What is the life expectancy for childhood dementia?

The median life expectancy for childhood dementia is 9 years of age. This means that half of all children with dementia die before their 10th birthdays. Sadly, childhood dementia is fatal and all children die prematurely. Most children with dementia don’t reach adulthood, with 71% of children dying before reaching their 18th birthdays (Elvidge et al., 2023).

Behind these overall statistics, each child's experience with dementia is unique. Life expectancy varies across the different childhood dementia disorders, and even children with the same condition can experience different rates of progression.

There are over 100 genetic conditions that cause dementia in childhood (Elvidge et al., 2023). For some children, symptoms can appear when they're babies and progress quickly. While for others, initial symptoms may not present until later in childhood and progress relatively slowly.

Across all childhood dementia, there is one common feature: childhood dementia is progressive. Over months, years or decades, these conditions damage children’s brains and nervous systems more and more, causing children to progressively lose skills they may have already developed like the ability to talk, walk and play. Over time, their brains and bodies lose the ability to keep the body functioning properly and, eventually, to keep the body alive.

The cause of death in childhood dementia disorders is usually attributed to severe untreatable seizures, heart complications or trouble breathing and swallowing which can cause respiratory infections such as pneumonia.

Despite the conditions that cause dementia being severely under-researched, there are promising clinical trials underway and potential treatments emerging for some childhood dementia disorders. With more research, there is great potential to improve survival and quality of life for children.

More information on individual disorders, symptoms and life expectancy can be found in the Childhood Dementia Knowledgebase. 

Graph: Overall survival of the cohort born with a currently untreatable childhood dementia

References

Elvidge KL, Christodoulou J, Farrar MA, et al. The collective burden of childhood dementia: a scoping review. Brain. 2023;146(11):4446-4455. doi:10.1093/brain/awad242