Because dementia can leave people so vulnerable and can render them helpless, caregivers can tend to treat them like children. I slip into this sometimes, talking to adult human beings as though they are children. I do realize that this is the opposite of affirming their dignity and so work to avoid it.
I think it is easier to infantilize people the less we know about who they were before the dementia took hold. It can be hard to find who they were before if the person has no family or friends. Sometimes they do have family who in their grief can't bear to see the person they love so diminished by the disease. Sometimes they "check out." I don't blame them. The loss one experiences in dementia is awful and ongoing.
It can be heartbreaking even for me to learn that the person who can no longer formulate a sentence was once a brilliant writer, the person who can no longer play the piano was a gifted musician, the person who is now bed bound was once an athlete, the person who can no lift a hand used to work in construction. It can be hard to learn that the person who aggressively resists care was once a person who helped everyone they met. If it's hard for me to learn these things I can only imagine what it's like for those closest to them to witness the unravelling of that amazing person.
Thinking about this and feeling sad this morning it hit me that what that person did before the disease still shines, undimmed. Their accomplishments remain theirs. Their best qualities will always be their best qualities. The love they offered, the life they lived, who they were all shaped those around them in positive ways that persist.
I have come to believe that the core of who the person was remains intact. They are still in there. Finding out what they loved can unlock that core, can free them. Early on I had a patient who had become nonverbal. I kept reaching out to their child and eventually found out the person's favorite musical artist. The next time I saw the patient I played songs by the artist and to my surprise, they started mouthing the words. They died shortly afterwards, but knowing they had that moment of joy in favorite music was comforting.
It turns out that well-loved songs, poetry, prayers can remain intact for a long time. Because they were well-loved, they can express what that person valued most and capture their core. Another patient was a fighter pilot who later flew for airlines. One day I found and read them a poem about flying and this patient visibly relaxed and brightened. It turns out the patient had memorized that poem and loved to recite it. It expressed the experience of flying so core to this person's identity. We read it at the memorial service.
Even when we can learn nothing about a patient, cannot get at their core, we can still affirm and promote their inherent worth and dignity. We do this by treating them as we would want to be treated in the same circumstances. We do this by practicing respect, compassion, and kindness to them and to their families.