Caregiver Strain/Caregiver Burden: Implications for Caregivers of Individuals with Aphasia

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.