Childhood dementia results from progressive brain damage and is caused by over 70 rare genetic disorders. Most children die before turning 18. Previous research established that families experiencing childhood dementia had challenges interacting with health and social care systems, expressing they 'do not fit’. 

 

Childhood Dementia Initiative (CDI) partnered with Nous Group to conduct targeted research in order to articulate and represent the ‘lived experience’ of families in their interactions with care and support services and identify the key challenges and opportunities for change. 

 

A convenience sample invited participation from parents subscribed to the CDI Family Advocate database. Semi-structured interviews were conducted via Zoom and facilitated by representatives from Nous. Interviews were recorded with the consent of participants and transcribed using Otter. Key themes were identified using thematic analysis.

 

Eight parents (8 mothers, n=5 caring; n=3 bereaved) consented to participate in an interview. Six themes emerged: 1. Conditions that cause childhood dementia are rare, difficult to diagnose and diverse, which results in delayed diagnosis, 2. Following diagnosis, there is no defined care pathway and parents find it difficult to navigate care and support to meet their child’s needs, 3. Parents become project managers for their child’s care, experiencing a high administrative burden, 4. Paediatric palliative care can fill a navigation and coordination gap but is not consistently accessed, 5. NDIS packages are essential support for families, but are universally challenging to access and manage, 6. Following the death of their child families find comfort in informal and formal supports, yet these can be difficult to access and sustain.

 

Families living with childhood dementia state they ‘do not fit’ in current care and support structures. This research will enable advocacy and systemic change to ensure appropriate, equitable and high-quality care for children and families affected by childhood dementia.