The third chapter of my teaching memoir, Surfing the Waves of Alzheimer’s: Principles of Caregiving That Kept Me Upright, is titled similarly to the second chapter, but ends with “You’ve Responded to One Person With Alzheimer’s.” I wanted to emphasize that just as each person living with Alzheimer’s disease has his or her own distinct experience, the people around them will respond differently as well.
I’ve explored the different responses people may have upon hearing about a diagnosis of dementia in previous posts. For someone living with the diagnosis, see HERE For the primary caregiver, see HERE For friends and acquaintances of the person newly diagnosed, see HERE.
Today, I’d like to take a deeper dive into understanding denial on the part of a person having memory issues and eventually, a definitive diagnosis of Alzheimer’s disease.
Early in the course of my husband’s disease, I tried to broach the subject of long term planning with him. He replied, “Renée, I’m not going to get any worse!” I just dropped the conversation at that point.
Denial of memory deficits can play a helpful role in some patients who are early in the disease. If it’s just too difficult emotionally to take in, denial can shield the person as they take time to process the news and accept what is happening. No one WANTS to believe their memory is declining, so they sometimes hide behind denial.
Denial, if lasting, however, can have negative effects on your loved one. They might refuse or delay treatment, putting them on a course of the disease progressing more quickly.
So what is the best approach to take if your loved one is in denial about their dementia? Be gentle, kind, and supportive as you listen to their fears and concerns. Let them know that you are worried about them. You might keep a diary of events as proof, not shoving it in their faces, but gently showing them your “evidence.” Or instead of a litany of concerns, you may try honing in on one to focus on. For example, “I’m worried that that you’ve missed several appointments. Maybe your physician can help sort this out.”
Instead of denial, though, your loved one might be exhibiting anosognosia. Now that’s a big stinking medical word for the inability to understand that something is wrong with one’s self, a lack of self-awareness. Anosognosia is most common in individuals mental illnesses such as schizophrenia or bipolar disease, but it often affects people with Alzheimer’s disease, usually worsening as the disease progresses. These symptoms tend to come and go, making it frustrating for family members as their loved seems to understand they have an illness at times, but not at other times.
I believe Harvey exhibited both denial and anosognosia. It was hard to tell the difference, and it didn’t really matter. It was just baffling and frustrating, until I tried to look at it from his point of view. Then my compassion kicked in, and I just loved him where he was.