The late Dr. Oliver Sacks wrote that in the presence of a disease, there is “always a reaction on the part of the affected organism or individual to restore, to replace, to compensate for and to preserve its identity, no matter how strange the means might be.”
This is the story of how one man tried to preserve his identity when living with vascular dementia. Dr. M, as I will call him, spent his career in medicine. He retired in his mid-70’s after his patients began noticing changes in his behavior.
When I met him, he was living in a memory care unit in an intermediate care home in New York state. Content in his new residence, he spent most of his days in an easy chair with a book in his lap (holding it upside down) in a large activity room. He would get out of his chair at meal times, and in response to the rare instance when a resident would fall, he would go over and take the resident’s pulse and ask someone to call a nurse.
When staff tried to engage him in more stimulating activities, he would inevitably demur. When offered an art class, he would respond: “That’s not interesting to me. I used to be an art restorer.” When asked if he wanted to go for a van ride to get lunch at a local restaurant, he would reply: “I’m not interested. I used to drive race cars on the Bonneville Salt Flats.”
It seemed there was nothing he had not done. As I got to know him (I was the consulting clinical psychologist and had developed this dedicated environment, now called Memory Care) and learned about his identity, I found that Dr. M broadened my understanding of how identity is preserved and maintained in people living with dementia.
When I spoke to his wife, here’s how she described her husband’s behavior:
Me: Your husband certainly has had an interesting life.
Mrs. M: What did he tell you?
Me: He said that he had driven race cars on the Bonneville Salt Flats.
Mrs. M.: What else did he tell you?
Me: That he had been an art restorer?
Mrs. M.: Did he tell you that he was the Chief Medical Officer for the U.S. Army in the European Theater of Operation during World War II?
Me: No, he hadn’t told me that.
Mrs. M.: Good, because none of those is true. He has been lying as long as I have known him.
The question arises as to whether Dr. M’s false personal narrative as we heard it was related to his dementia or part of his personality throughout life. His wife’s telling description of him would indicate that his aggrandizing stories were life long and not the confabulations (made up stories about events) that can be seen in people with dementia. But it was especially significant that he could retain these stories about himself in the midst of a dementing disorder, probably a result of the focal damage that characteristically results from vascular dementia and that differentiates it from the generalized memory loss of Alzheimer’s disease.
Research shows that the mind is not like a computer and that remembering is a creative act.
In our minds, a memory as recalled is altered by current circumstances that get incorporated into the recollection, and there is research that shows that when reviewing one’s life, autobiographical memory is edited to make us look better than we were and enhance self-esteem. Dr. M was still able to summon his “illusions of the self” that lived in his fantasy life for years and used them to, as Sacks wrote, preserve his memory, “no matter how strange the means might be.”
We are more likely to see persons with dementia inserting real memories of past events and roles from their lives into the present and acting out roles that are historically true. Mr. G, a retired guard in a state prison, did this when he walked up and down the halls of the same care setting checking to see if the doors were locked, as did Mr. W, a retired apartment building superintendent, when he awoke at 2 a.m. and went outside to wait for the coal truck to come.
We never contradicted Dr. M or pressed him to participate beyond his evident preference of acting in line with this retained view of himself nor did we challenge his reason for preferring not to engage with the other residents. His way of coping was to maintain his separate status, perhaps a holdover from his days as a medical practitioner, and we saw no evident benefit to him if we confronted him about his factually flawed memory of self.
This makes us wonder if all preserved memories in people with dementias are accurate, and if it matters whether they are. Research has shown that elders without dementia who are engaged in life review typically distort memories of past life events to present themselves in a better light. We know now that arguing with a person living with dementia over whose “actuality” is valid is not worthwhile unless there is a risk of danger to the person or others. One of the comforts available to persons with dementia may be a retained ability to use fantasy to generate positive “illusions of the self.” These self images provide comfort and a more pleasant answer to the question that often sounds in my ears through The Who’s opening bars: Who Are You?