Terms of reference

In the light of the increasing prevalence of dementia and other neurodegenerative conditions in the UK, and of developments in neuroscience which provide a better understanding of these conditions and of the care and treatment that can be provided to those suffering from them, the Working Party will:

1. Identify and consider the ethical, legal, economic and social issues including issues of social responsibility that arise in the care and treatment of those with chronic, progressive neurodegenerative diseases of the central nervous system;

2. Examine ethical issues affecting patients, carers, families, healthcare providers, social services and society, in particular those surrounding:

(a) decision-making and capacity to consent;

(b) respect for the autonomy of both the individual and their family/carers;

(c) ‘best interests’ and ‘quality of life’ of both the individual and their family/carers;

(d) the implications of the changes that affect the behaviour of people with dementia

3. Consider the legal, policy and educational implications of these ethical issues for the care and support of patients and their families taking account of different cultural and social contexts, including:

(a) the implications of an ‘advance directive’ or ‘living will’ in relation to palliative care and end-of-life issues, produced before, or after diagnosis;

(b) the adequacy of care and support for patients and their families.

Previous work

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