June is Alzheimer’s and Brain Awareness Month. In November 2024, Skinner House Books published the 10th anniversary edition of Rev. Dr. Jade C. Angelica’s memoir and guide about caregiving for someone with Alzheimer’s Disease, “Where Two Worlds Touch: The Spirit and Science of Alzheimer’s Caregiving”. As part of Alzheimer’s and Brain Awareness Month, the In Good Faith blog has asked Rev. Dr. Angelica for a reflection (see below). We thank her for her deeply touching words, her humane and human-centered perspective, and her reminder that the belief in the inherent worthiness and dignity of all people is a core shared value and principle of Unitarian Universalists.

After attending my Meeting Alzheimer’s workshop on communicating and connecting with people with Alzheimer’s, a nursing aide from a dementia care unit sought me out to tell me this: “All this person-centered care is well and good; but it doesn’t matter how we treat them. They don’t know the difference anyway.”

Although this statement is appallingly false, this nursing aide is not alone in her beliefs. In our culture, we’re not socialized to value the aging process, or those who are disabled or experience neurodiversity, or especially those with cognitive decline. We continually receive messages that tell us people with Alzheimer’s are: “empty shells,” “lost,” “useless.”

Much of the Alzheimer’s literature and programming focuses on the inevitable losses and how to cope. Although this information is important to prepare us for the journey, it’s not the only information we need. Without denying the losses, I focus on what remains, believing this approach leads to better quality of life.

In the category of human memory – which is complex – quite a lot remains for people with Alzheimer’s, including body memory, self-expression, and emotional memory.

Jim attended our Memory Café accompanied by staff from the dementia care center where he lived. He was described as disengaged from life and others. The program at the Memory Café was a “praise service” using music videos, and while the music played I walked around the semi-circle of participants, taking each person’s hands, making eye contact, saying “Welcome.” Jim, it seemed, thought I was asking him to dance. He stood up, swept me into dance hold, and around the floor we went. Thanks to body memory, Jim still had the moves!

Just because someone with Alzheimer’s doesn’t initiate an activity they used to love, it doesn’t mean they can’t – or don’t want to – do this. However, they can only initiate to the level of their current capacity, so we may need to draw them out.

After Lester Potts was diagnosed with Alzheimer’s, his creativity burst forth during an art therapy activity. Lester worked in a saw mill his whole life, and had never touched a paint brush. Yet, while living with Alzheimer’s, he became a celebrated water color artist whose work has been shown all around the world.

Through his art, Lester revealed that Alzheimer’s does not necessarily take away one’s memory of one’s self. When Lester was no longer able to talk, he painted a memory of himself with his friend and co-worker, Albert. They are working together, felling a tree in this painting titled, “Teamwork.”

Researcher Edmarie Guzman-Velez conducted a study about the retention of emotional memory in people with Alzheimer’s. Her research shows that although cognitive memory is lost, emotional memory is not. For example, when a woman with Alzheimer’s feels happy during a family visit, this happiness will remain after her family has gone, after she has forgotten the visit. The brain forgets; the heart remembers. The process is the same for emotions of sadness, anger, and fear. The emotions remain, but the ability to analyze the causative experience or self-soothe are lost. We, therefore need to learn to soothe our loved ones when they are in emotional distress.

My mom and I connected on all of these levels. We walked together, played drums and piano, went to exercise classes, opened doors, pushed elevator buttons, and turned on drinking fountains…keeping her physically engaged in the activities her body remembered.

There were times when Mom expressed her preferences – revealing her remaining sense of self. Once I asked Mom if she liked her doctor. She emphatically replied, “No, I do not!” “Why?” I asked. “Because he always speaks to the other adult in the room.” She wanted to be respected; to have her personhood recognized. I changed her doctor as soon as I could.

Toward the end of Mom’s life, she needed a wheelchair assist, but she could still stand. After her dinner, on many evenings, an aide would help Mom to stand, and we put our arms around each other, hugging. While I had my arms around Mom, I scratched her back, knowing she liked this, helping her feel physical comfort. At this stage of the disease, Mom’s hands were chronically clenched into fists. But on those huggy nights, I could feel her fingers, behind my back, slowly releasing and moving, back and forth. I sensed her desire to give me the same pleasure she was receiving, and I was moved by both her intention and her effort. This for me was an example of Mom’s remaining emotional ability to receive love, and to express love.

This truest expression of our humanity is something that remains throughout the Alzheimer’s journey: the desire to give and receive love.