First-of-a-kind national strategy aims to take care of family caretakers

At least 53 million people were providing informal, usually unpaid, care and support to aging family members of all ages with disabilities, including mental health conditions, according to research from 2019.

(KXAN) — For the first time, the federal government has issued a national strategy to support family caregivers.

“This is so significant, this is a historic opportunity, a new plan to better support family caregivers,” Wendy Fox-Grage with the National Academy for State Health Policy said.

At least 53 million people were providing informal, usually unpaid, care and support to aging family members of all ages with disabilities, including mental health conditions, according to research from 2019. At the same time, at least 2.7 million grandparents carried the primary responsibility for caring for grandchildren whose parents were unable to do so.

The 2022 National Strategy to Support Family Caregivers found:

"These numbers are increasing rapidly due to growing populations of older adults and people with disabilities; the long-standing shortage of direct care workers, which has reached crisis proportions during the pandemic; the continuing opioid crisis and other issues that are creating thousands of new 'grandfamilies' each year, and a variety of other factors."

Over the years, research has shown family caregivers lose an estimated $522 billion in wages each year due to caregiving, employers are losing an estimated $33 billion per year due to employees’ caregiving responsibilities and further studies have found family caregivers suffer a mortality rate 63% higher than non-caregivers.

The statistics paint a grim picture for caretakers but have now led to what advocates call a historic opportunity.

The 2022 National Strategy to Support Family Caregivers was developed by two Congressionally-mandated advisory councils created by the RAISE Family Caregiving  Act and the Supporting Grandparents Raising Grandchildren Act. In 2021, each advisory council delivered an initial report to Congress with recommendations for increasing awareness and reducing the financial challenges faced by family caregivers and included testimonials from family caregivers and found:

Family caregiving affects different people at various stages of life and requires a wide range of skills and competencies, the best way to holistically support all family caregivers would be through a unified effort. As a result, the Advisory Councils collaborated to develop the Strategy.

Testimonial

Creating the framework is long overdue, said Fox-Grage.

“There are 53 million of us in America who are family caregivers, providing all sorts of things ranging from helping people get to their doctor's appointments, helping them with meals, bathe, go to the bathroom. This is help for older adults and someone living with a disability but family caregivers just have not been adequately supported.”

The report includes hundreds of actions that government, communities and businesses can do to support family caregivers.

“The National Strategy has all kinds of actions that your state can take for improving access to care in the home by paid aids, improving access to what we call respite care to give those family caregivers a break. And even for expanding employment protections for those family caregivers who were juggling both work with their caregiving responsibilities,” Fox-Grage said.

The actions outlined in the strategy are limited to existing budgets and programs but includes other types of federal actions that would require new legislation.

“I want to encourage everyone to read the plan that's located at the [caregiver strategy] website,” Fox-Grage said. “Then they can share this plan and let their state and local policymakers know about it and, at that same website, they can publicly support it and comment on the strategy.”

Advocates call the ongoing collaboration “the first time that ideas from local and state agencies and nonprofit organizations are integrated with recommendations for the federal government in a combined initiative dedicated to family caregiving.”