After Joanne moved her 83-year-old mother into her home, she was delighted her friends embraced the two of them as part of their close social circle. Over the next few years, however, as Mom's memory and language skills got steadily worse, those friends began to drift away. Joanne found she and her mother received fewer invitations to join the group for Friday night dinners or holiday get-togethers. When she'd call the friends, they'd be unfailingly friendly, inquire about Mom's health and then waffle about making plans. Joanne eventually concluded they were avoiding her — because of cruel stigma toward dementia.
Stigma is defined as a “mark of shame.” When we stigmatize people, we engage in discrimination against them because of their backgrounds, attributes or circumstances, such as dire medical illnesses. By steering clear of people with stigmatized diseases, such as AIDS, schizophrenia and even cancer, it's as if we are trying to protect ourselves from “catching” their conditions. The same type of stigmatization has occurred with dementia as our society ages and more Americans experience severe cognitive decline.
We want to be supportive of these unfortunate folks — many of whom are our neighbors, colleagues and acquaintances — but are fearful we may one day suffer their scourge. We therefore draw back, often subconsciously, to avoid being reminded of that threat. In the process, we hurt people with dementia — already victimized by an unrelenting disease — and their grieving family caregivers.
Joanne felt more than hurt; she was furious. It seemed despicable to her that “friends” were rejecting Mom and pushing her away, too. In the past, she'd stood with these same companions through their crises, but they were slinking away from hers. At a dementia caregivers support group, she'd heard other caregivers complain about similar betrayals but didn't think it could happen to her. Now it had. She swore to herself she'd never forgive those fickle people.