Caregiver burden is a common occurrence in chronic disease management. In stroke — the leading cause of disability in the US1 — caregiver burden has been recognized as a significant health care concern.
Despite the lack of consensus on the definition of caregiver “burden” due to its multifaceted nature, some researchers note that it can be defined as “the physical, psychological, emotional, social, and financial stresses that individuals experience due to providing care.”2
Although there is well-documented evidence of burden among caregivers of patients with stroke, limited clinical resources and holistic strategies to reduce adverse outcomes among caregivers are available.2 Research has shown that these negative effects experienced by caregivers may persist over long periods of time.3
On the topic of caregiver burden in stroke, we spoke with Mona Bahouth, MD, PhD, medical director of the Brain Rescue Unit and associate professor of neurology at Johns Hopkins School of Medicine in Baltimore. “I like to use the term “care partner” [to refer to caregivers] because the loved ones of patients with stroke often tell me that while they do provide care to their loved one after stroke and that there are challenges, the relationship develops into one of meaning and mutual gain — a partnership,” Dr Bahouth said.
How Much Is Too Much?: Degree of Caregiver Burden and Outcomes
Anecdotes from real-world settings have shown that informal caregivers of patients with stroke are often underprepared for their caregiving role, resulting in increased risk for depression.4 The caregiving role typically includes assistance with daily care activities and both physical and emotional support.2
High scores were seen for psychologic distress, including posttraumatic stress disorder (PTSD), among family surrogate decision-makers of patients with severe stroke, with ethnicity being a predictor of outcomes.Worse psychologic outcomes were noted in Hispanic compared with non-Hispanic White caregivers.5 Having no change or worsening in psychologic quality of life, including memory, communication, emotion, and participation among patients with stroke also resulted in greater caregiver distress and burden over a period of time.6
Dr Bahouth
A survey conducted by Achilike and colleagues in Texas reported more severe caregiver burden for those with depression symptoms (P <.001), as well as those who were caregivers of patients with stroke with functional disabilities (P =.0387). The majority of survey respondents who were informal caregivers reported some form of burden: 34% reported mild to moderate and 17% reported moderate to severe burden.4 Patients with stroke with emotional difficulties, including stress, anxiety, and depression, were also found to be associated with greater severity of caregiver burden.2 In a2020 study published in Disability and Rehabilitation, researchers found that caregivers of patients with hemorrhagic stroke had more burden.7
Previous research has identified that approximately half of the caregivers of patients with stroke experience significant burden within the first 6 months of stroke.However, increased time spent caring for patients with stroke increased the burden, as it resulted from deprivation and prolonged tiredness.2
Overall, “Caregiving in the US after stroke is labor intensive — the care partner is thrust into the role in an instant, resources are not easy to identify, and meaningful resources are not always sustainable due to high costs. This creates inequity based on sociodemographic status,” Dr Bahouth noted.
Identifying the Signs of Caregiver Burden
Multimorbidity is reported to be common in patients with stroke and associated with premorbid disability.8 Therefore, providing care for patients with stroke is demanding due to the complex nature of stroke sequelae, as well as other comorbidities. However, distinguishing the signs and symptoms of burnout among caregivers may be challenging as they could overlap and be compounded by their own physical and mental health issues.2,9
In a 2020 study published in Gerontology and Geriatric Medicine, Schmaderer and colleagues highlighted that the general assumption was that caregivers are “healthier” than the patients for whom they were caring for. However, caregiver comorbidities are common, with 1 caregiver reported to having an average of 2 to 3 comorbidities.9
A literature review identified poor provider communication, responsibilities, and psychologic burden as factors that associated with caregiver burden, in addition to the fact that caregivers may have to keep up with patients’ appointments and medications. The researchers believe that uncertainties in disease and symptom management may lead to detriments in mental health, including depression and anxiety, in caregivers.9
Identifying signs of burden among caregivers has been described as similar to that of stress and depression in the general population.10 Signs of caregiver burden may include:
- physical exhaustion
- withdrawal from loved ones
- loss of interest in previously-enjoyed activities
- feeling of hopelessness and/or helplessness
- irritability, frustration, or anger
Of note, caregiver burden must be monitored during the first year after a stroke even if individuals do not present with visible signs of distress.7
Alleviating Caregiver Burden in Stroke: Barriers and Strategies
In a 2020 paper published in Disability and Rehabilitation, members of the SCORE-Study Research Group discussed implications for rehabilitation of caregivers of patients with stroke. The Caregiver Strain Index was found to be a good screening tool to assess stress among carers/caregivers, with scores at 6 months being a good predictor of scores at 12 months.7
Developing strategies to address caregiving burden of patients with stroke is challenging.
Dr Bahouth discussed the factors that contribute to the gap in the area — the limited information on strategies to reduce negative outcomes among caregivers of patients with stroke — “One, care partners are not included in the structure of any specific
phase of stroke care; two, the continuum of poststroke care is highly siloed and the needs of the care partners are dynamic along this continuum; and three, there is no reimbursement structure for care partner interventions after stroke.”
Additionally, Dr Bahouth commends the role of stroke centers in streamlining diagnostic evaluation and the treatment of stroke, which has resulted in a shorter length of hospital stay for the majority of patients. However, she noted that caregivers of patients with stroke may not be well-equipped to handle multiple levels of care due to varying patients’ needs.
In a 2019 study published in BMC Public Health, Hall et al developed a theory- and evidence-based intervention in the UK to reduce burden among caregivers of patients with stroke, which stemmed from the fact that existing interventions only offered guidance in-person and through educational materials.2 Many researchers agree that the provision of counselling and formal health and community-based support services given to caregivers may improve health and quality of life, even over longer periods of time.3
Future of Caregiving in Stroke: Role of Stakeholders
Based on findings from recent studies, experts encourage stakeholders, including providers and research groups, to focus on characterizing the needs of caregivers of patients with stroke.4 Tailoring approaches to be more patient- and caregiver-centered, rather than being only patient-centered, may result in improved psychologic quality of life for caregivers, as well.6
“If we can do better to [offer] the care partner with resources and continuity clinics that support their needs from the time of hospitalization for stroke, there is a much higher likelihood that they will succeed and with lower burden,” Dr Bahouth said.
She also advised a 3-fold approach to address the integral role of stakeholders and collaborators. “First, we need innovative research to design the highest value program to support care partners. This will require patient and care partner involvement in the study design. [Second], we need regulating bodies to incorporate care partner standards into the continuum of stroke care. [Third], we need new payment structures that incorporate care of the care partner into the fiber of poststroke care.”
Researchers should conduct more rigorous and thorough studies to further understand the role of caregivers and develop interventions to reduce burden in populations with multimorbidity during care transition.9
Looking ahead, Dr Bahouth said, “I would encourage stroke centers to focus on care partner preparation at the time of patient hospitalization, and provide resources and access to continuity clinics that focus on the care partner needs which are especially dynamic in the first weeks and months after stroke. There are resources and support groups available, but the individual needs of the care partner should be considered.”
