” Dealing with early stage Alzheimer’s, I’ve found the hardest part is the stigma that comes with it. Friends don’t come around as often. Is this true?????,” wrote a friend.
“Don’t tell anybody! I don’t want anyone to know,” pleaded Linda when in 2009 we received word that she has Frontotemperal Dementia (FTD).
“They’ll treat me differently. They will think I’m crazy,” she added.
Studies indicate that people fear dementia more than they fear cancer, and even death itself.
When asked what they fear the most, the answers vary: loss of control, loss of identity, “being a burden,” not remembering family, being treated differently, what other people will think.
A societal problem undergirds those fears, and it’s the stigma associated with the disease. Our hyper-cognitive, capacity-reliant society diminishes the personhood and worth of people with cognitive impairments.
Even the word “dementia” contributes to the stigma. It literally means “loss of mind” and the dictionary lists the following among the synonyms: ”madness,” “insanity,” “derangement,” ”lunacy.”
Dementia is an umbrella term that covers multiple diseases that affect cognitive functioning, with Alzheimer’s disease comprising between sixty to eighty percent. Indeed, changes in the brain contribute to the diseases.
But dementia is more than a brain disease. Dementia is a social-relational disease; and the stigma society attributes to people with cognitive impairment contributes to its destructive consequences.
Stigmatizing people with Alzheimer’s and other forms of dementia may be more damaging than the pathology at work in the brain. Stigma contributes to isolation and diminished sense of self-worth.
There should be no more stigma associated with Alzheimer’s and other forms of dementia than with heart disease, diabetes, or any other disease. As with other diseases, those causing cognitive impairment are no respecter of persons’ class, education, race, prestige, or reputation.
All of us can contribute immeasurably to diminishing the suffering of those with Alzheimer’s and other forms of dementia. We can help remove the stigma!
Whatever our infirmities or frailties, we are ALL beloved children of God with inherent worth and dignity, and worthy of respect, relationships, and belonging.
Shifting Margins 
I thought this blog might be of interest to you. Ken Carder is a close friend and colleague in ministry and a retired United Methodist bishop. His wife Linda has Frontotemporal Dementia and his blogs often deal with dementia. He lives in a Lutheran retirement in SC and serves as Chaplain in the Memory Care Unit there. He also teaches a course in dementia and pastoral care to students at the nearby Lutheran seminary and has been doing workshops on the same subject for pastors and churches.Â
I promise not to send too much material and if I do, please feel free to tell me – or simply delete.  Bill a.k.a. Old Turtle     Icount it as a certainty that in paradise, everyone naps. ~TomHodgkinson
From: Shifting Margins To: wcmooney@att.net Sent: Friday, September 7, 2018 6:12 AM Subject: [New post] Letâs Remove Stigma from Dementia #yiv8868481653 a:hover {color:red;}#yiv8868481653 a {text-decoration:none;color:#0088cc;}#yiv8868481653 a.yiv8868481653primaryactionlink:link, #yiv8868481653 a.yiv8868481653primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv8868481653 a.yiv8868481653primaryactionlink:hover, #yiv8868481653 a.yiv8868481653primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv8868481653 WordPress.com | kennethcarder posted: “Â ” Dealing with early stage Alzheimer’s, I’ve found the hardest part is the stigma that comes with it. Friends don’t come around as often. Is this true?????,” wrote a friend.”Don’t tell anybody! I don’t want anyone to know,” pleaded Linda when in 2009 we” | |
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I have long thought that the diagnosis and use of the word “dementia” is wrong. It is demeaning. It does not reflect what is going on. Dementia has long had the connotation of craziness, emotional illness, even evil. I can’t imagine why doctors and researchers came up with this ridiculous umbrella for all the kinds of brain problems. Surely they can find a better umbrella.
I will never forget the pain of seeing the word “Dementia” as the cause of death for my mother. She was not demented; she did not have Alzheimer’s; she did not have any diagnosis at all. She was clearly losing some abilities, but not to that point.
I deeply resent the use of that word for all our people who are suffering and their families.
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I agree and hope we can find alternative words. Many of the medical terms are rather complicated and technical but it is encouraging that some neuro-scientists are trying to find alternative language.
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I’ve found that stigma is less about the person with the illness and more about the fear within those who encounter dementia in others: fear of not knowing what to say or how to interact, fear that that’s what I will be like, fear of being expected to take care of someone who has a form of dementia and what others will think if you don’t, fear of being embarrassed by the actions of the one who is ill because we think they are embarrassed…the list goes on and on. One among many things your blog does is to teach us who have no experience what it’s like to live day to day with Mrs Carder and the other beautiful people we know who may one day have this consuming illness. There is stigma to being blind, to being deformed by birth or war. Those folks, however, can by the way they live their own lives reduce the stigma – by attitude and personality and determination. And there’s the huge difference with dementia or Alzheimers. We are Mrs C’s voice, Mr S’s opportunity to squelch the fear and affect understanding. Keep teaching please.
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