Evelyn Jiang: To Fib or Not to Fib: Deception in Dementia

When a distraught Alzheimer’s patient pounds on his bedroom door demanding to be brought home, staff members at the Lantern of Chagrin Valley assisted living home in South Russell, Ohio are well prepared to respond—the door is opened, a nursing aide brings the patient to the nearest bus stop, and the patient is left alone to wait for his bus (MacFarquhar, 2018). At the same time, in a Boston care center, a similarly distraught patient is placated by a timely phone call from her daughter. As she moves to sit down, they discuss the past weekend, meal plans, and gardening. 

Deception in dementia care takes on a variety of forms: fake bus stops for buses that will never arrive, pre-recorded audiotapes from loved ones, baby dolls for patients to coddle and mother and even rooms filled with vintage artifacts meant to recreate sceneries from a small Californian town in the fifties (MacFarquhar, 2018). 

Dementia is an umbrella term used to denote a deterioration in cognitive function—remembering, thinking, and reasoning—that is severe enough to interfere with a person’s daily life and activity. The syndrome affects an estimated 6.5 million Americans aged 65 and older (Alzheimer’s Association, 2022). Alzheimer’s disease, a progressive neurologic disorder in which the brain atrophies as neuronal networks break down, is the most common type of dementia and proceeds through a course of seven clinical stages. Noticeable issues with short-term memory manifest in stage 3; by stage 5, individuals are generally no longer able to live without assistance and are enrolled in long-term care programs (Reisberg, 2010).

In these settings, “therapeutic fibbing” is the term used to describe lying for the benefit of the patient. A 2006 UK study found that 96% of care staff reported that they fibbed with residents with dementia; similar numbers have been reported in other countries (James et al., 2006). The development of these practices stems from the passing of the Omnibus Budget Reconciliation Act of 1987 (OBRA ‘87), which established the right of nursing home residents to be free of chemical and physical restraints when not medically required, thereby setting new, improved standards of care for elderly patients (Hawes, 1996). Since its passing, illusions, white lies, and other forms of deception have seeped into the daily routines of the dementia care sector as ways to manage the behavioral and psychological symptoms of dementia. 

Despite its prevalence, deception of all scales in dementia care is largely unaddressed by formal law and policy, remaining a gray area among modern healthcare workers and bioethicists. Can lying be justified if it is done for the well-being of another? If so, how far should it go? 

Proponents of the use of deception point out that for those who are cognitively impaired to a level in which they cannot process information well enough to understand it, therapeutic fibbing can help reduce unnecessary distress. The damage to the brain that comes with dementia leads patients to experience a different version of reality: forcing them to join our real world only causes confusion, pain, fear, and agitation. In some cases, the obligation to promote the well-being of the patient overrides the prima facie duty to not deceive. Thus, honesty can be yielded for compassion in dementia care.  

Opponents of the use of deception, on the other hand, will point out that these practices disrupt the autonomy of the patient. Lies restrict people’s opportunities to make choices for themselves, a cornerstone of good medical practice. One of the greatest reasons that people fear dementia is the loss of dignity, independence, and ultimately “self” that seems to follow with its progression—a loss only exacerbated by fibbing. Furthermore, these practices can often backfire: dementia doesn’t progress in a strictly linear fashion, so although patients lose awareness and awareness over time, they may still experience periods of lucidity. A 2014 study demonstrated that Alzheimer’s patients can feel emotions long after they have forgotten their cause (Guzmán-Vélez et al., 2014). Realizing that they are the victim of manipulation and dishonesty, patients may continue to experience feelings of distrust or even paranoia in their care homes, negatively impacting their happiness and state of mind.

The current opinion is that benevolent lying is sometimes a necessary evil in dementia care but should be a last resort. If lying will prevent harm, then it becomes the preferable option, hence the continual employment of deception in care homes. Yet this stance is not shared by all and is notably opposed by many who are or will become dementia patients and receive such care. To respect the autonomy and dignity of all dementia patients, including those who wish to minimize fibbing in their care, the combined use of advance directives and supported decision-making should be the default for dementia patients. 

Advance directives are individual exercises in prospective autonomy. Patients can state how they wish to be treated or designate another person to make medical decisions for them in advance of being physically or mentally incompetent to direct their medical care. Advance directives alone are not sufficient, as changes to personality can come with dementia, resulting in altered interests of the patient that may clash with their former interests. While recent legal scholarship on dementia and healthcare decision-making emphasizes the precedent autonomy, the current best interests of persons with dementia should also inform the care they receive. Thus, a more dementia patient-centered approach is needed.

Taking insight from disability law, the incorporation of supported decision-making addresses this need. Supported decision-making is an alternative to surrogate decision-making in which a person with a disability that impairs their cognition works with a supporter—someone they trust whom they’ve formed an agreement with—to help with their medical decision-making. Supporters can help with collecting additional information for the patient to inform their decision, help patients think through their decisions, and communicate the decision to others. In this model, the person with the disability retains the legal authority over their decisions, rather than supporters acting as surrogates. Twelve states have currently adopted supported decision-making legislation.

From fake bus stops to phony phone calls, deceptive practices are an increasingly common component of dementia care. While the current opinion on the role of therapeutic fibbing in dementia care is divided, it is necessary to give a legal framework that allows people to decide the extent of deception’s role in their prospective care. A combination of advance directives and supported decision-making provides a dementia patient-centered approach that achieves this.

Evelyn Jiang is a first year at Yale University in Morse College

Citations

Alzheimer’s Association. (2022). 2022 Alzheimer’s disease facts and figures (No. 18). https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf

Guzmán-Vélez, E., Feinstein, J. S., & Tranel, D. (2014). Feelings Without Memory in Alzheimer Disease. Cognitive and Behavioral Neurology, 27(3), 117. https://doi.org/10.1097/WNN.0000000000000020

Hawes, C. (1996, December 1). Assuring Nursing Home Quality: The History and Impact of Federal Standards in OBRA-87. The Commonwealth Fund. https://www.commonwealthfund.org/publications/fund-reports/1996/dec/assuring-nursing-home-quality-history-and-impact-federal

James, I. A., Wood-Mitchell, A. J., Waterworth, A. M., Mackenzie, L. E., & Cunningham, J. (2006). Lying to people with dementia: Developing ethical guidelines for care settings. International Journal of Geriatric Psychiatry, 21(8), 800–801. https://doi.org/10.1002/gps.1551

MacFarquhar, L. (2018, October 1). The comforting fictions of dementia care. The New Yorker. https://www.newyorker.com/magazine/2018/10/08/the-comforting-fictions-of-dementia-care

Reisberg, B. (2010, November 23). Clinical Stages of Alzheimer’s Disease. Fisher Center for Alzheimer’s Research Foundation. https://www.alzinfo.org/pym/feature/clinical-stages-alzheimers-disease/