Manage how others treat you
Many friends and family members are very supportive of the person with dementia in their lives.
However, people with dementia have told us that they are sometimes treated differently because they have dementia. They also shared some strategies for how they manage when they experience stigma.
Stigma means that others behave negatively or have negative attitudes towards you because you have dementia.
How to manage if you experience stigma from others because you have dementia
Here are some things that people have shared with us:
Sometimes a person will talk about the person with dementia as if they were not there. This makes some people with dementia feel invisible or ignored.
In these situations, some people with dementia decide to join the conversation, even though they weren’t addressed directly. Some people with dementia ask their care partner to bring them into the conversation, e.g. “Maybe Sarah can answer that question herself”. Both strategies mean that the person with dementia can be more involved in the conversation.
Sometimes people with dementia are left out of an activity that they would have previously taken part in or been invited to. This makes them feel excluded or isolated.
Some people with dementia might talk to the person organizing the activity and ask to be included. They may also ask indirectly through another person. Having a conversation like this might help the other person understand dementia a little more. It can also help to discuss how the activity might be changed, or a different activity chosen, to be more accommodating to the person with dementia (e.g., someone helps them keep score for golf, or the group decides to play lawn bowling). These strategies may lead to the person with dementia being automatically included the next time.
People with dementia say that some friends fall away after their diagnosis of dementia. Sometimes they are really disappointed because a close friend stops calling or visiting. This makes them feel lonely.
Some people with dementia might reach out to those friends, to show that they still want to spend time together. They might also ask another friend to act as an intermediary to encourage them to stay in touch. Sometimes these strategies work.
Take action against stigma
Visit FlippingStigma.com to take action against stigma associated with dementia. It has been designed by people with dementia to help others.