Childhood Dementia Initiative has released its world-first report, State of Childhood Dementia 2022. The report assesses progress to date on research, support services and policy responses to childhood dementia. It reveals a dangerous lack of research and appropriate care and support for families and the urgent need to make childhood dementia a health priority. 

“This report shows us that action to date has been grossly lacking. This is especially evident when we assess the response to childhood dementia against other comparable disease groups,” says Childhood Dementia Initiative CEO, Megan Donnell. 

Included in the report is an assessment of clinical trial activity. “Clinical trials are a good data point because they occur once extensive laboratory-based research and drug development have occurred and investment is in place, and they’re key to developing real-world treatments and cures. We analysed the number of clinical trials undertaken per patient across diseases to give us a sense of what’s happening. The results are quite shocking,” says Dr Kris Elvidge, Head of Research at Childhood Dementia Initiative. 

Per patient, the number of clinical trials focused on childhood dementia was substantially less than other diseases: 18 times less than cystic fibrosis, 12 times less than childhood cancer and 4 times less than motor neurone disease. 

There are no effective treatments or cures for most childhood dementia disorders. Childhood dementia affects an estimated 700,000 people globally and 2,273 in Australia, and has an estimated incidence of one in every 2,800 births. Childhood dementia’s incidence and prevalence are comparable to well-known diseases such as cystic fibrosis and motor neurone disease respectively.

“When you consider the severity of childhood dementia – the large number of children affected, their short life expectancy, and that their families have to watch them fade away – it’s clear that these figures demonstrate inequity and neglect of this patient group,” says Donnell. “Research activity is revealing because it is often reflective of health priorities.” 

The report highlights that childhood dementia doesn’t feature in major dementia action plans and policies. This includes in the World Health Organization (WHO) Global action plan on the public health response to dementia 2017 - 2025 and the national dementia plans developed by WHO member states. The report recommends making childhood dementia a health priority and incorporating it into local, national and global dementia protocols, policies and strategies. 

“Childhood Dementia Initiative considers families’ experiences as key to the development of future policies. We can only build appropriate responses to childhood dementia if they’re consumer-centred,” says Donnell.

The report also features emerging evidence of extensive challenges faced by families navigating their child’s care, accessing timely therapies and support services, and connecting with healthcare professionals who are knowledgeable regarding their child’s condition. 

“We need to see more research on the needs of families. What we can see reasonably clearly is that, in the absence of appropriate and responsive care, parents are stepping in to fill the gaps, which take a huge toll on the whole family,” says Gail Hilton, Head of Programs Care and Quality of Life at Childhood Dementia Initiative. 

Emerging evidence indicates there is a severe caregiving burden experienced by parents and that the impacts on mental health and overall quality of life for carers of children with dementia are more significant than the impacts of caring for children with other chronic diseases like cancer.

“It’s essential that we listen to families and formally gather evidence of their challenges and what they need so that support services respond to them. And it’s equally important that health and care professionals have access to information and are knowledgeable about this patient group and their unique challenges,” says Hilton. 

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