For those with Alzheimer’s disease, one of the keys to living a better life is to reduce the public stigma around the condition. While the stereotype stems from associations with the most severe stages, many people with Alzheimer’s live independent, active lives, University of Pennsylvania psychologist Shana Stites said in an American Society on Aging webinar May 6.
Currently, 5.8 million Americans are living with Alzheimer’s, and by 2050, that number is projected to increase to nearly 14 million, according to the Alzheimer’s Association.
“This stigma arises due to stereotypes and misinformation,” said Stites, who studies quality of life issues at the Penn Project for Precision Medicine for the Brain and the Penn Memory Center, part of the University of Pennsylvania Health System. “A person with an Alzheimer’s diagnosis is expected to get worse and the stigma reflects that.”
“People see the diagnosis as a death sentence. People make assumptions and see you as incapable,” said Cynthia Huling Hummel, a pastor who was diagnosed with Alzheimer’s in 2016 and serves on the U.S. Department of Health and Human Services National Advisory Council on Alzheimer’s Research, Care and Service. “Some people will even speak to me more loudly. I’m not deaf.”
Hummel said the stigma could make people with the disease feel lonely — and it also could make it difficult to move past the fear of the diagnosis to live a good life as long as possible.
Stites broke down the issue into three categories: internalized stigma, which creates a negative personal perspective on one’s feelings, judgments or self-expectations; public stigma, which causes social distance and adverse reactions directed toward others; and spillover stigma, where caregivers are judged based on their relation to someone with Alzheimer’s.
Those stigmas lead to harsh consequences, Stites said. Furthermore, they can discourage a person from seeking diagnosis, hinder a patient’s quality of life, discourage participation in Alzheimer’s research and inhibit members of the public from adequately educating themselves.
To combat this, Stites and Hummel noted that making our communication with people living with the condition more person-centered could play a big part in destigmatizing Alzheimer’s and improving quality of life.
“[Person-centered communication] recognizes the impact of language on thoughts and actions to ensure it does not diminish the uniqueness and intrinsic value of each person and allow a full range of thoughts, feeling and experiences,” Stites said.
People should actively be using words that respect the individual and focus on language that personalizes and validates experiences, fosters dignity and helps individuals access self-care.
Using this kind of language can empower those with Alzheimer’s, the speakers noted, giving them more confidence to be open about their life and educate others — both of which can help combat stigma and foster a more informed public.
“Person-centered language moves the focus away from deficits and toward strengths and resources of a person,” Stites said.