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2.2 The idea of having dementia

If you have just been diagnosed, the idea of having dementia can be more disabling than your current symptoms of dementia.

At the time of diagnosis, the idea of having dementia can be more disabling than the symptoms

For instance, people with dementia may feel strong grief and loss and constantly be worrying for themselves, for their future, and for their family or friends. These feelings and thoughts may get in the way of them taking part in activities they enjoy.  Working through these feelings can help people get back to enjoying life again. Withdrawing from activities might make symptoms of dementia worse, as keeping active is good for the brain.

Some people with dementia feel embarrassed or ashamed about having dementia. They might feel that it’s their own fault they developed dementia (it’s not), or that people will pity them, or laugh at them if they behave differently than usual. People who feel this way might withdraw from family, friends and activities because of these feelings.

Dementia is a chronic disease, like diabetes, or arthritis. It’s not something to be ashamed about. Dementia can happen to anyone. Read this article about breaking down myths and stereotypes about dementia.  Younger people can sometimes feel more shock, as dementia is often mistakenly thought of as only an older person’s disease. 

Some people work through worries and feelings by talking about them. They might talk to someone they know and trust, or with a professional outside their social circle. Talking about what you think about dementia helps put those thoughts and feelings into perspective. By sharing feelings, the feelings can become less intense and you may feel more supported by others. 

Some people prefer to work through worries and feelings by writing about them. Writing thoughts and feelings down also helps put them into perspective and can lead to feelings that are less intense. Getting those thoughts and feelings out of your head and down on paper can help you understand them more clearly and feel more in control.  

Write down your thoughts and feelings about dementia

Write down your feelings about having dementia in a journal or a notepad. If you don’t know where to start, write a letter to your future self, or someone you love.