‘My mother-in-law is suffering from dementia. I have been taking care of her since a long time and I feel very good about it. But I admit that it is exhausting. It has been months since I have gone to meet my relatives or friends, or seen a movie. How can do that? What if something happens when I am away?’
Imagine someone saying this. Imagine who that person could be. More often than not, you’ve thought of a caregiver.
In our society, each of us knows of at least one person in a similar situation. Caregivers turn into indispensable assets for society. Till a few years ago in India, families refused to send their relatives to geriatric centers, hospices, and centers for children with disabilities. Family members mainly fall under the category of ‘informal caregivers.’ With the development of institutions and long-term stay facilities, the staffs of such institutions are also included in this category, specifically as ‘formal caregivers.’ As health care professionals, it is not only important to deal with the stresses of individuals suffering from physical or psychiatric problems but also with the stresses of caregivers.
A caretaker’s daily life is filled with tension, conflicts, and anxiety, accompanied with a variety of emotions. Long-term impact includes caregiver’s burden, that is, sleep difficulty, depression, anxiety, and loneliness. The experience of caregiving tends to be a chronic stressor (Bevans & Sternberg, 2012). Daily hassles in a caretaker’s life include providing assistance with transport and mobility, managing schedules for medication, and communicating with medical professionals. It also requires being vigilant about signs of any health scare, motivating the ones they take care of, and facing financial issues. The demands of caring can lead to restrictions on other areas of life including work, social functioning, thus reducing the quality of caregivers’ lives.
Caregivers are impacted psychologically, emotionally and behaviorally. Their thoughts are constantly focused on the health of the patient. This can lead to psychological morbidity which would further lead to poor bereavement outcome (Addignton-Hall & Ramirez, 2006). It is also likely for caregivers to develop depression and anxiety due to constant hypervigilance toward those under their care. Emotions of guilt, fear, and sadness are most common amongst caregivers. Lack of recreation further adds to the development of health complications. Other risk factors include hours spent in caregiving, social isolation, and psychological factors of the patient (Adelman, Tmanova, Delgado, Dion, & Lachs, 2014). When caregivers undergo so many problems, why are they a neglected sector in health care?
First, it is assumed that caretaking is a responsibility or duty which has to be fulfilled whether the caregiver is a family member or a professional. If they complain, they are ridiculed and reminded about this ‘responsibility.’ Second, caregivers are susceptible to feel guilty when they prioritize their own problems over the patient’s problems. Third, their problems are always compared to what their patients are going through and are brushed off as minor stresses. Their thoughts and emotions are rarely taken into consideration unless they develop psychological symptoms which hamper their caretaking tasks.
Given the stressors outlined above, why do people choose to be caregivers for their relatives or volunteer for a career in caregiving? Caregiving is viewed as a noble deed in society. The motivation may not be monetary benefits, praise or recognition. It is the satisfaction and pleasure they experience that is often highlighted. Although it involves many stressors, the positive responses from the patients is the main reinforcement for caregiving behavior. They can be compared to backstage workers of a play, who silently strive to make the actors look good and the play to become a success. The play can collapse in their absence. In my experience as a Clinical Psychologist, I have often realized how the absence of a ‘caring’ caregiver can hinder the improvement of patients and how resolving caregivers’ stress can accelerate the patient’s progress.
Once in a lifetime, every individual faces the opportunity to be a caregiver – by choice or by design. It is important to make this opportunity less stressful by acknowledging that it is not an easy task, appreciating their effort and involvement in caregiving, and reminding them that their life and health are not to be neglected. It is important to assess them psychologically to prevent burnout (Coping with Caregiver Stress and Burden, 2015). As professionals, providing them with the appropriate information about the diagnosis as well as a realistic prognosis would be beneficial. For formal caregivers, job satisfaction and job stress must be assessed at frequent intervals. Self help (Caregiving Support and Help, 2015) and support groups have also been found to be helpful.