The Caregiver Bind

Caregiving is often broken into three silos: financial, emotional, and physical, though the tasks required rarely conform to just one of these capacities. The family and loved ones who become caregivers provide advocacy, dignity, love, comfort, inclusion in family, familiarity, and it’s often through this emotional framework that caregiving is undertaken. The physical requirements of care can be demanding and exhausting, but it’s the emotional elements that both fuel caregiving and that can make the caregiver vulnerable to mental and physical illness.

Caregiving begins out of necessity and often the uninformed willingness to reshape one’s life on behalf of the care recipient, without an accurate idea of the financial, physical, or mental demands. This phase of caregiving requires intensive self-education and a steep learning curve. During this time a primary caretaker usually emerges, who will experience outsize responsibility for the recipient, and consequently, the greatest degree of sacrifice and burden to their own lives, careers, and families.

While all individuals in a family or network of caregivers may feel a natural protectiveness over the care recipient, it is often most pronounced with the primary caretaker and deepens with time and the complexity of responsibility, creating an almost conspiratorial dynamic between the caregiver and the dependent.  The care recipient, if mentally alert, struggles with a loss of independence, and often the caregiver seeks to assuage these feelings by downplaying their contribution; a phenomenon known as the caregiver bind. Unfortunately, by downplaying or concealing their responsibilities, caregivers not only minimize their contribution, but also minimize the degree of disruption to their daily lives and the mental/psychological ramifications of caregiving.

The Cost of Caregiving

Emotional and physical experience involved with providing care can strain even the most capable person. Research shows that caregivers suffer significant changes to their mental and physical health, this is particularly true for those caring for spouses, or dependents with cognitive decline, or those whose caregiving exceeds 36hrs per week. Caregivers are also less likely to have health insurance as a result of being out of the workforce. The combined effect of sacrificing personal physical and emotional needs, as well as the isolation of providing continual care and the need to “protect” the care recipient can result in depression and illness. 40% – 70% of caregivers have clinically significant levels of depression, and those caring for someone with dementia are twice as likely to suffer from depression.  The more severe the dementia, or the more the care receiver’s functional status declines, the more likely the caregiver is to develop depression.

Depression can look very different in male and female caregivers, but is marked by negative feelings, sadness, irritability, and exhaustion that are unrelenting.  Depression doesn’t often occur on it’s own, but rather is accompanied by anxiety, stress, and frustration.  Cognitive stress has been linked to cognitive decline; a decrease in verbal IQ, attention span, and short-term memory. These feelings of uncertainty, self-doubt, loss of personal identity, anger, and helplessness can all make the guilt of struggling with caregiving that much more pronounced; leading caregivers to avoid getting the help they need, and sometimes to unhealthy coping mechanisms. Sometimes, help comes in the form of respite, allowing the primary caregiver to catch up on sleep or focus on the small changes that can make a big difference, like exercise and diet. Therapists can also be a great resource, as they can provide an objective, non-judgmental ear, as well as guide the caregiver towards strategies for managing stressors. In the event of more serious depression, a therapist can ensure that the caregiver is receiving treatment and/or medication that helps symptoms abate over time.

Unmanaged stress and depression are contributing factors in the development of physical illness, and it’s a well-recorded phenomena in caregivers, who are at greater risk for a number of diseases and conditions. Studies have shown that caregivers are at greater risk for high blood pressure and heart disease, and report twice as many chronic conditions as non-caregivers, such as arthritis, cancer, and diabetes. A survey of caregivers found that over half self-reported as fair to poor health status. Perhaps more surprising is the fact that caregivers have been found to have 15% lower antibody responses, and 23% higher levels of circulating stress hormones. This diminished immune response can lead to frequent infection and increased risk of developing cancers.

Next Page: The Future of Family Caregiving

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