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2.7 Family and friends’ reactions

Your diagnosis affects others. Share your diagnosis and move forward with dementia together.

Family and friends may react in a range of ways when told that someone has dementia.

Many people with dementia say that they struggle to tell other people about their diagnosis. You may be worried how people will react. People with dementia have described a range of reactions by family and friends when they told them that they have dementia.

  • Many families and friends are supportive. They listen, make useful suggestions, give practical help and make accommodations without making a fuss. It’s a positive experience for the person with dementia sharing their diagnosis, they feel loved and  have people moving forward with them.  
  • Some family and friends are overly supportive and want to help so much that the person with dementia feels smothered or like they are being ‘bubble wrapped’. 
  • Some family and friends don’t know what to say and avoid the topic. This can result in the person with dementia feeling embarrassed or awkward around them, or the person with dementia might be relieved that they don’t have to talk about their dementia any more than necessary. 
  • Some family and friends don’t believe the person and question whether they really have dementia:

 “You don’t look like you have dementia”.

  • When they get this reaction some people with dementia feel that they’re not being believed, while others might interpret it as the person not seeing them any differently. In this Dementia Alliance International video, 14 people with dementia talk about their experience of being told they don’t look like they have dementia. 
  • Some family and friends become really upset at the news. Sometimes people with dementia find this unhelpful because they don’t want sympathy or pity, others might find this comforting that the other person cares so much. 

The way some family and friends react, however well intended, may or may not feel helpful to you. In the next section there are some ideas about how to share your diagnosis so that your family and friends have enough information about how they can support you.  

Emotional reactions

Be comfortable talking about dementia

Sharing information about what you are experiencing can make people feel more comfortable talking about dementia. Read more about Fiona’s experiences here.