The Burden of Being a Family Caregiver


Policymakers across the board are now agreeing that family caregivers need a robust support system in order to effectively perform their duties. There are key areas in the caregiving industry that must be addressed in order to reduce the heavy burden on those who must provide regular aid to aging loved ones. 

According to some studies, it is projected by 2030, one-fifth of the U.S. population will be at least 65, meaning that more people than ever will need daily assistance with some activities of daily living. It’s an indisputable fact that almost everyone will end up being a caregiver or will need one at some point in their life. 

A 2023 AARP report titled “Valuing the Invaluable” established that family caregivers provide an average of 18 hours of unpaid care per week. Strategies and policies to help reduce caregiver burden while taking care of loved ones are very much needed.

Thankfully, the Federal Government and several States have laid out plans and initiatives to help resolve this problem. 

The Burden of Being a Family Caregiver

National Strategy:

For the first time, the federal government has a plan. One year ago, the Department of Health and Human Services (HHS) released the National Strategy to Support Family Caregivers, the nation’s first official blueprint to address this need. It is intended to mobilize support of unpaid caregivers in five main areas: 

▶︎ Increasing awareness of their issues and outreach to those in need. 

▶︎ Building partnerships and engagement with family caregivers. 

▶︎ Strengthening services and support available to caregivers. 

▶︎ Ensuring their financial and workplace security. 

▶︎ Expanding data, research and evidence-based practices. 

The national strategy, which comes with initial funding of $20 million to be doled out in grants from the Administration for Community Living (a division of HHS created in 2012), outlines nearly 350 federal actions and more than 150 community, state-based and private-sector actions to help bolster caregiver health, well-being and financial security, with a time frame to implement federal actions within three years. After the release of the national strategy, President Joe Biden issued an executive order detailing more than 50 actions his administration will take. 

Paid Leave:

More states are putting into place legislation to expand paid work leave for family caregivers. Maine, for example, adopted a paid family and medical leave program that will go into effect in 2025. Employers and employees will split a 1 percent payroll tax to fund the program, allowing workers to take up to 12 weeks of paid leave each year to care for a sick family member. State Sen. Mattie Daughtry, an author of the bill, says she is “thrilled” that it got passed into law after 10 years of trying.

New Unpaid Leave Laws

▶︎ MAINE: Up to 12 weeks/year (starts 2025)

▶︎ MINNESOTA: Up to 12 weeks/year (starts 2026)

▶︎ ILLINOIS: Up to 40 hours/year (starts 2024)

Another expansive bill was signed into law this year in Minnesota, allowing workers to take up to 12 weeks for family leave and up to 12 weeks for one’s own serious medical condition, up to a maximum of 20 weeks annually, beginning Jan. 1, 2026.

To fund the program, payroll premiums will be split between employers and employees. Workers can use the paid leave to care for someone not related by blood or marriage, such as a significant other, neighbor, or friend.

Financial Support:

In 2021, the economic value of family caregivers’ unpaid contributions was about $600 billion. They often also incur caregiving-related expenses. While some states have instituted small forms of tax relief, Oklahoma is being heralded as the first state in the nation to adopt an expansive caregiver tax credit with its Caring for Caregivers Act, which becomes law on Jan. 1.

The legislation will allow a tax credit of up to 50 percent of eligible caregiver costs, capped at $2,000 per year for most participants and $3,000 per year for those caring for veterans or people with a dementia-related diagnosis.

Eligible expenses range from big-ticket items, such as installing a ramp, to less costly expenses, such as a walker. Hiring a home care aide, respite care, adult day care, personal care attendants and health care equipment are other eligible expenditures.

In Utah, a bill was passed this year allowing for more caregivers to be compensated for their work—actual weekly pay going into their pockets. During the COVID-19 pandemic, when paid caregivers were not able to come into homes, the state expanded a Medicaid program for spouses to include parents and legal guardians to be paid for the work and services they provided.

The state Legislature voted to make it a permanent fixture. This means that spouses and guardians of an individual using Medicaid waiver services (allowing for care in a home instead of a long-term facility) can be paid for up to 40 hours per week to provide extraordinary direct care to their loved one. 

“Over 1,000 families are now significantly benefiting from caregiver compensation in Utah,” says Lisa Thornton, a lawyer and longtime advocate. Thornton struggled to find stable outside caregiver help for her severely disabled daughter and found that her own care was the most successful. Thornton began receiving $593 a week for her role as caregiver. 

Paid Training:

Family members are often drawn suddenly and without guidance into a caregiving role, leaving them on their own to figure out how to perform a range of tasks they’ve never done before.

It is even more disturbing to learn that most caregivers are usually reluctant to ask for assistance until they reach a point of crisis.

A new proposal from the Centers for Medicare & Medicaid Services (CMS) would help with that, authorizing Medicare payments to healthcare professionals to train family caregivers in a range of activities, from managing medications to helping with daily living. 

Closing The Inequity Gap:

One of the most challenging caregiving issues is dealing with income, racial and other disparities. Take the common example of an older person on Medicaid who is coping with a serious chronic disease.

They wish to stay in their home, but if they are not eligible or not able to get home care, they may wind up in a Medicaid-funded nursing home. Medicaid does grant waivers that mean it will pay for in-home care, but they have been hard to get.

An important action aimed at helping those who have not had access to care comes from Biden’s executive order. The recently announced Medicare Dementia Care Model aims to improve the quality of life for people living with dementia by helping them remain in their homes while reducing the strain on unpaid caregivers.

CMS will test a new payment for participants who deliver supportive services to people with dementia. This will include care coordination, access to a helpline, and a care navigator who can help find services. 

Although this will affect a broad range of people, the announcement from CMS specifically noted that Black, Hispanic, Asian-American, Native Hawaiian, and Pacific Islander populations have been “particularly disadvantaged” in receiving dementia care.

This Guiding an Improved Dementia Experience (GUIDE) model—running for eight years starting in July 2024—will provide new resources and greater access to specialty dementia care in “underserved populations and communities.”

Courtesy: Ann Oldenburg, MA in Aging & Health Program, Georgetown University.  (Former USA Today reporter, presently assistant director of Georgetown University’s journalism program.)

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