Chances are, at some point in each of our lives, we will need to care for a loved one impacted by illness.
Unpaid caregiving has become one of the most important social and economic policy issues worldwide. Here in the US, about one in five Americans serve as unpaid caregivers to loved ones, and the reality is that many of these caregivers also need care themselves. However, caregivers are often so focused on the responsibility of caring for others that they have little time or thought for themselves.
According to the Global Carer Well-Being Index, a survey of more than 9,000 caregivers worldwide released in 2021, 89 percent of caregivers said they put the needs of those they are caring for over their own; 55 percent said they are not getting enough sleep; and 45 percent said they are exercising less than they were before the pandemic.
In addition, the pandemic dramatically exacerbated and accelerated the pain points of unpaid caregivers. While caregivers weren’t alone in experiencing 2020 as a highly emotional and unstable period, they faced unique pressures, demands and time commitments. Amid rising responsibilities, many caregivers sacrificed their own health and well-being for the sake of people they love, dealing with emotional isolation, financial strife, and lack of time to recharge. These challenges were even more significant among women.
Furthermore, these challenges were felt across caregivers of all disease areas, as the data from the Global Carer Well-Being Index showed. For instance, mental health was a deeper strain for caregivers who helped those impacted by cancer. And, for caregivers of people living with multiple sclerosis (MS), the pandemic showed that 76% were concerned about affording proper long-term care as an MS caregiver – an issue likely to exacerbate with today’s inflation rates.
In the US, the story is very similar to the worldwide experience of caregivers, and even worse in certain areas; for example, a US-specific data point from the Carer Well-Being Index showed that on average, American caregivers spend more hours caregiving than most of their global counterparts.
As the world population ages, caregivers will continue to play a critical role, providing substantial economic value to countries globally. Yet society continues to overlook their efforts; in fact, the Global Carer Well-Being Index showed that 94% of caregivers agree the important role they play is not widely recognized by society. To make matters worse, about one out of three caregivers anticipated their caregiving duties to nearly double and continue at heightened levels post-pandemic.
Add it all up, and today, the world faces a deep societal problem: caregivers are undercounted, unheard, struggling and feel all but invisible. If we continue to minimize the value of unpaid caregivers, this has the potential for disastrous impact, as various research has shown that when the mental health of the caregiver is compromised, the outcomes of those for whom they are caring are affected. Continuing to undervalue our caregivers has the potential to place additional pressure on healthcare systems, which, in turn, will impact the economy.
There’s no one-size-fits-all approach to improving the needs of caregivers, but here are five priorities to consider:
1. Safeguard the health and well-being of unpaid carers. Given the increasing prevalence of mental health issues, caregivers need to be encouraged to take time for themselves. One important way to support mental health is through carer support networks. In the US, organizations like Caregiver Action Network and National Alliance for Caregiving have helpful resources and support groups to provide that connection.
Looking to the future, no-cost counseling programs would go a long way toward assisting caregivers in coping with stress and challenges associated with caregiving.
2. Minimize the financial burden placed on unpaid caregivers. We must recognize that the financial burden on unpaid caregivers is real, and there’s a need to improve this challenge. But there are ways to help in the short-term; for starters, workplaces can provide paid time off dedicated to caring for their loved ones.
In the US specifically, affordable transportation accommodations (both urban and rural), groceries and meal services are all areas society can seek to improve upon.
3. Enable access to user friendly information and education. The pandemic increased the use of telehealth, which has evolved healthcare and enabled progression in many ways. However, for older caregivers, 68% surveyed in the Global Carer Well-Being Index agreed they need additional guidance/training on how to use telehealth/online tools/mobile apps for caregiving.
Offering free, high-speed internet is important to kickstarting the uptake of telehealth tools – and providing support and training of digital health resources will be an important next step.h
4. Support unpaid caregivers who are employed. As the Boston Globe acknowledged earlier this year, the strain of juggling professional and personal responsibilities can take a heavy toll. Employers can help take the first step on easing the strain and pushing a national agenda by creating flexible workplaces that respect caregiving obligations. Further, educating the surrounding workplace environment on the needs of caregivers can help to alleviate unconscious bias.
5. Invest in research to ensure caregivers’ needs and contributions are recognized and addressed. The more research conducted, the better we can understand and address the needs of caregivers and disparities among various populations. From qualitative research involving focus groups with caregivers across disease areas, whether dementia, MS, cancer or otherwise, to quantitative studies, across both the private and public sectors… the more we know, the more likely we can drive change at the policy level.
November is National Family Caregivers Month in the US, an opportunity to honor those who have taken on this critical role of caring for loved ones, while raising awareness of the challenges they face daily and what needs to be done to drive tangible changes.
Now more than ever, federal and state governments, public entities, the private sector and individuals across the US all have roles to play in addressing these problems. With focused effort and collaboration across all facets of society, we can improve the lives of our unpaid caregivers.
Photo: ipopba, Getty Images
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