Finding The Way Back: Integrating into the Community After Brain Injury
What do traffic roundabouts, sideline concussion protocols in youth sports, and the widespread recognition of stroke symptoms have in common?
They are all expressions of a growing societal commitment to understanding and reducing brain injury—and what happens after one occurs. March is Brain Injury Awareness Month, and it offers an opportunity to talk about one of the most consequential chapters in any survivor’s journey: returning home and reintegrating into the community.
The term “continuum of care” has become something of a catchphrase in healthcare. For Dr. Erika Trovato, Associate Chief Medical Officer of Burke Rehabilitation and Director of the Brain Injury Medicine Program, it describes a living reality for every patient she sees. From the moment a patient arrives at Burke following acute hospitalization, the team is already thinking about what comes next—home, community, work, school, and the long road of recovery that extends well beyond a single facility. It includes connecting the patient and caregivers with supportive resources and experts they will need along that journey, including outpatient rehabilitation and the many clinicians who will be part of the ongoing interdisciplinary care team.
One of the first questions Dr. Trovato asks each patient when they arrive at Burke is, 'What are your goals before you leave?' The answers range from the intimately practical—walking to the bathroom independently, going home to family—to longer-term aspirations. But she is quick to note that goal-setting is not a one-time exercise. “Setting goals is going to be dynamic,” she explains. “When you attain those goals, it’s then about being able to set the next set of goals.”
That adaptability is especially important in those first weeks at home. “Home is the best medicine,” Dr. Trovato acknowledges, but returning to a familiar environment yet being unable to fully engage the way one did before can be unexpectedly destabilizing. A patient may be functionally changing from day to day, and there can be an exacerbation of emotion—which, she says, is to be expected.
For Caregivers: Education, Flexibility, and Knowing You Are Not Alone
Recovering from brain injury is not a solo journey, and much of the expertise and education at Burke addresses caregivers. “They’re so important for the recovery of the patient,” says Dr. Trovato, adding that the sooner caregivers are integrated into the process the better. “We don’t want this to be something where the patient’s leaving in three days, and all of a sudden you’re picking up the phone and trying to rush the process.”
Preparation is essential, and so is honest expectation-setting about a fundamental truth of brain injury recovery: the only constant is change. Caregivers need to be ready for both setbacks and breakthroughs. “Be sensitive to change, whether it’s downward or upward,” Dr. Trovato advises. For those changes, it is important to have the right people in your corner, to be connected to a network of care. That can include therapists (physical, occupational, and speech, language and swallowing), physiatrists, primary care physicians, and social workers who can help a caregiver calibrate and cope.
When improvement comes—and Dr. Trovato notes that in the first year, it very likely will—being able to recognize and respond to it matters. “It’s important to celebrate the milestones,” she adds. Small wins are not small. They are the evidence that recovery is real and ongoing.
Behavioral and emotional changes are among the hardest aspects of brain injury for caregivers to absorb. A person who was open, optimistic and steady before their injury may now seem irritable, confused, or emotionally volatile—the result, Dr. Trovato explains, of the injury to the brain itself, not a choice the patient is making. Caregivers who understand this, she says, are better equipped to respond with knowledge rather than react from hurt or confusion.
Quality of Life: What Brings You Joy
Few of us, Dr. Trovato observes, think seriously about quality of life until something interrupts it. A brain injury forces that question into the open—and the answer, she has found, is always personal. At Burke, every patient fills out a “get to know me” board that helps the care team understand who the person is beyond their diagnosis. For one patient, quality of life meant cooking for a multigenerational household. For another, it was rejoining the weekly canasta group at the community center.
“That is at its essence what will end up motivating each person to continue to move forward,” she says. Identifying what a patient genuinely cares about and wants to get back to gives both patient and caregiver a north star, and transforms rehabilitation from an abstract process into a purposeful pursuit.
The Importance of Awareness
Brain injury is more common than most people realize, and awareness is not just a matter of personal interest. It is, Dr. Trovato believes, a community and even a civic responsibility. “We can’t live in a world where just because it doesn’t happen to us, it doesn’t mean that it doesn’t exist,” she says. The roundabouts on our roadways were designed in part to reduce motor vehicle accidents—and have done so. Pulling a young athlete from a game after a potential concussion, understanding what a stroke looks like: these are the kinds of knowledge that, in some way, shape or form, affect everybody.
The umbrella of acquired brain injury is broader than many people know, including traumatic brain injuries from falls or accidents and non-traumatic brain injuries from stroke or tumor. What links these conditions, Dr. Trovato explains, are the deficits people live with—physical, cognitive and behavioral. As the population ages, she adds, the need for expert rehabilitation will only grow.
Research is advancing into how exercise and therapy dosing affect recovery, how brain circuitry can be supported, and how medications might potentiate healing. “There’s a lot of technology, a lot of tools and resources going into how we can enhance quality of life after brain injury,” she says, “which is vital for an increasing older population.”
Recovery after brain injury is not a straight line, and it rarely goes exactly to plan. But for Dr. Trovato, the goal never wavers: support caregivers, set patients up for success, and keep building awareness at every level. “Society, legislature, governments—everyone needs to be clued in about brain injury,” she says, “and what we can do to enhance the potential of all of our patients.”
For More on Recovering From Brain Injury:
Listen & Read
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