Psychological difficulties in boys with Duchenne muscular dystrophy vary with age

Duchenne muscular dystrophy (DMD) is a rare inherited disorder that causes progressive loss of muscle function. Because the protein dystrophin is also found in the brain, the disease can affect cognitive functions and behaviours. However, few studies have examined how these difficulties vary across different developmental stages during childhood and adolescence.

Psychological difficulties vary across developmental stages

In his doctoral thesis, psychologist Jonas Gillenstrand investigated differences in intelligence, executive functions and behaviours among boys with DMD at the ages of 5, 8, 11 and 14. The studies take a developmental psychology perspective, considering both the child's cognitive abilities and the family's resources.

“We found clear age-related differences. On average, behavioural problems  were reported as minor at age five, more common at age eight and most pronounced at age eleven. Fewer behavioural problems were seen among the 14-year-olds than among the 11-year-olds,” says Jonas Gillenstrand.

The child's and family's circumstances interact

The thesis shows that the occurrence of behavioural problems is associated with several factors. In addition to the child's intelligence and executive functions, parents' perceived life satisfaction was also associated with the extent of the behavioural difficulties reported.

“The findings show that a child's development needs to be understood in context. Focusing solely on the medical condition is not enough. The family's situation and the child's cognitive development also affect how well everyday life functions,” says Jonas Gillenstrand.

Could lead to earlier and more preventive support

The findings could help healthcare and rehabilitation services better plan when psychological interventions are most needed. Medical care and support for physical functioning are often well developed, but the findings show that psychological support also needs to be adapted to the child's developmental stage. 

“If we can identify the developmental stages during which the risk of difficulties is greater, we can also offer support earlier. This could improve quality of life for both boys with DMD and their families,” says Jonas Gillenstrand.

By Katarina Englund and Jonas Gillenstrand