By Janie Hu, BSc, MD Candidate
When family members lose the ability to function independently, many people assume the role of an informal caregiver. These unpaid individuals help others, who have a chronic illness or debilitating condition, with the activities of daily life. Some of their tasks can include assisting with basic needs such as preparing meals, bathing, using the toilet, and dressing.
They also fulfill medical needs, such as making medical decisions as the power of attorney, or giving medications and setting up home dialysis. The caregiver’s responsibilities are markedly broad in scope and require a substantial time commitment.
While caring for family members can be rewarding, it is also a physically and mentally demanding task. With the onus of fulfilling the care recipient’s personal and medical needs, the caregiver shoulders significant liability.
According to the National Alliance for Caregiving and AARP, family caregivers provide an average of 24.4 hours per week of care, and almost a quarter of these caregivers contribute 41 hours or more per week.
Still, the role of the caregiver is constantly evolving as the recipients become increasingly dependent over time, with ailments like dementia, frailty, or cancer.
“Caregivers who cared for an older adult with numerous needs spent 253 hours per month.”
For instance, caregivers of dementia patients spend an average of 9 hours per day providing care, which adds up to a staggering 63 hours per week. In an article published by the National Academy of Sciences, it found that 15 per cent of caregivers provided care for longer than 10 years at the time of the survey. The median length of time dedicated to caregiving for recipients that needed help with two or more self-care activities was four years. If the recipient had dementia, the median number of years of caregiving increased to five.
Caregivers that only assisted with household tasks reported spending 85 hours per month completing these activities. On the other hand, caregivers who cared for an older adult with numerous needs spent 253 hours per month. To put this into perspective, 253 hours per month is comparable to two full-time jobs.
Despite a lack of professional training, they take on the full brunt of responsibility to provide medical and nursing care at home. As one would expect, as much as 45 per cent of caregivers report distress, which often leads to a deterioration in physical and mental health.
The formal term given to this occurrence is ‘caregiver burnout’. Caregiver burnout is a state of exhaustion that occurs when the burden of care becomes overwhelming. The affected individual feels physically, mentally, and emotionally depleted. They often feel isolated, underappreciated, and lacking support. As most of their time is dedicated to their care recipient, the caregiver is left with insufficient time to take care of themselves.
This immense strain on their well-being ultimately ripples to the person being cared for.
In a study conducted by the Journals of Gerontology Trusted Source, caregivers under significant strain were at a greater risk of dying than caregivers who reported minimal strain. Not only is this strain detrimental to the caregiver, the harm is extended to the person that is reliant on them.
Additionally, as caregiver burnout is often accompanied by a change in attitude from positive to detached, the occurrence of mistreatment likely rises. Approximately five million Americans aged 60 and older have experienced elder abuse, which increases the relative risk of mortality by 300 per cent.
In 2015, around 43.5 million Americans reported being caregivers. In the National Alliance for Caregiving and AARP Public Policy Institute survey, 40 per cent of these caretakers felt emotional stress, and 20 per cent experienced physical strain. Another 20 per cent claimed the caregiving resulted in financial problems. These statistics highlight how widespread the risk of caregiver burnout is.
“The growing sense of futility can be extremely distressing.”
According to Families Caring for an Aging America, a contributing factor to the stress may be the ambiguity experienced as individuals take on the caregiving role. As the majority of caregivers have a familial relationship with the recipient, they are forced to redefine their role in the recipient’s life. For instance, the child of the recipient may experience the role reversal of the parent-child relationship. Unsurprisingly, this can be difficult to get used to and come to terms with.
Another source of stress that caregivers face is the unpredictability of their relative’s illness.
The fickle, yet progressive, nature of a chronic condition may lead to uncertainty about the future. Even with the best care, the care recipient’s condition will often continue to deteriorate. The caregiver may feel that his or her effort and commitment is in vain. As the relative’s condition progressively worsens, the growing sense of futility can be extremely distressing.
On the other hand, there are patient populations that experience short-term bouts of disability. In care recipients that have a heart attack or undergo cancer treatment, the caregiving role may be sudden and intense. In these situations, caregivers may be suddenly ushered into the caregiving role after an unforeseen diagnosis or otherwise catastrophic event.
In light of the commonness of caregiver burnout, it is important to identify strategies to prevent burnout from happening in the first place.
“Caregivers also need a support system of their own.”
In an article published by the Journal of Patient Experience, tips to avoid burnout are discussed. The first tip is to become educated about the disease. The rationale behind this is that the more informed the caregiver is, the more comfortable and prepared he or she can be with potential upcoming changes.
Another important tip is for caregivers to ensure they are taking care of themselves. This includes acknowledging and addressing their own emotional and physical needs.
Additionally, a caregiver should continue to stay social to the best of their abilities in order to avoid feeling isolated. While caregivers constantly provide emotional support to those they care for, caregivers also need a support system of their own. An extension to this notion is accepting help. Caregivers shoulder a sizable burden and should admit when they need an extra helping hand.
Caregiving for family members is a common practice that demands a substantial amount of time and devotion. In addressing the prevalence of caregiver burnout and its associated challenges, efforts can be directed to protect the well-being of caregivers.
After all, caregivers need to maintain their own health in order to continue providing care for others.
As flight attendants say, “Put on your own mask before putting on the mask of another.”
Copyright© 2020 by Janie Hu