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The Fear, Stigma and Shame of Alzheimer's Disease

Posted Dec 05 2010 1:17pm
By Angil Tarach-Ritchey
Alzheimer's Reading Room


November 16th was National Memory Screening Day through the Alzheimer's Foundation of America. Thousands of participants all over the country partnered with the AFA to offer screenings, educational Programs, and support for individuals concerned or dealing with memory loss.

For the first time my Visiting Angels office offered the Memory Screening, even though we have partnered with the AFA for a few years now. The AFA provided us with lots of educational materials, and resources to make available to participants.

Besides what AFA provided, we also offered 2 presentations on Communicating with Someone with Alzheimer's, which is necessary in reducing stress, frustration, and even anger when providing care. We purchased lots of beverages, a variety of fruit, pastries, cookies, and snacks for the event, and spent a lot of time preparing, and promoting the event.

The day ended with us all very disappointed because no one showed up. Not one person came to receive a memory screening, view the presentation, or to get educational materials, ask questions or receive support.

With the Memory Screening being a national event, and only one other place in my community offering it, and that being a department store pharmacy, I was left wondering how it could've turned out so poorly?

A nurse friend of mine who owns a Visiting Angels office just over an hour away also offered the Memory Screen that day. She also did not have one participant. In a way I was relieved that it wasn't my lack of preparation that resulted in zero participants. But it did cause me to wonder why, and wonder how many other sites across the nation had the same experience?

The AFA quickly follows up to inquire about how the event went and the turnout. Their goal is to help individuals get diagnosed earlier so medical interventions have a better chance of at least delaying progression, and to educate on Alzheimer's Disease, so the public and families are better prepared to handle and accept the truth of Alzheimer's and all that comes with that diagnosis.

The intentions of the National Memory Screening Day would be highly beneficial to those concerned with, or dealing with memory loss or Alzheimer's. Many still don't know there are other causes of dementia, and some of those are reversible. Reducing ignorance can only be beneficial for everyone in our society. So needless to say, there wasn't much I could contribute with a survey.

So the question I ask myself is why?

I understand the denial and fear of memory loss, so I have concluded that people just don't want to know. Many probably want to keep memory loss concerns private. The screenings would have been privately done in my office behind closed doors, and results would have been kept between the participant and myself. Maybe, being seen going into a place for a memory screening is a deterent. The fear, stigma, and embarrassment those with memory loss feel is really sad to me.

There would never be that kind of fear in a health screening that included blood pressure checks, blood sugar checks, or other assessments of physical health issues. The fear and stigma of mental health diseases is so sadly true. Why do we not look at mental health diseases as physical diseases of the brain, not unlike diabetes is a disease of the pancreas, or lupus is a disease of the immune system. Why is the thought process about brain diseases so obviously different?

Patients can do a lot of things to prevent diabetes, but there are no concrete answers to preventing Alzheimer's, Schizophrenia, or clinical depression. These are diseases that can affect anyone without provocation. They affect young and old, every race, educational level, socio-economic level, and gender. It could affect you, me, and anyone we love and care for, yet we fear it, we don't want to be around it, we don't want to talk about it, and if it strikes us, we want to hide and withdraw in shame, fear, and embarrassment. Somehow, some way, we need to change our thoughts about brain diseases and the people affected.

Even the term mental health needs to be changed, because as long as I've known, and through today, just the term "mental health" con jours up fear and stigma. I wonder if our thought patterns would change calling illnesses of the brain, " brain disease ", rather than " mental illness "? Ask yourself if that makes a difference in your thought patterns, and if it does, change your own language. Because the perception and stigma has come from a very long history of ignorance, it will take a change in us all to remove the fear, stigma, and shame associated with brain diseases.

I am still wondering why no one came to the educational presentations we offered, when that part of the event was geared towards family caregivers of those already diagnosed? Was it part of keeping their loved ones illness private? Was it because they didn't want to be in a room with the reminders of Alzheimer's Disease? Was it because family caregivers thought it was nothing new, that they've already heard it all before? I guess I'll never know.

I have decided not to offer the Memory Screening again, as a formal event. I will continue to educate, advocate, and support people and families affected by Alzheimer's Disease and other dementia's, as well as care provider's. I will refer those undiagnosed or those who have concerns of memory loss to specialists who can appropriately diagnose, but I can't change the fear, stigma, and embarrassment that is so prevalent. I just wish I could.



Angil Tarach-Ritchey (RN GCM) has over 30 years of experience, and is a nationally known expert in senior care and advocacy. Angil is also the owner of Visiting Angels in Ann Arbor, Michigan.


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Original content Angil Tarach-Ritchey, the Alzheimer's Reading Room


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