Top Things to Know: Family Caregiving for Individuals With Heart Failure

Published: April 30, 2020

  1. Heart failure (HF) affects over 6 million adults in the United States and 26 million globally, with prevalence increasing due to the combined effects of social and lifestyle determinants and an aging population.
  2. Advancements in HF treatments and devices have expanded family caregiving responsibilities to include more complex tasks previously performed by healthcare professionals in clinical settings.
  3. Many HF patients rely on unpaid support from their spouse/partner, family members, friends or neighbors and other persons in their community.
  4. With the increasing incidence of HF, the number of available caregivers is expected to decline, due in part to people living longer with more comorbidities and changing family size and composition.
  5. Based on market value for the time HF caregivers spend in their role, the cost of that care has been estimated at $6.5 billion per year in the U.S. (2015 dollars) and is projected to increase to $13.5 billion per year by 2035.
  6. This statement synthesizes the evidence pertaining to caregiving for individuals with HF, characterizes the caregiving role, describes the financial, health and well-being implications of caregiving in HF, evaluates HF caregiving interventions to support caregiver and patient outcomes, summarizes existing resources that support HF caregivers, and identifies knowledge gaps and future directions.
  7. The importance of caregiver engagement in decision making has been increasingly recognized and includes medical and surgical treatment, end of life, financial and self-care decisions.
  8. The experience of HF is shared by the patient and their caregiver; an important line of research involves characterizing interactions between a HF patient and their caregiver at the level of the dyad where the unit of interest is the relationship, rather than the individual patient or caregiver.
  9. The role of technology to support patients with HF and their caregivers is increasing and includes invasive devices that monitor pulmonary artery pressure and mobile applications to track symptoms, diet, and medications.
  10. Future directions for HF caregiving research include systematic assessment of the impact of HF caregiving, evaluating caregiving over time and during transitions, understanding multiple comorbidities and multiple caregivers, understanding intervention targets and components, and leveraging technology for caregivers of patients with HF.


Kitko L, McIlvennan CK, Bidwell JT, Dionne-Odom JN, Dunlay SM, Lewis LM, Meadows G, Sattler ELP, Schulz R, Strömberg A; on behalf of the American Heart Association Council on Cardiovascular and Stroke Nursing; Council on Quality of Care and Outcomes Research; Council on Clinical Cardiology; and Council on Lifestyle and Cardiometabolic Health. Family caregiving for individuals with heart failure: a scientific statement from the American Heart Association [published online ahead of print April 30, 2020]. Circulation. doi: 10.1161/CIR.0000000000000768