Family Caregivers for Persons with Heart Failure: Opportunities to Improve Outcomes for Both

Heart Failure (HF) is a cardiovascular condition that continues to increase due to aging of the population and successful treatments of other cardiac and chronic conditions allowing longer years of life. Heart failure family caregivers, that is, informal unpaid caregivers, provide essential tangible and emotional support often involving complex HF self-care regimens and treatment decisions. Recent studies have illuminated these roles and outcomes of heart failure caregiving as well as the financial, social and health implications. The AHA Scientific Statement entitled “Family Caregiving for Individuals with Heart Failure” reviews current data regarding the evidence surrounding the caregiving role and interventions to improve HF patient and caregiver outcomes, and makes important recommendations for considerations for policy development and future study.

Between 2013 and 2016, the HF population was estimated to be around 6.2 million American adults greater than the age of 20 years with projections of 8 million by 2030.¹ Around half of those hospitalized with HF are cases of reduced ejection fraction, however the growing prevalence of hypertension also contributes to greater numbers of persons with heart failure with preserved ejection fraction.¹ HF is considered the most common cause of hospitalization in those greater than the age of 65 years imposing high financial, family and societal burden.

For the majority of people with heart failure, a family member or friend serves as an informal or unpaid care provider and assumes an essential role. Family caregivers may represent many different relationships to the person with HF including spouses, partners, adult children, siblings, and friends, for example. The nature of the relationship and whether the caregiver lives in the same household may also make a difference in the level of support provided and actual involvement with tangible and supportive caregiving actions. HF family caregivers monitor and support complex medical regimens, facilitate a low sodium diet including shopping, meal preparation and encouragement of appropriate caloric intake, and encourage physical activity and symptom assessment/management.^{2 3} In addition they provide transportation, facilitate communication and treatment decisions with care providers, and may assist in managing implanted technology such as left ventricular assist devices.

That HF family caregiving can be stressful and demanding is not surprising given the classic and historically significant studies on caregiving of elders and those with chronic conditions and dementia which identified that the stress of family caregiving can adversely affect immune parameters for up to three years after caregiving ends.^{4 5} Prolonged and intense caregiving exerts a devastating toll on caregiver health manifested as burden, depression, reduced quality of life, and increased risk for CVD events and other chronic conditions^6,7 compared with non-caregiving adults of the same age. Almost 30% of HF family care givers (FCGs) report depressive symptoms,⁸ and mental health of the HF caregiver can be lower than the patient.⁹ HF caregiver outcomes are worse in the context of higher HF severity of illness, low social support, low control, and uncertainty.^{10 2,8,11-14} Qualitative studies note particularly burdensome aspects including communication with providers, compassion maintenance,^{15 16} high hospitalization rates and decisions about increasingly complex HF treatment devices.^{15 17} Yet, involvement and actions of caregivers are associated with improved quality of life, increased adherence to medications and diet, increased physical function and emotional well-being, and decreased healthcare utilization.^{18 19 20} Well-prepared HF FCGs are essential to ultimately improve outcomes of the growing HF population.^21,22

Importantly, not all entailed in family caregiving is stressful, and in contrast, positive health effects of caring for a spouse may emerge when there are perceptions of providing needed and greater help suggesting positive meaning may be derived from caregiving experiences.^{5 23 24} HF caregiving demands change over the trajectory of the patient’s illness, and confronting end of life and hospice care presents new challenges, communications and decisions which are not well studied.²⁵

The financial value or contributions of family, informal or unpaid cardiovascular caregiving is enormous and has been estimated to be $61 billion in 2015 with projections to increase to $128 billion in 2035.²⁶ Although less costly than stroke, the burden of informal caregiving for patients with heart failure is estimated at $7 billion in 2015 and $14 billion in 2035.²⁶ In addition to the contribution of time, the true economic burden of caregiving may be greater in that caregivers may have productivity loss, incur out-or-pocket expenses, and for those experiencing higher levels of caregiving distress, higher consumption of their own health care services.²⁷

So what helps HF family caregivers? Interventions tested have included around 13 studies to date of different approaches such as education (provision of in depth information on HF pathophysiology and management including self-care); skill building (problem solving; goal setting; medication, symptom, and device management; and communication); and caregiver stress management and caring for self. Appropriately, the authors of the AHA Scientific Statement concluded that given the few interventions to date and the lack of consistently demonstrated benefit, recommendations for robust and scalable models of formal caregiver support in the clinical setting are difficult to make. While there remains a need for this critical research, in the absence of clear evidence, the authors of the AHA statement advocate for efforts to meet caregiver needs guided by the major principles posed by the National Academy of Medicine²⁸ to: 1) screen or assess the multiple areas of caregiver risk and needs for logistical, informational, financial, coordination, and psychosocial support so that these unmet needs can be addressed; 2) move beyond strictly informational needs to address areas of psychosocial and financial, refinement of skills related to caregiving tasks, and coping through referrals to obtain supportive services, such as counseling and respite care, and 3) continue effective interventions over the duration of the active caregiving period which becomes particularly salient with the changing illness trajectory of HF. In our own study testing a combined psychoeducational intervention with physical activity for HF family caregivers, we found caregivers were motivated to learn more about how to care for their loved one with HF and high interest in efforts to reduce caregiver burden and improve their own health.²⁹

The recognition of the importance of caregivers and their health, and the dynamics of increasing numbers of persons needing caregivers in the context of a dwindling available pool has led many national professional and non-profit agencies to develop resources. A plethora of caregiver research in other populations exist providing strong theoretical and foundational guidance for parallel HF caregiving research. Policy that would benefit caregivers’ health and financial needs is a high priority for advocacy efforts.

Given that this commentary is prepared in the midst of the COVID-19 pandemic, the role of the family caregiver in such situations or other disasters such as weather or public health emergencies must be acknowledged. Family caregivers are encouraged to have actionable emergency plans for disasters specific to their caregiver role and to the needs of their family member. Examples include having adequate medications and important information readily accessible, being able to assess symptoms that warrant healthcare attention, making decisions about seeking care, and finding alternative care when usual providers are not available. Little research is available reporting experiences of cardiovascular and HF family caregivers during such situations, although the broader caregiving literature provides insight that the caregiving role may actually limit ability to prepare for disasters such as storms and influences decision-making regarding evacuation and utilization of recovery resources.³⁰ These are important aspects to include in education and advocacy for family caregiving of persons with HF.

The AHA Scientific Statement on Family Caregiving for Individuals with Heart Failure³¹ provides those in caregiving roles, providers, and the public with valuable information on the important contributions of family caregivers to heart failure outcomes and the concomitant stresses, demands and rewards. Based on finding limited well-conducted studies of HF family caregiver interventions, the authors appropriately call for research to address efficient and effective approaches to improving HF caregiver knowledge and skills across the trajectory of illness while reducing burden and improving outcomes for both the patient and caregiver. These are noble goals to guide further policy and research in this important field.