The Ethics, Law and Humanities Committee of the American Academy of Neurology, American Neurological Assocaition and Child Neurology Society have issued an AAN Position Statement on the ethical considerations in dementia. This is important as the prevelance of dementia increases, with the aging population across the World, and the increased ethical issues that arise.
The Statement considers many ethical issues:
- The telling of the diagnosis – to patient, if at all possible, and carers
- Genetic testing which may be appropriate at times, but only after careful genetic counselling
- Decision making – the legal agreement for a surrogate decision maker for the future. Advance directives may be complex as the person may not be able to anticipate the specific circumstances in the future
- Symptom and behavioural management
Balancing independence and risk
Discussing the issues of care at home or the need for institutional care
Consideration of feeding issues / pain assessment
- Caregiver burden
- The possibility of abuse
- Cultural issues, affecting diagnosis and later care
This Statement raises many ethical issues that are very important for the care of people with dementia and their carers. These affect all involved in the care of dementia and need to be discussed and considered carefully on an individual basis with patients and their families / carers.
Chiong WC, Tso AY, Simmons Z, Bonnie RJ, Russell JA. Ethical considerations in dementia diagnosis and care. Neurology 2021; 97: 80-89. Doi: 10.1212/WNL.0000000000012079