Yesterday I had the great privilege and honour of meeting with Dr Steven Sabat, not just a Professor at Georgetown University, Department of Psychology or renowned academic, but to me a very inspirational dementia care advocate. He presented at the Alzheimer’s Australia national conference in Brisbane last year where I also heard him speak and also briefly met him at the conference dinner, and my dear husband and I were so impressed with his presentation at the conference yesterday, I decided to Google him and found this article about him, which I have copied almost in its entirety below as it clearly describes his philosophy of care for people with dementia. I could have tried to take notes yesterday, but whilst listening to him speak, I was simply too interested in giving him my full attention; it was most definitely food for our soul. This article practically says it all anyway! I have many online friends in this global community; people trying to improve the experience of people living with, or caring for someone with dementia, and I feel sure if you have not already heard of Steven, or read his work, you will appreciate reading this article.
Dr. Steven Sabat Reveals the Person Behind the Disease written by Theodora Danylevich
Dr. Steven R. Sabat’s work with individuals suffering from Alzheimer’s Disease (AD) reflects an important new approach in the field of neuropsychology, aiming to understand the illness from the inside out. Dr. Sabat, a member of Georgetown’s Psychology Department, is wary of prevailing social stereotypes about AD and the ageing population at large. Often imperceptibly absorbed into our social fabric, stereotypes can not only be detrimental to the morale of the individuals involved, but they can significantly interfere with the development of an accurate scientific understanding of the pathology or situation at hand.
The conventional formulaic questionnaire has proven to be quite useful in medical diagnostics, but this standard is vulnerable to the pitfalls of stereotyping and labeling. The method that Dr. Sabat favors—focusing on specific, personal experiences, natural conversations, and face-to-face interactions that can extend over a period of years with particular individuals diagnosed with AD—performs a vital function, filling in the “personal” gap that often remains in popular medical practice, from diagnosis to therapy.
Dr. Sabat explains his approach with a quote from Oliver Sacks, an American neurologist and author of the book Awakenings: “It is one thing to talk about the disease a person has, but quite another to talk about the person the disease has.” A subtle reversal—but with far-reaching implications.
Fundamental to Dr. Sabat’s approach is that “it is extremely important to understand the subjective experience of AD; that is, what does it mean to the person to be experiencing certain losses of ability, how does the person react to those losses, how do caregivers react, and what do the reactions of caregivers mean to the person diagnosed?”
Dr. Sabat insists on the importance of beginning by looking at the fundamental rhetorical aspect of how individuals are addressed and talked about.
“At treatment centers, there is this thing hanging in the air about everyone being a patient,” says Dr. Sabat, explaining the impact of labels and stereotypes as viscerally palpable, even to someone who does not bear the said label.
Dr. Sabat describes this kind of rhetoric as part of a deficit approach, which focuses overwhelmingly on problems and limitations, and is endemic to current medical practices.
“Why call someone a patient?” he asks. “As if that described their entire person?”
According to Dr. Sabat, a pivotal step toward positive change involves stepping outside of the pathological rhetoric.
Dr. Sabat’s work uncovers and challenges negative and potentially detrimental stereotypes of AD sufferers—for example, that they are passive, vegetables, antisocial, or irrationally angry. Such stereotypes make it dangerously easy to mistreat and misinterpret individuals with AD. While Dr. Sabat’s approach requires considerable time and commitment, the results of his work reveal the valuable fact that persons with AD are often hardly as disabled as they are socially expected to be.
What Dr. Sabat calls “learned helplessness,” a term coined by psychologist Martin Seligman, is in fact a reaction to such stereotyping, acting like a self-fulfilling prophecy, since passivity is among the stereotypical expectations of individuals with AD. Their perceived passivity or other symptomatic behavior has been shown to be a learned response to the stereotypes that their caregivers and practitioners project onto them, along with assimilated stereotypes (known as self-stereotypes) that individuals with AD have frequently learned and absorbed.
“In addition,” says Dr. Sabat, “people diagnosed with AD can often become passive and ‘apathetic’ when they have nothing to do, but the assumption is that passivity and apathy are symptomatic of brain damage rather than symptomatic of the social isolation that such people often experience.”
Dr. Sabat’s work requires patience and creativity. If an individual diagnosed with AD cannot remember a word and uses another that either sounds like or is related to the word that they are searching for, the stereotype-based approach won’t necessarily legitimate this effort, likely punitively labeling the individual with yet another stock deficiency.
Dr. Sabat recognizes, however, that, just like any one of us, the individual is actively working and trying to provide the appropriate term, engaging in circumlocution to find the right word. Dr. Sabat encourages each person to express him or herself successfully and builds a relationship with them through the countless hours he spends getting to know them and their primary caregivers.
Dr. Sabat gives individuals with AD a fair chance and a safe space to express themselves. He works around the limitations of the illness to locate each individual’s existing cognitive capabilities. Further, through his personalized inquiries, Dr. Sabat has succeeded in legitimating behaviors and attitudes that may otherwise easily fall under the rubric of stereotypical symptoms and deficits, as having valid and cogent motives.
As an example, Dr. Sabat relates the story of the man whose coldness toward his son was labeled as irrational hostility. Dr. Sabat learned and shared the background to the story:
“This man loved to mow the lawn—he was very proud of doing it, and he did it every week. His wife was concerned that he might hurt himself and locked the shed, but he simply unlocked it to get to his lawnmower. Finally, she conspired with their son behind her husband’s back to have the son take the lawnmower and keep it at his place.
“When the man next went to the shed, he didn’t find the lawnmower, assumed it had been stolen, and reported this to his wife, who told him that the lawnmower was not stolen. In fact, she said, she and their son decided it was dangerous for the man to mow the lawn, so the son took the lawnmower to his (the son’s) house.
“But this was all done without the man’s consent, and he felt betrayed and disrespected.
“Five days later, when the son came to the parents’ home for dinner, the father angrily ignored the son. When asked if he was angry with his son, he replied that he was. When asked why, the man said, ‘I don’t know.’ He was displaying righteous indignation as opposed to ‘irrational hostility’.”
It becomes clear that the man’s feelings were legitimate, though he could not himself recall or articulate in the moment the reason for his coldness. As an individual with AD, the man had a hard time recalling the details of what had occurred, but the emotions were still being felt.
Dr. Sabat takes a moment to point out the difference between remembering and recalling in this instance.
“The man was remembering the feeling of having been betrayed, and that the son played a part in the incident, but the man could not explicitly recall the details of the incident,” explains Dr. Sabat. “The man reacted accordingly. What the man in the situation above did was show ‘implicit memory’ of the situation that hurt and angered him, without being able to recall consciously (explicit memory) the details of the situation.”
From this example, Dr. Sabat is able to demonstrate that “people with AD can form new memories and be affected by how they’re treated and act appropriately, even if they cannot consciously recall the way they’ve been treated.”
It is impossible to ignore the warmth and the connection that Dr. Sabat feels toward the individuals with whom he has worked. He plays a deeply significant role in their lives, learns about their histories, and experiences their personalities and senses of humor. And, in turn, “those with whom I work seem to experience a great deal of satisfaction as well,” says Dr. Sabat.
Students from Dr. Sabat’s Clinical Neuropsychology class occasionally become involved in his work with people diagnosed with AD and work with them in adult day centers. As a result, a number of his students have gone on to be co-authors with him on articles published in scientific journals, including one recently co-authored with alumna Jane Scholl, “Stereotypes, stereotype threat and ageing: implications for the understanding and treatment of people with Alzheimer’s disease,” which is forthcoming in the internationally recognized journal, Ageing and Society.
Dr. Sabat’s sensitive research approaches transfer to his teaching, as he says, “I can’t count how many times on my evaluations, students comment, ‘I was treated as a person, not just a student.’”
Dr. Sabat’s work stands to revolutionize therapeutic approaches to conditions like AD, providing individuals and their caregivers with accurate and positive information, allowing them to focus on and foster abilities that remain intact and to maintain a sense of connection and understanding.
He is often encouraged and warmed by the results of his approach: “This woman, a caregiver that I’ve been helping, wrote to me the other day, and what she told me touched me deeply:
“‘I always knew that he loved me,’ she said about her husband who has been diagnosed with dementia, ‘but I’m only now realizing how much I love him and how much I would do for him.’”
This overjoys Dr. Sabat: “It’s just food for my soul,” he says.
In the introduction to his book The Experience of Alzheimer’s Disease: Life Through A Tangled Veil, published in 2001, which is an insightful and inspiring culmination of his extensive work with individuals with AD, Dr. Sabat writes, “My life has been enriched immeasurably by the courage, sensitivity, and humanity of these individuals and their caregivers, and I will forever be in their debt.”