The Missing Piece in Stroke Rehabilitation: Emotional and Psychological Care
Stroke is one of the leading causes of disability worldwide. Incidents of stroke have increased dramatically, driven by a significant increase in stroke among young and middle-aged adults. Ischemic stroke rates among young and middle-aged adults have nearly doubled over the last three decades. The World Health Organization (WHO) estimates that 1 in 4 adults now face a lifetime risk of stroke.
The sharp rise and intense impact of stroke across the world has placed a heavy burden on our health care system and especially on survivors and their families. While medical and physical interventions have become much more effective in managing the immediate impact of the stroke, there has been significantly less attention paid to the emotional, psychological, and social aspects of recovery.
Quality of life after stroke is more related to emotional/psychological and social factors than medical and biological factors. It is the emotional, psychological and social aspects of recovery that are more predictive of quality-of-life post-stroke, whereas things like the severity or type of stroke play an important but lesser role.
When someone has a stroke, the medical response is often swift and focused. Clot-busting drugs, surgery, and intensive rehabilitation all target the brain and body. But what happens to the mind and spirit once the immediate crisis passes?
On November 12, I will join Mukul Pandya, a stroke survivor, and his wife Hema Nair, on Ep. 60 of the Shining Light on Shadows podcast, co-hosted by Neil Parekh and Dawn Neuburg, “Beyond Physical Recovery: Mental Health After Stroke” to talk about the psychological and emotional challenges faced by survivors and their families.
Watch the live show Thursday, Nov. 12 at 7pm ET on Facebook*, Twitter**, LinkedIn, YouTube, Instagram** or Neil's website. (You can find more details about the show on his website.)
*Facebook will delete the video in 30 days (approx. December 11).
**We won't know the specific links for Twitter and Instagram until we go live. For now, these links go to Neil's Twitter and Instagram profiles.
The Emotional and Psychological Impact of Stroke
Stroke doesn't just affect movement, speech, or memory. It reshapes identity. It creates an abrupt change to one's life, their family and social roles, values, activities, work, relationships, and family dynamics.
A person who was once independent may suddenly need help with bathing, dressing, or communicating. If someone’s identity is attached to writing, running, working, parenting, or some other cognitive activity, and they are no longer able to engage in that role or activity, they may no longer know who they are, creating a significant disruption in the individual’s self-concept and identity.
Thus, it is no surprise that roughly one in three stroke survivors experience depression, with many also struggling with anxiety, apathy, irritability, isolation, and/or post-traumatic stress symptoms. Some of these changes stem from the injury to the brain itself, while others come from the overwhelming loss of the life they knew.
Untreated depression after stroke is linked to slower physical recovery, poorer engagement in therapy, reduced quality of life, family dysfunction, and higher mortality. Emotional health and physical healing are deeply intertwined, yet they are rarely treated that way. There often exist two silos of treatment, one focused on medical and physical interventions and one that offers psychological and emotional supports.
Unfortunately, emotional supports are often absent from primary medical and rehabilitation services, leaving an intense gap in mental health care for a population desperately in need of support.
Family Impact and Caregiving Burden
With the rate of stroke increasing and the steady growth of the older adult population, there is not only a growing need for stroke care, but a significant growth in the number of family members stepping into the caregiving role.
Family members, often a partner, adult child, or sibling, step into the role of caregiver, seemingly overnight. Few are prepared. Many experience their own health challenges and limitations. They are required to manage medical appointments, transportation, medications, insurance and finances, while also helping the stroke survivor with activities of daily living and personal care; all while grieving the changes and ‘losses’ in someone they love.
Taking on the caregiver role creates intense strain, often leading to physical and psychological health problems in caregivers. Many caregivers experience depression, anxiety, exhaustion, social isolation, and declining physical health of their own.
They may feel guilty for being frustrated, or fear that voicing their struggles means they're failing or burdening their loved one. Caregiving often has severe implications for relationship quality and intimacy as well, with caregivers sometimes feeling more like a parent than a partner.
Despite the growth and importance of family caregiving, the caregiver's health and well-being often go unnoticed, even by the healthcare and medical systems that specialize in stroke care. This lack of attention to caregiver experiences and emotional health leads to depleted, overwhelmed caregivers that have less capacity to support their loved one.
With poorer family support, the survivor experiences delay in their own recovery, leading to greater dependence on an increasingly strained healthcare system characterized by long waitlists, insurance limitations, a lack of mental health supports, and a shortage of providers trained in stroke care and recovery.
A Call for System Change: Prioritizing Mental Health
Stroke recovery doesn't end when a person leaves the hospital or completes rehabilitation. It continues in kitchens, living rooms, workplaces, family homes, and quiet moments, when the weight of change sets in and the family attempts to return to pre-stroke routines and social roles.
If we want survivors and families to truly thrive, we must prioritize emotional and psychological supports after stroke; it means integrating mental health professionals into stroke rehabilitation teams, training providers in adapted therapies for communication and cognitive impairments, and offering caregivers their own assessments, education, respite, and support.
We must care for minds as seriously as we care for bodies; we must understand that patient’s medical condition and physical health do not occur separately from psychological and social health.
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