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The Stress and Stigma of Caregiving

Caregivers are a critical national healthcare resource. An estimated 43 million Americans, over the age of twenty, function as informal caregivers, who provide unpaid care to an ill or disabled family member or friend who is 50 years or older. Caring for a spouse, parent or other family member who is battling severe mental or physical illness is a labor of love, but one that is often inundated with stress.

Stigma of Caregiving

Stress associated with caring for a mentally ill or aging family member can adversely affect the health status of caregivers. Adding to the stress of caregiving is the stigma often placed on individuals caring for people with a mental illness. In 2001, the World Health Organization declared stigma and discrimination associated with mental disorder to be the single most important barrier to overcome in the community. Stigma affects people with mental illnesses, as well as their families. In addition to chronic stress and its physical, psychological and physiological impact on caregivers, some caregivers endure the social stigma of providing care to a person with a mental illness. Often times, experiencing such stigma can cause serious setbacks, including delayed diagnosis.

A new survey from the Alzheimer’s Foundation of America reports that when people with Alzheimer’s disease are concerned about stigma, a diagnosis of Alzheimer’s disease occurred on average 3.5 years after symptoms appeared. When caregivers are concerned about stigma, delay of diagnosis is even more severe, averaging 6 years. Such delay in diagnosis is a huge and unnecessary setback for people with Alzheimer’s disease and their caregivers.

Stress of Caregiving

Research has shown that members of stigmatized groups are at greater risk for health problems such as depression, hypertension, coronary heart disease, stroke, and even morbidity, when compared to non-stigmatized groups.

The build up of stress from caregiving and the stress response caused by perceived stigma can cause a chronic stress response in caregivers, and lead to cognitive and mental health problems in these populations. Specifically, caregiver stress has been linked to clinical depression and anxiety, lower perceived health status, elevated blood pressure, heightened cardiovascular reactivity, and lower immune function. Furthermore, caregiving has been identified as an independent risk factor for death, with a 63% increased risk of death in individuals experiencing strain over a 4-year period.

Caregiving maintains all the features of a chronic stressor. It maintains psychological and physical strain over long periods of time, has the capacity to create secondary stress in various areas of life such as the workplace and family relations, and it is frequently accompanied by high levels of unpredictability and often requires demanding vigilance. It is well documented that caring for a family member with a physical or mental health problem is a significant chronic stressor in humans. In fact, caregiver stress is currently seen as a human model of chronic stress in the stress literature.

The experience of caregiving for a mentally ill family member comes with numerous strains and often is a cause of adverse health effects. The addition of a society that is perceived to be rejecting and stigmatizing makes life even more stressful and arduous for caregivers.

More information on the different resources available on Louis-H. Lafontaine Hospital website (French Only)