Supporting the Needs of Stroke Caregivers Across the Care Continuum

Research indicates the 44% of stroke patients receive no post-acute care. Clinicians also need to advocate for patients to get the most appropriate level of organized, coordinated, and inter-professional post-acute care [5]. This requires that they understand the different levels of post-acute care, including the criteria for admission, the scope and intensity of nursing, therapy, physician and other services provided in each setting, and the associated clinical outcomes. This knowledge is also necessary to enable clinicians to educate stroke survivors and their caregivers on post-acute care so that they understand the process and can effectively self-advocate for the provision of appropriate services as needed.

Approximately 45% of stroke survivors in the US are discharged either to an inpatient rehabilitation facility or SNF for rehabilitation [4]. Patients discharged to an inpatient rehabilitation facility receive a minimum of 3 hours of therapy per day and are cared for 24 hours/day by a staff led by registered nurses (RNs) with rehabilitation expertise. SNFs do not have minimum requirements for hours of therapy, 24-hour RN staffing, nor a requirement for nurses with specialty training in rehabilitation. Pressure to reduce the length of stay in acute care often results in providers transitioning stroke survivors to the post-acute care setting that accepts the patient first. Because SNFs have fewer criteria for admission, they are more likely to rapidly accept a patient for care when compared to an inpatient rehabilitation facility. Providers must determine and make recommendations for the most appropriate level of post-acute care to ensure the stroke patients’ rehabilitation needs can be met in the recommended setting [5,69]. It is also essential that family caregivers have the knowledge and skills to advocate for the appropriate level of post-acute care based on the stroke survivor’s expected recovery trajectory. Research has demonstrated that that stroke survivors admitted to an inpatient rehabilitation facility, when compared to similar patients in a SNF, have better outcomes, including improved function [70] and lower re-hospitalization and death rates [71,72]. The Association of Rehabilitation Nurses provides resources for health care professionals and patients regarding rehabilitation. For more information for professionals about levels of post-acute care, see www.rehabnurse.org/uploads/files/healthpolicy/ARN_Care_Transitions_White_Paper_Journal_Copy_FINAL.pdf [73]. For information for patients and caregivers, see www.restartrecovery.org.

Providers must also be knowledgeable about community resources in order to provide connections to services and agencies that are relevant to the changing needs of the caregiver over time. Initially, caregivers may need assistance in meeting the stroke survivor’s BADL/IADL, and later needs may expand to include support groups, respite, and opportunities for a greater community engagement.

Training in time management provides room in the busy caregiving schedule for self-care for the caregiver. Providers must assist with determining routines that meet the needs of both the caregiver and stroke survivor, as the health of each is dependent on the other. Assistance in developing a wellness program that is feasible for the caregiver to maintain will improve adoption of health promoting practices.

As discussed above, the needs of both the stroke survivor and caregiver vary along the post-stroke trajectory. Therefore, both caregivers and stroke survivors should be assessed intermittently over time: caregivers for evidence of effective coping strategies and confidence in the sustaining the caregiving role, and stroke survivors for improvement in their functional abilities and compensatory strategies in BADL/IADL. The opportunity for the stroke survivor to assume household tasks that decrease the caregiver burden, in addition to providing a greater sense of purpose for the stroke survivor, must be explored. For example, the stroke survivor may be able to assist with activities such as meal planning and components of meal preparation or light housekeeping utilizing adaptive devices as needed.