The following are key points to remember from this American Heart Association (AHA) Scientific Statement on family caregiving for individuals with heart failure (HF):

1. As the number of HF patients increases, the number of available caregivers is expected to decline due to change in family size and composition. Caregivers for HF patients play a key role in supporting activities of daily living, providing psychosocial support, and navigating the health care system.
2. Due to the undulating course of HF, caregiver roles and responsibilities constantly change. Early integration of palliative care has been shown to improve quality of life for both patients and caregivers. However, palliative care services remain poorly used in HF patients.
3. Caregivers incur substantial financial losses related to providing care for patients with chronic illnesses. These costs are borne disproportionately by older adults, women, and minority populations who are already at high risk for financial toxicity. Additionally, there are higher physical and psychological health risks associated with caregiving for individuals with chronic health conditions.
4. There have been few high-quality randomized controlled trials directed at reducing burden and improving health status of caregivers of HF patients. Furthermore, one half of interventions tested have had no significant impact on caregiver outcomes. Similarly, impact of these interventions for caregivers on patient outcomes have yielded mixed results. Observational data looking at impact of caregiving are limited by small size, confounding, cross-sectional designs, or short-term follow-up and inconsistent measurements of caregiver outcomes.
5. Studies evaluating use of technology in supporting HF patients and their caregivers are lacking. Digital health can provide unique avenues to supporting caregivers of HF patients.
6. There are no HF-specific support organizations available to caregivers. Caregiver assistance programs include government-mandated and employer-sponsored programs.
7. Interventional studies directed at caregivers for HF patients have been of low quality. Strategies that are effective in improving caregiver and patient outcomes remain unknown. Lack of financial incentives for healthcare providers to directly support caregivers forms a major barrier in improving caregiver outcomes and, as a result, patient outcomes.

Clinical Topics: Cardiovascular Care Team, Geriatric Cardiology, Heart Failure and Cardiomyopathies, Prevention, Acute Heart Failure

Keywords: Activities of Daily Living, Caregivers, Chronic Disease, Cost of Illness, Family Characteristics, Geriatrics, Health Status Disparities, Heart Failure, Hospice and Palliative Care Nursing, Mental Health, Palliative Care, Quality of Life, Secondary Prevention

< Back to Listings