Family Caregivers: Recognizing Their Value and Taking Action

"Family and friends are the backbone of America’s care system – and of caregiving worldwide."


Eric Schneidewind
President, AARP Board of Directors

The overwhelming majority of older adults want to remain in their homes and communities, living independently for as long as they can. They just as fervently desire to remain independent and not to be a burden to others.

The reality is that for many people, that’s going to require some level of assistance at some point.

The bulk of such assistance is provided by a vast army of family members, who unflinchingly, generously care for their loved ones.

Family and friends are the backbone of America’s care system – and of caregiving worldwide. At some point in our lives, each of us will likely take care of somebody we’re close to, who needs help with everyday activities.

It’s the family caregiver who is chiefly responsible for allowing millions of older Americans to remain in their own homes as they wish, and avoid much more costly nursing homes.

These caregivers are the unsung heroes at the very center of the world’s system of long-term care.

Right now, there are roughly 40 million family caregivers in the United States – and as many as 434 million worldwide, a number that is likely to soar in the future. In the US, 60 percent of them are women, 60 percent are working full- or part-time, and 25 percent are millennials ages 18-34, who are equally likely to be female.

Their contribution is priceless, but in real dollars, those trips to the grocery store, visits to the doctor, help with finances and other aspects of daily life would cost $470 billion nationally, if individuals had to pay for them. We can expect that number to grow. The total estimated economic value of uncompensated care provided by family caregivers in the US in 2013 surpassed total Medicaid spending and nearly equaled the annual sales of the four largest US tech companies combined (Apple, Hewlett Packard, IBM, and Microsoft.)

 According to AARP CEO Jo Ann Jenkins, “The global economic and social implications are staggering. In developing countries, for example, surveys show that women account for 75 percent of the time spent on unpaid care in households at a value ranging from 20 to 60 percent of GDP”

The International Alliance of Carer Organizations (IACO), an umbrella for 12 member nations, comes together each year to share best practices among nations. As diverse as caregivers are worldwide, IACO has concluded they share three universal needs:

  • Recognition of the vital role caregivers play;
  • Creation of a supportive workplace environment;
  • Safeguarding the health and well-being of caregivers.

Many countries do provide supports to family caregivers, addressing these needs:

  • Australia has a government program providing financial support to caregivers unable to work full time because of their caregiving responsibilities
  • Canada offers employment insurance benefits and job protection to those caring for loved ones at the end of life;
  • In Finland, among other financial and social supports, caregivers are entitled to at least three days of temporary leave a month;
  • New Zealand’s Ministry of Health offers respite services for caregivers;
  • UK caregivers providing more than 35 hours a week of care are given a monthly allowance that includes pension benefits. They also enjoy employment protections.

Workplace policies that support employee caregivers can also benefit companies by enhancing productivity and enabling workers to keep up with their duties. Almost 3 out of 4 workers age 40 and older say that allowing work flexibility for caregiving would help improve work/life balance. Options to achieve this balance could include flexible or teleworking arrangements, referrals to community resources, and affordable back-up care.

Just as important is preparing and supporting caregivers for the increasingly complex role they play.

AARP has found that family caregivers perform medical-nursing tasks of the kind and complexity once provided only in hospitals – flushing catheters, administering intravenous fluids and providing wound care, for example. Inadequate preparation can lead to inadequate follow-up care, which can lead to a hospital admission or readmission.

Forty percent of caregivers who perform medical nursing tasks reported feeling down, depressed or hopeless in AARP research.

At this point, the United States is not prepared to meet the long-term care needs of our rapidly aging society.

Nationally, in 2010, there were 7 potential caregivers for everyone age 80-plus. By 2030, the ratio is projected to decline to 4 to 1; and by 2050 it may fall below 3 to 1.

Around the world, the caregiving challenge will only grow. Between 2015 and 2050, the number of people worldwide aged 60 and over is expected to more than double, while the number of persons aged 80 and over will more than triple.

AARP believes we need a comprehensive national strategy to help people have choices about where and how they live as they get older.

This strategy should include:

  • Concrete steps to ease the burden on family caregivers;
  • Steering more resources in public programs like Medicaid toward care at home;
  • Better integration of healthcare services;
  • Expanded use of technology to help people live independent, secure and engaged lives as they get older; and…
  • More ways to help individuals pay for services they need, without having to impoverish themselves.

We believe that a better-financed, better-coordinated system for long-term care would help both the individuals who need care, and take some of the load off the family caregivers who so often provide it.

These are subjects that will, at some point, touch each of us personally – as older persons, as members of our communities, as caregivers, and as the cared-for. It’s time to heed the words of AARP’s founder, Ethel Percy Andrus. In 1958, she said: It is one thing to recognize that older dpeople represent the nation’s greatest single human resource available, and it is quite another to do something about it….

Let’s do something about it.

For more information, visit the AARP Caregiving Resource Center


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