Current and possibly conservative estimates are that more than 34 million people in the United States provide care for a family member or friend who is elderly or who has a disability or chronic illness. Of the nation's caregivers, 58% are female and 42% are male. The typical family caregiver is a working, married, middle-aged woman who provides 20 hours per week of unpaid care for her mother. However, it should be emphasized that children and young adults participate actively in family caregiving as well, although most are not the sole providers (National Alliance for Caregiving and the United Hospital Fund, 2005; Houser & Gibson, 2008).
Extended families sometimes share the care of their elder members. Frankie Harp, 90 (left), a stroke survivor, resides with her close-knit family, including 5-year-old grandson, Joshua Harp; daughter-in-law (and ASHA member) Wilhelmina Wright-Harp, her caregiver; and son, Oscar J. Harp III, also a caregiver. Photo by Oscar Harp.
Caregivers are those persons who provide unpaid assistance for the physical and emotional needs of another person, ranging from partial assistance to 24-hour care, depending on the severity of the disease, disorder, or condition. Family caregivers include those who have the major responsibility (primary caregivers) and those who provide support to the primary caregiver (secondary caregivers) (Keith, 1995). Today's caregivers may include adults who are caring for their chronically ill children or grandchildren, children and young adults who are helping to care for a parent or grandparent, spouses who are caring for war veterans disabled by traumatic head and other severe injuries, relatives who are caring for children or adults who are HIV-positive, older adults who are caring for their spouses with neurologic disorders, or adult children who are caring for their aging parents who are no longer functionally independent.
Regardless of the circumstances that require care, family caregivers across all demographics face similar pressures and concerns related to the severity of the disability of those receiving care, the financial hardships imposed by caregiving, and the limitations or access to services that would ease the burden of care. These stressors can have a direct bearing on how well caregivers are motivated to help their loved ones participate in intervention programs such as those typically designed in speech-language pathology and, to a lesser extent, hearing aid testing and fittings and aural rehabilitation.
Caregiving is a complex, deeply personal, and culturally derived process. Many cultural caregiving expectations are gender- or generation-specific. Across cultures, women are generally expected to perform caregiving duties, yet there are variations in how cultural groups perceive caregiving. Ethnic minorities are more likely to adhere strongly to belief in the filial obligation to care for elderly parents and, therefore, receive more informal supports for caregiving. There are also differences in the perception of whether caregiving is perceived as a burden and in how caregivers buffer stress. In a study that reviewed articles comparing Caucasian Americanto African American and Hispanic caregivers, it was noted that African Americans were less likely to report feeling burdened by caregiving responsibilities. African American and Hispanic caregivers also endorsed more strongly held beliefs about filial support, received more informal help, and were morelikely to use prayer, faith, or religion as coping mechanisms (Connell & Gibson, 1997). The effects of caregiving also differ between groups in that caregivers of all ethnic minorities report worse physical health than Caucasians, and Hispanic and Asian American caregivers are more likely to report that they are depressed than Caucasian American caregivers. Although the health disparities between Caucasians and ethnic minorities are well documented, research suggests that the burdens of caregiving weigh more heavily on ethnic minorities because their personal resources are scarcer (Pinquart & Sørenson, 2005).
Understanding cultural norms may help practitioners to look belowthe surface even though caregivers may not express problems. In some ways, cultural expectations serve to define roles more clearly. However, these expectations may cause some caregivers to be less inclined to complain or to ask for help if they feel overwhelmed.
Feelings of sadness, anger, and anxiety combined with the deleterious effects on health such as chronic illness, premature aging, and death can take such a toll on caregivers that they are unable to maintain a consistent level of support. As an example, elderly spousal caregivers with a history of chronic illness themselves and who are experiencing caregiving-related stress have a significantly higher mortality rate than their non-caregiving peers (U.S. Census Bureau, 2005).
When planning a program of intervention, therefore, practitioners need to consider family caregiver support as one of the crucial indices for determining patient prognosis in treatment. Caregiver participation may indirectly affect several areas related to intervention. Patient motivation and enthusiasm, a patient's ability to get to clinical appointments and participate in intervention treatment, and a patient's capacity to reach or exceed treatment goals may be attributable to the involvement of family caregivers in the treatment process. Family caregivers may also contribute directly to intervention through carry-over activities they provide outside of the clinical setting in a more natural setting.
Role of the SLP and Audiologist
Because family caregivers play such important roles in a patient's progress and also in how long a patient participates in services for speech, language, and hearing disorders, practitioners need to devote part of their intervention plans to educating and supporting them.
Practitioners can be of help to caregivers in three areas:
- Clarifying how specific health issues result in communication disorders
- Assessing caregiver stress to make appropriate referrals to other professionals who treat stress-related disorders
- Providing resource information
Clarifying Diagnoses and Impact on Communication
Primary health care providers have tremendous responsibilities for stabilizing and monitoring critical health concerns. However, patients and their caregivers may not completely understand the long-term implications of medical diagnoses for daily functioning, including communication. Speech-language pathologists and audiologists may reduce some caregiver stress by providing additional information about the medical reasons for communication disorders.
An approach described by Jungbauer, Döll, and Wilz (2008) suggests that caregivers have differing needs at different points of caregiving. During the initial, acute hospitalization period, caregivers may desire more detailed information about the nature of the disease or illness. In contrast, during the outpatient rehabilitation period, caregivers may need more emotional assistance. The first step in providing information to family caregivers about the nature of the communication disorder should be to assess what they know and then to supply whatever information is missing, avoiding medical terms and jargon as much as possible (Payne, 1997; Clark, 1991).
Suggested questions to help plan an educational program could be:
- What do you understand (or what have you been told) about the patient's disease?
- How has the patient's disease affected you and the other members of your family?
- What changes in the patient's personality or behavior have you observed?
- What do you already know about language, speech, or hearing?
- How do you think the patient's communication has been affected by the disease or disorder?
- How did the patient express wants and needs before the medical or health change (if appropriate)?
- How do you think speech-language pathologists or audiologists work with patients with similar communication disorders?
- What do you do now to help the patient communicate?
- How does the patient react when unable to communicate with others?
- What are your most urgent concerns about the patient's communication disorders?
Assessing Stress and Making Appropriate Referrals to Other Professionals
The second step is to help caregivers identify the kind of emotional support they need at various stages of their caregiving (Raine et al., 2005).
Given the myriad problems facing caregivers, practitioners need to identify caregiver perceptions of their problems and refer them to appropriate professionals. A number of questionnaires are designed to screen for caregiver stress.
Although stress management is outside of our scope of practice, these instruments can be useful in enabling practitioners to make the most appropriate referrals. One interview schedule for screening caregiver stress is the Zarit Burden Interview (Bedard, Molloy, Squire, Dubois, Lever, & McDonnell, 2001), a 12-item questionnaire that uses a five-point scale. Another example is the Alzheimer's Association eight-item Caregiver Stress Check, an interactive checklist that provides resource information for caregivers of persons with Alzheimer's disease based on caregiver responses. Both instruments can assist in referring caregivers to other professionals who manage stress-related problems, such as grief, family, or spiritual counselors; social workers; psychologists and psychiatrists; and primary care physicians. Referrals to legal specialists or to university-run legal clinics may be helpful for matters related to protecting family or patient assets and end-of-life arrangements. Social work professionals can help by arranging for respite care, in-home care, or home-delivered meals to help caregivers find some free time to re-energize.
SLPs and audiologists should routinely inquire about any major changes in how caregivers are coping or whether their roles have changed as a result of differences in the status of an illness or disorder, and listen compassionately to the answer. Making appropriate referrals when people express difficulties with coping is time-sensitive. A referral should be made as soon as there is an indication that caregivers are having difficulties in coping with their responsibilities or when there are major changes in the continuum of acute care, rehabilitation or outpatient care, institutional care, or community re-entry (Cameron & Cignac, 2008). Recognizing changing support needs will enable practitioners to provide more relevant support and referrals to appropriate professionals.
Caregivers can also benefit from support groups. Most national organizations, like the American Heart Association, the Alzheimer's Association, and the Brain Injury Association of America, among others, have local offices that can provide information on community support groups. It is helpful to identify support groups that are accessible by public transportation and that hold daytime, evening, and weekend meetings in various settings.
Providing Resource Information
Family caregivers are more likely to live in poverty, more likely to have lower median incomes, more likely to have higher out-of-pocket expenses related to caregiving, and more likely to lose wages as a result of caregiving at home than persons who are not similarly engaged (Altman, Cooper, & Cunningham, 1999).The cost of services for speech-language treatment, hearing aids, and aural rehabilitation services, as well as lack of transportation, have been cited as major factors in why patients do not participate in treatment or discontinue treatment prematurely (Wallace & Freeman, 1990; Damon-Rodriguez, Wallace, & Kingston, 1994; Scott & Drucker, 1995); therefore, it is important to assist family caregivers in identifying resources for problems in these areas.
SLPs and audiologists can compile and make available a list of community resources for transportation to and from clinical settings through houses of worship, senior centers, and community health facilities. Many community organizations offer door-to-door transportation to medical and other health appointments for people with chronic disabilities for little or no cost. Additionally, community charities, religious organizations, and local agencies may fund one-time hearing aid fitting and purchase and aural rehabilitation, an augmentative and alternative communication device, and short-term intervention for speech and language difficulties.
Other community-based organizations may provide partial or full reimbursement for home-based intervention. Family caregivers may also qualify, but have not applied, for municipal, state, or federal benefits to pay for services. A listing of Medicaid, Medicare, and Social Security offices and contact information for special circumstances would be helpful, particularly if English is not the primary language or caregivers have visual or literacy limitations.
Other health care professionals also provide resource information, but often family caregivers feel inundated and overwhelmed, particularly at the beginning of the care cycle. Patients are referred to SLPs and audiologists after health crises have stabilized, when caregivers may be better able to follow through on resource information that is specific to service delivery in communication disorders.
SLPs and audiologists should include addressing the needs and concerns of caregivers in their intervention plans for patients. Specifically, practitioners can provide education about communication disorders to caregivers, help identify problem areas in caregiving, make appropriate referrals to other professionals, and follow up with resource information that enables caregivers to assist patients to participate in intervention programs.