Julie has many roles to fill. She is a wife, a mother, a daughter, an employee and now she is a caregiver. Julie’s mother was diagnosed with dementia and she can no longer live on her own. She moved in with Julie, who now makes sure that her mother is clean, fed and takes her daily medicine. Recently, Julie has felt very tired and depressed. She often has to force herself to help her mother with daily tasks.
Like Julie’s mother, Tom’s wife is chronically ill and is unable to perform many daily tasks or help take care of their family. Tom is the breadwinner of their household and when he comes home he must do what his wife cannot. Tom is embarrassed to admit that at times he feels resentful and angry because of his wife’s illness.
Family caregivers are vital to the health of those with illnesses as well as the health care system. Not only do they know the patient better than anyone else, they also provide many hours of care that would be costly to someone paying for the same service. It is estimated that 15.5 million caregivers care for older adults with dementia (Day et al, 2014). All together these caregivers put in 17.7 billion hours of care that would cost the health care system $220.2 billion to reimburse (Day et al, 2014). This doesn’t include those caring for a family member with other chronic or terminal diseases. “Family caregivers are essential to the healthcare system, yet they reportedly experience negative psychological consequences, such as depression, anxiety, and stress as a consequence of providing care” (Day et al, 2014).
Both Julie and Tom are experiencing compassion fatigue. Some researchers define compassion fatigue as “the combination of helplessness, hopelessness, an inability to be empathic, and a sense of isolation resulting from prolonged exposure to perceived suffering” (Day et al, 2014). Others define it as feelings of depression, anger, apathy or inefficacy because of the caregiver’s inability to cope with the stress of caring for someone with a chronic or debilitating illness (Day et al, 2014).
Compassion fatigue is not an instant result of caring for an ill family member. It comes slowly over time. Coming to compassion fatigue is a process. It begins with the caregiver showing empathy and concern for the ill person. Many times, the caregiver is unable to detach him or herself from the caregiving role. This may be due to the relationship they have (a child caring for an older parent, a spouse caring for their husband or wife, etc.) or because of the lack of support and relief. When a caregiver is continually exposed to suffering and competing demands on his or her time, the compassion stress moves to compassion fatigue (Day et al 2014).
This is a complex issue, resulting from a combination of factors. Some of the factors that cause stress and fatigue consist of the framework of care (Papastavrou et al, 2007). The framework includes the characteristics of the caregiver, the relationship between the caregiver and the patient and the available support. Another factor is the stressful circumstance of caring for someone. There can be primary stress coming directly from caring for the patient or secondary stress resulting from other demands on the caregiver (Papastavrou et al, 2007). A third factor is the perception of stress and the caregiver’s ability to manage and cope with it.
Research performed by Day and Colleagues found that adult daughters caring for parents with dementia could develop compassion fatigue based on these four categories: uncertainty, doubt, attachment and strain (Day et al, 2014). They found that caregivers were unsure of their ability to care for the patient. Those who cared for parents were more likely to do so because they felt they needed to make up for their parent’s hard life. The caregivers felt strain because they often had to sacrifice things to care for the patient, causing them to feel socially isolated (Day et al, 2014).
Caregivers also suffer negative effects from the stress of their service. There is evidence that those who care for someone with dementia are at higher risk of physical and mental health decline because of the stress (Papastavrou et al 2007). Caregivers can have higher levels of cholesterol, blood sugar, depression and develop a depressed immune system (Papastavrou et al 2007).
Adult children caring for parents are more at risk of compassion fatigue than someone caring for a spouse. This may be because of the shift in the relationship as well as seeing the parent suffer (Day et al, 2014). Women are at higher risk of compassion fatigue than men (Day et al, 2014; Papastavrou et al, 2007). This could be because of societal pressure on women to be the caregiver while also balancing other demands, all while receiving little outside support.
Compassion fatigue impacts the quality of care for patient as well as the caregiver. A research team found that increased education for the caregiver on disease management reduced compassion fatigue and increased the quality of their life (Masoudi et al 2017). When safe and cost-effective education programs are used, caregivers are empowered to take up their new or continuing responsibilities. These educational programs train caregivers in providing quality care for their patient while showing them that they have a support system (Masoudi et al, 2017).
A team of researchers found that the most effective form of education in reducing compassion fatigue was a problem-based method. This method of learning is more self-directed and incorporates group learning. Problem-based learning allows the learner to retain more of the information resulting in longer recall and more long-term support (Masoudi et al, 2017).
Caregivers report that finding someone to help with care and allowing the main caregiver to go out, was very beneficial (Day et al, 2014). Others also found that having someone to regularly talk to or enlisting help from (siblings, friends, etc.) eased the burden on the caregiver (Day et al, 2014).
Current research points to the need of more support and education for these stalwart caregivers.
Day, J. R., Anderson, R. A., & Davis, L. L. (2014). Compassion Fatigue in Adult Daughter Caregivers of a Parent with Dementia. Issues in Mental Health Nursing, 35(10), 796–804.
Masoudi, R., Soleimani, M. A., Yaghoobzadeh, A., Baraz, S., Hakim, A., & Chan, Y. H.(2017). Effect of Face-to-Face Education, Problem-based Learning, and Goldstein Systematic Training Model on Quality of Life and Fatigue among Caregivers of Patients with Diabetes. Iranian Journal of Nursing and Midwifery Research, 22(3), 208-214. doi:10.4103/1735-9066.208169
Papastavrou, E., Kalokerinou, A., Papacostas, S. S., Tsangari, H., & Sourtzi, P. (2007). Caring for a relative with dementia: Family caregiver burden. Journal of Advanced Nursing, 58(5), 446-457. doi:10.1111/j.1365-2648.2007.04250.x