Dementia: ethical issues

The Nuffield Council on Bioethics and the Arts and Humanities Research Council (AHRC) have jointly hosted a series of three policy seminars focusing on the Council’s 2009 report Dementia: ethical issues.

The seminars, which took place in Westminster throughout March 2011, engaged researchers and policy-makers in the field of dementia, and sought to highlight areas of crossover between bioethics, the humanities, and policy-making in the context of dementia.

The three seminars focused on separate ethics ‘concepts’ associated with dementia which were highlighted by the Council’s report – namely autonomy, personhood, and solidarity – and were chaired respectively by Baroness Murphy, Professor Alistair Burns, and Baroness Perry. Each seminar included presentations from both academics and policy-makers, and encouraged discussion and debate with invited guests who represented dementia care, research and policy.

Points raised during the discussion included:

• Because a person with dementia is a person, they must be encouraged to make decisions and their views and values should be acknowledged.
• More could be done by those in policy-making roles to enable people with dementia to make autonomous decisions.
• A person with dementia’s sense of self and self-expression is grounded in their social and family relationships, and policy development should reflect this.
• Informal care can only work if there is sufficient professional care to partner the efforts of the informal carer.
• Community development needs to be addressed in order to overcome the exclusion of people with dementia from their communities.

Dementia needs to be recognised as an area requiring multidisciplinary research.

The seminars also highlighted gaps in research in the dementia arena, which will be considered by the AHRC.

Meeting notes

Notes outlining the discussion that took place at each of the three seminars are available to download:

• 9 March 2011 “No man is an island” – promoting autonomy and improving decision-making for people with dementia
  
• 23 March 2011 “I am still the same person” – promoting respect and ethical care for people with dementia
  
• 31 March 2011 “We’re all in this together” – the impact of Big Society on the care of people with dementia