Caregiving for PBA
Actor portrayal. Not real patients.
Supporting Your Loved One as a Caregiver
Caring for someone living with a neurological disorder or brain injury can be difficult. You may observe your loved one feeling overwhelmed, stressed, anxious, or they may be more emotional than before. This may be a natural response to the daily challenges of living with a serious health condition and may be situational or a sign of depression.
However, if you are observing episodes of uncontrollable crying and/or laughing that are sudden, frequent, confusing, disruptive, and either exaggerated or mismatched to the situation, it could be a sign of PBA. Pseudobulbar Affect (PBA) is common in people with certain neurological conditions or brain injury. PBA is a neurologic disorder caused by damage in the brain that impacts the expression of emotion.
PBA Is Separate From The Underlying Condition
PBA can be difficult to recognize and often goes undiagnosed because people with neurological conditions like Alzheimer disease, multiple sclerosis (MS), or a traumatic brain injury (TBI) can display a multitude of symptoms. Uncontrollable laughing and/or crying may be misattributed to the underlying condition, mood changes, or depression. It may not be clear right away that your loved one is experiencing PBA — a condition separate from their neurologic condition or brain injury.
As a caregiver, you play an important role in your loved one’s care team and are in a special position to help make an impact. If you think your loved one may have PBA, take these steps to be a critical advocate:
The Impact of PBA
The impact of PBA can go beyond the physical symptoms and can present a considerable burden in addition to the difficulties of living with a neurologic condition or brain injury. For many patients, the unpredictability of their uncontrollable crying and/or laughing episodes may cause them to avoid social situations or activities in public. Watching a loved one struggle with an underlying condition is challenging, and the addition of PBA symptoms, particularly if undiagnosed or untreated, may compound the difficulty.
If you think your loved one’s uncontrollable crying and/or laughing episodes might be PBA, consider taking the PBA Quiz on their behalf or encourage them to take it themself. It’s a short, 7-question assessment that can help determine if their symptoms may suggest PBA.
How can I support my loved one living with PBA?
How can I support my loved one living with PBA?
Be a sounding board for your loved one. Listen to their frustrations, concerns, and needs so you can support them effectively. If they seem to be struggling and begin to isolate themselves, lose hope, or appear depressed, be there for them and let them know they aren’t alone.
Remind them that PBA is a neurological condition, resulting from their underlying condition or brain injury. It is not something they can typically control and should not feel badly about it.
Don’t forget that you require care too. Go for a walk, try relaxation techniques like meditation or breathing exercises, listen to music, or enjoy a cup of tea. You may also consider seeking out other caregivers to build your own support network either online or in-person.
I could see that [my PBA] wears on the family after a year of going through this, after everything revolved around me and my care and my health and my recovery, and it definitely took its toll.
Carol, a patient living with traumatic brain injury and PBA
Individual results vary. Carol is a real patient living with PBA. Image reflects patient’s health status at the time the image was captured.
Talking to a Doctor
Your role as a caregiver and advocate for your loved one is critical in their journey to a potential PBA diagnosis. Encourage your loved one to make an appointment with a doctor who treats neurological conditions and is familiar with PBA.
Once a doctor’s appointment has been made, make sure to prepare ahead of time. Plan to attend the appointment with your loved one if you are able. You can be there to support them during their conversation and it’s possible you may have noticed things about their episodes that they may not have been aware of. Also plan to bring any documentation you may have that is relevant to their condition or symptoms to help frame the conversation.
Helpful things to bring may include:
The Episode Tracker from the PBA Treatment Guide
See Page 7 of the PBA Treatment Guide for a fillable Episode Tracker tool that can be used to show the doctor how frequently your loved one is experiencing symptoms.
This will detail your loved one’s primary condition, the impact of the symptoms, and the results of the CNS-LS symptoms assessment.
Documenting specific examples of the physical and lifestyle impacts to share with your loved one’s doctor could be critical to an accurate PBA diagnosis.
How can I support my loved one during their appointment?
How can I support my loved one during their appointment?
Go with your loved one to their doctor’s appointments and help initiate discussion about PBA episodes by sharing your observations. Maintaining medical records pertaining to their underlying condition and health history can also be valuable.
Be informed and confident about speaking up on your loved one’s behalf. Your loved one may not proactively bring up their symptoms because they don’t understand or are too embarrassed to talk about what they have been experiencing.
Describe your loved one’s episodes with their doctor, including the impact they are having on your loved one’s daily life. Share your concerns and make sure the doctor understands. Not all doctors have experience treating PBA, which can make it difficult to identify and accurately diagnose. Your documentation of your loved one’s symptoms could be critical in making an accurate PBA diagnosis.
I would go to the doctor’s office [with my mom] and explain to them that she’s not just crying to be crying. She’s crying because she can’t control it.
Liyah, a PBA caregiver
Individual results vary. Liyah is a caregiver for a real patient living with PBA. Image reflects patient’s health status at the time the image was captured.
PBA Is Treatable
If your loved one receives a PBA diagnosis, treatment is available. NUEDEXTA is proven to reduce PBA episodes. Understanding the efficacy of NUEDEXTA is important so your loved one will know what they can expect when they go on treatment.
Is Your Loved One Still Seeking an Accurate Diagnosis?
They aren’t alone. Some doctors don’t consider PBA right away. Learn about what goes into a PBA diagnosis.
Jill (left) is a real patient living with PBA. The other person depicted is not a real doctor. Image reflects patient’s health status at the time the image was captured.
Has Your Loved One Started Taking NUEDEXTA?
Seeing results with NUEDEXTA takes time. Make sure your loved one follows their doctor’s guidance.
Jill is a real patient living with PBA. Image reflects patient’s health status at the time the image was captured.
