It turns out that my view of the role denial played in our Alzheimer’s journey was probably wrong. More than ten years ago, when we first noticed that Gayla was experiencing short-term memory loss, my initial reaction was to ignore it. I didn’t want it to happen, so I was unwilling to accept it. However, eventually her repetitive questions and other mental lapses made further avoidance impossible, and I was forced to acknowledge the problem was real.
Gayla, however, never reached the point at which she would acknowledge her limitations. In my view, she continued to operate in a world of denial. When I learned that people with Alzheimer’s were usually unaware of the cognitive deficits and memory loss associated with the disease, I presumed that denial was an expected side effect of the illness. I have since learned that this is probably not what happened.
Denial is a defense mechanism which is used when a person is faced with a situation that is too uncomfortable for them to accept. That clearly is what happened with me during the early stage of the disease. Gayla, however, did not consciously, or even unconsciously, reject the evidence that a problem existed. She never was even aware that there was a potential problem. Her reaction is better described by a medical condition known as Anosognosia.
In cases of Anosognosia, physiological brain damage causes a lack of awareness about one’s own illness or medical condition. Anosognosia is common among neurological disorders (like Alzheimer’s and schizophrenia), and in Alzheimer’s cases is generally associated with dysfunction in the frontal lobe of the brain that plays a central role in self-awareness and insight. Frontal lobe dysfunction is also the reason that Anosognosia is more common and severe in Alzheimer’s cases than in other cases of dementia.
The Cleveland Clinic reports that more than 80 percent of people who have Alzheimer’s Disease also have Anosognosia. While people in denial choose to deny, people with Anosognosia do not have a choice: they lack the awareness or insight to even recognize the illness. Denial can eventually be corrected; Anosognosia never can be cured.
This distinction is important for Alzheimer’s caregivers to understand. If the person with Alzheimer’s was in denial, we could talk about ways to mitigate it, but when the problem is Anosognosia, this is not an option. Anosognosia poses significant challenges for those caring for individuals with Alzheimer’s because the lack of awareness can cause them to resist or reject assistance, leading to difficulties in providing appropriate care and support.
In Gayla’s case, we noted that she adjusted reasonably well to her transition to full-time residency. However, she continues to resist caregiver support. It is likely that Anosognosia is playing a role in her behavior.