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Your child’s primary physician and complex care clinician can assess for other problems that worsen behavior dysregulation. A neurologist and palliative care clinician can consider medications and recommend strategies to manage challenging behavior. An occupational therapist or physical therapist may be able to suggest exercises and home modifications to assist with the activities of daily living.
Behavior Changes and Dementia
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Behavior changes occur in some children with SNI, particularly those who have progressive conditions that affect more of the brain over time. Some become more impulsive or irritable, whereas others become less engaged and active. Some may lose the ability to control their emotions or complete tasks they used to be able to perform easily. Changes in the physical body, such as problems with swallowing and walking, seizures, spasticity, loss of vision and hearing, can accompany cognitive and behavior changes, making the circumstances even more challenging to manage. Some clinicians use the diagnosis of dementia to describe these behavior changes in children. The term refers to the loss of cognitive abilities, such as thinking, remembering, planning, and problem-solving.
ESP Behavior changes can fluctuate, but in some cases–dementia in particular–they are permanent and may worsen over time. With dementia there are changes in a child’s ability to think, learn and act like themselves; over time, these abilities are lost. You may find it helpful to consult with experts in your child’s specific disease, including doctors, disease-specific organizations, and other parents who have experience with managing similar circumstances.
Some children display agitation and aggression as part of their behavior changes. Episodes can be triggered by physical discomfort, environmental factors, or frustration at their inability to communicate. Many parents feel that managing agitation or dementia is one of the greatest challenges in caring for a child with SNI, because of the intensity and emotional burden of these events. Some families are able to adapt their home to accommodate restless behavior and also work to find strategies that calm or distract their child (such as a favorite toy or video). Medications may also help.
Sundowning is the increase of agitation in the evening, and commonly occurs with dementia. Changes in light, sleep patterns and fatigue can contribute to sundowning. Use of a light therapy lamp, limited day-time napping and increased daytime activity can help with sundowning.
Excessive or uncontrollable laughing or crying (called pseudobulbar affect) can occur in some children, and may be mistaken for a mood disorder, such as anxiety or depression. Medication may be considered after a thorough assessment.
Some children with behavior changes will hallucinate, hearing or seeing something that is not really happening. We experience the world through our senses (sight, taste, touch, sound, smell). In SNI the pathways affecting the senses are altered, which can make it hard for the child to understand their environment. This may become disoriented or scared. Calming strategies using tactile or environment cues such as preferred blankets, calming music, etc. can be helpful in these circumstances.
Although medications may improve some behaviors, non-medication strategies can sometimes be more effective. They can include:
- Changing your child’s environment and/or removing sound, light or clutter to avoid overstimulation.
- Taking your child for a walk. Physical activity can improve mood, lower anxiety, and increase sleep.
- Adding massage and touch therapy, or just providing a calming hand or foot massage.
- Incorporating soft, soothing music (like that used for meditation) into your child’s daily routine.
- Experimenting with tools that calm the senses: aromatherapy, brushing hair, weighted blanket, a repetitive activity that your child enjoys.
- Distracting your child with a snack or a favorite activity. Redirecting their attention can have a calming effect.
- Maintaining routines to help reduce your child’s stress.
- Acknowledging your child’s frustration: “This is hard. I’m here with you.” Your gentle, reassuring voice can calm them, and acknowledging this challenge will empower you.
- Making soothing physical contact: hugging your child or sitting and holding their hand.
ESP Witnessing your child losing cognitive functioning is perhaps the most difficult aspect of the SNI journey. The loss of skills can creep in slowly over time. Many parents describe this as watching their child slowly disappear. With each loss you will likely experience a new wave of grief, a sadness for the things your child was once able to do. Reframing–thinking and focusing on what your child can still do versus what they cannot do–will help you to continue to see and treasure the special qualities that make your child who they are.
Watching a child struggle to control their own behavior can be particularly upsetting. Some parents feel sadness for the frustration the child seems to experience, or they worry that their child is frightened by their circumstances. Treatment plans for behavior problems can be more challenging to create, because behavior may be influenced by more than one issue. You may feel that your concerns are misunderstood or are being minimized by your child’s medical team. A palliative care clinician can listen to your frustrations, help you communicate your concerns to the medical team, and suggest coping strategies. In some cases, behaviors can create a safety threat to the child or other members of the family, or simply become too difficult to manage in the home setting. In such situations, organized respite care can be very helpful and it may be important to discuss the possibility of out-of-home placement with your medical team.
