Cerebral palsy affects muscle control and movement and is caused by injury to the brain around the time of birth. Until recently, there was little research on the long-term effects of the disorder, but new studies are starting to shed light on the difficulties people with the condition face as they age. Our latest study, published in JAMA Neurology, adds to that knowledge.
We used UK primary care data to look at clinician diagnoses of depression and anxiety in 1,705 adults with cerebral palsy, aged 18-89 between 1987 to 2015. The adults with cerebral palsy were compared to 5,115 adults who were the same age, sex and from the same primary care practice. We found that adults with cerebral palsy had a 28% increased risk of being diagnosed with depression and a 40% greater risk of being diagnosed with anxiety, compared with the matched population.
So why does cerebral palsy lead to an increased risk of depression and anxiety? There are several possible reasons. One is that these mental health disorders develop because of pain or fatigue, which are common in adults with cerebral palsy. And pain and fatigue have both been linked to poorer mental health in the general population.
Beyond possible physical causes of worsening mental health in adults with cerebral palsy, people in this group also experience difficulties with employment, stigma and loneliness. They also find it harder to get around, and this loss of mobility might lead to depressed mood.
The reality is that it is probably a combination of the above factors that lead to worsening mental health in adults with cerebral palsy, but we can only speculate because of the lack of research in this area. This lack of research is probably linked to the fact that cerebral palsy used to be considered a childhood condition. But many people with cerebral palsy can expect to have a normal life expectancy. It is estimated that by 2031 there will be a threefold increase in the number of people with cerebral palsy over the age of 65.
Lack of research, lack of knowledge
This lack of research into ageing with cerebral palsy has a direct effect on the care services that are provided for cerebral palsy. Children with cerebral palsy usually have access to specialised care, but as adults, they are discharged from these services and often struggle to find health professionals with knowledge of their condition. (There is even evidence that medical students don’t understand what cerebral palsy is.) The struggle to find care could also have an effect on the mental health of adults with cerebral palsy.
So what can we do to improve the psychological well-being of adults with this condition? The first step is getting researchers to do more studies on ageing with this condition. Although this is starting to happen in the US, Canada and the UK, a lot of the work focuses on physical health. But our work suggests that mental health should also be considered by researchers.