2.11 Managing how others treat you and the person you support

Many friends and family members are very supportive of the person with dementia and the main care partners in their lives. However, care partners have told us that they have been treated negatively because of dementia. 

Strategies to combat stigma

Care partners have shared some strategies for how they manage when they experience stigma. Stigma means that others behave negatively or have negative attitudes towards them because the person they care for has dementia.  

Here are some things that people have shared with us:  

• Sometimes rather than speaking directly to the person with dementia, a person will talk to their care partner or another person in the room about the person with dementia as if the person with dementia was 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, 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 and care partners are left out of activities they have previously taken part in. This can make you feel excluded or isolated. For example, – Anne spoke about her experiences that she and her husband had of simply being ‘dropped’: 

“We have been part of a fund-raising charity event for years. I thought the chairperson was late getting in touch and when I inquired, I was told that the committee decided it would be too much for me and Tony… They thought I was too busy being a care partner now and Tony would not be able to cope at the event.  I was horrified and very upset. Who are they to tell us what we can or cannot manage?” 

• This is an example of experiencing stigma. One way to deal with this is to talk to the person organizing the meeting or activity and ask to be included. You may also ask indirectly through another person. The conversation might help the organizer 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 for the person with dementia (e.g., attend every other meeting, or help to fund-raise in a new way) These strategies may result in the person with dementia being automatically included next time, instead of being left out.   

• Care partners say that at times friends may fall away after the person they support receives a diagnosis of dementia. Sometimes they are really disappointed because a close friend stops 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. Also, some care partners have found that meeting new people from support groups have been a welcome addition to their circle of friends.