Childhood dementia, a condition often associated with old age, is surprisingly common in children. It refers to a group of genetic disorders that affect a child’s memory, ability to walk, talk, and recognize loved ones. The impact of this disease on children and their families is devastating, as they witness the gradual loss of skills and the transformation of their loved ones.
One mother, Niki Markou, shares her experience with her daughter, Angelina, who was diagnosed with Lafora disease at the age of 14. The news was shocking, as most people associate dementia with older individuals. For Angelina, dementia not only took away her abilities but also crushed her dreams of leading a normal teenage life. Simple activities, like styling her hair or pursuing her passion for beauty and makeup, became impossible, leading to frustration and tears.
Childhood dementia is caused by 145 individual genetic disorders, each of which is rare. This rarity makes it challenging for researchers and health planners to fully understand and effectively treat the disease. To bridge this knowledge gap, a recent study analyzed global data to shed light on childhood dementia. The study revealed that over 100 babies born in Australia each year develop childhood dementia, causing a significant number of deaths, comparable to conditions like cystic fibrosis and childhood cancer.
Unfortunately, the resources and support systems available for childhood onset dementia are limited compared to those for adults. University of Adelaide paediatric neurologist Nicholas Smith emphasizes the importance of providing adequate support for children with dementia, emphasizing that these supports are no less crucial for children than for adults. However, due to the lack of awareness surrounding childhood dementia, accessing appropriate medical care and support, such as National Disability Insurance Scheme (NDIS) assistance, can be a challenge for families like Niki Markou’s.
In light of these challenges, Ms. Markou hopes that increased awareness of childhood dementia will lead to more funding and the establishment of youth hospices. Providing necessary resources and care for children with dementia is essential to improve their quality of life and support their families during this difficult journey.
Sources:
– The original article by AAP, 2023
