Diagnosis and management of Alzheimer's disease: past, present and future ethical issues

Abstract

There is great interest in the ethical issues associated with Alzheimer's disease (AD) and related dementias given the prevalence of AD and the evolving neuroscience landscape in matters of diagnoses and therapeutics. Much of the ethics discussion arises in the tension between the principle of not doing harm (principle of non-maleficence) in this vulnerable population and the development of effective treatments (principle of beneficence). Autonomy and capacity issues are also numerous, wide-ranging, and concern (1) day to day affairs such as driving safely and spending money wisely, (2) life-time events such as designating a legal representative in case of incapacity, making a will, (3) consenting to treatment and diagnostic procedures, (4) participating in research. The latter issue is particularly thorny and illustrates well the complexity of tackling concerns related to capacity. The impetus to protect AD patients has partly led to ethics regulation and policies making research on inapt patients more difficult because of stringent requirements for signed informed consent or for showing the value of the research to this specific patient population. New issues are arising that relate to earlier diagnosis using biomarkers and (possibly soon) the use of drugs that modify disease progression. We here summarize and discuss the different ethical issues associated with AD from a historical perspective, with emphasis on diagnostic and treatments issues.

Keywords: 4th Canadian Consensus Conference on the Diagnosis and Treatment of Dementia; A4; AD; ADNI; Alzheimer's disease; Alzheimer's disease neuroimaging initiative; Anti-Amyloid; CCCDTD4; CIs; DIAN; Diagnosis; Dominantly Inherited Alzheimer Network; Ethical considerations; FDA; Food and Drug Administration; IWG; International Working Group; MCI; MMSE; Mini Mental State Examination; NHPCO; NIA/AA; NINCDS-ADRDA; National Hospice and Palliative Care Organization; National Institute of Aging/Alzheimer Association; National Institute of Neurological and Communicative Disorders and Stroke and the Alzheimer's Disease and Related Disorders Association; PEG; QOL; REVEAL; Risk Evaluation and Education for Alzheimer's Disease Study; SIB; Severe Impairment Battery; Treatment; anti-amyloid treatment of asymptomatic Alzheimer's disease trial; cholinesterase inhibitors; mild cognitive impairment; percutaneous endoscopic gastronomy; quality-of-life; treatment of asymptomatic Alzheimer's disease trial.