Stigma associated with Alzheimer’s disease is an obstacle for individuals seeking information about their risk of developing Alzheimer’s and wanting to participate in clinical studies, according to the results of a national survey about beliefs, attitudes and expectations most often associated with the disease.
Published in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, the study of 317 adults found over half of the respondents (55 percent) expect a person with mild cognitive impairment (MCI) or dementia due to Alzheimer’s to be discriminated against by employers and to be excluded from medical decision-making. Almost half expect the person’s health insurance would be limited due to data in the medical record (47 percent), a brain imaging result (46 percent) or genetic test result (45 percent).
Those numbers increased when survey participants were informed that the condition of a fictional person with Alzheimer’s would worsen over time – which is the case since Alzheimer’s is the only leading disease without a prevention, treatment or cure.
In addition, the study authors found that when told the fictional person’s prognosis would improve over time, 24 percent to 41 percent fewer respondents expected that the person would encounter discrimination or exclusion. This suggests to researchers that advances in therapies that improve the prognosis of Alzheimer’s likely would help reduce stigma.
“We found that concerns about discrimination and overly harsh judgments about the severity of symptoms were most prevalent,” said Shana Stites, Psy.D., from the Perelman School of Medicine, University of Pennsylvania. “By understanding what the biggest concerns are about the disease, we can help develop programs and policies to reduce the stigma about Alzheimer’s disease.”
The study participants were asked to react to a fictional description of a person with mild stage Alzheimer’s disease dementia. The study asked respondents to read a vignette and then complete the survey. Three different scenarios were presented: that the person’s condition would worsen, improve or remain unchanged.
The study findings suggest respondents continue to have concerns about documentation in the medical record or test results, despite the fact that there are some protections in place against gene-based health care insurance discrimination through the Genetic Information Nondiscrimination Act of 2008 (GINA).
“The unfortunate stigma associated with Alzheimer’s may prevent people from getting the diagnosis they need or the opportunity for early intervention that could improve their quality of life,” said Maria C. Carrillo, Ph.D., Chief Science Officer, Alzheimer’s Association. “We need to reduce the stigma to encourage persons with mild or even no symptoms of Alzheimer’s disease to enroll in prevention trials to find effective treatments.”
Dr. Carrillo stressed the importance of early diagnosis for people with Alzheimer’s disease and related dementias and their families to provide more time to plan for the future by participating in decisions about treatments, living options, financial and legal matters, as well as building a care team to making it easier to manage the disease.
The benefits of a diagnosis – and going public
For Colorado Springs resident Joanna Fix, the stigma of Alzheimer’s disease was not a factor in her decisions. In fact, public acknowledgement of her Alzheimer’s, starting with the official diagnosis, was a positive change in her life.
“When you don’t know what you’re dealing with, it’s like you’re sitting at a red light forever,” she said. “The worst thing that can happen (for a person living with Alzheimer’s) is not knowing. You have to keep going until you get an answer. Life is better when you know what you’re facing.”
Joanna’s diagnosis also helped address issues within her own family. Without an understanding of the underlying medical issues, family members questioned why the accomplished college professor and dean would miss appointments, forget information and lose enthusiasm for life.
“Various theories were put forth, ranging from depression to a brain tumor, a parasite or Multiple Sclerosis,” she said. The uncertainty played havoc with Joanna’s family relationships. Her diagnosis several years ago – after years of examinations starting at age 41 – has enabled the now-49-year-old to work with her husband, Forrest, and better plan their lives.
The benefits of going public
For Lafayette resident and business executive Rick Edmondson, the diagnosis came much quicker. At age 57, he was startled by what he saw as the first symptom of something serious – getting completely lost on his familiar drive home. Within mere months, Rick and his wife, Traci, received the dreaded news of his Alzheimer’s diagnosis.
It took several more months for the couple to come to terms with Rick’s diagnosis, but one day Rick had an epiphany.
“Traci,” he said, “this is our destiny.” And from that day forward, his approach to the disease and outlook on life changed.
Rick tackles every day as a challenge. After reaching out to share his diagnosis with all of their family and friends, including Rick’s international network through the time he spent with the Up With People performing group, the couple has become active volunteers for the Alzheimer’s Association. Together, they serve as resources for a class titled “Dementia Conversations,” and Rick has served as a resource for classes, events and programs for people with a diagnosis.
In addition, Rick and Traci formed a team for the 2017 Boulder Walk to End Alzheimer’s, and emerged as the leading fundraising team for the year in Boulder, True Grit, engaging 35 of their friends and family members to raise a Walk-leading $9,520, which they aim to top in 2018.
What to do after the diagnosis
For many people, like Joanna Fix and Rick Edmondson, receiving an Alzheimer’s diagnosis is not the last step – it’s the first. One important step is participating in research to find a treatment or cure. The Alzheimer’s Association is the world’s largest nonprofit funder of Alzheimer’s disease research. Currently, the Association is investing more than $110 million in nearly 400 best-of-field active projects in 19 countries.
A challenge of supporting that many research projects is finding enough willing participants – in part because of the stigma that comes with the disease. The Alzheimer’s Association TrialMatch® program is a free, easy-to-use clinical studies matching service that connects individuals with Alzheimer’s, caregivers, healthy volunteers and physicians with current studies. People fitting all of those descriptions are needed to participate in any of more than 260 promising clinical studies being conducted at more than 700 trial sites across the country.
The Alzheimer’s stigma study was supported by grants from the Alzheimer’s Association, the Penn Neurodegenerative Disease Ethics and Policy Program and the Healthy Brain Research Center; and supported in part by a grant from the National Institute on Aging, and cooperative agreements from the Centers for Disease Control and Prevention, Prevention Research Centers Program.