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2.5 Talking about a dementia diagnosis

Being open and honest can help you express your feelings and allow others to support you.

Talking about the diagnosis with the person who was just diagnosed can be a positive step forward. Open and honest sharing can help you both express your feelings and support each other. Talking about the diagnosis and planning together about how to adapt to the changes dementia will bring may give a sense of clarity about your way forward.  

By talking together, you can discuss with whom, how, and when you want to share the diagnosis.  

Talking allows you to make important decisions about the future, such as what sort of treatment or care the person with dementia would like, and the sort of support each of you needs right now. Talking can help you feel more settled about future legal and financial decisions. Avoiding the topic of dementia can result in you both feeling isolated and lonely, even in strong relationships.  

It can be a difficult conversation to start but talking about dementia can help normalize it. 

Joseph knew that his wife Esther was frightened about her future with dementia. She was reluctant to talk about it or share the diagnosis with other friends or family members. Joseph started the conversation by saying

“You know how your memory has been a problem. Can we talk about how we can tackle this together?” 

Esther was still reluctant, but Joseph emphasized that they had always tackled problems together, and this was no different. With reassurance, Esther gradually opened up to Joseph and felt more confident about planning for their future together. 

Betty and her husband found it helpful to talk about dementia like a third person in their house; “Mr Dementia” got blamed, not her husband Alec if things were misplaced or forgotten.

Betty said, “we could get angry and even laugh about dementia without Alec feeling it was his fault.”