” Dealing with early stage Alzheimer’s, I’ve found the hardest part is the stigma that comes with it. Friends don’t come around as often. Is this true?????,” wrote a friend.
“Don’t tell anybody! I don’t want anyone to know,” pleaded Linda when in 2009 we received word that she has Frontotemperal Dementia (FTD).
“They’ll treat me differently. They will think I’m crazy,” she added.
Studies indicate that people fear dementia more than they fear cancer, and even death itself.
When asked what they fear the most, the answers vary: loss of control, loss of identity, “being a burden,” not remembering family, being treated differently, what other people will think.
A societal problem undergirds those fears, and it’s the stigma associated with the disease. Our hyper-cognitive, capacity-reliant society diminishes the personhood and worth of people with cognitive impairments.
Even the word “dementia” contributes to the stigma. It literally means “loss of mind” and the dictionary lists the following among the synonyms: ”madness,” “insanity,” “derangement,” ”lunacy.”
Dementia is an umbrella term that covers multiple diseases that affect cognitive functioning, with Alzheimer’s disease comprising between sixty to eighty percent. Indeed, changes in the brain contribute to the diseases.
But dementia is more than a brain disease. Dementia is a social-relational disease; and the stigma society attributes to people with cognitive impairment contributes to its destructive consequences.
Stigmatizing people with Alzheimer’s and other forms of dementia may be more damaging than the pathology at work in the brain. Stigma contributes to isolation and diminished sense of self-worth.
There should be no more stigma associated with Alzheimer’s and other forms of dementia than with heart disease, diabetes, or any other disease. As with other diseases, those causing cognitive impairment are no respecter of persons’ class, education, race, prestige, or reputation.
All of us can contribute immeasurably to diminishing the suffering of those with Alzheimer’s and other forms of dementia. We can help remove the stigma!
Whatever our infirmities or frailties, we are ALL beloved children of God with inherent worth and dignity, and worthy of respect, relationships, and belonging.