Caregiver stress: The crucial, often unrecognized byproduct of chronic disease

There is growing evidence that caregivers of patients with cardiovascular disease (CVD) are vulnerable to developing their own poor cardiovascular health. Investigators report in the Canadian Journal of Cardiology, on an intervention that has shown potential for reducing caregiver distress.

Nearly half of Canadians have been in caregiving roles to family and friends, with similar figures in the United States and Europe. A caregiver is broadly defined as someone who provides informal or unpaid work to a family member or friend with a chronic condition or disability. About 40 per cent of caregivers, of whom the majority are women, report high psychological, emotional, physical, social, and financial stresses imposed by the caregiving role. These factors can contribute to a higher risk of CVD among caregivers themselves.

However, despite an appreciation of these issues, few approaches have been effective in reducing caregiver stress. This need is expected to increase because pressures on “cardiac” caregivers are projected to rise in the next decade as the population ages, length of hospital stays decline, and CVD and associated risk factors continue to increase.

What the researchers say: “It is abundantly clear that caregivers need to be better supported!” said the lead investigator. She added, “Caregivers are critical for patients’ cardiovascular health management and are an invaluable healthcare resource, contributing enormously to the Canadian healthcare system. Individuals who care for their partners may experience additional cardiovascular risk—a risk that should be recognized and to which we should respond.”

In the published review, investigators looked at evidence from the fields of health psychology and relationship science and highlight the direct (e.g., physiological) and indirect (e.g., behavioral, emotional) factors that link caregiver distress with caregivers’ own cardiovascular risk. For example, caregivers are more likely to continue to smoke and less likely to be physically active than individuals who provide no or low levels of care; their diets tend to be high in saturated fat intake leading to greater body mass indexes; they spend less time engaging in self-care activities and report poor preventive health behaviors; they experience less or disordered sleep; and demonstrate poor adherence to medication.

Spousal caregivers have higher levels of depressive symptoms, physical and financial burden, relationship strain, and lower levels of positive psychological wellbeing compared to adult children caregivers, for example.

The researchers report that the risk of hypertension and metabolic syndrome may be directly related to high-intensity caregiving, defined as providing more than 14 hours of caregiving per week over two consecutive years. They also report findings that estimate the economic contribution of caregivers’ unpaid labor to be $26 billion annually in Canada, which is projected to increase to $128 billion by 2035 (likely translating to over a trillion dollars each in the USA and EU).

The investigators contend that the cardiovascular health of both patient and caregiver could be improved by enhancing the quality of the patient-caregiver relationship. They describe a proof of concept testing of Healing Hearts Together, a relationship-enhancement and educational program for patients and partners. Based on attachment theory, which states that close emotional bonds are essential when faced with a threat such as a cardiac event, the program guides couples through conversations in which they review information on heart health and attachment; share their unique experiences with heart disease with partners and peers; and learn to clearly communicate their need for connection and reassurance. This connection enhances couple satisfaction and problem solving. Participants reported improvements in relationship quality, mental health, and select quality of life measures.

“The aim of Healing Hearts Together is to increase emotional accessibility and responsiveness in couples facing CVD,” explained the lead author. “Taken together, couples-based interventions in a cardiac rehabilitation setting may be a timely and appropriate approach to reduce caregiver distress and enhance caregivers’ comprehensive health outcomes. It is important that healthcare professionals recognize the burden of caregiving and act sensitively and strategically to address these challenges.”

So, what? This study makes perfect sense looked at from the perspective of human evolutionary science. We were not designed to individually look after a chronically ill or disabled person. That was a job to be shared by the tribe or the community. Recent studies (many reported in TR) have shown that individuals recover better from physical or mental illness in the context of the group or the extended family.

What’s more, a number of studies have shown that we tend to grow to be like those that we are most closely attached to, so that if caregivers become more prone to cardiovascular disease then the patients that they are looking after will probably worsen in response.

In the band of hunter-gatherers that I lived with, I never witnessed any sufferer with only a single caregiver to look after them. Even depression was something that the band jointly undertook to heal. Usually successfully.