I remember my stomach dropping as I sat in the passenger seat of my dad’s car, about to visit my grandmother’s residential care home. He said to me, “Before we go in, you need to understand: she’s not going to remember you.”
I look back and recall meeting an old college friend’s mother for the first time. After she asked what my degree had been in for the third time in a row, her daughter began to berate her. I only knew to look away, but not before I saw the redness of shame and apology spreading across the older woman’s face.
Most of us know someone who has been affected by some form of dementia. No matter what role we have on the caregiving team for these individuals, we will experience disquiet and grief as we accompany them through this difficult phase of life. Some of the unfortunate ways we cope are to dehumanize and create distance. We go through the routine of caregiving but emotionally we disconnect. Maybe we would rather talk around our grandmother than talk to her directly. We might feel resentment towards an uncle whose medical needs and angry outbursts are growing increasingly burdensome on our aunt. Perhaps we put off calling a parent because we don’t know how many times we will have to repeat ourselves, and we don’t want to find out.
Seth and Lauren Miller Rogen’s scholarship, Humans of Dementia, wants to restore humanity, closeness, and connection by rewriting the prevailing narrative of what it means to be a person with dementia. The scholarship is only one of the many advocacy efforts developed by Hilarity for Charity (HFC), a nationwide non-profit that supports families, educates the public, and funds medical research in the battle against Alzheimer’s disease. University and high school students can apply for the $1500 scholarship by submitting a written or photo essay that profiles someone with dementia. The submission must prioritize the subject’s humanity by telling a cohesive, meaningful story about who the subject was before and after their diagnosis. Applicants are encouraged to conduct personal interviews with the subject and craft a narrative full of specific detail and nuance. The goal of the scholarship is to inspire a new appreciation of how people with dementia deserve to be perceived and treated—not just as a diagnosis, but as human beings.