b'ing stigma-free

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.

DenialAlz talk boxes 2

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.[1] 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.

Now What?

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?

 

[1] Batsch NL, Mittelman MS.  World Alzheimer Report 2012: Overcoming the stigma of dementia. (2012.) Alzheimer’s Disease International.

 

Aggarwal_NeelumNeelum 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.


B Stigma-Free high school intern Andrew Burbank and his aide, Joe Ferraro, interviewed country music star Rachel Potter about her bold new song, Jesus and Jezebel and gay rights. Andrew provides the introduction, and Joe follows up about b’ing stigma-free.RachelPotter

Introduction

Singer-songwriter Rachel Potter is off to a remarkable career! She has worked as a waitress at Hooters, in retail at the Gap, and she performed at Disney World and on Broadway. Now, she is a star country music artist and actor.

Rachel wrote her first song when she was just 12 years old; it was an emotional time for her, coping with her mother’s diabetes diagnosis. She said that her minister set her first song to music and helped her get a Christian record deal – initially all of her songs were about God. She competed on the TV show The X Factor, and came in 11th place. During the show she covered many eclectic artists from The Isley Brothers and Queen to Beyoncé.

b’ing Stigma-Free

Rachel Potter is Christian, a little bit country, and unafraid to mix traditional Nashville sounds with the squall of marriage equality.

“I don’t see Jesus and Jezebel as a challenge to the church,” said Potter of her single, an affirming ballad written on a friend who came out as gay. Potter released the song to openly declare her support for same-sex marriage, as well as disagree with the Christian church’s official stance on homosexuality. The video for Jesus and Jezebel features Potter – who refers to herself as a Jezebel in the song – alongside positive Christian images. At one point the music video shows a cardboard cutout of a same-sex couple visiting a church.

”I was told my whole life that gays would be going to hell, but I refuse to believe that people I love so much would have that fate,” said Potter. “If Jesus is who he says he is in the Bible, and if Jesus is the person everyone else says he is, then there really should be no issue here.”

Though Potter said she grew up in the Baptist religion, even attending preschool at her local church, working in theatre and the music industry has brought her into close contact with the LGBTQ community. To her, supporting marriage equality and fighting the stigma around it is a common sense decision.

While Potter thinks the stigma surrounding gay equality should be a non-issue, her fans don’t always agree with her.

“There used to be outright brawls on my Facebook page whenever I posted something on gay equality,” said Potter. “Someone said I was pushing the gay agenda once. I don’t even know what gay agenda means.”

Potter thinks the message of Jesus is clouded by dogma.

“If Jesus ran the Church, it’d be run like a hospital,” said Potter. “Church shouldn’t be like a group of privileged white people getting together to congratulate each other on being awesome, it’s a place where people who are hurting and are lost should come to find healing.”

Beyond gay equality, Potter is passionate about disability rights and the fight against transphobia. Potter cautions people in assuming that everyone in the trans community has received as much love and support as Caitlyn Jenner has. Acceptance is still out of reach for many, and one of her friends, a trans woman of color, died of an aneurism several years ago as a result of unsafe hormones bought on the black market.

”Not all transgender people are wealthy, former Olympians,” said Potter.

Potter, whose mother was a special education teacher, hopes to write songs in support of other marginalized groups in the future.

“The greatest stories ever told are of the underdog,” Potter concludes.

 

Andrew and Bakithi KumaloAndrew Burbank is a 19-year-old senior at Fairfield Ludlowe High School, in Fairfield, Connecticut. Andrew has a special interest in music, and enjoys a wide variety of musical genres. During his high school internship with B Stigma-Free he applied his talent with tunes to help the organization’s musical messaging. Andrew has cerebral palsy, a condition involving brain development and muscle coordination. He works hard and has a positive attitude, and he does not let his disability get in his way. After graduating he will begin post-secondary education, pursuing life skills and job training.

Joe FerraroIn addition to being a special education aide at Fairfield Ludlowe High School, Joe Ferraro is a freelance music reporter for the New Haven Register. Joe’s interests include LGBTQ activism, poetry, and music. Joe says that the latter takes up far too much of his time; he plays bass in a NYC-based post-punk band and loves dragging his eyes over minutiae like liner notes. Not one to limit himself to a single element of geek culture, Joe regularly binges on obscure film, anime, and video games when the guitar isn’t calling his name.


As I began to think about writing a piece on the issue of stigma as it relates to Alzheimer’s disease, it occurred to me: I needed to clean the refrigerator. Immediately. Then there was that bed-making chore, complete a household search for any kind of candy (fail), and a need to write a long overdue thank you note.

RefrigeratorI believe that everything that we encounter and how we react to perceived events molds us into what we are, and thus how we think and behave. That being said, it appears that I avoided writing on the topic of stigma to the point of doing unpleasant, alternative activities instead. Why is this?

I personally fight against the stigma assigned to people with dementia. My label, dementia-of-the-Alzheimer’s-type – atypical, affords me many opportunities to be bombarded with statements that make me feel badly on a daily basis. A few of these include:

“You’re too young to have Alzheimer’s.”

“You look fine.”

“How do you know you have it? I forget my keys all the time. Maybe I have it?”

“My grandfather had Alzheimer’s but it was okay, he was old and he didn’t know what was going on anyway.”

“You better go see a lawyer, NOW.”

And my personal favorite, “You are too smart to have Alzheimer’s.”

Sometimes the stigma is not spoken – at least not to me. Many people assume that I can no longer function at any reasonable level. I have been uninvited to meetings, parties, gatherings, lunch dates and celebrations. I have become a damaged, unqualified, pitiful person in others’ eyes. The most painful thing for me is that often the people treating me as less than a person are my friends and relatives who don’t intend to hurt me. Never mind the public — their views can be rationalized, as they don’t know me. My friends, however, do.

Similar Experiences

Most of us experience at least one or more times when we feel stigmatized. To feel marginalized, isolated, ostracized is a sure sign that some sort of stigma has been assigned.

When I was a child I was fat. Best way to say it is simple and to the point. I believe that anyone who was a fat child understands the stigma and life altering changes that take place when a child in their formative years experiences out-and-out rejection and abuse. It changes who we are.

Many times in our society, forms of stigma are rationalized by blaming the victim. “Lose weight and they won’t call you fat.” Or, “Cancer diagnosis? Oh, did she smoke?”

And so it goes, blaming the “victim.” The personal behavior of the person applying the stigma is not up for scrutiny. Blaming the victim becomes very neat, orderly, and very self-congratulatory for the stigmatizer. “They deserve what they got and I don’t because I didn’t do X. I’m okay, you’re not okay. Bummer for you.”

Oh, and I’m still fat.  Can’t catch a break. Bummer for me.

Alzheimer’s is a dreadful disease that has no treatment or cure. It is fatal and slowly robs the person of their personal skills, needed to master life’s challenges.  When we are stigmatized, our capabilities are reduced prematurely into the end stage of the disease — while we are still very able to live life to the fullest. This is how stigma feels to us. Not feeling like a whole, intact human being is a daily – no hourly – fight we fight, in addition to the disease process happening to our brains.

Talk about unfair. Really? Treat the person with the fatal disease poorly so we don’t feel vulnerable to the affliction.

I have found new joy and purpose in my life. That is not to say this was my choice. I’ve tried to make lemonade out of lemons, as they say. We cannot always choose how we will evolve in this life. My lemonade is still quite bitter most days.

My question is this: If people are to have differences, as they will because they are people, then why stigmatize all of our differences? What a complete waste of time.

While learned people strive for cures for many human ailments, some successes have been gained. It seems to me that the common denominator for all of these afflictions is the clear, ritualistic use of stigmatizing the very people that we aim to treat or cure.

Maybe we should all place our personal stigmas we are assigned to deal with into a really big bucket. We could all pull out random, new stigma labels for ourselves. Maybe then we could begin to understand how utterly stupid and arbitrary our stigma assignments are. We could use our efforts in so many more productive ways then to divide and categorize. People of course must determine for themselves where to begin to cleanse themselves of this.

I will start with cleaning my refrigerator.  

 

ShivesAmy Shives was diagnosed with younger-onset Alzheimer’s disease in 2011.

After graduating from Western Washington University in 1979 with a bachelor of arts degree in psychology, Amy went on to receive a master’s in education with a concentration in student personnel administration. For over 25 years, she was a faculty member at Spokane Community College where she worked as a counselor.

After receiving the diagnosis, Amy left her career as a college counselor and became an Alzheimer’s advocate. She currently serves on the Chapter Board of the Alzheimer’s Association Inland Northwest Chapter, is a member of the Alzheimer’s Association’s National Early-Stage Advisory Group, an Alzheimer’s Ambassador to U.S. Representative Cathy McMorris Rogers from Washington State, and a Walk to End Alzheimer’s® committee member and team captain. She is an active participant on the Washington State Policy Committee and has participated in numerous local media and speaking engagements. Amy is currently a participant in several clinical studies through the University of California, San Francisco Memory and Aging Center. The studies include genetic and behavioral studies, as well as longitudinal studies that observe people over time. As a clinical study participant, Amy plans to donate her brain upon death.

Amy lives is Spokane, Washington with her spouse. Together they have two daughters.


 

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