By Jalayne J. Arias

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The legal, ethical, and policy issues associated with employment of individuals with Alzheimer’s disease remain unsettled. Alzheimer’s disease is a progressive, irreversible, neurodegenerative illness. The typical age of late-onset Alzheimer’s disease generally affects older-adults, with the first symptoms appearing in the mid-sixties. However, a significant minority of individuals experience early age-of-onset Alzheimer’s disease, with symptoms appearing as early as the mid-thirties. Cognitive impairment associated with Alzheimer’s disease may impede individuals’ memory, executive function, judgment, language, and vision. These cognitive domains are important to performing job related duties. Labor force trends and advancements in understanding disease processes are elevating the importance of resolving legal, ethical, and policy dilemmas at the crossroads of employment and Alzheimer’s disease. 

Individuals are working later in life (Bureau of Labor Statistics). Alzheimer’s disease pathology can be detected at earlier disease stages. As a result, individuals are more likely to be employed at the time they begin experiencing symptoms, learn their diagnosis, or are informed of their risk status. This raises a novel question: does the diagnosis of cognitive impairment due to Alzheimer’s disease automatically indicate that an individual is no longer employable? Answering this question requires an evaluation of employers, employees, and clinicians’ rights and responsibilities pertaining to ongoing employment and disclosure of health information. 

In 2018, an National Institute on Aging (NIA) and Alzheimer’s Association workgroup promulgated a new research framework that categorized Alzheimer’s disease according to biomarker status (amyloid, tau, and neurodegeneration) (Jack et al., 2018). While the framework is restricted to research (as opposed to clinical use), it proposes a re-definition of Alzheimer’s disease that may begin when individuals are biomarker positive but asymptomatic. If this framework were implemented clinically, individuals could learn their status within the Alzheimer’s disease continuum long before experiencing any symptoms or cognitive impairment. The Alzheimer’s disease continuum, from preclinical to dementia, reshapes how we think about employers, employees, and clinicians’ rights and responsibilities. 

Employers’ Rights and Responsibilities

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The Americans with Disabilities Act (ADA), as amended (2008) guides employer decision-making for employees with a disability (present, perceived, or past). The ADA provides critical protections that prevent employers from discriminating based on a disability. It also requires employers to provide “reasonable accommodations,” so long as the accommodations do not cause an undue burden.  However, relying on the ADA for individuals within the Alzheimer’s disease continuum is fraught with gaps in coverage. First, the ADA does not explicitly address preclinical biomarkers. Unlike other conditions, the application of the ADA to the Alzheimer’s disease continuum has not been fully tested by the courts.  To understand whether and how the ADA would apply across the Alzheimer’s disease continuum, full analysis of each disease stage must be evaluated separately. It is also important to note that because amyloid and tau are protein biomarkers, they are distinct from genetic information and not covered by the Genetic Information Non-Discrimination Act (2008). Second, cognitive impairment associated with Alzheimer’s disease is progressive, which increases the likelihood that an employee within the continuum will (at some stage) be unable to effectively and safely execute their job duties. This raises the question: Does requiring the employer to provide accommodations for an employee with cognitive impairment that will get worse amount to an undue burden? 

Employees’ Rights and Responsibilities

An employee has a right to privacy regarding health information. However, it is unclear if and when an employee has a duty to disclose their status within the Alzheimer’s continuum or another dementia. In a similar circumstance, employees are required to disclose HIV status only if it would pose a direct threat to others or themselves. However, unlike with HIV, it may be more difficult to determine when an individual’s status within the Alzheimer’s disease continuum could pose a direct threat – particularly at the earlier disease stages. Additionally, what is even less settled is whether there are specific professions or fields where the risk to public safety rises to such significance that the field as a whole should have separate or distinct rules (Lawrence & Arias, 2019). For example, should certain professions (i.e., pilots, policymakers, clinicians) require mandatory cognitive testing or biomarker screening to mitigate public safety risks? (Arias et al., 2019) These considerations raise the broader question: does an employee ever have an obligation to terminate their own employment? 

Clinicians’ Rights and Responsibilities

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Lastly, an evaluation of the crossroads of Alzheimer’s disease and employment must consider the clinicians’ duty to the employee and duty to disclose health information. Broadly, clinicians have a duty to disclose in narrow circumstances – those of abuse and a direct and immediate threat to a third party (Felthous, 2006). Similarly, in some states, clinicians must report patients to the department of motor vehicles for a diagnosis of dementia (Berger et al., 2000). This does not, however, constitute guidance for when a clinician should disclose an individual’s status within the Alzheimer’s disease continuum to a professional licensing board or employer and break doctor/patient confidentiality. 

There are more questions than answers when considering any approach that would establish stakeholders’ rights and responsibilities within the context of the Alzheimer’s disease continuum. Identifying the key issues and the factors that might influence the structure of a framework is a necessary first step. As researchers develop a clearer understanding of Alzheimer’s disease and related dementias, the likelihood that employers may learn of employees’ biomarker status within a disease continuum will increase. 

We are at a pivotal point to consider the questions that arise at the crossroads of Alzheimer’s disease and employment, research and study consequences of solutions, and develop careful approaches to implementation. As the science progresses – so should the legal, policy and ethical responses. 

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Jalayne J. Arias, JD, MA is an Assistant Professor at the University of California San Francisco (UCSF) in the Memory and Aging Center, Department of Neurology. Her research uses empirical legal research methods and qualitative research to explore the legal, ethical, and policy challenges associated with diagnosing and identifying risk for Alzheimer’s disease in adults under the age of 65. Ms. Arias joined UCSF as an Assistant Professor in 2016. She completed the Atlantic Fellowship for Equity in Brain Health at the Global Brain Health Institute between 2016 and 2018. She also completed the Cleveland Fellowship in Advanced Bioethics (Cleveland Clinic) in 2013 and a Master of Art in Bioethics (Case Western Reserve University) in 2012. Ms. Arias obtained her law degree from the Sandra Day O’Connor College of Law at Arizona State University (2008), where she graduated with a Certificate in Health Law and Order of the Barristers.