There is a whole other class of dementia that researchers know very little about. An alarming number of Australian children and young people are living with a devastating and under-discussed condition: childhood dementia. This rare form of dementia, caused by genetic mutations, affects more than 1,400 young people and has devastating consequences on their lives and their families.
However, research and awareness about this is extremely limited, leaving many of these children without treatment and hope. It is time to focus our resources and efforts towards understanding and treating this cruel disease that affects so many innocent young people.
How dementia affects children
Broadly speaking, childhood dementia is caused by one of over 100 rare genetic disorders. Although the causes differ from dementia acquired later in life, the progressive nature of the disease is the same.
Half of the infants and children diagnosed with childhood dementia will not reach the age of ten, and most will die before their 18th birthday.
However, this devastating condition has lacked awareness and, importantly, the research attention needed to work toward treatments and a cure, according to Science Alert.
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Childhood dementia, causes
Most types of childhood dementia are caused by mutations (or errors) in our DNA. These errors lead to a number of rare genetic disorders, which in turn cause childhood dementia.
Two-thirds of childhood dementia disorders are caused by “inborn errors of metabolism.” This means that the metabolic pathways involved in breaking down carbohydrates, lipids, fatty acids and proteins in the body do not work.
As a result, nerve pathways fail to function, neurons (nerve cells that send messages around the body) die, and progressive cognitive decline occurs.
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What happens to children with childhood dementia
Childhood dementia – PHOTO: Freepik
Most children initially seem unaffected. But after a period of apparently normal development, children with childhood dementia gradually lose all previously acquired skills and abilities, such as speaking, walking, learning, remembering and reasoning.
Childhood dementia also leads to significant changes in behavior such as aggression and hyperactivity. Severe sleep disturbance is common and vision and hearing may also be affected. Many children have seizures.
The age at which symptoms begin can vary, also depending on the specific genetic disorder causing dementia, but the average is around two years. Symptoms are caused by significant and progressive brain damage.
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Childhood dementia, treatment
Treatments for childhood dementia currently under evaluation or approved are for a very limited number of disorders and are only available in some parts of the world. These include gene replacement, genetically modified cell therapy, and protein or enzyme therapy.
Enzyme replacement therapy is available in Australia for a form of childhood dementia. These therapies try to “fix” the problems that cause the disease and have shown promising results.
Other experimental therapies include those that target faulty protein production or reduce inflammation in the brain.
Few research studies
“Death rates for Australian children with cancer almost halved between 1997 and 2017 thanks to research that allowed more treatments to be developed. But in recent decades, nothing has changed for children with dementia.
From 2017–2023, childhood cancer research received more than four times more funding per patient than childhood dementia funding. This is despite the fact that childhood dementia causes a similar number of deaths each year as childhood cancer.
The success of childhood cancer sufferers in recent decades demonstrates how adequate funding of medical research can lead to improvements in patient outcomes. Another obstacle for childhood dementia patients in Australia is the lack of access to clinical trials. A review published in March this year found that as of December 2023, only two clinical trials were recruiting patients with childhood dementia in Australia.
However, worldwide, 54 trials were recruiting, meaning Australian patients and their families are left to watch as patients in other parts of the world receive potentially life-saving treatments with no solution for them.
However, we have seen a slowdown in the establishment of clinical trials for childhood dementia worldwide in recent years. In addition, we know from consultation with families that current care and support systems are not meeting the needs of children with dementia and their families,” the researchers say.
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