A shift to patient-centered care and implementation of the World Health Organization's (WHO's) International Classification of Functioning and Disability (WHO, 2001) necessarily expands the envelope of care beyond the patients and their respective impairment(s). Health care professionals are increasingly assessing and treating activity and participation-level restrictions, as well as considering the environment and context within which the individual with the acquired neurological communication disorder lives. Although these health care changes are positive and important, an essential but often neglected element of the patient's environment is the family caregiver.
The network of family caregivers (i.e., unpaid caregivers) who supports the lives of individuals with acquired neurological communication disorders is often invisible. As the aging population continues to grow, the use of family caregivers to assist in daily health care needs will also continue to grow. In some cases, family caregivers will experience negative effects of this new caregiving role. Third-party disability, defined as the disability experienced by others as a consequence of their family members' health condition (WHO, 2001), can lead to higher instances of depression, family strife, social isolation, as well as reduced physical and emotional well-being (Vedhara, Shanks, Anderson, & Lightman, 2000 ; Vitaliano, Young, & Zhang, 2004).
Recognizing this impending caregiving crisis at the federal level, the Recognition, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (RAISE Family Caregivers Act, 2017) was recently passed as “...a strategy to acknowledge and aid unpaid family caregivers on a national level” (Kelly, 2018). With this federal bill in place, widespread change in service delivery systems becomes a possibility. This issue of Topics in Language Disorders offers a preliminary conversation about some of the issues related to caregiving for individuals with a variety of acquired neurological communication disorders.
The first three articles (Grawburg, Howe, Worrall, & Scarinci, 2019 ; Off, Griffin, Murray, & Milman, 2019 ; Stead & White, 2019) focus on issues pertinent to family caregivers of individuals with aphasia. Off et al. (2019) review the impact of aphasia on family caregivers and describe an interprofessional caregiver intervention in the context of an intensive comprehensive aphasia program. Grawburg et al. (2019) review the impact of third-party disability in family members of people with aphasia, describe a tool for measuring the impact of aphasia on the family caregiver, and discuss the implications of integrating a family-centered approach into practice and policy. Stead and White (2019) discuss the loss of intimacy between partners that may accompany living with aphasia and describe an intervention that is designed to help couples focus on their relationship while living with aphasia.
The next three articles focus on issues pertinent to family caregivers of individuals with other acquired neurological disorders (Bourgeois, 2019 ; Mach, Baylor, Hunting Pompon, & Yorkston, 2019 ; Thiessen & Beukelman, 2019). Mach et al. (2019) discuss the impact of third-party disability relating to family caregivers of people with communication disorders associated with Parkinson's disease. Bourgeois (2019) reviews evidence-based interventions for caregivers of persons with dementia. Finally, Thiessen and Beukelman (2019) examine the learning styles and motivations of individuals without training in augmentative and alternative communication (AAC) for the purpose of understanding how best to provide instruction to new caregivers of individuals who use AAC.
With the reality of a changing health care landscape, it is essential that speech–language pathologists and related health care professionals begin to expand the envelope of care to include family caregivers and to redefine the “patient” to include both the patient and the family caregiver(s). As clinicians and clinical researchers move forward in their care of family caregivers, it will be important to document and investigate the impact that caregiver intervention and wellness may have on communicative participation for individuals with acquired neurological communication disorders. Furthermore, clinical researchers will need to explore how treating the patient and the family caregiver as a unit impacts outcomes for the patient, for the family caregiver, and for the patient–family caregiver unit as a whole.
—Catherine Off, PhD, CCC-SLP
—Kathryn Yorkston, PhD, CCC-SLP
Bourgeois M. (2019). Caregiving for persons with dementia. Topics in Language Disorders, 39(1), 89–103.
Grawburg M., Howe T., Worrall L., Scarinci N. (2019). Family-centered care in aphasia: Assessment and rehabilitation of third-party disability in family members. Topics in Language Disorders, 39(1), 29–54.
Mach H., Baylor C., Hunting Pompon R., Yorkston K. (2019). Third-party disability in family members of people with communication disorders associated with Parkinson's disease. Topics in Language Disorders, 39(1), 71–88.
Off C. A., Griffin J. R., Murray K., Milman L. (2019). Interprofessional caregiver education, training, and wellness in the context of a cohort model for aphasia rehabilitation. Topics in Language Disorders, 39(1), 5–28.
Recognition, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act, 115th U.S. Congress, S.1028 (2017).
Stead A., White J. (2019). Loss of intimacy: A cost of caregiving in aphasia. Topics in Language Disorders, 39(1), 55–70.
Thiessen A., Beukelman D. (2019). Learning styles and motivations of potential caregivers of people who rely on communication technology. Topics in Language Disorders, 39(1), 104–114.
Vedhara K., Shanks N., Anderson S., Lightman S. (2000). The role of stressors and psycho-social variables in the stress process: A study of chronic caregiver stress. Psychosomatic Medicine, 62(3), 374–385.
Vitaliano P. P., Young H., Zhang J. (2004). Is caregiving a risk factor for illness? Current Directions in Psychological Science, 13(1), 13–15.