The person with dementia may not want to talk about the diagnosis with you or ask you not to tell anyone. This can make things difficult. If you do talk about dementia to your family, you may feel disloyal or guilty; on the other hand, if you ‘cover up’, you may feel like you are lying to other concerned family or friends.
For someone with young-onset dementia, the wish for privacy can be even stronger. They may still be working, raising children, or paying a mortgage, and worry about workplace stigma or how friends, colleagues, or their own children will react. That being said, children and teenagers might sense something is wrong but feel confused or anxious if they’re asked to keep it secret.
There can be a number of reasons the person you support might not be ready to talk about the diagnosis.
They need more time to come to terms with it
Gentle support and reassurance can help.
- Wendy says to her husband “We are a team, and together we’ll manage.”
- Thelma asks her husband with dementia for his support; she explains “Rob 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 and to talk about his dementia.”
- Bill, a person living with young-onset dementia, choose not to tell anyone he has dementia until he has a plan for how to deal with it. Once his plan was in place, he was happy to say “I have dementia and this is my plan to manage it.”
Denying there is a problem
Denial of the 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 it means they need time and reassurance. Denial may be a coping style they have used to deal with problems in the past. If possible, connecting with others and learning how they are living full lives after a dementia diagnosis can be helpful. However, it’s worth keeping in mind that being together with people at very different ages, stages of illness, or levels of behavioural change can sometimes feel frightening or confusing for the person living with dementia.
Lack awareness of their condition
Sometimes people with dementia lack understanding and awareness of their condition. This is usually caused by changes in the brain due to the disease. These people may not be aware of any issues they are having and become angry or withdrawn if you try to talk about dementia. This is called anosognosia.
The lack of awareness is not simply refusing to acknowledge the disease or being difficult. In this case, it is important for you to get support and assistance. Speak with your doctor for a referral to a psychologist or social worker who can help you navigate situations that arise and develop strategies to assist you and your well-being.
Learn from others
- Visit AgingCare for further reading on the inability of some people with dementia to recognise their condition.
- View a short video about lack of awareness people with dementia have of their condition.
- More information about talking to a person with dementia who is reluctant, or does not want to talk (or does not recognise they have dementia) can be found on this page. While this is about helping someone getting an assessment for dementia, the same principles may help in talking about the diagnosis.
- Consider using the services provided by Relationships Australia in your state or territory. Relationships Australia offers specialised counselling and other support to assist people and their families to have difficult conversations and plan for the future (including medical, health, financial and living arrangements).
Photo: Amy Tran via Unsplash.
