Childhood Dementia: The Burden on Kids, Families, and the Need for Support

Childhood Dementia: The Burden on Kids, Families, and the Need for Support

Dementia is commonly associated with old age, but it is also a heartbreaking reality for many children and their families. Childhood dementia, like its geriatric counterpart, refers to a group of genetic disorders that affect a child’s memory, ability to walk, talk, and recognize loved ones. While individually rare, there are 145 different genetic disorders that can cause childhood dementia, making it difficult for researchers and health planners to fully understand and address the disease.

Niki Markou, whose daughter Angelina was diagnosed with Lafora disease when she was 14, describes the shock of learning that her teenager had dementia. For parents like Markou, watching their child lose their abilities, hopes, and dreams is unbearable. Tasks that were once simple, like doing makeup or straightening hair, become impossible and frustrating. Childhood dementia not only robs children of their abilities but also limits their access to support and resources compared to adults with dementia.

A recent study, led by University of Adelaide pediatric neurologist Nicholas Smith, highlights the need for more awareness and resources for childhood dementia. The study found that each year in Australia, over 100 babies will develop childhood dementia, with 91 deaths resulting from the disease. However, the limited awareness of childhood dementia means that health resources and structures for children are insufficient.

Smith emphasizes the importance of support systems for childhood-onset dementia, highlighting that these supports are just as crucial as those for adults. Currently, explaining and obtaining support for a child with dementia can be a challenge for parents, as there is often a lack of understanding and available resources. Markou experienced the difficulty of finding appropriate care for her daughter, with the process taking years before Angelina gained access to a neurological ward.

The recent establishment of Australia’s first Adolescent and Young Adult Hospice provides a vital service for young people with life-limiting illnesses like childhood dementia. These facilities offer respite for both patients and their families, allowing them to receive proper care and support. Markou describes the relief of being able to sleep through the night, something she had not experienced in five years.

Awareness of childhood dementia needs to be heightened to secure more funding and resources for research, support, and youth hospices. By increasing recognition of this devastating disease in children, we can strive to alleviate the burden on kids and their families and provide them with the necessary care and assistance they desperately need.

– AAP News
– The University of Adelaide

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