Family Caregivers Need Care, Too

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Family caregivers are the infrastructure upon which the lives and well-being of millions of frail elders rest. Without their presence, and without their filling in healthcare gaps to coordinate and manage care for their loved ones, whole segments of the healthcare industry would simply collapse.

Although caregivers can find the experience of helping others to be a rewarding one, most pay a physical, emotional and financial toll for their effort. Caregivers, who are often themselves midlife and older women, can compromise their own well-being. Those who leave the workforce to care for another adult lose hundreds of thousands of dollars in income, retirement contributions, and Social security.

Family caregivers are essentially volunteers for long-term care. They routinely plan care, making decisions large and small, that affect the lives of loved ones. They are care managers and coordinators, as well as providers. A 2012 United Hospital Fund and AARP study reported that nearly half of family caregivers provide complex medical care to loved ones–usually, with little or no training in what to do things as they manage medications, clean wounds, change IVs, and more.

Despite their tremendous responsibility for making the plan work, caregivers are seldom integrated into the care plan itself. MediCaring aims to change that dynamic, by identifying, recognizing, and supporting caregivers, and engaging them in development of a comprehensive care plan. While caregivers may appreciate the chance to help a loved one by providing intimate, intense care, they can also feel overwhelmed and exhausted by the tasks at hand.  MediCaring understands that caregivers are, in fact, the anchor of the care team.

To this end, MediCaring teams will assess caregivers, too, and understand their capacity to provide care. What is the their health status like, how are they doing? What challenges do they face, what concerns do they  experience? How is that information processed and addressed in the care plan? Does the plan also include ways to care for the caregiver?

Caregivers can benefit from a partnership with health care and social service providers.  Existing family-centered care models consider caregiver input essential for providing strategic and expert services for both the health and well-being of the care recipient and the caregiver.

The MediCaring team will be trained to recognize the level of support that caregivers need, and to provide information and resources that address those needs. MediCaring teams will also  recognize that caregivers these widely different needs will change over time and as an elder’s condition progresses or worsens.

Assessing caregivers is essential, as is a mechanism for offering them respite services.  Caregivers who feel burdened or overwhelmed experience declines in their own health. By offering services that enable caregivers to  become more competent and confident in providing safe and effective care to their loved ones, Medicaring will reduce some burdens and stress. Research indicates that such interventions must be multifaceted, including both training to enhance efficacy and personal support for emotional and coping skills.

Caregivers who serve as health care proxies face additional stresses. Making decisions for and about another adult is a difficult role to play. Those caring for people with dementia repeatedly face this challenge, and yet often receive little context or training to interpret the meaning or urgency of what a loved one needs.

Navigating the health care system is an onerous task, even for healthy adults. For those who are ill, or vulnerable, or overwhelmed, it can become impossible., Although a number of new programs have been developed to train caregivers, caregivers remain home alone, with inadequate knowledge and resources to deliver proper care.

PBS NewsHour released a telling infographic: “The $234 billion job that goes unpaid,” which characterizes the context of such caregiving. If family caregiving were a federal agency, it would be the fifth largest. Would policymakers simply ignore an entire nation? Or would we aim to help its citizens overcome challenges and realize opportunities? Would we invite them to the table, to conference rooms and negotiations? Would we want them to succeed? It all seems likely—and yet, we have not.

Our healthcare system—and our society—pay lip service to the value of such care, but seldom delivers the supports and services that would

key words: Joanne Lynn, Janice Lynch Schuster, MediCaring book, frail elders, family caregivers

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