Not enough literature highlights the devastating impact that caregiving can have on individuals both in a professional capacity and for family caregivers who share the responsibility of looking after a sick relative.
Family caregiving often involves taking care of:
- A parent or grandparent
- A child
- A spouse or partner
- A sibling
- A neighbour or close friend
Statistics show that the average age of a caregiver is around 49 years old. At the same time, other research suggests that roughly 48% of family caregivers are between the ages of 18-49.
In the US alone, over 10 million millennials are currently caregiving for a sick relative, as well as managing other responsibilities such as work and attending university. On a global level, over 34% of family caregivers are over the age of 65.
These figures illustrate the overwhelming burden on the health service, not to mention the direct impact that family caregiving very often has on individual families, particularly when it comes to emotional and physical wellbeing.
Who are informal caregivers?
Unlike formal caregiving (such as those paid to work in hospitals or those providing home care to the sick), informal caregivers provide (unpaid) care and assistance to disabled or chronically ill family members.
Studies show a high increase in poor mental health outcomes for informal caregivers who are very often prone to:
- Anger and sadness
- Substance misuse disorders (and other addictive-related behaviours)
Typically, women caregivers are at a much higher risk of developing depression over male caregivers. However, researchers have found that male caregivers tend to deal with their depression differently.
Symptoms of depression in men in a caregiving role often include:
- Irritability and frustration
- Feelings of powerlessness
- Alcohol dependency and workaholism
Interestingly, male caregivers are also more likely to seek outside help when it comes to taking care of a loved one in comparison to their female counterparts.
Further studies illustrate that the rates of depression are doubled in those taking care of a spouse with progressive diseases such as Alzheimer’s disease and Dementia, in comparison to caregivers looking after relatives without Dementia.
Informal Caregivers: The hidden casualties
As a former caregiver for my mother, I noticed that surgeries, libraries and hospital waiting rooms were deprived of literature that offered support and guidance to family members whose loved ones had a diagnosis of chronic or critical illness.
When it comes to critical illness, family members of patients are put into the role of caregiver, or patient advocate, often without any knowledge or awareness.
Trauma in caregiving
The emotional impact of witnessing a family members physical or mental decline is very often overlooked, particularly within medical environments such as Critical Care Complexes (CCCs) and Intensive Care Units (ICUs).
Family members of critically ill patients are, at times, exposed to a wide range of chronic, traumatic events including:
- The trauma of having a loved one admitted to the ICU
- Continuous exposure to bad news with regards to a patient’s health
- Experiencing a lack of compassion from doctors and practitioners within a hospital and home care environment
- Feeling powerless due to a lack of medical knowledge
- Feelings of terror and uncertainty due to the unpredictability of the patient’s health
- Relentless feelings of grief which often remains unacknowledged or at best overlooked
- Exhaustion (particularly for individuals who are primary next of kins)
- Feelings of guilt and shame
In the early days of my mothers’ admission to the ICU, I recall the countless times I was advised not to cry at her bedside in case it frightened her.
It seemed apparent to me quite quickly that expressing emotions was unhelpful and conducive to healing.
After a while, this emotional repression resulted in a split; shame for having such intense feelings of sadness about my mother’s failing health followed by guilt when updating friends and family members about her various illnesses, talking about her almost as though she were not my mother at all.
Caregiver survivors of long-term ventilated patients
Mechanical ventilation is one of the main features for patients in the ICU. People admitted into this environment are often in need of organ support such as ventilation and kidney dialysis.
I vividly recall how the word intubation induced feelings of horror in me as the doctor described the reasons behind such a process. I also remember how he outlined the numbers 50/50 with his fingers into thin air, which marked the odds of my mother’s survival.
Studies show that caregivers of long-term ventilated patients (LTV) are at significant risk of developing depression both during and post-hospital admission. Reports also have shown that caregivers admitted to suffering from depressive symptoms for up to 6 months after a family members ICU admission.
For the caregivers whose loved ones resided in a hospital institution, reports indicate significantly higher depression and overload scores: 51.2% of caregivers reported symptoms of depression at discharge and 36.4% of caregivers reported feelings of depression six months after hospital discharge (Douglas Sara L., PhD, RN and Daly Barbara J., PhD RN).
Perhaps one of the most disturbing things I discovered during my mother’s eight-month hospital admission, was the apparent lack of compassion displayed between doctors, patients and patients’ families.
Those observations took place within critical care settings, where my mother (alongside three other patients) was being mechanically ventilated. Issues that I (along with other family members) observed included:
- Nurses telling jokes at the bedsides of critically ill patients
- Consultants and physicians delivering daily death sentences about patients in front of them and their families
- Critically ill patients being accused of not complying with treatment plans set out by medical staff
- Nurses refusing to give specific treatments to patients regardless of the potential risks involved (this was mainly due to inflexible treatment plans)
- Medical procedures conducted without receiving the go-ahead from family members
- Lack of empathy displayed throughout the critical care unit
Physician and scientist, Stephen Trzeciak, speaks about the compassion crisis taking place within the healthcare system today. He explains that:
If you do not detect or understand another’s emotional state, you are not going to be inclined to take action with compassion to help alleviate it.
According to Trzeciak, nearly half of the American population believe that the US healthcare system does not demonstrate nearly enough compassion towards sick patients.
The literature also reports that up to 60-90% of physicians in America miss opportunities to respond to patients with compassion.
In his book Compassionomics, Trzeciak explains that physicians who demonstrate compassion towards patients are at a much lower risk of burnout in comparison to physicians who display hardly any compassion at all.
Other data from Trzeciak’s report shows that up to two-thirds of Americans had gone through a meaningful healthcare experience combined with a lack of compassion.
It seems quite clear from the data that the compassion crisis in healthcare is something that needs to be addressed not only for the good of patients but to help reduce the amount of burnout taking place for physicians and healthcare providers.
From a caregivers perspective, receiving compassion during a time when losing a loved one becomes a sudden, albeit real possibility would likely reduce the overwhelming burden and stress that so many informal caregivers experience every day. It would also reduce the likelihood of caregivers developing:
- Depression and anxiety
- Substance addiction
- Post Traumatic Stress Disorder (PTSD)
A recent commission report on mental health highlights the cost that depression, anxiety, and other mental disorders have on the economy, which is estimated, at the global expense of $16 trillion by the year 2030.
This cost is mainly down to mental illness and a loss of productivity, which includes an estimated 12 billion working days lost because of mental illness.
We might learn from this, that although compassion is considered a small (or even fluffy) element to healthcare – especially looking at how hard-pressed doctors and surgeons are for time, the overall cost of inadequate compassion towards patients and their families is there for all to see.
The risk of addiction
The loneliness and isolation that comes with informal caregiving often result in many turning to substances to cope. For example, women caregivers who require treatment for depression are over four times more likely to develop some form of alcohol dependency.
In addition to this, caregivers experiencing anxiety will often be prescribed drugs such as Xanax or Ativan by a doctor to help alleviate their symptoms. Unfortunately, these drugs, (while helpful in reducing anxiety) are also extremely addictive – leading many down the path of prescription drug addiction.
Informal caregivers who abuse substances as a way of coping with the stress and demands of such a role, not only put themselves at risk but also the person they are looking after.
Research shows that when caregivers are under the influence of substances, like drugs or alcohol, the risk of death in patients increases by 300%.
Home care services
According to reports, the economic contribution of home care providers is not properly accounted for. The stress and burnout that often accompanies caregiving (particularly when it’s unpaid) can be extremely damaging.
As well as having to take care of a parent or grandparent, for example, caregivers often have additional burdens to take into consideration. These burdens include:
- Financial difficulties
- Personal health issues
- Burnout and exhaustion
- Grief (if a loved one is chronically or critically ill or suffers Dementia)
- Lack of community support
In the US, over 61.6 million people are currently looking after family members at home, which includes elderly relatives, parents or grandparents with chronic illnesses or disabilities. Without home care, a large percentage of people would require full-time placements in healthcare facilities or institutions, resulting in considerably higher costs to the economy.
Caregiver burnout: Symptoms and treatment
Caregivers burnout is a condition commonly experienced by practitioners, healthcare providers and family caregivers.
Symptoms of caregivers burnout include:
- Emotional and physical exhaustion
- Changes in sleep patterns
- Loss of interest and pleasure in hobbies that you once enjoyed
- Changes in appetite
- Feeling hopeless, angry, resentful, or irritable
- Excessive use of alcohol, drugs and other stimulants
- Depression and anxiety
Treatment for caregivers’ burnout varies from person to person. However, there are parallels with regards to how practitioners conceptualize and treat the condition.
Typically, practitioners will advise individuals to:
- Reach out to a trusted friend, family member or therapist
- Attend caregiver support groups
- Enrol in respite services and adult daycare
- Develop personal boundaries and know when to say no to unreasonable demands from others
- Cultivate helpful coping mechanisms (instead of drinking alcohol or taking drugs)
- Eating a balanced diet and getting enough sleep
From personal experience and by examining the literature, it’s apparent that those looking after chronically ill family members (whether that be through home care or in a hospital facility) all seem to share similar challenges. These challenges are often overlooked by healthcare practitioners and familial communities – hence why I referred to this group of people as the hidden casualties.
Unlike doctors who trained to deal with the trauma of illness, it seems that family caregivers have an expectation to look death in the face every day and come off unscathed and untraumatized.
In my eyes, there needs to be a deeper level of support, education and awareness around the impact of informal caregiving. Bereavement groups, caregiving forums and bespoke mental health initiatives should be transparent and made widely available to this group (particularly within health care settings).
The cost of not doing this is far greater.
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