2.12 Manage stigma from others

Many friends, family and colleagues at work will be supportive in how they treat you. However, people with dementia are sometimes treated negatively because they have dementia. They may act awkwardly, avoid contact, or talk about dementia in unhelpful ways. These reactions often come from uncertainty or misunderstanding rather than bad intentions, but they can still hurt. This is called stigma.

Combatting stigma

Stigma happens when people make assumptions or behave negatively because of the dementia diagnosis. Naming stigma when you see it, and having a plan for how to respond, can make a big difference. You might:

• Choose to correct misconceptions gently.
• Ask a trusted friend, colleague or your spouse to speak up or advocate for you.
• Speak up if you feel you are being left out.
• Have a list of small easy adjustments that others can make to include you (e.g. offer a lift if you no longer drive, give you extra time to answer a question).
• Share educational resources to demystify dementia (for example, from this website or Dementia Australia).

It can also help to talk about your experiences with others who understand. Peer groups for people with dementia can provide empathy and practical ideas.

Kahlid found that instead of speaking to him, people looked past him and spoke to Aisha, his wife. He was hurt and felt invisible when this happened. Aisha smiled at people who asked her a question about Kahlid and said, “Kahlid can answer that for himself”.

Barry was a member of his local Men’s Shed. Following his diagnosis he found other members didn’t seem to let him do tasks he felt he could still do. Kathy, his wife suggested he print and article from the carer’s section of this website; 3.8 Help without taking over. He took a copy of this article along and said to his mates “I can do a lot of stuff, I might just need a prompt now and again. Kathy said this might help”.

Len and Norah always assumed their oldest friends would support them after Norah’s diagnosis. Len said, “it was like they thought dementia was contagious. We never saw or heard from them”. Len asked another friend to be an intermediary to sound out those friends and try to encourage them to stay in touch. Sadly, the friends remained distant. However, Len but Norah found new friends and understanding companionship through their local Dementia Friendly Community activities.