Supporting the Needs of Stroke Caregivers Across the Care Continuum

Recognizing the need to improve post-acute care for stroke survivors and their family caregivers, several large funded clinical trials are being tested in the US and globally. For example, the ATTEND Trial in India is testing a home-based, caregiver-led rehabilitation intervention [68]. The Comprehensive Post-Acute Stroke Services (COMPASS) study in North Carolina, is a state-wide pragmatic, randomized controlled trial testing a comprehensive community-based patient-centered post-acute care intervention with stroke survivors and their caregivers (www.nccompass-study.org). Results of these and other studies will continue to identify evidence-based strategies to improve care coordination, quality of care, and post-stroke outcomes for stroke survivors and their caregivers

Recommendations for Clinicians

Based on this review we have identified strategies that clinicians can implement across the care continuum that may help reduce caregiver strain and burden, and improve outcomes for family caregivers and the stroke survivors for whom they provide care. The evidence suggests that caregivers need assistance in building skills, not only in providing the care needed by the stroke survivor but also in solving problems as they arise; navigating the multiple systems of care, including understanding options for post-acute care; accessing community resources; communicating effectively with health care and social support providers; and dealing with the emotional effects of stroke [44,52].

Caregivers need help in navigating the multiple providers and systems of care to get the services the stroke survivor needs as well as to secure support services. They need information from trusted sources about stroke prevention and available community resources. Providinga list of resources is often insufficient, especially in the first few weeks or months post-stroke; these caregivers are already overwhelmed with the enormity of the tasks and responsibilities that they have taken on as a caregiver. Instead they need someone who can advocate for them and connect them with the appropriate resources at the right time.

They also need assistance developing and maintaining self-care strategies so they can sustain the caregiving role long-term. Identifying opportunities for respite and helping them activate informal and formal resources, such as other family members, friends, church groups, neighbors, and services from local senior centers, independent living centers, or area agencies on aging can help them identify assistance with the breadth of duties including care of the stroke survivor, meal preparation, transportation, or a supportive listening ear. It is important for the caregiver, in addition to any other close support person as available, to have a facilitated discussion withthe healthcare team to brainstorm activities where assistance may be provided and who might be approached to help.

The timing of providing support and resources is also critical. Becoming a caregiver is a process and often family members who are new to the role need more intense direct assistance and support when the stroke survivor first comes home, but many may need ongoing support over time. Research suggests it can take caregivers up to 3 years to figure out how to manage the new responsibilities, learn to navigate the multiple systems for careand services, establish confidence in their abilities, deal with the emotional upheaval, and to adapt to their new lives [23].