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2.6 Some people may not want to talk about their diagnosis

Sharing the diagnosis can help you to come to terms with dementia and get the support you need.

On occasion, the person with dementia may not want to talk about the diagnosis with you or may ask you not to tell anyone. This can make things difficult. If you do talk about dementia with your family, you may feel disloyal or guilty; on the other hand, if you ‘cover up’ the person’s dementia, you may feel guilty that you are deceiving concerned family or friends.  

There can be several reasons that someone with dementia is not ready to talk about their diagnosis.  

The person with dementia may need more time

Give them time to come to terms with their diagnosis. You can provide gentle support and reassurance when you do bring up the topic: 

  • Ginella told her wife “We are a team, and together we’ll manage” 

  • Min asked her husband with dementia for him to support her. “My husband has always been the provider, the supporter, and the planner in our family. If he feels like he is supporting me, he is able to continue in his usual role. This gives him confidence that he will manage to talk about his dementia.” 

  • Marco, a person living with younger onset dementia, didn’t want to tell anyone he had dementia until he had a plan. Once his plan was in place, he started telling people: “I have dementia, and this is my plan to deal with it”.  

Denying there is a problem

Denial of dementia or its symptoms may indicate the person is fearful about the condition, the future, or how others may view them.  Sometimes denial is part of a coping process and means they need time and reassurance. Denial may be a coping style they’ve used to deal with problems in the past. Insisting that there is a problem can lead to further resistance or anger.  

The section Coming to terms with dementia on our website provides some positive suggestions for persons with dementia to cope with their feelings and to take steps forward. 

Lacking awareness of their condition

Sometimes people with certain dementias lack understanding and awareness of their condition. This is usually caused by changes in the brain, especially the frontal lobes (the regions of the brain behind the forehead) due to the disease. These people may not be aware of any challenges they are having and become angry or withdrawn if you try to talk about dementia.  

This does not mean that the person is refusing to acknowledge the disease or being difficult. In these cases, it is important for you to get support and assistance. Speak with your doctor for a referral to a psychologist or social worker with expertise in dementia. They can help you navigate challenging situations that arise and develop strategies to cope and improve your well-being. 

Learn from others

  •  Further reading and an online forum can be found by clicking here 
  • A short video about lack of awareness from Sinai Health in Ontario can be found by clicking here