Knowing Your Self in Alzheimer’s Dementia

My 93-year-old grandfather was recently diagnosed with Alzheimer’s dementia. He had lived on his own since my grandmother died several years ago, and had progressively become more confused and forgetful, even forgetting to eat meals that were left for him. He was physically very fit and used to do a daily 5-kilometer walk, but when he got lost on this familiar route, it was time for him to move to an aged care facility.

After moving, he rapidly declined, becoming increasingly paranoid and aggressive, which was entirely out of character. He repeatedly tried to escape the facility and developed delusions about fighting in a medieval battle. This reached a peak one evening when he demolished his entire bedroom, smashing a chair through the window in a terrifying rage. After calming down, he spoke of his need to prepare for the feast to celebrate his pending wedding to a “real beauty.” My dad described his phone calls with my grandad as “harrowing” and felt that there were “only snippets of him left now."

In my work as a clinical neuropsychologist, I’ve seen hundreds of people with dementia, but typically in the earlier stages when they are facing the diagnosis. Having the neuropsychological knowledge was both a sword and shield when dementia struck within my family. I knew the facts about the symptoms, but had never experienced the devastating reality of how those symptoms could entirely transform the person you know, even if it was temporarily. It was gut-wrenching to know that my gentle, frail, and creative grandad was so frightened and convinced of the threat in his mind that he could demolish his bedroom. I have one of his landscape paintings in my office, and I recall staring at it for a long time after hearing about that incident.

With the help of medication, my grandad’s paranoia and aggression has settled down now. He has a renewed sense of purpose. He believes he is running the engineering business he owned in his thirties, and the aged care facility is his office. Each time my father calls him, he talks about how busy he is, and that he needs to attend an important meeting. I do not see this as a loss of self. Rather, it is a form of self-preservation. He has returned to a time when he had purpose and was thriving in managing his own successful business. Although it is a younger form of himself, it is still him. It shows that he still understands who he is. His self-image is intact.

I’d read about cases of retained but outdated self-image in people with Alzheimer’s dementia. Steven Sabat (2018) described "Dr. B," a retired professor who continued to refer to himself as a scientist and took pride in this role in his aged care facility, being sure that others recognised and acknowledged his "work" in participating in Sabat’s research. Sabat asked, “Do people … with dementia need and want purpose in life? Do they have a sense of proper pride and self-respect?” He answers, emphatically, “Yes, they definitely do."

Oliver Sacks (2019) wrote about "Mr. Q," a former janitor who continued to enact this role in his nursing home run by the Little Sisters of the Poor. He would check that windows and doors were locked, and inspect laundry and boiler rooms. The sisters respected and reinforced his identity by assisting him in this role. They gave him some keys to certain closets and encouraged him to lock up at night.

Sacks stated, “Should we have told Mr. Q. that he was no longer a janitor but a declining and demented patient in a nursing home? Should we have taken away his accustomed and well-rehearsed identity and replaced it with a 'reality' that, though real to us, would have been meaningless to him? It seemed not only pointless but cruel to do so—and might well have hastened his decline."

Sabat and Sacks’ cases, and my grandad, demonstrate that there are aspects of our self that persist in the face of Alzheimer’s dementia. The assumption that there is a diminishing or "loss" of self that accompanies the memory impairment fails to consider that we are made of more than our memories. There are other aspects of self that are crucial to who we are, such as our relationships with others ("interpersonal" self) and moral traits, including pride in our work, which both relate to self-image.

Matthews (in press) has highlighted that our self-image contains evaluations of self, including moral evaluations which are modulated by interpersonal exchanges. The persisting self-image in people with Alzheimer’s dementia continues to be sensitive to reward and to injury in social settings. Matthews states, “Those with profound episodic memory loss often do not lose their selves understood as the objects of pride and purpose, and as a source of meaningfulness.” For my grandad, his engineering business provides this sense of pride, purpose, and meaningfulness that he needs to maintain his self-image.

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If a person with Alzheimer’s dementia has a certain role or identity that they enact, respecting that role seems crucial in supporting and maintaining their self, even if it is a role they inhabited decades ago. I agree with Sacks that insisting that they face the tragic reality of dementia by ripping away that role would only serve to devastate their self-image, and hasten their inevitable decline.

There is enough devastation in dementia already, so it’s important to celebrate what remains, even if it means acknowledging a past role in the present, whether that be a janitor or engineer. I’m certainly relieved to be hearing stories of my grandfather’s contentment with his busy office rather than his medieval battle skills.