Foundation Guide

A Tour of Our Global Community of Giving

Foundation Guide

A Tour of Our Global Community of Giving

Childhood Dementia: What You Need to Know

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Childhood dementia is caused by complex genetic disorders that result in progressive brain damage. Children affected by these disorders need high levels of care and have poor quality of life that impacts their whole family unit. The diagnosis is devastating for parents, while other children and young people within the affected child’s family group and social circle also need support to understand what dementia is and cope with the situation and their own feelings.

What is Childhood Dementia?

We usually associate dementia with later life and the elderly, but hundreds of thousands of children all over the world also suffer from dementia, caused by more than 100 rare, neurodegenerative and metabolic disorders. There is no known cure for any of them.

Many of the symptoms of childhood dementia are the same as those for adult sufferers – memory loss, confusion, personality changes, loss of speech, disturbed sleep and more. Children may also suffer from seizures and lose their vision and hearing. Childhood dementia is progressive, and over time the children lose skills they have already developed, like the ability to walk, talk, read and write. As the brain is increasingly damaged, it gradually loses the ability to maintain adequate physical function and ultimately is unable to keep the body alive at all. In nearly all cases, the child will die before reaching adulthood. In fact, half of all children with dementia die by the age of 10.

With little funding available, little research has been done into treating or slowing childhood dementia, despite having similar prevalence and incidence to other well-known and much-studied diseases like cystic fibrosis and childhood cancer. Per patient, childhood dementia attracts 12 times fewer clinical trials than childhood cancer.

The Hospital Research Foundation

In 2021, a $75,000 grant from The Hospital Research Foundation (THRF) group focused on providing concrete assistance and support for children with dementia and their families. The funding went directly towards the creation of patient and research networks to identify and connect families whose children have dementia, raising awareness about this debilitating and fatal condition. Connected and empowered in a community of carers of childhood dementia, families are better able to access appropriate support in a timely fashion.

Resources for families dealing with childhood dementia

There are several organizations that provide information and support for families and children dealing with dementia. In the UK, Childline is a free, private and confidential service which offers support by phone and online for children and young people to talk about any worries or concerns they might have. Young Minds is a charity dedicated to supporting and improving the mental health of children and young people. It also offers a telephone line for concerned parents.

Dementia UK provides resources about dementia specifically for young people, including videos for children and a YouTube channel, while Dementia Explained is the Alzheimer’s Research website section that provides age-appropriate information about dementia for children and young people across three age ranges.

The Australian website Dementia In My Family also offers age-appropriate information about dementia separated by ages, from pre-school to 16+. The Dragon Story is a four-minute cartoon for 5 to 9 year olds that explains dementia and how it can affect family members. It can be found on the Glorious Opportunity website, along with a downloadable resource pack of themes for discussion and activities for children.

Awareness and Research as Solution

One in every 2900 babies is born with one of the rare neurodegenerative disorders that causes childhood dementia, yet most people have never heard of it. As research increases, it is highly likely that even more conditions will be identified as underlying genetic causes. Information and education are needed, to guarantee access to timely and quality health and social care for affected children and their families.

By raising awareness across communities, governments, health and social care providers, progress can be driven, and solutions actioned. Investment in research is desperately necessary to accelerate the development of therapies that change lives, until ‘childhood’ and ‘dementia’ become two words that are no longer used together.

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