About 70% of patients who receive rehabilitation following a stroke are discharged to home. The remaining 30% either return to acute care because of a complication or transfer to a skilled nursing facility, in some cases for continued rehabilitation services (Conroy et al., 2009).
The two most powerful predictors of functional recovery and eventual discharge home are initial stroke severity and the patient’s age, with initial stroke severity being by far the most important (Teasell et al., 2013). In the long term, 25% to 74% of patients have to rely on human assistance for basic ADLs like feeding, self-care, and mobility (Veerbeek et al., 2014).
I provide care for my mom—she had a stroke about a year ago and lives with me now. She also has dementia although she’s generally fairly easy to care for. Sometimes though, I get really, really mad at her—I feel like slapping her though I never have and I know that would be really wrong. I didn’t used to understand the pressure on caregivers—now I do. I’m a little ashamed to admit it but I understand how someone can abuse a person they’re caring for.
A caregiver provides assistance to a person in need. Caregivers help with physical tasks such bathing, dressing, walking, and cooking, as well as overseeing medication and home management and providing emotional support. Caregivers can provide direct care or manage care from a distance. They may be a family member, a neighbor, or a medical professional.
The experience of having a sudden illness affects every aspect of a person’s life; it also affects spouses, partners, and family members. A stroke takes you away from your home, friends, pets, your own clothing, and your own food. It drops you into the middle of a nearly incomprehensible medical system with arcane rules, an unfamiliar culture, and many highly educated, overworked, and harried healthcare providers. In addition to the dramatic physical and psychological challenges that arise following a stroke, treatment itself is often a significant challenge.
Caregiving is an important part of post stroke care. It is a long-term, evolving process with key transition phases. The onset of care can be abrupt or can emerge naturally from customary family transactions, involving support given and received, that existed before the onset of an illness. Needs for care tend to escalate over time, from increased support for household, financial, and social activities, to personal care, to what for some is almost constant supervision and surveillance. Important transitions include the involvement of professional caregivers, institutionalization, and bereavement (ADI, 2013).
Caregiving is extremely taxing, both physically and emotionally, with potential adverse effects on the health of the caregiver. Caregivers are at increased risk for depression, increased use of health services, and self-administration of medications prescribed originally for the patient. Depression has been associated with physical abuse of the patient and a greater likelihood of nursing home placement.
Pre-existing family habits and characteristics play an important role in a patient’s successful transition to community living. Caregivers are more likely to give adequate support if they are knowledgeable about stroke and its disabilities, are not depressed, and live in an otherwise well-functioning family unit (VA/DOD, 2010).
Community support can buffer the effects of disabilities on the patient, family, and caregivers. Educational support can be provided through printed materials, videos, computer programs, and support groups. The availability of emotional and physical support services is crucial to a successful outcome.
Caregivers will often be actively engaged in the rehabilitation program and should be encouraged to participate in decision making and the setting of relevant goals and realistic strategies for reaching them. To sustain the gains made during inpatient care and to ensure continued improvement, the rehabilitation team should view the patient and family as the unit of care. The rehabilitation team must have a comprehensive understanding of the needs and preferences of the family and be familiar with the post discharge environment. The team must understand the patient and family history, expectations, coping styles, resources, emotional support system, and family dynamics (VA/DOD, 2010).
Stroke patients and family caregivers should receive a psychosocial assessment with interventions and referrals as needed. The psychosocial assessment should address the following areas:
- Pre-stroke functioning of the patient and the primary caregiver
- Capabilities and abilities of the primary caregiver
- Caregiver’s understanding of the patient’s needs
- Family dynamics and relationships
- Availability and anticipated involvement of other family members
- Spiritual and cultural preferences
- Leisure time and preferred activities
- Understanding of the condition and expectations for recovery
- Stroke-related outcomes and resources for follow-up care (VA/DOD, 2010)