It is likely that at some point in our lives, each of us will have to care for a loved one affected by an illness.
Unpaid care has become one of the most important social and economic policy issues worldwide. Here in the US, approx one in five Americans serves as an unpaid caregiver for loved ones, and the reality is that many of these caregivers also need care. However, caregivers are often so focused on the responsibility of caring for others that they have little time or thought for themselves.
According to Global index of caregiver well-being, a survey of more than 9,000 caregivers worldwide published in 2021, 89 percent of caregivers said they put the needs of those they care for before their own; 55 percent say they don’t get enough sleep; and 45 percent said they exercise less than they did before the pandemic.
In addition, the pandemic has dramatically exacerbated and accelerated the pain points of unpaid caregivers. Although caregivers were not alone in experiencing 2020 as a highly emotional and volatile time, they faced unique pressures, demands and time commitments. Amid mounting responsibilities, many caregivers have sacrificed their own health and well-being for the sake of the people they love, dealing with emotional isolation, financial hardship and a lack of time to recharge. These challenges are even more significant among women.
Furthermore, these challenges are felt among caregivers across all disease domains, as evidenced by the Global Carer Well-Being Index data. For example, mental health was a greater strain for caregivers helping those affected by cancer. And for caregivers of people living with multiple sclerosis (MS), the pandemic has shown that 76% are concerned about providing adequate long-term care as an MS caregiver—a problem that is likely to worsen with today’s inflation rates.
In the US, the story is very similar to the global 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, US caregivers spend more hours caring than most of their global counterparts.
As the world’s population ages, caregivers will continue to play a critical role, providing significant economic value to countries worldwide. But society continues to ignore their efforts; in fact, the Global Carer Wellbeing Index showed that 94% of carers agreed that the important role they play is not widely recognized by society. To make matters worse, about one in three caregivers expected their duties to double and continue at increased levels after the pandemic.
Put it all together and the world today faces a profound societal problem: caregivers are undervalued, unheard, struggling and feeling almost invisible. If we continue to minimize the value of unpaid carers, this has the potential to have a catastrophic impact as various research shows that when a caregiver’s mental health is compromised, the outcomes of those they care for are affected. Continuing to undervalue our caregivers has the potential to put additional pressure on health systems, which in turn will affect the economy.
There is no one-size-fits-all approach to improving the needs of caregivers, but here are five priorities to consider:
1. Protect the health and welfare of unpaid carers. Given the increasing prevalence of mental health problems, caregivers should be encouraged to take time for themselves. One important way to support mental health is through caregiver support networks. In the US, organizations such as Caregiver Action Network and National Alliance for Caregiving you have helpful resources and support groups to provide that connection.
Looking to the future, free counseling programs would go a long way toward helping caregivers cope with the stress and challenges of caregiving.
2. Minimizing the financial burden on unpaid carers. We need to recognize that the financial burden on unpaid carers is real and there is a need to improve this challenge. But there are ways to help in the short term; for starters, workplaces can provide paid leave dedicated to caring for their loved ones.
In the US specifically, affordable transportation services (both urban and rural), groceries, and food services are all areas that society could look to improve.
3. Providing access to user-friendly information and education. The pandemic has increased the use of telehealth, which has evolved healthcare and enabled progression in many ways. However, for older carers, 68% of Global Carer Well-Being Index respondents agreed that they needed additional guidance/training on how to use telehealth/online tools/mobile apps to cares.
Offering free, high-speed internet is important to kick-start the uptake of telehealth tools – and providing support and training on digital health resources will be an important next step.h
4. Support unpaid carers who are employed. Like 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 to ease tensions and drive a national agenda forward by creating flexible workplaces that respect caring responsibilities. Additionally, educating the workplace environment about the needs of caregivers can help alleviate unconscious bias.
5. Invest in research to ensure that the needs and contributions of carers are recognized and addressed. The more research that is conducted, the better we can understand and address the needs of caregivers and the disparities between different populations. From qualitative research involving focus groups with carers in different disease areas, whether dementia, MS, cancer or others, to quantitative studies in both the private and public sectors… the more we know, the more likely we are to drive change at the political level.
November is National 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 to stimulate tangible changes.
Now more than ever, federal and state governments, public entities, the private sector, and individuals across the U.S. have a role to play in addressing these issues. With focused effort and collaboration across all aspects of society, we can improve the lives of our unpaid carers.
Photo: ipopba, Getty Images