Kayla* looked up at me from her brown leather couch, the kind lines on her face forming an expression of deep contemplation. “Your name is Addison*!” she declared after a few moments. I shook my head and smiled politely. “My name is Est, your social worker,” I reminded her. “Addison is your home health care aide.”
It was the fourth time that Kayla, a 75-year-old former nun residing in a retirement community, had referred to me as “Addison” in the last thirty minutes. Over the past year, Kayla had been experiencing steeply declining memory loss, a sign of progressing dementia. Now, she struggled to remember people’s names, recent conversations, and appointments with her friends and healthcare providers.
What is Dementia?
While a person’s average lifespan in the United States is now significantly longer than life expectancy in the past, this increase in longevity is linked to a rise in the prevalence of cognitive issues like dementia. Kayla’s adversities with dementia parallels that of millions residing in the United States. According to the Alzheimer’s Association, dementia is defined as a broad medical term that refers to conditions of abnormal changes in the brain. These changes are linked to a range of cognitive issues, including problems with short-term memory loss, learning retention, problem-solving skills, and language skills, which have a significant impact on one’s quality of daily life.
Although dementia is often incorrectly and interchangeably used with Alzheimer’s disease, Alzheimer’s is one of the most common types of dementia, explaining about 70 percent of clinical dementia cases. Today, 5.8 million individuals in the United States are living with Alzheimer’s dementia, 97% of whom are aged 65 and older. By the year 2050, it is expected that 14 million people will be diagnosed with Alzheimer’s dementia.
The Public Perception of Dementia
Across mainstream media, people with dementia are often portrayed inaccurately, which furthermore paints false images of the condition. For example, in critically acclaimed film The Notebook, dementia is highly romanticized and is only leveraged to propel the plotline of the story. A woman experiencing late-stage dementia elicits a narrow range of symptoms, including memory loss and impaired face recognition, a false depiction of late-stage dementia that impacts numerous regions of the brain. In addition, until she encounters a fleeting moment of being able to recall her memories with her lover, the individual with dementia is assumed to be devoid of the ability to engage in self-expression. False portrayals of dementia in popular media influence the public perception of the illness and people with this illness.
Unfortunately, in society, people with dementia are often denied the acknowledgment of having a unique identity as a human being. This dehumanization involves removing them of their autonomy and independence without their consent. I encountered an example of this problem during one of my home visitations to a patient with Alzheimer's disease. As a routine check-up, I asked the patient, “Have you noticed that your new medication has been upsetting your stomach?” Before the patient could respond, his health care aide cut into our conversation and answered for him. “He’s totally fine,” she said, looking over the patient’s shoulder and only making eye contact with me.
This natural instinct of the aide to respond in place of the patient and to talk around him is one example of the multiple ways that the personal agency of people with dementia are taken away. While many with progressive dementia struggle to live fully independent lifestyles and may require additional assistance, those with mild and moderate conditions are still capable of effectively making decisions and communicating their preferences. One cannot underestimate the strain and burden that dementia caregivers experience, ranging from repetitive statements and questions to toilet and safety mishaps. At the same time, however, it is crucial to acknowledge that people with dementia are still human beings who deserve dignity and respect. Often times, who they are is concealed, rather than lost.
Why People with Dementia Are Still Themselves
Regardless of the severity of dementia progression, people continue to have preferences and dislikes, such as in food, music, and film. People of faith backgrounds may also continue to engage in practices of prayer and social events with their religious community. They hold fast to the values and personality traits that they have acquired from decades of life experience before the onset of their medical condition. To illustrate, one of my clients with dementia is a former high school physical education teacher. During our conversations in which he often discusses his ambition for accessible education, the leadership and public speaking skills that he developed throughout his career are evident. Individuals with dementia, like all other human beings, are also able to recognize harm and discrimination on the basis of their race or diagnosis. One Black client with dementia, for example, recounted and shared with me his experience with racism earlier in the day at a grocery store, where a White employee gave him poor service. As he shared, his face was twisted with painful emotions of sadness and anger, and he was clearly capable of understanding that he was a victim of unfair treatment and stigma. Even as cognitive functions slowly deteriorate as their medical condition progresses, people with dementia will never wholly lose themselves.
A Challenge to Turn Self-reflection into Action
Reflect on the last time you encountered someone with dementia. Were you emotionally present, paying full attention to the conversation and the person to the best of your ability? Were you physically engaged, demonstrating a body posture of openness and respect by fully facing the person and making eye contact? Consider potential points of improvement and actively incorporate them into your next interaction with someone with cognitive impairments. By increasing self-awareness of our own attitudes and treatment of people with dementia, we can combat our societal proclivity for denying their personhood and individual agency.
*Name has been changed to protect the privacy of individuals.
