1/2900 babies born have one of the over 100 neurodegenerative genetic disorders associated with developing a Childhood Dementia Syndrome. Patients suffering from Childhood Dementia Syndromes usually have normal development initially, before developing symptoms before the age of 18 years old, which progress over years, or potentially even decades.¹ Around 90 patients die each year in Australia from a Childhood Dementia. Given the progressive, life-limiting nature of the diagnosis, these patients and their families may receive care in Children’s or Adolescent and Young Adult Hospices, whether for elective respite, complex symptom management or end of life care as well as from community palliative care teams and hospital palliative care consultation services.

A Childhood Dementia Initiative report of 2024 noted key issues including a severe lack of knowledge and understanding and a chronic absence of expert care. These then lead to increased parental burden, disempowerment of families, risk to children’s safety and neglect and inequity of care.²

This presentation will highlight the role of cross-service care for patients with a Childhood Dementia Syndrome. This includes Dementia Support Australia, Childhood Dementia Initiative, NDIS, Community Specialist Palliative Care team, outpatient specialist medical consultant teams and the specialist multidisciplinary team at the Adolescent and Young Adult Hospice (including clinical psychologist, psychiatrist, occupational therapist, physiotherapist, art and music therapists, speech pathologist, dietitian and bereavement support worker) with a case presentation of a 20 year old with a Childhood Dementia Syndrome.

References

1. Elvidge K, Christodoulou J, Farrar M, Tilden D, Maack M, Valeri M, Ellis M, Smith N J C, Childhood Dementia Working Group. The collective burden of childhood dementia: a scoping review. Brain 2023;146:4446–4455

2. Childhood Dementia Initiative 2024. Childhood Dementia: Family experiences of health systems in New South Wales, https://www.childhooddementia.org/getasset/425L8Q March 2024 Sydney Australia.