Unpacking common fears and concerns

Addressing some common fears, concerns or thoughts about seeking a dementia diagnosis.

Some people have fears, concerns or thoughts about seeking a dementia diagnosis – either for themselves or their loved one. Here is some information to addresses common fears.

“I’m worried that nothing can be done for dementia.”

There are treatments and supports for dementia

Scientific understanding about dementia is increasing every day. A lot can be done to help slow the progress of dementia and help people to better manage the changes and live well with dementia regardless of their age or stage.
This includes:

New medication and improved management of existing medications
Brain training
Cognitive stimulation therapy
Cognitive rehabilitation
Learning strategies and getting supports to live well.

Read more about managing symptoms of dementia on the Forward with Dementia website.

“If I ignore the changes, things might just get better.”

Being proactive about diagnosis can lead to better outcomes

Facing significant life changes is tough, and it can feel easier to avoid or deny changes than to ask a GP. However, changes usually do not go away on their own, and undiagnosed dementia might lead to more difficulties (e.g. unpaid bills, un-taken medication). Taking proactive steps to get assessed can lead to better outcomes.

The earlier dementia is diagnosed, the more time you have to get the benefits of a dementia diagnosis including:

Dementia medications
Rehabilitation and other therapies
Emotional and psychological support
Post-diagnostic support
Make positive changes to slow progression
Plan ahead
Get support at work.

“I don’t know how to have the difficult conversations about dementia.”

Talking about dementia often gets you support

It can be embarrassing talking to a GP or family about changes and difficulties you might be experiencing, and uncomfortable telling someone about changes you have noticed in them. Talking about dementia is the first step to getting support, assessment and treatment.

Planning for these conversations can help. Visit these pages of this website for information on how to:

If you do receive a diagnosis, you might also feel worried about telling others about your diagnosis. It is your decision when, who and how to tell others about your diagnosis. The Forward with Dementia website has resources that can help you to share your diagnosis, your way.

“I’m scared about what a diagnosis of dementia might mean for my life.”

A diagnosis helps you stay independent and in control

You may fear that a dementia diagnosis will lead you or your loved one to lose their independence. It is the symptoms of dementia that interferes with independence, not the diagnosis. A diagnosis does not automatically mean you will be placed into care. More than two thirds of people with dementia live in the community.

People with dementia can do a lot for themselves and for others. Getting help (e.g. cleaning or transport) does not mean that we have lost control of our lives. Read stories of people living well with dementia.

“I’m worried that I’m going to be discriminated against because I have dementia”

Face discrimination through assertiveness and advocacy

Some people with dementia find that they are treated differently because they have dementia. However, things are improving and there is a strong movement to reduce dementia stigma.

When you are assertive and advocate for yourself or your loved one around dementia, you are playing your part in reducing dementia stigma and discrimination.

Dementia is a chronic disease like diabetes or arthritis. People with dementia have the same rights to treatment and respect as others using health services. For more information, visit the page Reduce dementia stigma.