Improving the dementia diagnosis experience

Most people feel overwhelmed when first diagnosed with dementia. They described a sense of being lost and wondering “what next?”.

Our research found that many people, when diagnosed, were not given printed information, a care or support plan or even a follow-up consultation by their specialist. Many reported dissatisfaction with their diagnosis experience, and said their specialist failed to connect them to support services or give them any sense of hope.

A key objective of the Forward with Dementia program is to improve the dementia diagnosis experience for people living with dementia and their carers.

The program targets healthcare professionals via a media campaign and webinar series to improve the diagnostic consultation and ensure the provision of post-diagnostic support. Watch this 2-minute video where Professor Henry Broadaty encourages doctors to communicate information, show compassion, convey hope and ensure timely follow-up.

This website provides a healthcare professionals portal with a range of tools and resources. For example, the Checklist for communicating a diagnosis and care planning encourages doctors to arrange follow-up and care planning, and provide written information including contact details of key support organisations. Soon, we’ll be sending printed tools and resources to dementia specialists throughout Australia. We’re also promoting this website as a resource they can show their patients to help them in their first 12 months following diagnosis.

This website helps people with dementia and their carers to better understand the diagnosis. This includes information about the types of dementia, the progression of dementia, plus a downloadable Possible questions for your doctor. We recommend newly diagnosed people and their carers can learn from other dementia experts, including advocates and people living well with dementia.

When we evaluate the impact of this program over the next six months, we hope to find significant improvements in how dementia diagnoses are communicated, and the support and written information provided to patients.