2.12 Manage stigma from others

Many friends and family members are supportive in how they treat their loved one with dementia. However, people with dementia are sometimes treated negatively because they have dementia. They developed strategies to manage situations when they experienced stigma.

Stigma means that others behave negatively or have negative attitudes towards you because you have dementia.

Examples of stigma and management strategies

• Sometimes, rather than speaking directly to the person with dementia, a person will talk to their spouse or carer about the person with dementia as if they were not there. This makes some people with dementia feel invisible or ignored.

People with dementia can join the conversation, even if they weren’t addressed directly.

Alternatively, they can ask the spouse or carer to bring them into the conversation. For example: “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 they would have previously taken part in or been invited to. This makes them feel excluded, or isolated.

Even though this breaks social protocol, people with dementia can talk to the activity organiser and ask to be included. They can also ask indirectly through another person. This conversation will help the other person’s understanding of dementia. You can discuss how the activity might be changed, or decide to select a different activity that better accommodated your needs. For example, someone might be appointed to help you keep score for golf, or your group might decide to play lawn bowls instead. Usually, this strategy leads to the person with dementia being included the next time.

• People with dementia describe how friends fall away after their diagnosis of dementia. Sometimes they are disappointed because a close friend stops calling or visiting. This makes them feel lonely.

Some people with dementia reach out to those friends, to show they still want to spend time together. They can ask another friend to act as an intermediary to sound that friend out and try to encourage them to stay in touch.