How to Best Support Family Caregivers of Stroke Survivors

Discharge from the hospital or inpatient rehabilitation facility can be a time of crisis for family caregivers of stroke survivors. These caregivers often do not feel prepared to assume 24/7 responsibility for the patient. As providers we must understand the needs of family members who will be caring for stroke survivors at home and develop plans to specifically address those needs. To help family members adjust to their new caregiving role, we must identify their needs and gaps in preparation, address the gaps with interventions, and prepare caregivers to sustain care over time.

1.   Identify Family Caregivers’ Needs and Gaps in Preparedness

Family caregivers should be assessed during the acute care or inpatient rehabilitation stay for their commitment and capacity to provide post-discharge care.1

Assessment domains related to commitment include:

  1. Strength of the caregiver/stroke survivor relationship
  2. Caregiver’s understanding and willingness to perform care

Assessment domains related to capacity include:

  1. Existing physical and mental health problems
  2. Pre-stroke roles and responsibilities
  3. Accessibility of the home environment
  4. Availability of informal support
  5. Financial resources
  6. Pre-stroke caregiver experience
  7. Strategies for self-care
  8. Sustained capacity to provide care

2.   Address Gaps with Interventions Tailored to Individual Needs

Many stroke caregiver and dyad interventions are reported in the literature. A systematic review of these interventions from the American Heart Association includes Class I (highest) and Class II (2nd highest) recommendations for stroke caregiver and dyad interventions.2

Class I Recommendations:

  • Interventions that combine skill building (e.g. problem solving) and psycho-education are the most effective
  • Interventions should be tailored to the individual needs of stroke caregivers
  • Post-discharge assessments to evaluate the changing needs of caregivers are warranted
  • Face-to-face interventions are the most successful
  • Interventions should include 5 to 9 sessions

Class II Recommendations:

  • Interventions focused specifically on caregivers are “probably recommended” to improve caregiver outcomes
  • Interventions focused specifically on dyads are “probably recommended” to improve stroke survivor outcomes
  • Individual over group interventions are “probably recommended”
  • Interventions that provide support only or when combined with educational programs do not have sufficient evidence
  • Telephone interventions can be useful when face-to-face is not feasible
  • Web-based interventions may be considered if caregivers or dyad have internet access

For more information, please see the complete scientific statement: Evidence for Stroke Family Caregiver and Dyad Interventions.

3.   Prepare Family Members for Sustained Caregiving

Caregivers and stroke survivors need continued support once they return home after an inpatient stay. Many stroke survivors continue to improve in the chronic stroke phase (i.e. > 6 months post-stroke). Caregivers who master their new tasks feel fulfilled by the caregiving role; those who care for less cognitively impaired stroke survivors report higher well-being as well.3 However, stroke survivors and family caregivers should be assessed for depressive symptoms within the first few months after stroke and referred for follow-up services if warranted.

Your local Area Agency on Aging can provide information about community resources and support for caregivers and stroke survivors. There are also excellent internet resources available for stroke survivors and their family.

Continued Support

Stroke represents a crisis event for the stroke victim and their family, and discharge to home is a particularly vulnerable stage in recovery. Family members often feel unprepared to assume the caregiving role and need assistance in learning how to manage these new responsibilities.

Rehab professionals must assess caregivers for their commitment and capacity to provide care and develop appropriate individualized plans to address any gaps. The caregivers will also need sustained assistance over time, including help in developing strategies for self-care so that they can maintain their own health. Connecting the caregiver to community and internet resources can aid in the transition too. Using these steps and resources, we, as providers, can assist family caregivers in delivering the best possible care to their loved ones affected by a stroke.

  1. Young, M. E., Lutz, B. J., Creasy, K. R., Cox, K. J., & Martz, C. (2014). A comprehensive assessment of family caregivers of stroke survivors during inpatient rehabilitation. Disability and Rehabilitation.
  2. Bakas, T., Clark, P.C., Kelly-Hayes, M., King, R.B., Lutz, B.J., & Miller, E. on behalf of the American Heart Association Council on Cardiovascular and Stroke Nursing and the Stroke Council. (2014). Evidence for stroke family caregiver and dyad interventions: A statement for healthcare professionals from the American Heart Association. Stroke, 45(9): 2836-2852. Epub 2014 Jul 17.
  3. Cameron, J.I., Stewart, D.E., Streiner, D.L., Coyter, P.C., & Cheung, A.M. (2014). What makes family caregivers happy during the first 2 years post stroke? Stroke 45 (4), 1084-1089.