By Oran Aviv
Being diagnosed with dementia is difficult enough, but sadly many people who are living with dementia must also endure the stigma and discrimination associated with memory loss.
By learning about how people live with dementia and understanding that we as a community can support them, we can change the stigma associated with memory loss and allow more people to live independent lives longer.
What Do You Think of When You Hear “Dementia”
Recently a local TV journalist, Moshe Nussbaum, gave an interview about being diagnosed with ALS. He explained that the only symptom he has is a speech difficulty that makes him speak slowly.
He is still working on the air, feels fine and is living in the present, but when his family and friends heard the diagnosis, they saw the bleak future and as Nussbaum put it, “They were already eulogizing me.”
What upset Nussbaum the most was not his diagnosis of ALS, but the reaction of his family, especially that of his wife. He felt sorry for the pain he was causing them! This situation reminded me so much of what happens to someone who is diagnosed with dementia. Family and friends already see the end stages of this condition, rather than understand that a person diagnosed with dementia can live very well for many years despite having some memory difficulties.
Wendy Mitchell was diagnosed 8 years ago with dementia. Since her diagnosis, she became a speaker, a daily blogger, and an author of 2 books about living with dementia.
Wendy says she often has to explain to people who are surprised that she is living so independently with dementia, that there is also a beginning stage of this condition not just the end one that must people know about.
It is our responsibility to learn more about what it is like living with dementia so we can understand and support those members of our communities who have memory loss.
When we don’t understand dementia, we are more likely to continue the stigma that surrounds memory loss.
The Stigma of Dementia
When we don’t understand what it is like to live with dementia, there is more chance, that unintentionally we may stigmatize and discriminate against those who have dementia.
We may also generalize and assume that all people living with dementia are the same, and our understanding may be based on the descriptions and depictions we see in the media.
To give you an idea of the stigma associated with dementia, I want to share an experiment by someone who is living with Lewy Body Dementia.
Lewy Body Dementia (LBD) is the 2nd most common type of progressive dementia after Alzheimer's. It is part of the umbrella term Lewy Body Disease which also includes Parkinson’s Disease. You can learn more about LBD in my blog, The Wrong Parkinson’s Diagnosis.
The woman decided to test if people react differently if she says she has Lewy Body Dementia or the Umbrella term, Lewy Body Disease. (Her story is shared with her permission.)
Yesterday I had a couple of appointments at the local hospital. I decided to see what the difference was. I was actually able to go on my own. Able to answer questions & do paperwork. It has been a very long time since I have been able to do this.
First appointment I used Lewy Body Disease. Nurse was very understanding, and we had a great Q & A.
The second appointment, I told the tech I had Lewy Body Dementia. She immediately started speaking slowly & loudly. 😆 Then she became concerned that I was there alone & wanted to call my husband to make sure I was alright being there alone. 😅
I was the same person of sound mind for both appointments
Even if done without intent, stigma and discrimination can cause someone living with dementia to feel incompetent and unworthy. This is especially true when this lack of understanding is found in the medical community, as we see in this above example.
We all need to check ourselves to see if we aren’t making assumptions and generalizations about someone who is living with dementia. Learn to look at the person and not the condition.
Flipping Stigma on its Ear
This week I was introduced to this wonderful action group in Canada called Flipping Stigma on its Ear. It was created by people who are living with dementia.
They prepared a site with a toolkit with the goal to help others who have been diagnosed with dementia and to educate he people who support them as well as those who are doing research.
From their site:
A diagnosis of dementia can increase a person’s sense of vulnerability. Not only are people faced with challenging cognitive changes but too often many also face needless stigma and discrimination that can make the experience worse.
In their tool kit there are tips for doctors and other health care providers, for people living with dementia and for those who support them.
There are examples to allow you to check if you may have unknowingly made people with dementia feel incapable. The toolkit also includes short clips where people living with dementia explain how they have felt excluded, incapable, and experienced someone being judgmental towards them and more. One woman living with dementia says she always must bite her tongue when someone says
“You don’t look like you have dementia.”
Her answer to this statement now is:
“What does dementia look like? Had I known, I would have changed my hairstyle.”
This conversation is now seen as an advertising in buses in Canada to bring attention to the stigma of dementia!
Please take a few minutes to go through the site. You may be surprised by how little you know about people living with dementia and by understanding, you may be able to one day protect someone from the stigma associated with dementia.
Dementia Friendly Language
In 1963 Howard Becker was the first to present a theory about the negative effects of labels on people. According to Simply Psychology:
Labeling theory is an approach in the sociology of deviance that focuses on the ways in which the agents of social control attach stigmatizing stereotypes to groups, and the ways in which the stigmatized change their behavior once labeled.
Most of us are familiar with how damaging labels can be for children. If a parent or teacher labels a child negatively, it will affect not only how the child views him/herself, but also the way others relate to them. Labels can limit a child’s potential.
The negative affects of labeling are also true for adults and especially those who are living with dementia.
When I write or teach, I always try to think of the person who is living with dementia, to check if they will feel comfortable with what I am writing or saying.
Choose your words carefully and refrain from unfriendly terms, even if they have been used often until now. At the Alzheimer’s Disease International Conference (ADI2022) all the presenters were given this list to make sure our abstracts and presentations would only use dementia friendly terms:
Dementia/a form or type of dementia/symptoms of dementia –
NOT – Dementing illness, Demented, Affliction, Senile dementia, Senility
Condition –
NOT - Disease, Illness
Younger onset dementia –
NOT - Early onset dementia when referring to someone under the age of 65
Person living with dementia, diagnosed with dementia –
NOT – Sufferer, Suffering, Sufferers, Demented sufferers, Vacant dement, Victim, Demented person, Patient, Subject, Case
Family member/s or person supporting someone living with dementia, Wife/husband, child, friend –
SUGGESTED - Care partner
Disabling, challenging, life changing, stressful –
NOT - Hopeless, Unbearable, Impossible, Tragic, Devastating, Painful, Distressing, Fading Away, Empty shell, Not all there, Disappearing, Stealing them away (they are always still there), The longest goodbye
Impact/effect of supporting someone with dementia –
NOT - Carer burden, Burden of caring
BPSD, changed behavior, challenging or difficult communication –
NOT – aggressive, wanderer, poor feeder, wetter or incontinent, obstructive, non–communicator, attention-seekers, non-communicators, obstructive, etc.
A Dementia Friendly World
Last month I visited a Street Food Market and was so happy to see the Vegan Friendly sign on several places. It made it so easy for me to know where to check the menu rather than ask in each shop and possibly receive rude answers that would make me feel uncomfortable.
Similarly, people who have memory loss might be scared or embarrassed to go into a shop or restaurant on their own, but what if certain places that were dementia friendly were recognizable with a sign.
Imagine a world where someone who had memory loss could get on a bus, go to a shop, and buy what they need and return home on their own. Seems impossible?
First there are many people who are living with dementia and are able to function totally independently. It may take more preparation and time then before they had dementia, but they can be totally independent.
Sometimes however, someone may get confused or may have a day where they suddenly have brain fog. It is in these situations that we as a community can help.
Imagine a dementia friendly town where each bus driver has been trained to recognize if someone is confused and knows to ask them where they need to go and make sure they get off at the right stop.
What if the shop staff have been trained to help and even set up the store to make it is easier to find the products? The staff and other customers have patience if it takes a bit longer for someone with dementia to get through the check out.
If this is a dementia friendly town, if a person feels confused or lost, they know they can go into the shop that has a sign and someone will smile and ask how they can help.
It only takes some training and the wiliness to allow people who are living with dementia to be remain independent.
I would love to start a dementia friendly community where I live in Kfar Saba. Please let me know if you are interested too. Together we can make a change.
In summary
Take the time to read and learn about how people with dementia are living independent and fulfilling lives
Stigma and discrimination can cause someone living with dementia to feel incompetent and unworthy
Take a few minutes to look over the Flipping Stigma Tool Kit
Learn to use dementia friendly language to prevent negative labeling
Learn how you can help those in your community who are living with dementia
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