Many care partners say they struggle to tell other people about the diagnosis. You may be worried about how people will react. Care partners have described a range of reactions experienced by family and friends when they were told about 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 care partner sharing the diagnosis, they feel loved and like they have people moving forward beside them.
- Some family and friends are overly supportive and want to help so much that the care partner 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 feeling embarrassed or awkward around them, or the care partner might be relieved that they don’t have to talk about dementia any more than necessary.
Sharing information about what the person with dementia is experiencing can make people feel more comfortable talking about dementia. For example, Fiona’s daughter created a simple document that explained the challenges Fiona was facing. Read more here about their story.
- Some family and friends become really upset at the news. Sometimes care partners find this unhelpful because they don’t want sympathy or pity; others might find it comforting that their family and friends care so much.
- Some family and friends don’t believe the care partner and question whether the person really has dementia: “They don’t look like they have dementia”. When the care partner gets this reaction, some people feel that they’re not being believed, while others might interpret it as the person living with dementia not being seen any differently. This Dementia Alliance International video is of 14 people with dementia talking about their experiences of being told they don’t ‘look like’ they have dementia.
The way some family and friends react, however well intended, may not feel helpful to you. The next section on the website 2.8 Sharing the diagnosis with family and friends includes ideas about how to share the diagnosis so your family and friends have enough information about how they can support you.