Depression
Salinas identifies depression as the most common personality change after stroke, affecting up to one-third of survivors at some point in their recovery. Its effects can also run the gamut from flat to upset, from sad to angry. “So, you do get moves in both directions, either more emotion or less, but it’s usually one or the other,” Borson said.
Postal distinguishes between two types of depression. Reactive depression develops in response to the many losses that result from a stroke. “There’s also physiological depression where the world just seems less vibrant and you perceive things in a more negative manner,” Postal said. “It is hard to perceive and experience pleasure.”
Then there are some changes from stroke that, to the outside observer, look like depression but are something else. Pseudobulbar affect (PBA) is one example (more about this below); apathy is another, which she explains this way: “The frontal lobe is responsible for planning and initiating activities, and in some people after stroke, … (the frontal lobe) is not planning or initiating things,” Postal said. “Someone with a stroke might be able to articulate a to-do list but they can’t begin it. They’ll just sit in a holding state. To family members, it looks like Mom’s depressed because she doesn’t engage in any activity. Sometimes that is true with depression, but other times when we really get down to it, she’s not feeling sad or worthless or helpless. She’s just not able to initiate activity. So, there’s a whole array of layered symptoms and reactions and changes in emotional expression and perception that can all be present at once, creating that depressive picture.”
Depression also affects motivation, which impacts all areas of recovery and is why all three doctors emphasized that it was important to get it assessed and treated early — usually with a combination of medication and psychotherapy. And being around family, friends and others through support groups also helps.
Pseudobulbar Affect & Emotional Intensity
Stroke also may cause pseudobulbar affect (PBA), which is characterized by demonstrating intense and inappropriate emotions — laughing at a funeral; crying at a joke. “Survivors may seemingly have a very strong emotional display or response, but they are not actually feeling it that intensely,” Borson said. This is also called emotional lability.
The episodes of laughing or crying are generally brief, seconds to a few minutes. “In pseudobulbar affect, there’s a disruption in how the frontal (motor and sensory) regions, temporal cortex, brain stem and the cerebellum are working together” Salinas said. It may look like depression and is often treated with antidepressants, though not very successfully. “The good news is there is a newer FDA-approved medication for pseudobulbar affect called Nuedexta®.”
There are other survivors who, unlike those with PBA, feel their emotions intensely. This is generally connected to a lesion in the frontal cortex, which regulates emotions. How severe the injury is, and whether other parts of the brain can gradually start to take over some of it, determines how persistent it is, Borson said.
Lashing Out
Occasionally we hear from family members who report survivors who lash out. Typically this takes the form of verbal abuse only, says psychologist Barry Jacobs, Psy.D., director of behavioral sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, Pa., and author of The Emotional Survival Guide for Caregivers.
Borson indicated that this is often a depressive reaction because they are upset and frustrated at their situation. “People’s ability to do regular activities like dressing themselves or driving may be greatly diminished. For many people, they react to that with anger, as well as depression,” he said.
For most survivors, this is transitional and lessens as they adjust to their new circumstances, he said. As they get better and function on a higher level, they feel better about themselves and the future. “There are a small number of survivors where, because of where the stroke occurred, there’s a real release of aggressive behavior,” he said.
Strokes can lead to depression and impulsivity both of which can contribute to lashing out. Pre-stroke predispositions, like a short temper, can also play a part, said Salinas.
One unfortunate and painful aspect of this behavior is that it is very often directed at caregivers, particularly if there is a frontal lobe injury, which is associated with loss of empathy and impulse control. Survivors who are frustrated at their losses and clinically depressed may take those feelings out on those closest to them.
“Patients who are depressed sometimes have a tendency to take their frustrations out on others, especially those whom they trust the most and are closest to,” Jacobs said. “Survivors who have some frontal lobe involvement have less capacity for inhibiting their impulses than the rest of us do. Depressed, impulsive survivors are the ones most likely to verbally lash out.”
He urges medical evaluation and intervention from a neurologist, psychiatrist or neuropsychiatrist to try to curb this behavior with medication, particularly those that help people gain control over their impulses as well as antidepressants.
Jacobs emphasizes that medical intervention is key to improving the caregiver’s situation. “The best thing a caregiver in this situation can do is get their loved one to a doctor, because medication can help in most of these cases,” he said. For more on abusive behavior after stroke, see our archived article, When Loved Ones Lash Out.
Sexuality
Sexuality often changes after stroke. Though occasionally a survivor’s sexuality increases, the more typical reaction is diminished sexual expression. “Most people find that they have trouble with sexual interest or activity after a stroke, especially if they’re older and/ or become physically disabled,” Salinas said. Intimacy is complex, and stroke can have a dramatic effect, especially if caregiving is involved. Depression has an impact as well. “Also, other medical issues like diabetes and vascular disease impact sexual dysfunction. Actually, older medications such as beta blockers to treat your hypertension have an impact on your sexuality.”
Regarding the opposite, hypersexuality is described in the literature but all agreed it is rare. “It seems to be associated with strokes in the part of the brain called the temporal lobe,” Borson said. In some survivors, the ability to regulate their emotions is affected, and their judgment is off. “They don’t know what’s okay and what’s not. They may think that it’s okay to act on their sexual feelings. Their inhibitions are released, their self-control is reduced. So, it takes the form of a variety of different emotional drives and emotion-related behaviors, but it’s not specifically sexual; it’s more just that they are uninhibited.”
Because of societal strictures on sexual behavior, behavioral interventions may be necessary in cases of hypersexuality. For some survivors, a simple explanation of how the behavior is inappropriate may be enough. Other suggestions include not watching TV shows or looking at magazines that trigger the behavior; wearing clothing that is difficult to remove; encouraging and rewarding displays of affection that aren’t sexual; and engaging in group activities, which allow survivors to feel connected.
PTSD and Anxiety
PTSD is much in the news these days. It is typically the result of a life-threatening or traumatic experience to which a person has developed an intense emotional reaction. They fear it happening again; they have nightmares about it; flashbacks as well as overwhelming physical reactions when exposed to any reminders of the experience. The classic example is a soldier’s experience in combat, but it is increasingly diagnosed among survivors of traumatic events. In a 2013 study of stroke survivors and PTSD, 23 percent were diagnosed with it within one year and 11 percent after one year.
PTSD is a new diagnosis as relates to stroke, and none of our experts had seen it much in their practices, though they all agreed that anxiety was common after stroke or other medical event. “So, if they have anything that seems to resemble the beginning of a stroke, their reaction may be quite extreme, fearful that it is happening again,” Borson said. “It may, of course, occasionally be the case that they are having another stroke, but usually they are not.”
“One of the most common emotional problems that people experience with stroke is anxiety,” Salinas said. “After a stroke, people often worry about getting around or driving, finances, family, his or her future especially if he or she is having cognitive issues.”
Other potential sources of anxiety after stroke are fear of falling because of balance deficits or being anxious about speaking because of aphasia. “People can become socially anxious when they’re not able to speak the way that they’re used to,” Postal said. “That is why rehabilitation hospitals use therapy dogs in speech therapy — because people are very shy and anxious about trying to speak in front of another human being, but they don’t feel that way in front of dogs because dogs are so loving and non-judgmental.”
“Anxiety is something that I think counseling can be very helpful with,” Borson said. “That would be my recommendation if someone’s having this sort of reaction. Sometimes there are elements of both anxiety and depression, so it may be worth trying medication as well.”
Lack of Awareness
Postal identifies another type of personality change that sometimes happens in survivors of right hemisphere strokes — a profound lack of awareness of problems that the stroke caused. They might have no idea that one leg doesn’t work or that they have terrible trouble with memory or can’t see half of their visual field. “The fancy term for this is anosognosia,” Postal said. “It’s a profound personality change in your ability to monitor yourself. It doesn’t always happen with right hemisphere strokes, but we know it’s something to look out for after one.”
Postal says the awareness deficit is difficult to treat because the part of the brain in charge of awareness is broken. Family members often mistake this for denial, that the survivor is in denial about the effects of their stroke. “It’s not really denial, which you can break through if you keep talking and force them to see the issue,” she said. “That strategy is spectacularly unsuccessful with a neurologically based anosognosia.
“One of the best ways to address it is to pull the family members in for sessions and explain that it’s just not going to work to have the expectation that they’re going to have awareness. This is a brain-based issue. When families accept that that part can’t work, it really reduces the tension.
“It’s just so difficult to care for someone who doesn’t know they need care. Luckily, with stroke, a lot of times that lack of awareness improves over time. If the brain heals, that can improve and be less problematic. But it really is a huge source of caregiver burden,” she said.
Borson emphasizes that personality changes after stroke are sometimes “adjustment reactions.” “They may not know what they can’t do or what they need help with,” he said. Once they start to make those adjustments and deal with their new circumstance, a lot of frustration, anger and depression calm down.
“There are some things that are permanent, and some people may always have some trouble with being more emotional than they were before,” he said. “Other people will tend to be flat and unemotional. But I do think that it’s worth trying to help someone adjust and cope with what’s happened to them. They may be left with residual effects due to the brain damage, but you want to try to get the stuff that has to do with the psychological changes better as much as possible. That’s a valuable thing for family members to do — help someone see a positive future.”
“For survivors experiencing changes in emotions, the best thing is to schedule time with your stroke professional — a neurologist, neuropsychologist or physiatrist — and try to tease out what’s physical, what’s reactive and what might be some demands that family members are making that patients really can’t fulfill in that moment,” Postal said. “And know that in all likelihood it will get better over time. We know now the brain is very plastic and malleable, and if you spend time working on a particular skill, you create changes in the brain at the cellular level. So that process occurs whether you’re practicing using a limb that’s not working as well as it should or practicing your speech, you always have the opportunity to improve over time.”
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