative workshop in Birmingham.
Participants were given background information and then asked to consider a number of imaginary scenarios (see box for example). As expected, the participants held a wide range of views and there was much heated debate.
Drawing on the evidence it had gathered, the Council published the report Dementia: ethical issues  in October 2009. It sets out an ethical framework to help those who face dilemmas in the day-to-day care of someone with dementia. The report also includes policy recommendations in a number of areas, including confidentiality, balancing freedom and risk, access to care, making decisions, using assistive technologies, and the provision of ethical education and support for professionals involved in dementia care.
After its reports are published, the Council aims to engage with a wide range of people to encourage uptake of its recommendations and to promote discussion and awareness. Our target audience is vast and varies from topic to topic, but for the dementia report will include people with dementia, carers, health and social care professionals, young people, scientists, and policy makers. Reaching such a wide audience is a challenge and we use a variety of communication methods, such as the media, events, web, direct mail and through teachers.
Evaluation is tricky, but the fact that the Council’s reports are downloaded many thousands of times each month, and that many of our recommendations have been taken up by policy makers, is encouragement enough to ensure that communications and public engagement will remain a central and vital part of the Council’s work in future.
Dementia dilemma: what should they do?
Tina is 67 years old and has severe dementia. When first diagnosed, Tina said that if she could not make decisions for herself in the future, she would not want medical treatment that would prolong her life. Tina appears very contented in her care home, but has been diagnosed with early stage lung cancer which will eventually kill her, but which is treatable. Doctors have asked her family whether they want Tina to receive medical treatment for the lung cancer.
More information: http://www.nuffieldbioethics.org/