Childhood dementia: causes, symptoms, support for bereaved families

Dementia and childhood are two words that shouldn’t go together, but unfortunately, they do. Across the globe, one in 2,800 babies are born with a rare genetic condition that can lead to dementia in their childhood. 

This article covers what childhood dementia is and what are the causes and symptoms of this rare disease. We also delve into the lack of research and support available for bereaved families in Australia.

Key points:

• Around 700,000 children and young people around the globe live with childhood dementia 

• Median life expectancy for a child with dementia is nine years and approximately 75 percent of children with the condition will die before they reach their 18th birthday
• The number of children who die each year from dementia in developed countries, is equivalent to those who die of cancer

Just like dementia in adults, every child’s experience with dementia is different — they often suffer from severe anxiety and fear, confusion, sleep deprivation, memory loss and hallucinations among various other symptoms. 

Of the 70 different rare genetic conditions in children that can lead to dementia, Niemann-Pick type-C, Sanfillipo syndrome and Batten disease are the most common disorders that can be diagnosed early in life. Regardless of the genetic cause the trajectory pattern of the disease progression is consistent across all types of childhood dementia. 

Early diagnosis of dementia in children is difficult and often delayed. It is commonly dismissed or downplayed by medical professionals and sometimes these symptoms are confused with attention-deficit/hyperactivity disorder (ADHD) or other developmental disorders like autism.

Globally, there has been very little time and money invested in research and development towards childhood dementia. The Federal Government has historically excluded research into childhood dementia and statistically speaking, children living with dementia are largely unaccounted for in key data sets nationally.

As a world first, earlier this month, Scotland released their 10-year dementia strategy which included a small section about research in the space of childhood dementia. The dementia community has high expectations from the Australian Health Department ahead of the launch of the National Dementia Action Plan. The community has called for the inclusion of people with lived experience to create relevant and effective reforms. 

The Plan has the potential to be the first national policy anywhere in the world to include children in a meaningful way and potentially making way as world leaders in this space for more funding and research.

In 2022, the Federal Government’s Medical Research Future Fund announced that it would allocate three million dollars for research in the childhood dementia space — which is a drop in the ocean, but a starting point the dementia community desperately needed.

Typically, children with dementia qualify for funding and support under the National Disability Insurance Scheme (NDIS). The services and support available for families include various types of therapies and counselling services. For those individuals whose diagnosis hampers movement, the NDIS offers mobility equipment and services to help them with household and personal activities. 

Once families receive the diagnosis for their children, they have to navigate through a vast healthcare sector to find the supports and services that best suit their children’s needs. Families may have to hone their instincts and research the condition to develop a level of expertise in order to find adequate support in the general sector on behalf of their children.

There are currently no specific services that cater to children with dementia in Australia.

“Many existing paediatric services are just not fit for purpose,” says Megan Maack, chief executive officer (CEO) and director of the Childhood Dementia Initiative.

“For example, support and respite services for children with life limiting conditions are typically offered by local paediatric hospices. However, it’s been reported that children with dementia are often turned away from these services due to their behavioural issues,” she adds.

For more information, please visit the Childhood Dementia Initiative, Dementia Australia and Dementia Support Australia to find support.