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10/13/2008 Caregiver Strain/Caregiver Burden: Implications for Caregivers of Individuals with Aphasia Meredith Allen, B.S., Graduate Student, Department of Rehabilitation Sciences, College of Health Professions, Medical University of South Carolina, Charleston, SC | |
| Introduction Significant literature exists regarding caregiver strain and caregiver burden among caregivers of individuals with stroke and other neurological disorders. The current literature suggests that caregivers of individuals with a history of stroke may experience greater strain or burden as a result of speech and language disorders, such as aphasia, that are common post-stroke. The purpose of this brief review is to examine caregiver strain/caregiver burden among caregivers of individuals with stroke and aphasia and to highlight the impact of speech and language disorders on the caregiving experience. Background Each year more than 22.4 million persons serve as informal caregivers or individuals providing unpaid help to older persons who live in the community (Utah Coalition for Caregiver Support, 2004). According to the Utah Coalition for Caregiver Support, one in four Americans receive care from a spouse, an adult child, and other relatives or friends. The eldest daughter most typically elects to serve as the caregiver when adult children serve as caregivers. Despite changes in family size, geographic mobility, workforce participation of women, and other factors, family caregivers still provide 80 to 90% of all personal and medically related care (Utah Coalition for Caregiver Support, 2004). Unfortunately, the act of caregiving can be associated with significant “strain” or “burden.” Both “caregiver strain” and “caregiver burden” are associated with significant stress that has been linked to increased mortality (Schulz & Beach, 1999), depression (Berg, Palomaki, Lonnqvist, Lehtihalmes, & Kaste, 2005), and higher risk of cardiac events (Aggarwal, Liao, & Christian, 2008). Caregiver strain is an objective measure of the restriction of free time, family adjustments, changes in personal plans, and disturbance in sleep, while caregiver burden is both a subjective and objective measure of such factors as: anxiety, work demands, tension, loss of privacy, and an inability to participate in social activities (Rombaugh, Howse, & Bartfay, 2006). This paper considers both caregiver strain and caregiver burden (CS/CB) as an interrelated concept associated with negative effects on caregivers providing care. Caregiver Strain/Caregiver Burden and Neurological Diseases A variety of neurological disorders are known to contribute to CS/CB. For example, stroke, Parkinson’s disease, and dementia are among a host of neurologically based disorders commonly associated with CS/CB. In a review of 20 published studies of family caregiving of individuals with stroke, Han and Haley (1999) found that caregivers of stroke survivors had elevated levels of depression during both the acute and chronic phases of stroke. Significant physical, emotional, and financial burden was also associated with stroke-related caregiving; however, most caregivers were generally satisfied with their lives and had positive feelings about their roles. In a second review of CS/CB associated with individuals with stroke, Rombough and colleagues (2006) found that stroke severity, lower socio-economic status, caregiver health, the number of hours dedicated to caregiving, and the size of the caregiver social network were related to higher levels of CS/CB. Similarly, CS/CB was correlated with stroke-related outcomes. These authors concluded that CS/CB plays a major role in the recovery of stroke survivors in community-based settings. The consequences of CS/CB among caregivers of individuals with Parkinson’s disease (PD) most frequently reported include: lack of sleep, stress associated with the disease, and decreased mood (Lokk, 2008). Lokk (2008) found that longer disease duration was correlated with greater manifestations of the caregiver strain evidences. For example, more than 50% of the caregivers reported they had little understanding of their situation. Thus, the author concluded that consideration should be given to the organization and planning of the healthcare of individuals with PD who reside in the community. Similar CS/CB has been reported in caregivers of individuals with dementia. Greater stress, lower quality of life, higher clinical depression, and reduced emotional well-being are among the factors associated with CS/CB among caregivers of individuals with dementia (O’Donovan, 2004). Additionally, perceived helpfulness of community services and the quality of caregiver/dependent relationships contributed to greater CS/CB. Therefore, CS/CB has the potential to result in a caregiver’s discontinuance of care in the home setting. Risk factors for relinquishing care include: perceived impact of care giving on the caregivers quality of life, the caregiver’s perceived stress, and caregiver depression. Thus, caregivers who are significantly burdened are at greater risk of reducing or relinquishing care. CS/CB and Aphasia Greater CS/CB has been reported among patients with specific speech, language, cognitive, and motor deficits, and in particular among individuals with aphasia. (Han & Haley, 1999). Aphasia is characterized by paraphasias, word-finding difficulty, and variably impaired comprehension, and is associated with disturbance of reading and writing, at times with dysarthria, nonverbal construction and problem-solving difficulty, and impairment of gesture (Kertesz, 1979). Each year more than 700,000 people suffer from stroke, and of these stroke victims, 100,000 patients acquire aphasia each year (National Aphasia Association, 2008). Reports from the National Aphasia Association indicate that there are currently about 1 million people affected by aphasia in the U.S. Despite its prevalence in the U.S., the impact of the communication deficits associated with aphasia is reportedly one of the most neglected priorities in the U.S. today (Aphasia Hope Foundation, 2008). The communication difficulties associated with aphasia add a unique dimension to the caregiver’s experience. Studies of caregiving of individuals with aphasia indicate that caregivers experience more depression and other emotional problems than caregivers of nonaphasic patients (Le Dorze & Brassard, 1995; Michallet, Le Dorze, & Tetreault, 2001; Ross & Morris, 1988). Le Dorze and Brassard (1995) found that impaired communication resulting from aphasia negatively impacted the relationships between persons with aphasia and their spouses. Not only were their interpersonal dynamics altered, but their ability to socially interact as couples was negatively impacted. According to Le Dorze & Brassard (1995), coping behaviors were often adopted by the spouses, some of which aided in communication (explaining to others that one’s spouse had a stroke) while others inhibited communication (distancing oneself from the person with aphasia). Additional research has shown that spouses of persons with aphasia exhibit a high level of psychiatric disorders. Ross & Morris (1998) found that the degree to which caring for the person with aphasia affects the spouse’s health, financial changes in the family, communication deterioration, and the social and interpersonal implications of living with a person with aphasia were associated with psychiatric conditions. A recent study by Draper and colleagues (2007) noted that aphasia caregivers report more depression, loneliness, and marital difficulties, as well as greater changes in role. The effects of aphasia on a marriage can be greater strain than in a less intimate relationship. For example, caregivers find their spouses to be much changed in terms of what and how they can understand and express. Similarly, in an examination of the needs of the caregiver-spouses, Michallet, et al. (2001) found that there are at least six categories of needs that the caregiver-spouse may experience at various points post-discharge. Those categories of need were: information, the need to acquire an effective mode of communication with the aphasic partner, better interpersonal relationships, the need to be considered as a partner in the caring process, support, and respite. These needs highlight the complexity of challenges common to caregivers of people with aphasia. Subsequently, CS/CB can result when the caregiver’s and stroke survivor’s needs go unmet. Further, perception of the communication deficit has significant impact on CS/CB. A recent study using the Stroke and Aphasia Quality of Life Scale (Hilari, Owen, & Farrelly, 2007) noted that the caregiver is more likely to sense a greater disturbance in living and a greater loss of functioning than the person with aphasia. Therefore, this mismatch in the perception of the loss of function represents an imbalance in the perceived impact of aphasia. Thus, this lack of concordance between caregivers and stroke survivors regarding the impact of aphasia has the potential to compound baseline difficulties associated with the consequences of aphasia. Conclusions Caregivers of individuals with aphasia are at significant risk for developing CS/CB. Speech-language pathologist’s (SLPs) can play a key role in the prevention or reduction of CS/CB by reducing the barriers associated with communication. Specialized speech-language treatments and the use of augmentative communication strategies can provide improved communication and subsequent reductions in CS/CB. SLPs should be keenly aware of the consequences of CS/CB and address those issues during family education sessions and highlight the need for relief time for caregivers. SLPs should have information on respite care services to offer the caregivers. Similarly, they should be aware of the available community resources and support that can provide encouragement to the strained caregiver. Williams (1993) found that increased knowledge about aphasia reduced the negative impact and subsequently improved marital satisfaction. Therefore, knowledge of the difficulties associated with communication deficits in aphasia is the key to the reduction of CS/CB. Strategies to reduce CS/CB should extend beyond immediate caregivers to the individuals with aphasia, thereby allowing individuals with aphasia to be better able to re-integrate into their communities with the support and assistance of their caregivers. Acknowledgments I wish to thank Dr. Charles Ellis, Ph.D., CCC-SLP for assistance with this article. References Aggarwal, B., Liao, M., & Christian, A. (2008). Family cardiac caregivers may have higher heart disease risk. American Heart Association’s 48th Annual Conference on Cardiovascular Disease Epidemiology and Prevention. Retrieved September 1, 2008 from americanheart.mediaroom.com Aphasia Hope Foundation. (2008). Retrieved September 1, 2008 from www.aphasiahope.org/ahf_story.jsp Berg, A., Palomaki, H., Lonnqvist, J., Lehtihalmes, M., & Kaste, M. (2005). Depression among caregivers of stroke survivors. Stroke, 36(3), 639-643. Draper, B., Bowring, G., Thompson, C., Van Heyst, J., Conroy, P., & Thompson, J. (2007). Stress in caregivers of aphasic stroke patients: A randomized controlled trial. Clinical Rehabilitation, 21(2), 122-130. Han, B., & Haley, W. (1999). Family caregiving for patients with stroke. Stroke, 30, 1478-1485. Hilari, K., Owen, S., & Farrelly, S. J. (2007). Proxy and self-report agreement on the Stroke and Aphasia Quality of Life Scale-39. Journal of Neurology, Neurosurgery, and Psychiatry, 78(10),1072-1075. Kertesz, A. (1979). Aphasia and associated disorders. Taxonomy, localization, and recovery. New York: Gune & Stratton. Le Dorze, G., & Brassard, C. (1995). A description of the consequences of aphasia on aphasic persons and their relatives and friends, based on the WHO model of chronic diseases. Aphasiology, 9(11), 239-255. Lokk, J. (2008). Caregiver strain in Parkinson's disease and the impact of disease duration. European Journal of Physical Rehabilitation and Medicine, 44(1), 39-45. Michallet, B., Le Dorze, G.,& Tétreault, S. (2001). The needs of spouses caring for severely aphasic persons . Aphasiology, 15(8), 731-747. National Aphasia Association. (2008). Aphasia: Frequently asked questions. Retrieved September 1, 2008 from www.aphasia.org/ National Institute on Deafness and Other Communication Disorders. (1997). Aphasia. Retrieved September 1, 2008 from www.nidcd.nih.gov/health/voice/aphasia.asp O’Donovan, S. (2004) Dementia: Caregiving burden and breakdown. Retrieved September 1, 2008 from www.cncforum.me.uk Rombough, R. E., Howse, E. L., & Bartfay, W. J. (2006). Caregiver strain and caregiver burden of primary caregivers of stroke survivors with and without aphasia. Rehabilitation Nursing, 31(5), 199-209. Ross, S., & Morris, R. (1988). Psychological adjustment of the spouses of aphasic stroke patients. International Journal of Rehabilitation Research, 11(4), 383-386. Schulz, R., & Beach, S. R. (1999). Caregiving as a risk factor for mortality: The caregiver health effects study. Journal of the American Medical Association, 282(23), 2215-2219. Utah Coalition for Caregiver Support. (2004). What is caregiving? Retrieved September 1, 2008 from www.caregivers.utah.gov Williams, SE. (1993). The impact of aphasia on marital satisfaction. Archives of Physical Medicine and Rehabilitation, 74(4) 361-367. | |