THE BOND BETWEEN THE CAREGIVER AND A PERSON WITH DISABILITY
The relationship between the caregiver and a person with disability is a complex one. On the one hand there is a lot of love, care, trust and respect between the two, on the other hand, each party deals with their own internal struggles coupled with the external circumstances, changes in environment,
A caregiver is commonly defined as a person who tends to the needs (physical, emotional and financial) or concerns of a person with short or long-term limitations due to illness, injury, or disability. A caregiver is usually an immediate family member, however a relative, a close friend or an employee of the chosen centre or hospital can also be a caregiver. Family caregivers play a significant role in health care, as they are often the main source of valuable information about the patient. If we look at health as a three-legged stool, one being the professional caregivers (doctors, nurses, etc.) and the care recipient as the other, the caregiver acts as the third leg. Without all three legs, health care fails to be effective.
The relationship between a caregiver and a person with a disability is ideally built on a foundation of compassion, trust, and understanding. It is the nurturing relationship between the caregiver and the receiver that heals and has a significant impact on both people’s health and happiness. The major positive aspects include the deep emotional connection, empathy, and mutual growth. This positivity goes both ways as caregivers derive immense satisfaction from positively impacting the lives of those they care for, witnessing their milestones and achievements, while the care receiver’s health becomes better and condition is helped. A study at John Hopkins which examined a group of Alzheimer’s patients discovered that having a close relationship with a caregiver actually helped to slow down the development of the patient’s dementia.
However, despite the positive impact, there can also be many challenges in the bond that can hamper healing. For one, a person with a disability is in a position which is vulnerable and dependent on another person where they keep needing to ask for help. Losing autonomy and accepting care isn’t easy. On the other hand, caregivers have the difficult task of being emotionally available and giving of themselves, day in and day out. Especially when the condition is sudden, this role change can become particularly difficult. Therefore, depending on how the relationship is nurtured, it has the potential to become a relationship of support, trust, and respect, but can also manifest in ways that are damaging to both people.
Caregiver’s burnout is a common occurrence that can further damage the relationship. It is defined as a state of physical, emotional and mental exhaustion that happens while you’re taking care of someone else. The consequence of burnout is where the bond can get strained and affect the quality of care provided and hinder effective communication. This includes emotional withdrawal, reduced patience overtime and decreased empathy. Feelings of anger, frustration and resentment towards the care-receiver can occur. This could also lead to feelings of guilt, the thought of “Why am I feeling like this?”, the worry of “Am I doing enough?”. All this brews a concoction that is very harmful to the relationship and could have severe consequences on the care-receiver’s health. A study done in Karnataka, which aimed to assess the quality of life and burden of caregiving of primary caregivers of children with disability registered in a CBR services in rural Karnataka showed a significant positive correlation between caregiving stress and depression and with economic and psychological stress, and a significant negative correlation with self-esteem. It also showed that the depression index was highest in caregiver’s who were caring for people with disability caused due to spinal cord injury. Another study done in the UK, assessed the burnout occurring with caregivers in the ICU and its impact on patients, where caregivers worked long hours and faced high workloads, in turn affecting patient safety, potentially leading to errors in care, reduced quality of treatment, and compromised decision-making abilities.
Despite all these challenges, there are ways to remedy a strained bond. One could be finding a third person to bring in more help and a new perspective on how to better care for the person with disability. Another could be regular therapy/counselling sessions to deal with burnout, dampened communication and unprocessed emotions and thoughts, which would provide some amount of relief in the relationship. Having good support systems, a sense of understanding and self-care are key ingredients in nurturing this bond. Researchers and society need to recognize the dynamics of this relationship to provide adequate resources and interventions to prevent as well as deal with these challenges to enhance the quality of life for both the caregiver and the person with a disability.
Web references
https://www.ioaging.org/caregiving/strengthening-relationship-between-caregiver-and-patient/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8483078/
Reader, T. W., Cuthbertson, B. H., & Decruyenaere, J. (2007). Burnout in the ICU: Potential consequences for staff and patient well-being. Intensive Care Medicine, 34(1), 4–6. doi:10.1007/s00134–007–0908–4
Written by:
Saloni Kullar
(Junior Therapist )
