Emergency room staff call it a “pop drop”— when a disabled older person comes in for medical attention, but it seems like the person who takes care of them at home is also seeking a break from the demands of caregiving.

Michigan Medicine, 2017

Healthcare providers treating older adults with family caregivers have, in a sense, two sets of “patients” (Brodaty & Donkin, 2009; Reinhard et al., 2019). While the needs of care recipients may be the original, and at first most obvious, focus, caregivers also need strong support. This critical need covers two domains:

• The caregiver is the client with the work of the provider meant to help reduce caregiver distress and the overall impact of caregiving on their health and well-being. In this case the caregiver receives the direct benefit and the care recipient benefits only secondarily.
• The caregiver is supported in caring, becoming more competent and confident in providing safe and effective care to the patient. This benefits the patient but can also indirectly reduce caregivers’ stress by reducing their load and/or increasing their sense of mastery (Reinhard et al., 2019).

Reinhard and colleagues* looked at the first of these roles in depth. They noted that many years of research had validated the needs but programs to address them were lacking. Today we face continually increasing numbers of both dementia patients and caregivers, as well as increasing demands on healthcare providers to deal effectively with both groups. More research-backed interventions and support programs for caregivers, and the healthcare providers working with them, are available, but there is still much room for improvement.

* In “Supporting Family Caregivers in Providing Care”—a chapter in Patient Safety and Quality: An Evidence-Based Handbook for Nurses, 2008).

With 15 million American family caregivers of those with dementia, the well-documented physical and emotional toll on them has not led to efforts to integrate their support into care for their recipients. Burden and fatigue of caregivers has been shown to intensify the high use of hospitals and emergency departments (EDs) by dementia patients and the much higher cost of care for those patients when compared with patients with heart disease or cancer (Slaboda, 2018; MI Med, 2017).

As healthcare practices and facilities focus more and more on managing costs, the need to provide more care rather than less calls for an emphasis on what works and can save time  and money in the long run. Supporting caregivers of patients with ADRD is something that works and can facilitate long-term benefits for everyone.

Why Be a Caregiver and Who Does It?

Family caregivers provide care for a variety of reasons, including:

• A sense of love or reciprocity
• Spiritual fulfillment
• A sense of duty
• Guilt
• Social pressures
• On rare occasions, greed

Those who are motivated by duty, guilt, or social pressures are more likely to resent their role and experience greater psychological distress than those whose motivations are more positive. A caregiver who identifies more benefits of the role will experience less burden, better health and relationships, and greater social support (Brodaty & Donkin, 2009).

Negative experiences of caregiving often receive more attention but, as noted above, caregivers also identify positive feelings and outcomes, including:

• Togetherness and shared activities
• Bonding
• Personal and spiritual growth
• Feelings of accomplishment and mastery

Views of the caregiving role are affected by gender, age, education, and ethnicity. Levels of stress vary with characteristics of the caregiver—gender, being a spousal caregiver, other life events, physical health, family history of mental health issues, quality of relationship with care recipient, life satisfaction, low levels of self-esteem and mastery, high neuroticism, the disease stage, and needs experienced by the care recipient (Brodaty & Donkin, 2009).

Increasingly, caregivers are from diverse backgrounds and experience the role differently depending on a variety of factors. Responses to stressors as well as receptivity to information, support, and interventions are not monolithic. Recent research that looks at experiences by generation (Silent, Boomer, X, Millennial, Z) as well as ethnicity and race, marital status, employment status, education, and income, points to real differences among all these groups in perception of the role and the effects of stress. In addition, about 50% of family caregivers are performing complex care—medical/nursing tasks—which changes their experience even more (Reinhard et al., 2019).

What’s a Provider to Do?

As this class will examine, education and training materials targeted to caregivers are widely available, especially online, yet most research identifies a real lack felt by caregivers when it comes to information they need to feel confident about their caregiving. This suggests a fundamental issue with communication between family caregivers and the many “others” they encounter in their journey—healthcare providers, social services providers, and other community resources. But this is something that can be changed and improved with careful attention to what is needed and how to get it, and about the different ways that people learn.

Home Alone Revisited: Family Caregivers Providing Complex Care (Reinhard et al., 2019) identified a number of recommendations that speak to private industry, community-based organizations, researchers, and members of the healthcare and social services sector. The latter includes:

• Increase awareness of the current realities for family caregivers among the general public, health care professionals, health care delivery systems, and policy makers.
• Update assessment tools for family caregivers to include medical/nursing tasks and capture the complexity and trajectory of care.
• Public programs should include assessments of family caregivers who are providing complex care for consumers who identify these caregivers in the person-centered plan of care.
• Health care and social service professionals must elicit and respond to the worries of these family caregivers.
• Health care systems and professionals must make stronger efforts to recognize family caregivers and offer them instruction on and support for complex care.
• Health care and social service professionals must recognize that family caregivers are diverse in many ways and need proactive outreach to help them manage complex care.
• Health care and social service professional education must include preparation to support family caregivers who provide complex care. (Reinhard et al., 2019)

Not all of these suggestions can be accomplished by every provider equally, but the key message is that caregiving is in fact a community project—a public health concern—in which all members need support.