As of 2020, it is estimated that around 700,000 children around the world are currently living with childhood dementia, which is caused by more than seventy different genetic conditions.
Childhood dementia can be diagnosed during infancy and in children aged up to 18.
Following recent meetings with Megan Donnell, CEO of Childhood Dementia Initiative, ADI asked Megan to shine a light on her work which reflects many of the same challenges we face around lack of awareness, stigma and barriers to health and care supports.
In this blog, Megan shares why childhood dementia has been historically and severely overlooked by healthcare professionals, researchers and the general public, as well as what can be done to help those who are most affected.
The need for action
Just like adults who are living with dementia, children who are living with dementia can experience memory loss, confusion, trouble concentrating, learning and communicating. Personality and behavioural changes and emotional issues, such as fear and anxiety, also impact children who have been affected.
Their families watch and care for them as they progressively lose their skills – including some they’ve only just gained – and with the knowledge that there are many skills they will never have the opportunity to learn. And just as it is for adults, dementia in childhood is life-limiting.
Sadly, most children with dementia don’t reach adulthood.
Why is awareness of childhood dementia so low?
If you haven’t heard of childhood dementia until now, you’re not alone. It is overlooked both as a health and social issue, and the lack of awareness is stifling responses to children and families, much like it already does for older people living with dementia.
The reason for this comes down to the way childhood dementia has been viewed. Until now, the disorders that cause childhood dementia have been considered, treated and researched individually in silos. The focus has been on underlying causes instead of how these disorders present and impact children.
I know this well because I spent almost 10 years working in one such silo.
After my children, Isla and Jude, were both diagnosed with a form of childhood dementia called Sanfilippo syndrome, I started an organisation to fund research into their condition. Over time, I began to wonder if our work could inform research into other childhood dementia disorders.
I also observed other parents, just like me, struggling to access the care and support they so desperately needed. I realised that dementia in childhood might be more common and have a deeper significance than previously thought. I couldn’t, however, find anything in the academic literature that quantified the collective impact of childhood dementia.
So in 2019, I commissioned a burden of disease study to understand the breadth and depth of the problem. The results were astounding and presented a clear case for action.
There are over 70 rare genetic disorders that cause dementia in children, and right now, they are impacting 700,000 lives globally. Sadly, 75% of children living with dementia have a life expectancy of just 18 or less, and on average, someone dies every 11 minutes from childhood dementia.
A new response to children is needed
Childhood Dementia Initiative is driving a global response to childhood dementia disorders as a collective. This represents a paradigm shift in how these children are viewed, cared for and treated. Applying activity to all childhood dementia disorders and considering all children living with dementia together, creates opportunities for greater scale and impact.
For example, it encourages the improvement and adaptation of support services by acknowledging the unique needs of this patient cohort and their families. For researchers, it fosters the study of multiple disorders at one time and the sharing of resources that were previously duplicated for each disorder. For policymakers, it compels the inclusion of affected families in dementia plans and strategies.
History demonstrates that this model works. The progress made to date on adult dementia is evidence of that. While there is still a long way to go, care and support, research, awareness, education and training, and policy on adult dementia have all progressed over recent decades across multiple causes and diseases.
Now that children with dementia are visible, they demand new responses. Genuinely inclusive dementia strategies, practices and policies will include children and their families and meet their needs.
Dementia is not a normal part of life. Even children get dementia and all people, including children with dementia and their families, need acknowledgement, support, dignity and respect.