In the United States, there are nearly 44,443, 800 family caregivers over the age of 18 who are caring for someone aged 50 years and older (Alzheimer’s Association, 2011; National Alliance of Caregivers in collaboration with AARP, 2009). Family, or informal, caregivers are family members and friends who provide unpaid care and advocacy for a chronically ill or disabled person for 20 hours a week or more. As such, family caregivers are the nexus between the formal health care system and the community for many individuals. Family caregivers, also called informal caregivers as opposed to those who are paid to render care, are vital extensions of the health care system. Without them, many persons discharged from acute and rehabilitative hospitals would not be able to care for themselves. The efforts of family caregivers are so important to the health, positive mental outlook, and indeed, survival of care recipients that their services are invaluable and predicted to be needed more and more as the 21st century continues.
This is why I am so excited about my book! Supporting Family Caregivers of Adult with Communication Disorders. A Resource Guide for Speech-Language Pathologists and Audiologists represents the first time that caregiver issues and resources have been organized and put in one place for the benefit of health professionals and the families of their patients. Much of my passion for the topic of caregivers comes from my remembering how stressful caregiving was because I really did not know what to do 20 years ago even though I had advanced degrees in speech-language pathology. The purpose of putting this information in one place where it is readily accessible is to empower speech-language pathologists and audiologists and other health professionals to support family caregivers of adults with disorders of communication and swallowing.
Caregiving is a deeply personal and intensive enterprise. Many caregivers report that they have appreciated the time to forge more intimate and caring relationships with their loved ones. At the same time, a significant body of research indicates that caregiving is also costly in terms of time, effort and financial sacrifice. Many caregivers are placed in the primary role of helping others without adequate resources with which to provide the best care. Caregiving can be so stressful that caregivers can themselves develop diseases and disabling conditions which affect their caregiving and those who depend upon them. For some, the stress can be so crippling that some caregivers are forced to abandon providing care altogether, or they become terminally ill.
To that end, each chapter addresses the issues of caregiving of adults with communication and swallowing disorders. Chapter 2 gives an overview of statistics on family caregivers, caregiver responsibilities for care, the economics of family caregiving, and concepts of caregiver burden, strain and stress. In addition, information on the effects of caregiving on physical, mental and emotional health of those who provide care is also provided. Caregiving has been recognized as an important national resource. There are laws that protect and support caregivers at the local and national levels, and Chapter 2 also includes national and state legislation that supports family caregivers when they deliver care. Chapter 3 describes the diversity of caregivers and how culture and tradition prescribe who will care for disabled adults as well as how caregivers use both internal and external resources. There are important differences in how caregivers perceive and accept caregiving responsibilities across ethnic and cultural groups. These differences have implications for how caregivers manage when the responsibilities becomes stressful. There are also some differences in how caregivers may accept and comply with counseling and referrals. Chapter 4 discusses basic characteristics of various brain-based diseases and disorders that affect communication and swallowing with a focus on how these disabling conditions affect communication and swallowing disorders and to assist caregivers in minimizing communication breakdowns.
Chapter 5 is developed from the perspective of audiologists and includes basic information on hearing loss, auditory processing disorders, balance disorders, cochlear implants and hearing aids, as well as the impact on caregivers. Included in this chapter is information on helping caregivers with hearing aid upkeep. A major portion of the chapter is devoted to assistive and augmentative technologies which audiologists can use to educate caregivers of adults with hearing loss who can benefit from these devices. Perceptions of burden, strain and stress interfere with a caregiver’s ability to provide quality and sustained care.
Chapter 6 describes assessments that measure caregiver strain, burden, stress and coping with caring responsibilities. Chapter 7 introduces concepts of education and counseling caregivers within the clinical setting and within the scope of practice. Educating and training caregivers can be helpful in improving communication and providing a continuum of therapy outside of the clinical setting. Although speech-language pathologists do not provide counseling in many areas of need, resource information is provided that can be shared with caregivers that will empower them to find answers to their most important questions, like respite or hospice care, elder law, and insurance. Chapter 8 provides information on other health care professionals and their areas of expertise. It is designed to inform speech-language pathologists and audiologists about the most appropriate professionals to whom caregivers should be referred when they need counseling in specific areas outside of the scope of practice.
Chapter 9, the final chapter, describes a case of a newly-wed husband who suffers a stroke and how his stroke affects his wife and their relationship. Without support from health professionals, his wife flounders in her caregiving role. Their story ends tragically, but questions are presented to guide clinicians to avoid missing caregiver needs.
It is hoped that this book will serve as a resource for health professionals and students in speech-language pathology and audiology and that it will become part of the toolkit for assisting caregivers. It is also the intent that this resource book will be helpful to those who are involved in caregiving now and in the future.
Alzheimer’s Association (2011). Alzheimer’s disease facts and figures. Retrieved from http://www.alz.org/downloads/facts_figures_2011.pdf
National Alliance for Caregiving and AARP (2009). Caregiving in the U.S. Retrieved from http://www.caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf
About the Author
Joan C. Payne, PhD, is a Fellow of the American Speech-Language-Hearing Association (ASHA) and is a professor of communication disorders at Howard University in Washington, DC, where she has been a member of the faculty for more than 40 years. She is nationally and internationally recognized for her work in neurogenic language disorders from an ethnobiological perspective and is the 2014 recipient of the Scholar-Mentor Award from the National Black Association for Speech-Language and Hearing.