Hello and welcome to episode 26 of my series of Tiny Talks about Dementia.
And today I will be talking about stigma and dementia.
Stigma is a huge issue for people living with dementia as well as for their family carers.
All too often I hear that people lose contact with close friends or even with family members after someone has been diagnosed with dementia.
An incredibly sad side effect of an already stressful and angst inducing diagnosis.
Let's talk about where this stigma comes from and how you may be able to address it.
If you google definition of stigma,
This is what you'll find.
It is a mark of disgrace associated with a particular circumstance,
Quality or person.
The use of the word disgrace seems to imply that the person is somehow responsible for being who they are or a certain quality or as in the case with dementia,
A particular circumstance they find themselves in.
Do you feel people are responsible for developing dementia?
Yet people with dementia and those around them encounter stigma a lot.
A couple of examples.
Being talked about whilst being in the room.
Being spoken to in simple language or an extremely loud voice.
And being isolated.
Stigma is often unfair as well as unjustified.
Yet it severely impacts on those who are the target.
Stigmatizing people with dementia comes from a place of existential fear is my theory.
Fear that the person may do something odd,
Wrong or embarrass herself in another way.
And clearly there is an assumption that this would then rub off on you.
Another option is a fear that you will be saying or doing something wrong because of your unfamiliarity with dementia.
And of course,
Deeply underlying these fears,
The fear of finding yourself in the same situation one day.
Terror management describes how people structure their lives in such a way that it helps them to ignore the fact that we will all die at some point.
This may be extended to living with dementia.
People observe and fear the loss that accompanies this process.
So it is best denied or even better avoided,
Ignored,
Swept under the rug.
If I don't witness it,
It is not a real thing.
That kind of thinking.
Although terror management helps us live our lives without constant existential fear,
These are unwelcome and dysfunctional side effects.
Even those close to someone with dementia may unconsciously show stigmatizing behaviour such as no longer listening to repeated questions,
Giggling at odd behaviour,
Forgetting about their preferences.
Maybe no harm is intended,
But harm is done.
So if you know someone who has dementia or cares for someone,
Check in with them,
Share your inexperience and fears.
But above all,
Ask what they need.
