The Family Caregiver's Manual. David Levy

      Development of The Family Caregiver’s Manual has been a work in progress and will continue to be even after publication of this revised edition. Receiving the recognition of the Florida Council on Aging (FCOA), which awarded the Manual the 2013 FCOA Quality Senior Living Award for Senior Vision in Media, has made this effort even more gratifying.

      When my editor Brenda and I undertook the Herculean task of preparing this edition of the Manual, we knew the content had become even more relevant in the three years since the first edition was published. Those three years saw major developments in the growing need for family caregiver education and support, including new information on a wide range of disabilities and diseases and advancements in the acute care healthcare system that will have long-ranging effects. This new edition is not only an update and enhancement of what we have done previously, but it also underscores the fact that as the number of family caregivers has increased by more than 10 million since 2010, the role of unpaid family caregivers has grown ever more important.

      Because of the increasing complexity of care, both clinical and nonclinical, the skill set needed for unpaid family caregiving has never been more formidable. Not in recent memory have our innate human instincts and learned skills been so misaligned with those needed to solve the practical problems encountered by unpaid family caregivers and the broad spectrum of demands placed on them.

      While home care provided by paid caregivers is clinical, the tasks performed by informal caregivers are not. Understanding and providing the clinical care required is necessary (e.g., providing correct wound care, ensuring insulin injections are at the proper dosage and given at the proper time, and correctly taking blood pressure). However, as my colleagues and I have monitored the tasks performed by thousands of unpaid family caregivers and paid caregivers in the home over more than twenty-five years, we have found that clinical care comprises only 15 percent of the family caregivers’ efforts. The remaining 85 percent of their caregiving time is used for nonclinical care—to do practical problem solving for everything that is not clinical (e.g., addressing legal and insurance issues, arranging medical appointments, providing or arranging for transportation, and resolving family conflict). Moreover, the demands of meeting physical needs typically increase in complexity, as does the challenge of solving day-to-day practical problems such as accessing additional resources.

      Thus, the need to prepare today’s family caregivers for the inevitable increase in practical problem solving is a given, but we also need to acknowledge that our homes will remain the de facto setting for care. Even now institutional settings are limited and often inadequate in terms of quality of care, and with rapidly increasing demand for care in all settings, finding quality care outside of the home will become increasingly difficult and expensive.

      Home is where we are most comfortable and where care is most affordable. There is no “game book” for this, no standardized set of rules, guidelines, and solutions that will meet the diverse care needs of millions of families. The only option available for family caregivers is to have a Plan designed to meet their loved ones’ needs and for everyone to be flexible and realize their limitations.

      It is becoming very obvious to family caregivers and, at long last, to the public at large and a broad range of decision makers in government and healthcare systems that home-based care provided by unpaid family caregivers is the only viable option for the majority of chronic care in the coming decades. The services provided by community-based organizations are at capacity. Funding from private, state, and federal sources is diminishing. Demands for qualified, paid in-home workers cannot be met. Home-based care is not just an option for care—it is a necessity and likely to be the only option for care for most families.

      Today, many facilities are full or have lengthy waiting lists for admission, while fees for institutional care are rising annually. If placement in a facility is required and can be arranged, the “roof” over the head of the person needing care may change, but the importance of the role of unpaid family caregivers will be unchanged because now they must become active advocates in a non-home setting. As advocates, unpaid family caregivers must act as quality-control agents, following the Plan and monitoring care to ensure their loved ones receive the services they have a right to receive and their dignity and well-being are maintained. Those same unpaid family caregivers need to build new skills and acquire knowledge to effectively work within the bureaucracy that is the long-term care facility system.

      Make no mistake: No matter the setting, well into the twenty-first century the backbone and front line of patient care and advocacy will be unpaid family caregivers. Without them, the entire American healthcare system will collapse.

      Unpaid family caregiving is constantly morphing. As longevity increases, demographics and family structure change, and cultural and societal adaptations play out, new problems are created even as some problems are solved. Care needs for people of all ages created by chronic illnesses, disabilities, and accidents will not decrease. As the Baby Boomers age, their children, spouses, and significant others will begin to assume the role of family caregiver. Thus, the next few decades will find the United States with upwards of 70 to 80 million unpaid family caregivers.

       Well into the twenty-first century the backbone and front line of patient care and advocacy will be unpaid family caregivers.

      Typically, the role of unpaid family caregiver is “bestowed” without any formal training, awareness, or support from traditional resources (e.g., doctors, lawyers, financial advisers). New family caregivers who are lucky enough to find available community resources are also likely to find those resources overwhelmed, underfunded, and short of space. This reality will continue to be the norm rather than the exception.

      The bulk of America is rural