Family Caregivers unlike healthcare workers do not belong to organized workforce employment. They are mostly unpaid and mostly unrecognized for their work. Family Caregivers constitute the expansive network of informal healthcare systems across the world. In the USA alone, there are about 10 million adults who are currently unpaid family caregivers. They contribute to around 600bn$ via unpaid caregiving in the USA alone. That means family caregivers are responsible for trillions of dollars of work all over the globe that doesn't get its due credit.
Who are family caregivers?
A family caregiver is generally a parent, spouse, sibling, and in some cases a relative of a patient who is in need of caregiving. These people are active participants in the patient’s daily life, like ensuring their meals, maintaining their hygiene, and performing medical tasks including doctor checkups. The bulk of caregiving (23%) is needed for dementia or Alzheimer-related care. The majority of family caregivers are in the Oseterics age group of 50-64. The bulk of them - more than 65% are women.
The majority unpaid family caregivers are women in their midlife
The silent burden of unpaid family caregivers is increasing every day. Worse they are highly unrecognized. While frontline health workers got their long-due share of respect during the pandemic, family caregivers are mostly invisible to our mainstream discussion. 70% of them accept that their own health has degraded since taking up caregiving. Every 1 out of 3 takes the responsibility of caregiving alone. Many family caregivers have to leave workforce labor participation due to caring for chronic patients such as patients of advanced-stage Alzheimer's, dementia, or paralysis. Around 70% of working caregivers suffer work-related problems due to their dual roles, and 34% of them have to sacrifice their jobs.
Caregiving Burnout is Real
We have to start identifying the toll on the caregivers. 24% of caregivers end up (Canadian study) developing stress, a rising problem in the informal health care system. The stress is correlated to the intensity of caregiving needs. Recently psychologists have started to categorize some caregivers into the "Chronic Stress" category. Chronic Stress is a physiological and psychological response to an overwhelming amount of stress factors that affect someone over an extended and prolonged amount of time. Some signs of it are irritability, body aches, and general pain, insomnia, drastic mood changes, weak immune system, problems with short-term memory, and overall bad state of mind, impatience and anxious feelings, changes in weight, and a hopeless mindset. Caregiving is both emotionally and physically straining.
Caregivers who look after someone can experience a serious burnout and overwhelming feeling, being drained from the continuous work they have to put in. Adding to that in some cases, for terminal patients, for example, there is a demand for a lot of help which may not culminate into a good outcome. This may create an increased physiological strain.
Caregiving Stress is directly related to increased mortality. The study has shown that the increased mortality happens irrespective of their race, gender or geography. Combining with the importance of caregivers in the health systems, this calls for urgent interventions for millions of people globally alike.
The intensity of caregiving is highly correlated to increased mortality of caregivers. This calls for an urgent policy intervention worldwide.
Compared to the organized healthcare sector, a family caregiver thus have to deal with emotional stress with hardly any support. Around 20% of the family caregivers feel they are alone. The unconditional commitment provided is definitely something that has to be applauded the same way we praise medical workers because both of them subject prone to chronic stress. The case of exhaustion becomes more severe when we account for doubly duty (child and older adults) or triple duty caregivers ( children and older adults or child and older adults).
Stress is not just about the workload
It is obvious that the continuous workload is not easy. Even if it is for a loved one, caregiving in many cases can be intense. But, there are other external factors that can multiply the stress.
In cases of parental care, inequity among sibling responsibilities are a major source of distress. The role of siblings has been widely studied and has been found to be a source of either major support or major distress. In 75% of caregiving, cases are dealt with only a single child. This responsibility generally falls on the elder children more often as per filial societal norms. Though it has been shown that other siblings do share responsibilities when parents' need for care increases. If that doesn't happen, the elder child is bound to suffer higher distress. The interpersonal relationship also gets complex due to the parent's favoritism and children's relationships while growing up.
Siblings of a caregiver can be either a major source of support or a major source of distress in case of parental caregiving.
In the case of spousal caregiving, the disappointment and sadness due to the declining relationship towards someone you love is founded to be the major source of mental distress. Decreased marital life can leave one with bitter life experiences. Both cancer and dementia caregiver spouse are prone to severe stress and mental agony.
The Ethics of Self-Care
Caregiving is an extremely complex phenomenon. Even with its inevitability, many caregivers struggle with the morality that follows this responsibility.
Many caregivers feel both ashamed and guilty in taking out time for themselves and working towards their own mental health. Self-Care has been conventionally positioned as a selfish thing to do especially when you are caring for a loved one. 30% of caregivers agree that they miss their own doctor's appointments. Add to this the fact that half of the caregivers never had an option to chose not to become a caregiver. This initial transition is a worse case for psychological distress.
You cannot pour from an empty cup
Professionals recommend to all caregivers to reach out for help when needed. To see a doctor for regular checkups and to invest time in themselves. Regular breaks, exercise, joining a support group, and having a schedule can also be beneficial.
It is interesting to note what drives the caregivers even in the distress. 51% of the caregivers say that the role of a caregiver gives them a sense of purpose. This drive becomes higher as the intensity of caregiving increases.
Majority of the caregivers are driven by the higher sense of purpose. A true testament to being a hero!
And lastly but not least, it’s important to also talk about the positive aspects of caregiving. The satisfaction of seeing improvement in the person you love and look after, the happiness of feeling their gratitude towards your hard work, and the personal growth that both parties undergo is something very rewarding. Balance within the negative and positive effects of caregiving is what society has to work on achieving.
If you are a Caregiver or know a Caregiver, you can help them by following :
- Recognizing their sacrifices and making them feel recognized
- Giving your time to listen to their stress or help them in their caregving
- Family Caregiver Alliance
- The Center of Medicare and Medicaid Services
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