Causes of stigma in dementia

There are many causes of stigma in dementia, but I do wonder whether it is I some way self inflicted. 

I say this because we are used to hearing about Alzheimers Disease, through out the world, and I do wonder if this has fuelled the stigma.

I say this because I have been asked many times, if the illness is contagious, and when I ask why anyone would ever think that, the same answer comes back.

If it's not contagious, why do people call it Alzheimers Disease?

I am starting to think that this has fuelled some of the stigma.

However most of it is caused by pure ignorance through lack of education.

Like Cancer in the 1960s people thought it was a dirty disease, caught by doing something you should never have done.

Yet those of us who have cancer or dementia have done nothing wrong to attract this horrible illness.

Many assume wrongly, that when you get dementia, you are unable to speak, of take a constructive part in life. I have been shouted at because the person thought, that once you get the illness you became  deaf. Why on earth do people think this?

I do think that there needs to be an open campaign, to educate people about dementia, so that they understand what dementia is, and what problems we may have. 

I feel very sorry for those who had dementia over  the past 100 years or so, because many of these were put into mental hospitals, because the authorities thought that they were mad. 

Here again it us a total lack of understanding. But I am sure , that if we work hard enough at this we can remove the myths etc, and then remove the stigma we still see these days.

Many people often say, you don't look as if you have dementia, so what does a person with dementia need to look like. This is a quite common remark and after a while  it gets you.

I have often gone out with my wife, and occassionally when she has stopped to speak to people, she gets asked, how is Ken?

My wife's response is always the same, why not ask him yourself, he can speak and he is stood beside you.
This again becomes quite hurtful after a while, because you feel like a ghost who is only visible to a few people.

Let us all work together and remove this major problem



  1. I wrote Sunshine: A Love Story about my mom's journey (and my journey as her daughter) through Lewy Body dementia. I am still not sure what I learned about Lewy Body, but I do know that my mom was not "crazy." While the experience was often sad, it was also uplifting. Her spriit remained strong. Below is the back cover summary of Sunshine.

    "After losing her husband of 61 years of marriage, Thelma resists leaving her home until her children make the decision that it is too dangerous for her to live at home alone and move her into a nursing home. She is subsequently diagnosed with Lewy Body dementia, a debilitating neurological disease, that progressively robs her of her physical health and mental clarity. Interweaving present events with intimate memories and reality with hallucinations, Thelma narrates a beautiful story of the love between her and Ed, Dad, Papa-her husband, the father of their children, the grandfather of their grandchildren-and their deep love for their family. Sunshine is heartbreaking and disturbing yet ultimately heartwarming and uplifting. Thelma will become a beloved family member as you experience with her the loss of her husband, her memory, her physical health and eventually her life. And now faith, hope and love remain, but the greatest of these is love. I Corinthians 13:13"


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I always say that we may have this illness, but we are all so different.

This is my own daily problems, but I would gladly share anyone elses, if they send them in,

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