Informal Caregivers in Society
In a cold minor procedure room in an ophthalmologist’s office, we are discussing service as the most satisfying line of work. Of course, it is a matter of opinion and open to contrary views, but Dr A shares a little about what he does on his “vacations”. Dr A, because he gets an A-plus for maintaining focus on his work while chatting away about a topic that I am interested in to make me less nervous. Dr A’s purpose in life is to have more than 5000 girls in Sierra Leone, who are caregivers for their grandparents with cataracts, return to school by easing the burden placed on them by providing cataract removal services at no cost to the families, by the time he retires. A SMART goal. How are you not reviewing your life right about now fellow African youth? He has been working on the grants by himself to cover the associated costs. I leave that room thinking.
We often discuss healthcare on a macro level. Why are the local clinics miles away? Why are the clinics not well-developed infrastructure wise? Why are the doctors and nurses overworked, underpaid, and are not provided for basic PPE? Why can we not find crucial medicine in our pharmacies and what is that about the blood bank again?
Today, however, let’s stray from the norm. Just today. At least until we are ready to speak more about this issue. Let’s think of the caregivers like Dr A has. No, not the nurses and doctors, although we respect them, the ones who are as shocked as you are at a sudden or chronic illness and take the time to be by your side feeding you, assisting you with normal easy tasks you are now finding difficult like bathing, walking, using the toilet or even just sitting up in bed. To many of us, it is just a spouse, or a parent, or a child, or a relative. In truth, at that point where you are not functioning at a hundred, they are your caregiver. I know you are probably wondering, “This is Gender Ink, exactly what does this have to do with gender?”
What are the Statistcis?
From a gender lens, most research, and statistics you can find on informal caregiving particularly in African countries mostly rotate around HIV/AIDS or care for the elderly. While it locks out other major conditions that are more caregiver demanding like cancer, cataracts, keratoconus, Alzheimer’s disease, cerebral palsy or even old age, we can use it as a sample to dive deeper into the engendered aspect.
In several research studies around caregiving, it was found that of the informal caregivers in low- and middle-income countries, approximately 57%-81% were women. Bhan, Rao and Raj (2020) measured psychosocial well-being by asking their respondents, the caregivers, to self-rate their health based on how they felt about their stress levels, the level of difficulty of their task, etc. While they give great statistics, and if you do have time, feel free to read more on this great research, citation provided, it is the conclusion that the “long term effect of informal caregiving being associated with worse health outcomes, particularly greater mental health burdens, affect both men and women, but maybe more prominent in women” (Bhan, Rao and Raj, 2020), that catches my eye.
Exactly Why Do We Have More Women Caregivers?
We must have heard or even used the tag line, “We are Africans and Africa is our business,” when speaking about culture, politics, beliefs, economic, social, and other aspects of our lives. In the majority of our African societies, women take the role of nurturers and that alone has made them default informal caregivers. Of course, that does not mean that their gender triple roles are reduced by any measure. It is crucial to note that in recent years, more men are taking the informal caregiver roles, and soon we will be including discussion of men, especially in post-partum situations.
Can More Be Done to Support Informal Caregivers?
Absolutely. With Africa’s network coverage increasing, we can develop tools like mobile apps and websites tailored specifically to address caregiver roles in particular illnesses, including how they can help loved ones accept and express themselves in the wake of a difficult illness. Mental health support specific to caregivers can also be explored. In some instances, educating a caregiver on the disease state and progression may also be of comfort to caregivers as they know what to expect instead of making those conversations exclusive for the rich relatives who only show up to drive them to the hospital once a month.
Unfortunately, our informal caregiver gems are rarely appreciated or recognized from a healthcare perspective. Let’s be honest African children. We contribute towards hospital bills, offer our prayers, and well wishes to the sick and visit them and completely neglect the caregivers’ existence and needs.
How many times have you picked up a packet of sanitary towels or a shaving blade for the caregiver while you stop by the supermarket to bring some Ribena or Lucozade for those ailing? Do we even genuinely ask how they are really doing and see beyond the “I am fine” response or usual pleasantries? How about in the event of death of whoever they are taking care of after years of their life being defined by their caregiving role? Are there resources for them to feel supported? Peer groups, mental health, education, and career? Anything anyone? We need to do better by our informal caregivers. Let’s all begin by recognizing they exist and that while it is not paid labor, it is work. Difficult work.
The Future of Caregiving
Of course, we cannot project the future with certainty, as COVID has taught us all. However, we can certainly start planning based on some facts. 200 million youth in Sub-Sahara Africa means obviously, in some 50 years we will need someone to take care of us because with old age, comes health complications. Already, around 45 million people in the region are living with diabetes, approximately 60% of dementia cases are caused by Alzheimer’s Disease, do we need to discuss arthritis cases rising?
Unlike previous generations, we will not have the luxury of our children being full-time caregivers given that life is becoming more expensive, meaning everyone is more focused on the productive role of life. Already, a lot of people are delaying parenthood anyway. Finding home managers is a challenge, so do not count on that either.
Part of our generational focus should be on how to transform the informal caregiving role into something more formal. We can learn a thing or two from our fellow earth occupants. We are already witnessing brain drain as more of our counterparts explore the western world healthcare industry where they need more people to cater for their ageing population and emerging diseases. Home aide health, certified nurse assistants, and personal care aides are areas that should certainly be developed. Not only will it offer relief to the informal caregivers by giving them a chance to take a day off or chase their dreams instead of pausing it, but also create employment. It is time to rethink those ridiculed “changing adult diapers” roles. As far as cost goes, we may want to start saving or change our attitude and policies towards insurance. Let’s selfishly plan for the future of the continent. We are no longer leaders of tomorrow. Tomorrow is here.
Nandita Bhan, Namratha Rao, and Anita Raj. Journal of Women’s Health. Oct 2020. 1328-1338. http://doi.org/10.1089/jwh.2019.7769