On occasion, the person with dementia may not want to talk about the diagnosis with you or asks 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.
There can be a number of reasons the person you support is not ready to talk about the diagnosis.
They need more time to come to terms with it
Providing gentle support and offering reassurance may assist.
- 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 younger onset dementia explained he did not want to tell anyone he had dementia until he had 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. Listening to others with dementia talk about how they are living full lives following their diagnosis could be helpful.
This website also has a section for people with dementia on Coming to terms with dementia, which provides positive steps to cope with feelings and taking positive actions.
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 These people may not be aware of any issues they are having and become angry or withdrawn if you try to talk about dementia.
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 and an online forum.
- View a short video about lack of awareness people with dementia have of their condition.
- Consider using the Elder Support and Mediation Service 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).