Recognized or not, family caregivers— family, friends, and neighbours who provide assistance, without pay, to loved ones— are a critical part of a patient’s circle of care. With an estimated 8.1 million caregivers in Canada, this ‘informal care’ accounts for the majority of care provided to older adults in the community; their contributions amount to $24 billion each year.
Despite their massive contribution, healthcare policies and programs rarely consider the needs of caregivers. And they are even less likely to offer programs that provide them with direct support. In fact, health care reform designed to manage increasing demand and improve efficiency often overlook family caregivers entirely.
This is troubling, especially because policies meant to improve system efficiency often transfer care from institutions, like acute care, to the home – this can increase caregiver workload and contribute to burnout. And it can also negatively impact their health.
We already know family caregivers experience negative health consequences because of the work they do – this can range from stress, depression and anxiety to cardiovascular disease, sleep issues, and even an increased risk of dying.
But how to best support caregivers continues to be a matter of debate. This is, in part, because caregivers have vastly different experiences and needs, their role is not clearly defined, and public sector budget constraints confer constant challenges.
We believe we need to make caregiver health a top priority. We should design policies, programs and interventions that not only support caregivers, but aim to prevent the known negative health consequences of caregiving.
Why? The logic is clear. If we don’t address declining caregiver health, then eventually:
- Caregivers will need more care themselves. Simply put, if not supported, caregivers will become clients of the healthcare system. This has been observed in caregivers of dementia patients, whose increased stress levels have resulted in more outpatient visits, emergency room visits, hospitalization, and medication use.
- Caregivers will provide less care. This means the patients they look after will require more formal healthcare services. A clear example of this is that the presence of caregiver stress has been associated with long-term care waitlist placement in Ontario. Perceived caregiver stress has also been found to prolong care-recipients’ length of stay in hospitals.
When this happens, no one benefits. Not the patients, nor caregivers. And certainly not the healthcare system, as providing formal care, in the absence of family caregivers, is costly!
During this current COVID-19 pandemic, as we work hard to “flatten the curve” and ensure the system is not overwhelmed, it is especially important to have a strong structure in place to care for caregivers. Caregivers need to stay healthy, physically and mentally, to be able to continue caring for their loved ones at home. Caring for older adults is the most common form of caregiving in Canada – and older adults are also at the greatest risk of COVID-19 complications.
Caring for caregivers’ mental and physical health is also important given the implementation of new models of care that are designed to shift care and costs from hospitals to the community, like the recently introduced Ontario Health Teams (OHTs). OHTs aim to integrate care across acute, home, primary, and mental health settings.
In reality, however, OHTs (and increased care in the community) might have unintended consequences for caregivers. This is because it can be difficult to predict how changes in formal care might impact a caregiver’s responsibilities at home.
For example, the potential positive effects of increased access to home and community care might be cancelled out by a shortened hospital length of stay and an accompanying increased reliance on family caregivers.
Increased nursing hours at home might not actually reduce the amount of work for a caregiver, whose main responsibilities are providing assistance with bathing and toileting. This work is typically done by personal support workers, not nurses.
“We didn’t have a home care visit for 48 hours after we were discharged from the hospital…when the home care nurse finally showed up she took one look at his [the patient’s] external fixator and said, ‘I hope you don’t expect me to change the dressings on that, it’s disgusting!’ This started my second career as a nurse,” noted one caregiver, who found that increased nursing hours did not provide her much relief from her caregiving duties.
The main caregiving outcome measured in Ontario and Canada is caregiver distress. But it’s extremely important to go one step further and measure the negative health consequences that are broader than distress. Given the extent of caregivers’ contribution to our healthcare system, we can’t ignore the serious potential unintended consequences of their role.
Not only should the needs of caregivers be taken into account when designing (hopefully co-designing) new models of care, but policies should be in place to provide caregivers with the right support at the right time.
Specifically, programs targeting early discharge from acute care or delayed admission to long term care need to consider and explicitly assess caregivers’ physical, mental and emotional capacity to support patients at home.
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Much of the caregiver distress is due to lack of information and effective communication with the healthcare system, social and community services. Caregivers are a shadow support system that in many cases are the ones with the most complete understanding of a patient’s challenges and needs. Let’s work toward making their job easier.
A very insightful article. Well done.
I found this article both insightful and relevant given my “caregiving” responsibilities with my late fiancé. You’ve done a good job in pointing to a lot of variables!
Thanks James; it means a lot coming from you with a deep personal experience.