Placing Additional Burden on Caregivers With a Clinical Background

Dear Editor – At medical school, we are taught early on how to communicate with patients and interact in ways that builds rapport and displays empathy. Communication skills are taught in workshops and in lectures. Later, we refine these skills through observing consultations and clerking patients. However, communicating with patients and relatives in some real-life scenarios can be difficult. More so, for long-term conditions such as dementia that deteriorate over time. I reflect on my experience as a medical student and a young carer caring for my grandma who had a complex medical history, living with advanced dementia.

Bridging the communication gap between the medical team and my family regarding my grandmother’s health soon made me an important factor in her care. I felt a high sense of responsibility for her health and wellbeing. During this time, I had to educate myself on her multiple conditions to facilitate this new role, as a double-duty carer, that had been implicitly assigned to me. I often felt out of my depth, resulting from the mismatch in my knowledge as a young medical student and the expectations from my family and from health professionals.

The literature shows that double-duty caregiving can result in mental and physical pressures for the individual (Detaille et al., 2020) with caregivers feeling guilty and inadequate when they lacked knowledge to provide aspects of care (Ward-Griffin et al., 2014). They can also become engulfed in their caregiving role, finding it hard to disengage to seek respite and find balance (Ward-Griffin et al., 2011). This can lead to unclear boundaries and compassion fatigue (St-Amant et al., 2014; Ward-Griffin et al., 2011). Additionally, the presence of caregivers with clinical backgrounds can inadvertently change the dynamic of the patient–doctor consultation to that of a clinician–clinician discussion.

Furthermore, the COVID-19 pandemic has had a significant impact on the lives of caregivers and care recipients. With limited access to healthcare services, carers have had to take on more caring responsibilities amplifying emotional distress and physical fatigue (Greenberg et al., 2020).

Moreover, caring for sufferers of conditions, such as dementia, can prove to be more difficult than other illnesses, especially during the pandemic. For instance, loss of structure, routine and help at home can cause negative repercussions for both the carer and sufferer when dealing with the symptoms of cognitive decline. Aggressive behaviour, emotional outbursts and depression can be harder to manage with the unavailability of almost all services during the peaks of the pandemic (Greenberg et al., 2020).

As we see a rise in the need for informal care (Lindt et al., 2020), it is important that clinicians are sensitive to not over-burden double-duty carers. By better understanding the prevalence of double-duty caregiving and the factors that can contribute to mental and physical fatigue, clinicians may be able to modify their practice. This can help relieve some of the additional stress and responsibility placed on double-duty carers, particularly during the COVID-19 pandemic. Depending on the medical complexity of the cared for and the role of the carer, consultations can be tailored to include, but not limited to, avoiding assumptions of knowledge, recognising the need for formal support and providing periods of respite for the carer.