Are you familiar with this condition that can affect those with Alzheimer’s disease?
After a parent or loved one receives a diagnosis of Alzheimer’s disease or other dementias, cognitive decline is likely top of mind for caregivers and family members, but behavioral changes can also be challenging and distressing.1 Caregivers and family members may be familiar with common behavioral changes that occur in people living with Alzheimer’s such as depression;1 however, those living with Alzheimer’s can also have another neurologic condition associated with Alzheimer’s and other dementias, and it is important for caregivers to be familiar with the condition and recognize symptoms.
PseudoBulbar Affect, or PBA, is a distinct condition that can happen to people who have been diagnosed with Alzheimer’s and other dementias, multiple sclerosis (MS), Parkinson’s or amyotrophic lateral sclerosis (ALS), or who have suffered from a stroke or a traumatic brain injury. It results in sudden, frequent and uncontrollable episodes of crying and/or laughing that do not match how a person feels.2 It affects about two million people in the United States who suffer from common neurologic diseases or traumatic brain injury, and can affect men and women.3 Although PBA is not life threatening, it can be of concern to both patients and/or caregivers. According to a survey of 499 Alzheimer's/dementia patients (or their caregivers), 9.6% may have PBA. Based on this data, 500,000 people living with Alzheimer’s in the United States may also have PBA.4
These neurologic conditions or brain injury can affect the signals that tell a person’s body when or how much to cry or laugh. This can trigger episodes of crying and/or laughing that are sudden and exaggerated (more intense or lasting longer than expected) or mismatched (not fitting the situation).2 Alzheimer’s disease and other dementias can make PBA especially hard to identify, since sudden episodes of crying can be mistaken for depression or other personality changes associated with dementia and other neurologic comorbidities may also exist. Diagnosing PBA can also be difficult for two key reasons: the symptoms of PBA may look similar to and can overlap with other conditions such as depression, and patients and caregivers tend to use different language than physicians to describe PBA symptoms.
Patients can have both PBA and depression.
Differentiating PBA from depression can be challenging, as patients can have both PBA and depression.2 Patients and caregivers often self-diagnose PBA as depression. Experiencing PBA episodes can be distressing, causing patients to think of the episodes as a sign of depression. And caregivers often are not familiar with PBA so they associate the episodes with signs of depression as well.5 However, PBA and depression are two separate conditions, and both conditions are manageable and should be independently diagnosed.2 Patients, caregivers and physicians tend to describe PBA symptoms differently.
Physicians tend to use more technical terms when talking about PBA, describing crying and/or laughing episodes as “disproportionate to the situation,” which may be difficult to understand. Patients typically use different terms, often emphasizing that episodes do not match their emotions or mood, or are overly emotional. While these words are likely to be understood by physicians, unfortunately patients are often too embarrassed to start the conversation with their doctors.5 “Caregivers note a change in behavior, such as an increase in laughing and/or crying, which may allow them to alert the doctor that there is a health concern that may need to be addressed,” says Jeffrey Cummings, MD, ScD, Director of the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas. “However, often they are not aware that these episodes are inconsistent with the patient’s mood.”
“Because caregivers of people diagnosed with Alzheimer’s and other dementias, MS, Parkinson’s or ALS, or people who have suffered from a stroke or a traumatic brain injury often become the eyes and ears of the patient, it is important they form a clinical alliance with the doctor if symptoms suggestive of PBA are present,” says Dr. Cummings. PBA can be managed if your doctor is aware that the symptoms exist and are bothersome to your loved one or yourself.
To prepare for a discussion with the doctor, you can take a short quiz at www.pbainfo.org on behalf of the person you care for. Your answers may help start a conversation with the doctor.
PBA-0295-OTH-0617
1 Behavioral Symptoms. Alzheimer’s Association. Accessed April 5, 2017. 2 Miller A, Pratt H, Schiffer RB. Pseudobulbar affect: the spectrum of clinical presentations, etiologies and treatments. Expert Rev. Neurother. 11(7), 1077–1088 (2011). 3 Brooks BR, et al. PRISM: A Novel Research Tool to Assess the Prevalence of Pseudobulbar Affect Symptoms across Neurological Conditions. PLoS ONE 8(8): e72232. doi:10.1371/journal.pone.0072232 4 National Institute of Neurological Disorders and Stroke and Work SS, Colamonico JA, Bradley WG, Kaye RE. Pseudobulbar affect: an under-recognized and under-treated neurological disorder. Adv Ther. 2011;28:586-601. 5 Data on file. PBA Patient/Physician Lexicon Research (N=43). Slides 22, 24. February 2017.