Fakolade: How to support family caregivers, our unsung heroes

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As a society, we would not expect people to become doctors, nurses or other healthcare workers without the proper training and support, but we allow family carers to take on this important role without preparation or the tools they need to succeed and take care of themselves.

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Caregivers are worthy of attention. This message is central to my research and my prescription for change.

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I will never forget the day in 2009 when my mother was diagnosed with a serious illness just two days before her 52nd birthday.

I naively expected that as a recent physical therapy graduate, I would be ideally placed to be my mother’s caregiver. I was wrong. Nothing in my professional training could have prepared me for the daily burden of caregiving or its subsequent impact on my own physical, mental and financial well-being. Fortunately, my mother is now well, and my experience has influenced my career as a researcher to find ways to protect and improve the well-being of family caregivers.

In Canada, approximately eight million people (more than 20% of our population) provide unpaid care for a family member or close friend with aging-related needs, a disability or a chronic illness such as multiple sclerosis. plates (SP). For example, people with MS can have a wide variety of symptoms that limit their ability to carry out daily activities. Home care, including personal support, is essential but costly, and access may be limited to only a few hours per week. As a result, family members and friends bear the bulk of caregiving responsibilities.

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Generally, when we talk about family caregiving, we tend to focus on the negative impacts of this role. We are talking about high levels of fatigue, anxiety and depression as well as social isolation and poor quality of life. These are all very real and common struggles that affect the health and well-being of family caregivers. However, through my research, I discovered another reality.

I have heard countless stories of family caregivers who have experienced pride, personal growth, and strengthened family relationships because of their role. We have discovered that there are four simple tools that can help support and prepare caregivers so they can realize the positive aspects of caregiving.

• Quality physical activity. Many family members have said that finding ways to exercise helps their own well-being and also helps with symptoms of depression or anxiety.

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• Community services. Support groups, counseling services and community resources provide essential outlets and supports.

• Support networks. A range of people may coordinate support efforts, which may include granting time off to a caregiver. This full team can come from a wider circle of family and friends as well as family physicians and personal support workers.

• Knowledge. Tools and information can be provided to caregivers to educate them about their loved one’s illness or condition so they know what to expect and how to best provide care. It can also help overcome the uncertainty and fear associated with caregiving.

These are simple solutions but often not prioritized or provided to caregivers, at least not in a coordinated way. As health care researchers and clinicians, we must recognize that the well-being of caregivers and their care recipients is highly interdependent. Our health and social care systems must develop the capacity to assess and monitor the well-being of carers so that we can intervene before crisis situations arise.

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Caregivers show extraordinary courage in answering the call to provide ongoing, unpaid care for their loved ones, and they don’t get enough recognition. Without carers, many people will experience a deterioration in their health and quality of life and may need to move to a nursing home or hospital sooner as their illness progresses. This further burdens our health care system as a whole.

We can either choose to ignore the needs of these unsung heroes or commit to taking action to make positive experiences a reality for all caregivers. I invite us to choose the latter. I know that I may have to take care of my mother again as she gets older, and my dream is that then our society, our health and welfare systems can better support the family caregivers for everyone’s health.

Dr Afolasade Fakolade is an Assistant Professor in the School of Rehabilitation Therapy at Queen’s University. Watch his research talk here.