To begin, Dr. Parmar presented some information about what constitutes a family caregiver, and who family caregivers are within Alberta. A family caregiver is someone who takes on a (typically unpaid) caring role and provides emotional, physical, or practical support in response to physical and/or mental illnesses, disabilities, or age-related needs. They are the invisible workforce working to support people in our society. In Alberta, approximately 1 in every 4 adults is a family caregiver. Collectively, family caregivers provide approximately 388 million hours of unpaid care each year. This is 10x the number of hours put in by paid caregivers! This means that family caregivers provide nearly $6 billion in savings to our healthcare system every year. Caregivers are diverse in both who they are and the care trajectory that they follow.
A typical care trajectory begins with sporadic support doing this such as helping a loved one get groceries, ensuring medications are picked up on time, or helping with transportation to doctor's appointments. A crisis or exacerbation may then occur, such as a reaction to a medication or having a fall. Following a crisis, the care recipient may require consistent care surrounding daily living activities. Additional homecare supports may be required. Eventually, the care recipient may need assistance with all personal care (e.g. toileting, transfers). This is of course only one trajectory. Individual needs may increase or decrease, or additional crises occur that can alter this trajectory. A caregiver may also begin care responsibilities at any point in the trajectory.
Often, once consistent personal care is required the family caregiver can no longer provide the level of support necessary, and paid caregiving begins (e.g. live-in caregiver, move to extended care). However, family caregiving does not end here. Vigilance, or ensuring that the loved one continues to receive appropriate care, is an ongoing aspect of caregiving that is often not discussed. Advanced care planning and substitute decision-making are important. Comfort care and palliative care, minimizing suffering and managing symptoms.
Family caregiving alone is not a cause for burnout, but there are certain factors that can make it burdensome. In particular, a high load and long length of care make family caregiving stressful. If you think of a project at work, what causes that project to become stressful? The same types of things are what make family caregiving stressful. Typically, family caregivers choose to take on the role out of love and reciprocity. However, anxiety and loneliness among family caregivers are on the rise. We all have a tipping point where there is too much to handle and ways that our load can be effectively lightened. That scale of balance has been increasingly off for family caregivers, and this is where effective supports for family caregivers come in.
Within the healthcare system, there is a missed opportunity to support family caregivers. A lot of responsibility gets placed on family caregivers from the healthcare system. We need to build a better system, and the healthcare system is a part of that. No single organization can provide all of the necessary supports for family caregivers. Medical professionals need to see family caregivers as partners in care. They need the competencies, skills, knowledge, and ability to recognize not only their presence, but how family caregivers can participate, engage, and share. The caregiver's needs should be recognized and appropriate referrals provided. To effectively reach this point, a collaborative working relationship is necessary.
No single organization can provide all of the necessary supports for family caregivers. Alongside changes to the healthcare system, additional alterations are necessary. We need government policy that recognizes family caregivers. If you think of the pandemic and how family caregivers were not considered essential in many care homes. We need changes to our environments, ensuring that more spaces are age-friendly and disability-friendly. We need accessible skills training for caregivers. We need research to understand if the available supports are enough and if what is being done makes a difference. Finally, we need community organizations (like the library!) to provide opportunities for connection, education, and respite.