One year after the comedian Robin Williams’ suicide, his widow, Susan Williams, has declared that her husband’s suicide was not, as had been suspected, a devastating symptom of a depression. He was, she insists, “killed” by Lewy Body Dementia, a neurodegenerative disease.
Her remark suggests her husband’s suicide was the rational act of a person suffering from both progressive losses to his capacity and the concern of further losses. His act would add to a small but growing series of cases, such as the feminist psychologist Sandra Bem, who, after her diagnosis of Alzheimer’s disease, planned and then committed suicide, although Bem, unlike Williams, engaged her family in her decision and years of planning.
Lewy Body disease is one cause of neurodegenerative dementia. The term “neurodegenerative” captures how neurons are not simply dysfunctional. They’re dying. Williams’ diagnosis was not known until an autopsy, but he did know he had another neurodegenerative disease, Parkinson’s disease. Like Lewy Body Disease, it causes progressive losses not only in the ability to move, but also in thinking and decision-making.
Rational suicide is morally challenging, and it’s gaining acceptance. With the passage of California’s “End of Life Act,” fifteen percent Americans now have the legal right to end their life rather than suffer the advanced stages of a disease. The core conditions to what proponents call “doctor-assisted death” and opponents call “physician-assisted suicide” are that the person is judged terminal, capable of making the choice and able to execute the act.
Williams likely was not terminal. His decision to end his life will stir debate over why doctor-assisted death is limited to persons who are terminal. Proponents of expanding it to non-terminal stages of a disease argue it should be available for persons whose disease could last for years before death, years during which the person will experience unwanted suffering while incapable of either making the choice or being able to end their life. They point to the Netherlands’ euthanasia law that includes “unbearable and hopeless suffering” as justification.
Suffering so severe that a doctor should prescribe a medication to end the patient’s life has countless forms but one common denominator: the loss of dignity. Many laws that permit assisted suicide have “dignity” in their title, and a study of Washington state’s law found “loss of dignity” was among the most common reasons people sought death with dignity.
There are many ways to arrive at the loss of dignity, but most travel on a common road, a road called stigma. Arguably, the greater the stigma – beliefs that create feelings of distance, shame and otherness — the greater is the threat to the dignity of persons with the disease. The more we understand the causes of stigma, the better we can preserve dignity.
My colleagues and I have studied how the general public experiences stigma towards persons with Alzheimer’s disease, the most common neurodegenerative disease. Their perceptions of stigma set the cultural tone.
Stigma is a many-headed hydra. A social-cognitive framework posits that various signals such as labels, symptoms and appearance lead to stereotypes, emotional responses and discrimination. Stereotypes include beliefs about functional limitations and appearance. Emotional responses include pity, fear, disgust, and discrimination includes behaviors such as exclusion from employment or voting.
Our core goal was to understand what drives these various components of stigma towards persons with Alzheimer’s disease.
To begin to answer this question, we performed an experiment whose results are published in a recent edition of Social Science & Medicine. We randomly assigned 789 adults aged 18 and older to one of 9 vignettes. Each vignette described a man with cognitive and functional problems. After the respondent read the vignette modeled after mild stage dementia with details such as “He has stopped his long term volunteer job as a crossing guard,” they completed a set of stigma measures about that person.
Using an experimental manipulation, we varied two things: the cause of the cognitive problems and whether treatment could affect the natural history of the problems. We had three possible causes – Alzheimer’s disease, traumatic brain injury and no cause – and three possible prognoses – improve, stay the same or worsen. Pairing each cause with each prognosis led to nine possible vignettes.
Our hypothesis was that the prospect of worsening decline more so than the cause of the decline (the label Alzheimer’s) would drive stigma reactions. That is, stigma in persons with Alzheimer’s disease is driven by the fact that it will get worse.
And that’s what we discovered.
The expectation that a person with mild stage dementia would get worse led to significantly higher structural discrimination, pity and social distance. The cause of that dementia did not drive stigma. In fact, the Alzheimer’s label appeared to have a protective effect on negative aesthetic judgments. It’s not the label “Alzheimer’s disease” but the prospect that the disabilities in a person with mild stage dementia will get worse that drives the general public’s perceptions of stigma in Alzheimer’s disease.
The finding that perceived prognosis has a greater effect on stigma than the Alzheimer’s disease label has substantial implications for public policy and messaging. The U.S. has embarked on a national Alzheimer’s plan. Alzheimer’s is a “catch-all” term as the plan covers the other neurodegenerative diseases such as Lewy Body Disease. One of the goals is prevention, an approach that requires early diagnosis, and initiatives like detection of “any cognitive impairment” in the annual Medicare wellness visit will foster this goal.
As we pursue prevention, we’ll be labeling persons with neurodegenerative diseases at a stage when their disease is largely ahead of them. The ways we talk about living with Alzheimer’s disease, about the future after an early diagnosis, will shape whether we feel stigma and therefore a threat to our dignity and so our desire to be dead.
Stigma is in our hands. Treatments to alter the natural history of neurodegenerative decline will help to reduce it. We need to clean up our language as well. “Zombie,” “living dead” and “death twice” may fire up the need to take national action against Alzheimer’s, but we pay the price of stigma. Such words should be as offensive as racial slurs. We should also deepen our conversation about how to live with the threat of cognitive decline. My colleagues and I launched makingsenseofalzheimers.org. Words and images will not cure neurodegenerative diseases, but they can help us make sense of this problem of the mind. What if Robin William’s last act was not his suicide, but, like his candid humor about his depression and substance abuse, a comic monologue about his losses?
