State of Childhood Dementia 2022

This report explores the current state of childhood dementia across policy responses, research progress and the support available for children and families. There are significant barriers in all of these areas to achieving much-needed outcomes for children with dementia globally.

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Advocacy and Awareness

• Childhood dementia is excluded from global policies, action plans and responses to dementia. This is despite childhood dementia being relatively common and severe.  
• Awareness and education resources are urgently required for health and social care professionals, people living with childhood dementia and the broader community.
• Caregivers engaged in Australia report there is little to no understanding of the condition in the community and the health system.
• Analysis of federal government research funding in Australia revealed historically significant inequity. Childhood dementia received:
  • 20 times less funding for research than childhood cancer, with a comparable number of children dying in Australia each year.
  • per patient, 9 times less funding than childhood cancer, 6 times less than motor neurone disease and 2 times less than cystic fibrosis.
• The Australian federal government is believed to be the first in the world to dedicate funding to childhood dementia research.
• Childhood dementia must be acknowledged and responded to in local, national and global health and social care protocols, strategies and policies.
• The lived experience of families is central to making improvements in health and social care systems and must influence policy and research priorities.

Research and Data

• 353 childhood dementia clinical trials have been initiated since 1990 across 48 countries.
• The number of childhood dementia clinical trials per patient was 18 times less than cystic fibrosis, 12 times less than childhood cancer and 4 times less than motor neurone disease (MND).
• More than half of the childhood dementia disorders currently have no clinical trial options available to patients anywhere in the world. 
• New clinical trial activity slowed since the beginning of the COVID-19 pandemic.
• The highest proportion of trials focused on testing small molecule drugs (40%). Many of these drugs could be widely applicable across multiple childhood dementia disorders with common attributes, however, they have only been tested one disorder at a time. 
• Gene therapies make up a sizable proportion of clinical trials (14%).
• Collaborative research is critical and a new researcher network is demonstrating benefits.
• Shared infrastructure is required to create efficiencies and accelerate progress. 
• Large-scale funding is urgently needed for research that concurrently studies multiple childhood dementia disorders and develops new therapeutics. 

Care and support

• There has been little investigation into the needs and experiences of children with dementia and their families. Further research is needed. Emerging evidence in Australia shows that:
  • The specific psychosocial needs of children with dementia and their families are not being met by health and social systems.
  • The caregiving burden is immense and the impacts on mental health and overall quality of life are more significant than the impacts of caring for children with other chronic diseases. 
  • Families experience significant delays in receiving accurate diagnoses and accessing timely therapies.
  • Medical teams lack relevant knowledge.
  • There is a deficit of care pathways and the need for parents “to constantly battle” to gain access to appropriate care.
  • There exists insufficient coordination of care across health and social care services.
  • Families experience inadequate levels of awareness, compassion and respect across health and social care professionals.
• Early indicators suggest that viewing the childhood dementia disorders through a ‘dementia lens’ can deliver improvements to existing care and support.
• Early diagnosis is essential to improve access to emerging therapies as well as optimal care and support and to inform reproductive decisions for families.