Working with consultants from Dementia Support Australia, a team has described how the behavioural symptoms of two children with dementia improved after implementing targeted, person-centred treatment.
Childhood dementia is a group of over 100 rare and fatal genetic disorders. All of these disorders involve cognitive decline, the loss of previously learned skills, and behaviours and psychological symptoms of dementia.
For many childhood dementias, behavioural and psychological symptoms can significantly impact the whole family. There are also limited studies or records of clinical experience in children with dementia to inform the management of these symptoms.
To help in closing this gap, the team detailed the behavioural and psychological symptoms of two children, one with Sanfilippo syndrome and another with juvenile-onset Batten disease, some of the most common forms of childhood dementia worldwide.
The children were referred to Dementia Support Australia (DSA), a nationwide service in Australia that helps families and care teams with dementia behaviour support. The DSA consultants found behavioural symptoms in these children included anxiety, irritability, agitation and aggression. After observing these behaviours, the consultants identified potential contributing factors such as pain and over- or under-stimulation.
They suggested targeted, person-centred psychosocial treatment for each child, such as reducing overstimulation, establishing a routine, and altering communication techniques. Only 12-16 weeks after their implementation, both families and caregivers reported an improvement in the child’s behavioural and psychological symptoms.
While these case reports show improvement in behavioural symptoms is possible with targeted, person-centred treatment, every child with dementia is different. The stressors or factors contributing to behavioural symptoms will vary between children, depending on the stage of disease and environmental factors. Nevertheless, this study presents an important step forward to help families and caregivers of people with these and other childhood dementias to consider potential management strategies.
More information on how to contact Dementia Support Australia or submit a referral for their services can be found on their website: https://www.dementia.com.au/childhood-dementia-support
