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Family caregivers who are they and why should we care about them family caregivers are are those who provide care. This can be emotional functional financial. What is unique about caregiving is that it has been provided in context of illness disability or age related needs they mostly family members they can also be friends or neighbors.
What is important is to be aware of the distinction between family members and family caregivers. Let me give you my example. Im married we have two girls.
We are family we support each other. However. It is my mother who provided 24 7.
Care for my alien father for eight years before he passed away last september is what made her a family caregiver. I can give many examples from my practice. It is the husband who provides round the clock care to his wife who suffers from alzheimers disease and rushes out for a few hours once a week to run errands.
Who is a family caregiver. It is the daughter who goes over to sleep every night at her mothers as her mother suffers from paranoia and gets scared at night. Who is a family caregiver.
It is the son and daughter who have split up the responsibilities of caring for their father who is housebound. So he can continue to live in his home in a remote rural area. Which make them family caregivers.
The examples are endless and the valuable role of this family caregiving has been very apparent during the covet 19 pandemic during this pandemic we as a society and the healthcare system have relied heavily on family caregivers to support care of people in their homes in our attempts to reduce admission to hospitals to long term care after discharge from hospitals and particularly during periods of isolation.
Family caregivers have been expected to take on many tasks previously provided by healthcare system to address a public health need to prevent the spread of this virus. What does family caregiving look like family caregivers provide a wide array of activities they help with basic functions such as dressing bathing feeding toileting or could be supporting other essential needs such as housekeeping preparing meals. Providing transportation.
They often provide emotional support companionship socialization their support can be in the form of financial management. The one area i would like to emphasize which is particularly challenging for family caregivers is providing support in the area of healthcare. Which can be a whole array of needs such as medical appointments tests supervising medications monitoring symptoms managing behaviors and crises navigating the systems of care and advocacy why does family caregiving become burdensome as a society.
We believe in caregiving it comes from a place of love duty reciprocity it can be fulfilling and rewarding. However it is the loading length of care that can have negative consequences. It is also important to recognize that while there can be many family members and friends it may be just one or two providing most of the care.
There is considerable evidence that family caregiving can have significant negative consequences it can cause emotional distress isolation cant give a burnout it can result in mental illnesses. Such as anxiety depression and even suicidality. It can have a negative impact on the caregivers physical health and decreased longevity it can be a reason for enormous financial hardship.
60 of family caregivers in canada are working it can lead to restriction of work hours and exit from the workforce and sometimes all together. It can affect their careers income and aspirations. Lets take a moment and look at the extent of caregiving in canada currently 25 of canadians are.
Caregivers there are of all. Ages providing care to all ages they provide 15. Billion hours of care.
Times more than provided by paid care providers replacement costs of which amount to over 65 billion dollars a year. Theyre rightfully recognized as the shadow workforce of a society and the backbone of our healthcare system and this that will need support we need family caregivers to provide and sustain care as the population ages. There are increasing numbers of us living longer with chronic and progressive illnesses.
We also know that majority of canadians prefer to live at home. As long as possible and depend on family caregivers to support them at the same time our healthcare system is trying to reduce the costly and avoidable. Acute and facility based care by shifting care to the community.
Which means marketing care needed from family caregivers in response to this shift. Many well meaning initiatives in research are focused on training family caregivers to provide care with the intent of sustaining care. What we have not done is asked what is all this doing to the health and well being of family caregivers family caregivers are saying to us that youre increasing the load of care and adding to their stress.
They are not saying that they want to stop caregiving. They are saying stop trying to build a better caregiver instead build a better system around us to support us. I was on the same path being a care of the elderly physician.
I was very confident in my interactions with family caregivers. I was engaged with them in my assessments and implementation of recommendations. It was 2013 that i had an awakening for two major reasons.
But then my parents had immigrated to canada and i found myself providing considerable support to them even though it was my mom who was the primary caregiver. I found myself supporting them in a myriad of ways taking them to medical appointments. Taking them to specialists.
Getting various tests done picking up medications trips to community physio.
Addressing equipment needs and then running errands and taking multiple calls from them during the day i became frustrated particularly when navigating the healthcare system. I became angry and i regretfully directed my anger towards my mother i was stressed and recognized that i was failing to come at about the same time. I became the medical leader for home care and in edmonton zone.
And started to get a better idea of how much we depended on family caregivers to provide care. I began to work with fine community organizations. Such as alzheimers society and caregivers alberta in how we could prepare family caregivers to provide and sustain care till one day.
I was asked what are you doing for family caregiver caregivers themselves by the director of caregivers alberta. I was giving my usual feed that i collaborate with them set up my recommendation lay out my expectations when i was pushed backwards have you ever asked a family caregiver how are they doing i was completely nonplussed. I realized that i was purely using the family caregivers to care for my patients.
And i was not thinking of the fair family caregivers in that moment everything fell into place my own experience. My way of work and it darned upon me that we have to do a much better job of supporting family caregivers from within the healthcare system. That was 2013 and fortunately because of tremendous support from 400 stakeholders.
Many of them family caregivers themselves healthcare professionals managers policymakers researchers community organizations and government ministries. Weve explored the role of healthcare systems to support family caregivers. We recognize that family caregivers are unintentionally marginalized in our healthcare system.
Which is mostly focused on patient care we learned throughout the clear project trajectory the healthcare providers. Underestimate the caregiver role in stress and miss opportunities to prevent and reduce that stress we uncovered that there was a gap between what family caregivers report. They need from us and in the preparation of the health workforce.
To meet those needs the overwhelming voice was that we have a duty and a responsibility from within the healthcare system to support family caregivers.
There was universal agreement that we need to prepare our health workforce to recognize and support family care gurus. We point to term caregiver centered care. Which is basically person centered care for family caregivers.
And validating. The core competencies to train. The health workforce to support family caregivers.
Let me share these with you they begin with recognizing the caregiver role identifying the family caregivers their contributions and consequences of caregiving. Communicating with them in a timely and respectful manner. Partnering with them establishing collaborative relationships and including them in care.
Planning and decision making fostering resilience in family caregivers is about identifying caregiver needs from the airlines facilitated by the healthcare providers having identified their needs then helping them with navigating their health and social systems of care accessing supports and overcoming barriers finally enhancing the culture and context of care. Which is about role modeling and engaging in self reflection to build meaningful relationships with family caregivers. We are very excited as we are about to release the education modalities and resources that will serve to provide foundational education to healthcare providers based on these core competencies.
These are going to be tested in all healthcare settings. Primary care acute care home care supportive. Living long term care and training institutions.
We are quite ambitious we are setting the stage for all healthcare providers in our healthcare system to be educated as we recognize each and everyone has a role to play in conclusion. I would like to say that our ultimate success will be measured by family caregivers. When they feel supported by us throughout their caregiving journey.
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