2.2 The idea of having dementia

At diagnosis, the idea of having dementia can be more disabling than the symptoms you are experiencing.

Working through feelings is a positive step

People with dementia may feel a strong sense of 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 if diagnosed with dementia, as dementia is often mistakenly thought of as only an older person’s disease. This website has an entire section about young-onset dementia and how to move forward with this diagnosis.

Things you can do to work through your feelings

• Express your feelings. It is perfectly OK to cry. Tears are one way that help you let go of emotion.
• Accept your feelings. Know there is no ‘right’ way to feel. Your spouse, partner or family will have difficult feelings too. Know that a whole range of feelings are normal.
• Talk about your feelings. You might talk to someone you know and trust, or you can talk to a professional counsellor. Professional counselling is strictly confidential, and you can speak openly about your feelings. Talking about how you feel with another person can put thoughts and feelings into perspective and sharing will help ease the intensity of feelings.  Counselling can be arranged through Dementia Australia’s Helpline (1800 100 500) or you can access private services (you need to pay for these). Your GP will be able to refer you to skilled counsellors in your area or online.
• Write about your feelings. Some people prefer to work through worries and feelings by writing about them. You can try writing a journal. It can be helpful to write letters – that you will never send to particular people, including your future self – as a way of releasing anger, frustration, guilt, distress and so on. Getting thoughts and feelings out of your head and down on paper can help you understand them more clearly and feel more in control.

By working through feelings, the feelings can become less intense and you can feel supported by the person you’re sharing with.