Report: Caregivers Need More Support

If you care for an elderly loved one, you know that you’re providing an important service that makes a difference in someone’s life. But if providing that care has taken a toll on your health, finances, and personal life, know that you aren’t alone.

Some 18 million people care for family members or others over the age of 65 and those who help seniors with three or more personal tasks a day devote 253 hours a month to caregiving — almost the equivalent of two full-time jobs, according to a new report.

Families Caring for an Aging AmericaThe report “Families Caring for an Aging America,” released by the National Academies of Sciences,
Engineering, and Medicine, looked at the impact of caregiving on families, identified barriers to caregiving, and called for a “transformation in the policies and practices affecting the role of families in the support and care of older adults.”

Caregivers, essential to our seniors’ long-term care and well-being, are often overlooked despite their hard work and sacrifices. A change in public policy is needed, researchers said, as well as a switch to more family-centered care that takes into account the needs of the caregiver as well as the patient.

The report’s findings:

The need is growing while families are shrinking

According to the report, the number of older adults is growing (the 80+ age group is growing the fastest). At the same time, American families are getting smaller as many people don’t marry and many couples don’t have children. In addition, family makeup is changing due to divorce and blended families.

Caregiving can result in financial harm

Many caregivers are employed and caregiving can affect their jobs. According to a survey, some 75% of those surveyed said caregiving has had a negative impact on their work. Sixty percent having had to make changes to their schedules; 31% frequently arrive late or leave early. More than 50% say they’d missed one or more weeks of work because caregiving.

Some quit their jobs to become caregivers at great financial cost.

According to a 2011 report by the MetLife Mature Market Institute, women who leave the labor force early and/or reduce the hours they work because of caregiving responsibilities lose about $142,693 in wages. The estimated impact of caregiving on lost Social Security benefits is $131,351. Men see a loss of about $89,107 in wages, with $144,609 in lost Social Security benefits

Plus, many caregivers incur significant out-of-pocket expenses to care for loved ones. More than 40% of family caregivers spend $5,000 or more of their own money each year on food, clothing, transportation, medical care and other costs for their loved ones, according to

Caregiving can take a significant physical toll

depressed caregiverWhile some people thrive in the caretaker role, others may experience emotional distress, depression, anxiety, or social isolation. Some are in poor physical health, with high levels of stress, and higher rates of chronic disease than their peers.

“If their needs are not recognized and addressed, family caregivers risk burnout from the prolonged distress and physical demands of caregiving, and the nation will bear the costs,” the NAS report said.

Caregivers face barriers to effective caregiving

Being a caregiver means dealing with a number of providers and taking on a number of tasks. Caregivers must deal with doctors, nurses, social workers and others in order to provide their loved one with information, diagnosis, safe medication delivery, and more. Unfortunately, the report concluded, “family caregivers are often marginalized in the delivery of health care and LTSS [long-term services and supports]. Paradoxically, some providers exclude them from older adults’ treatment decisions and care planning while also assuming they are able, have the knowledge, and are willing to perform essential tasks.”

More work is needed

The researchers said growing research has revealed important insights and information about better support for caregivers, including education and skills training, counseling, self-care techniques, and personal care services. However, up until now, access to these supports has been limited.

As a result the group is calling on the federal government to implement a National Family Caregiver Strategy that includes:

  • effective mechanisms to ensure that family caregivers are routinely identified in delivery of services to older adults with impairments;
  • Medicare and Medicaid payment reform to motivate providers to engage family caregivers effectively;
  • training of health care and LTSS providers to engage caregivers;
  • dissemination and funding for evidence-based caregiver services;
  • evaluation and adoption of federal policies that provide economic support to working caregivers; and
  • expansion of the national data collection infrastructure to create a knowledge base about caregivers.

Happy caregiver and elderly womanIn addition, states and municipalities need to expand job protections and family leave for caregivers. Both candidates for president propose to provide new benefits for those who take care of elderly relatives in the U.S.

The changes are critical, according to the National Academies of Sciences, Engineering, and Medicine.

“If the needs of caregivers are not addressed, we risk compromising the well-being of our elders and their families.”

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