End of life in early onset familial Alzheimer’s disease: Bioethical issues and the cognition specialist’s role

Alzheimer’s disease (AD) is the most common cause of dementia in the world. Genetic factors are key contributors to all forms of AD, but in some families, it is possible to identify a specific genetic cause for early‐onset familial Alzheimer’s disease (EOFAD). When a genetic cause is identified, it is important that relatives are aware of the implications and alternatives in order to assess how they would like to proceed, based on their values, beliefs, and preferences. This may present ethical challenges for the neurologist due to questions about their decision‐making capacity. The purpose of this presentation is to report the case of a 66‐year‐old patient diagnosed with EOFAD 11 years ago, in its final stage of the disease, whose husband inquires about the possibility of adopting end‐of‐life measures, and to analyze from it the bioethical aspects and the cognition specialist’s role in this issues. Given the progressive nature of dementia, it is critical to identify the patient’s social support network early on. The late stage of dementia is associated with a significant decline in a person’s autonomy and will require full‐time assistance. The carers experience sadness and guilt as well, as the realisation that end‐of‐life is approaching and decisions regarding palliative care become imminent, so it is necessary to analyze how far to adopt life support measures, since these will prolong life. Regarding our patient, with the support of a bioethics committee, it was decided to take end‐of‐life measures by stopping enteral nutrition. Advising on end‐of‐life approach options and especially encouraging the patient to complete advance directives in early stages of the disease, with the fundamental support of a bioethics committee, is the future challenge of the specialist in cognition. References ‐Gauthier S, Webster C. 2022. World Alzheimer Report 2022: Life after diagnosis: Navigating treatment, care and support. London, England: Alzheimer’s Disease International. ‐M. Congedoa, R. I. Causarano. Ethical issues in end of life treatments for patients with dementia. European Journal of Neurology. 2010; 17: 774‐779.