A stigma is a mark that is characteristic of a disease or a mark of disgrace or infamy.  "Shun" is frequently used in connection with "stigma."  You can easily find headlines that a bank will shun a bail out to avoid the stigma of failure, for example.  The avoidance of an undesirable mark is common.  Shunning is a social rejection which is an institutionalized or socially acceptable form of avoidance or rejection.

Dementia has a stigma.

Dementia's stigma is multifaceted.  It causes both the dementia patient and the caregiver to be shunned.

The dementia patient is frequently shunned by friends and family members who are not caregivers because those friends and family members find visits painful.  They are unable to accept the steady changes and the loss of shared memories that they observe in the dementia patient.  They don't want to visit one day and learn they are no longer recognized.  They don't know how to handle the emotional or physical outbursts or the repetition or uncoordinated movements.  It is grief and denial that leads them to walk away and not return.  It is sometimes a fear of their own mortality or a lack of an understanding of the disease.

The dementia patient's caregiver is also shunned.  Their dedication and time commitment to the dementia patient means they are frequently unable to break away for a social jaunt of their own.  Their charges are shunned and in the process, so are the caregivers.

So, how do we break the stigma of dementia?

We educate.  Dementia is not contagious.  It causes us, the observers, grief and confusion.  If I get dementia one day, it won't be a result of spending time with my sister.

We bring dementia into the public discussion.  The more we talk about dementia, the more we normalize it.  Dementia is something people fear.  They fear the loss of their cognitive abilities and we need to discuss that fear.

We share our stories.  We share our funny moments as well as our sad moments.  We look for the ways to laugh, to honor our loved ones and to celebrate our efforts.  Most of all, we just keep talking and telling everyone.  We don't need to romanticize it.  We need to be honest in our assessments of how things are going or what we experience.  Some days are going to be incredibly difficult.  Some will be filled with light.  We need to share both.

Additional Information Sources:
Caregiver Isolation as Cultural Disease
Caregiver and Isolation: Do You Feel Like the Loan Ranger?
Alzheimer's - the problem of stigma
7 Ways Caregivers Can Survive Isolation
Reducing Caregiver Isolation


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