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2.8 Sharing the diagnosis with family and friends

Sharing the diagnosis helps you to come to terms with it and others to understand

There is no right or best way to share the diagnosis. The aim is to have a positive experience of sharing so that other significant people in your life understand the changes they may have noticed and avoid misunderstandings. It may also mean that you and the person you support are more confident in asking for their assistance. When other people understand they may be more ready to offer support.

How to share the diagnosis

There is no right or best way to share the diagnosis of dementia with family members or friends. Many people chose to tell people face to face, or by telephone. Some people chose to share the news in letters or by email. One person told us she announced her partner’s diagnosis at an annual summer barbeque. Some people might ask someone close to them to share the news if they don’t want to have that potentially difficult conversation themselves. 

Catherine and her family were very open about their mom’s diagnosis.

“Whenever Mom met someone new, she would introduce herself and tell them she had a stroke and ‘got the dementia’. In doing so, she took her power back.” There is a lot of shame in the diagnosis and Catherine knows many people who have not been as open as her mom. “There’s no right way; there’s just your way.

Read more about Catherine, her siblings and their mom as they lived life after a diagnosis of dementia. 

Some people will have preconceptions or stereotypes about dementia, and questions about dementia. You can direct them to this website or give them a printout from this website. 

How to share the diagnosis

The person living with dementia should be in control of who they tell their diagnosis to, how they tell them, and when they tell them.  

  • It’s likely that when the person with dementia was told their diagnosis, you or someone else who is close to them was there. It’s important to remember that the diagnosis of dementia is the person with dementia’s news to share, not yours. The person living with dementia decides when they are ready to let other people know, and who they want to know.
  • Many people with dementia and care partners find that sharing the diagnosis is a positive experience. Sharing the diagnosis can help friends and family understand what you are going through, and how they can better support both of you. 
  • Some people with dementia may ask their care partners for help to share the news if they need support having a potentially difficult conversation.  
  • Sharing can explain changes in behaviour or mood that other people may have noticed and can help avoid misunderstandings. 
  • It is important to feel comfortable with the decision to tell others before doing so to help you feel more in control. 

When to share the diagnosis 

There is no right time to share a diagnosis of dementia. It is often a process that make take some time. Some people living with dementia and care partners chose to not tell anyone about the dementia diagnosis for a few months, some people tell others gradually as they see them, and some people tell everyone right away.  

Many people start by talking to people they feel close to, such as immediate family or close friends. Later, you and the person with dementia may want to share the diagnosis to more casual friends or acquaintances.  

No matter when you tell others, a key message to give is that dementia does not define your lives. You are both still the same people you were yesterday.   

Help to share the diagnosis