About the Childhood Dementia Advocates Program

The Childhood Dementia Advocates Program provides an opportunity for primary carers and former primary carers of children with dementia to share their stories, identify current issues and positively affect change.

All you need to be part of the program is an interest in wanting to make a difference. Childhood Dementia Initiative and Childhood Dementia Advocates work together to raise awareness of childhood dementia, to advocate for investment into research, and to influence decision-makers across government and the health and social care sectors.

Who can become a Childhood Dementia Advocate?

  • A primary carer of a child living with dementia
  • A bereaved primary carer of a child who had dementia

Please note the Childhood Dementia Advocates Program is for people who have a lived experience of childhood dementia. This means caring for, or having cared for, a loved one with childhood dementia. Health and social care professionals are not eligible for the Childhood Dementia Advocates Program. If you are an interested health and social care professional, connect with us at hello@childhooddementia.org.

Childhood Dementia Initiative welcomes and encourages the involvement of people from diverse backgrounds; including Aboriginal and Torres Strait Islander people, people from culturally and linguistically diverse backgrounds, people in rural and remote areas, people at risk of homelessness and people who identify as lesbian, gay, bisexual, transgender and/or intersex.

What does being a Childhood Dementia Advocate involve?

The first step is getting to know the Childhood Dementia Initiative Consumer Engagement team and the team getting to know you.

Childhood Dementia Advocates are invited to participate in a range of activities which we promote under the broad banner of Childhood Dementia Advocacy, including: 

  • Sharing your thoughts and experiences through surveys, workshops or interviews  Sharing your thoughts and experiences through surveys, workshops or interviews
  • Working with researchers and research funders to set research priorities
  • Participating as a representative on advisory boards or committees
  • Raising awareness by being involved in media campaigns, public speaking and/or blog writing
  • Providing feedback on policy, program, services and/or new technology

If you decide to become a Childhood Dementia Advocate you can be involved as much or as little as you like. You can step down from the Program at any time. 

We are always looking for interested people. To join, simply fill in the form below.

Become a family advocate

Fill in this form and we'll be in contact with you about opportunities to get involved. 

Contact details

If you have any questions or would prefer to complete the online application form over the phone, please contact a member of the Consumer Engagement team. You can do this by emailing hello@childhooddementia.org and asking for a call back at a time that is convenient for you. 

We look forward to hearing from you.