2.2 The idea of having dementia

At 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 worry for themselves, for their future, and for their loved ones. These feelings and thoughts may get in the way of participating in life right now. Working through these feelings can help people get back to enjoying life again. Withdrawing from activities might make the dementia worse, as keeping physically and socially active is good for the brain.

Some people with dementia feel embarrassed or ashamed about dementia. They feel that it’s their fault they developed dementia (it’s not), or that people will pity them, or laugh at them if they can’t remember or behave differently. People might withdraw from society because of these feelings.

Dementia is a chronic disease, and the World Health Organisation states it is a major cause of disability and dependence globally, just like diabetes, or arthritis. It’s not something to be ashamed about. Dementia can happen to anyone. Read this page 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.

People can 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 can feel supported by the person you’re sharing with.

Some people prefer to work through worries and feelings by writing about them. Writing thoughts and feelings down helps put feelings into perspective and can make them less intense. It can help you to understand your emotions more clearly and feel more in control.