A sure sign that there is a stigma associated with Alzheimer’s disease is people’s hesitancy to talk about it, acknowledge its signs and symptoms, and their minimization of the cognitive issues. As a practicing neurologist who sees patients in the office setting and in their homes, I often hear the comment “She has a little bit of memory issues, but nothing really bad.” As a dementia specialist, I consider this a potential red flag. Further questioning frequently leads me to think that we have a dementing illness occurring.
The hesitancy to discuss and acknowledge the issues associated with Alzheimer’s disease amplifies in persons under the age of 65 who have Early Onset Alzheimer’s Disease (EOAD). In a survey conducted by Alzheimer’s Disease International, 28% of respondents said that they feel discounted since disclosing their diagnosis and 24% said that others lacked understanding. Many lose their jobs, and their friends.
In these cases, not only does the person “not look like” a typical older adult with Alzheimer’s Disease, the complaints are often brushed off as a result of having too much stress, emotional issues, and of course, hormonal imbalances. Hormones (peri and post-menopausal symptoms) in women, are often dealt with initially, and all types of complaints are attributed to them. However, the memory concerns, lack of concentration and word finding issues often associated with EOAD are not adequately addressed.
Many healthcare providers are hesitant to consider EOAD in young persons because of the branding or stigma it would induce among the patients’ friends, families and social networks. Three factors influence its stigma and lend this disease to go under-recognized in the healthcare community:
- – Its occurrence at a younger age (compared to the typical diagnosis over 65 years)
- – There is no cure
- – No medication has demonstrated a persistent cognitive beneficial effect over a long period of time.
Of course the other issue that has to be talked about when there is a high stigma factor is the professional service rendered by the physician. I call this the Now What? moment:
- Now what are we going to do?
- Now what action plans or treatment plans are we going to suggest and order?
This is crucial when dealing with diseases like Alzheimer’s disease, be it late or early onset.
The lack of having a Now What plan actually increases the stigma for this disease, as it implies that no one really knows what to do. And yet, we DO, know what to do! Healthcare providers can:
- – Discuss what areas are of the greatest importance to families: social support, in-home services, treatments to maintain functioning at work for as long as possible.
- – Recommend, write a prescription for, and assist in obtaining these services.
- – Discuss medications that we consider using; outline why we are recommending them; and explain what we hope they will do regarding symptom management.
- – Encourage participation in clinical trials. Clinical trial participation helps patients and families feel engaged; lends social and educational support to the individual; and progresses research to better understand and eventually cure the disease.
- – Actively encourage involvement with other groups of other people who have the disease and discuss how these interactions can be supportive.
In order to reduce stigma with this disease, we need to think about the Now What. Anything short of this will not alleviate the prevalence of negative perceptions, isolation and sense of low self-worth and ability so many people with Alzheimer’s disease, young and old, experience.
So my question is: What is your Now What?
 Batsch NL, Mittelman MS. World Alzheimer Report 2012: Overcoming the stigma of dementia. (2012.) Alzheimer’s Disease International.
Neelum T. Aggarwal, MD, is a population health neurologist and clinical researcher specializing in longevity and aging with Rush University Medical Center in Chicago, and she is co-leader of the Rush Alzheimer’s Disease Center Clinical Core. She obtained her medical degree from the Rosalind Franklin University Chicago Medical School, completed her neurology residency at Henry Ford Hospital in Detroit, Michigan, and completed an aging and neurodegenerative disorders fellowship at the Rush Alzheimer’s Disease Center.
Dr. Aggarwal was a panelist discussing the roles of art therapy in the lives of persons with Alzheimer’s disease at the Bringing Art to Life digital exhibit at the National Museum of Medicine in Chicago. Questions about using art therapy as an aid to decrease the sense of social isolation, feelings of disconnection from loved ones, and a lack of empathy associated with the disease got her thinking about attitudes associated with Alzheimer’s disease, and were the inspiration behind this article.
Dr. Aggarwal is the first chief diversity officer for the American Medical Women’s Association – the oldest women’s physician medical organization in the United States – and is responsible for defining national diversity and inclusion objectives, enhancing the diversity of AMWA’s leadership team, and leading AMWA’s Diversity and Inclusion Section and resource groups. She previously served two terms on the AMWA Board of Directors, and actively advanced inclusion initiatives in her role as co-chair of the Mentoring Task Force.