Goodbye in Reverse: Understanding "Retrogenesis"

The journey of dementia is a profound circle, bringing us back to the very beginnings of our human experience. When we view Alzheimer's through the lens of retrogenesis, we see that the brain isn't just "failing"—it is systematically retracing the steps of its own development, only in reverse.

Here is an expanded look at that journey, including the deeply personal milestones that many families witness.

The Adolescent Phase: Defiance and the Search for Answers

The earliest shift often looks like a sudden, jarring change in personality. For many families—including my own—this is the most exhausting period. I remember being a psychology major, sitting in a developmental psych class and realizing that my dad, a man of incredible character, was acting like a defiant teenager. He was experiencing young-onset Alzheimer's at a time when it wasn't a common diagnosis. While my mother navigated endless doctor appointments that yielded no answers, she was also living with a husband who had lost his "filters"—displaying teenage angst, a loss of safety awareness, and an inability to delay gratification. This stage is a "diagnostic limbo" where the person looks like an adult but reacts with the impulsivity of a youth.

The Childhood Phase: Comfort, Play, and the "Baby Dolls"

As the disease moves further back, we enter a phase that mirrors middle childhood. Logic and reasoning disappear, replaced by a need for sensory comfort and simple "work." During this stage, many caregivers find that their loved ones—particularly women—gain immense peace from tending to baby dolls. To an outsider, it may look like "playing," but to the person in this developmental stage, it is a vital connection to their nurturing instincts. Tending to a doll provides a sense of purpose, a focus for their affection, and a way to self-soothe. It is a beautiful example of meeting a person exactly where they are cognitively.

The Infantile Phase: The Full Circle

Finally, the journey reaches the very beginning. The individual enters an infantile stage where verbal communication ceases and they become entirely dependent on their "parents"—their caregivers—for every need.This return to the start of life is often reflected physically. When my father passed, he was contracted in the fetal position. It was the ultimate physical manifestation of the reverse journey: he ended his life in the same protective posture in which we all begin it.

The Caregiver’s Compass

As caregivers, our greatest tool is the ability to recognize the "age" of the soul we are caring for.

• Meet the Emotional Age: If they are in their "teenage" phase, avoid power struggles. If they are "childlike," embrace the joy of play and dolls.

• Safety Over Logic: You cannot reason someone out of a developmental stage. Focus on making their environment safe and ensuring they feel secure.

• Honor the Journey: There is a sacredness in being the person who "parents" a parent. By meeting them at their cognitive age rather than their chronological one, we provide a soft place for them to land.

In the quiet reversal of roles, we find a sacred opportunity to return the love that first raised us—holding the hand that once held ours and becoming the safe haven they were for us so long ago.

"To love someone is to learn the song that is in their heart and to sing it to them when they have forgotten." Arne Garborg