Caring for the Caregivers: State Strategies to Support an Unpaid Workforce

By Samantha Scotti | May 2022


More than 1 in 5 Americans provided unpaid care to another person with sickness, disability or other functional limitations in the last year. The type of care provided ranges from helping with activities of daily living, like eating, bathing or dressing, to running errands, paying bills or attending appointments.

About 48 million caregivers care for someone over the age of 18 and nearly half of all caregivers who provide care to older adults do so for someone with Alzheimer’s or another dementia. Caregiving for someone with Alzheimer’s or another dementia accounted for more than $271 billion in unpaid care in 2021. The caregiver bears much of the cost of care, including out-of-pocket expenses, without compensation.

Eighty-three percent of care provided to older adults in the United States comes from family members, friends or other unpaid caregivers—and the demand for care is only anticipated to increase. Currently, one in six Americans are 65 and over, and this is projected to rise to one in five by 2030. Caregivers span all ages, racial and ethnic groups and socioeconomic statuses, but the majority are women (58%) and identify as non-Hispanic white (over 60%).

Caregiving can create substantial physical, emotional and financial strains on caregivers. The responsibility is often stressful and can cause caregivers to neglect their own health and wellbeing. A recent study found nearly one in four caregivers said caregiving has made their health worse. Caregiving can also lead to financial challenges. A study on caregiving and the workforce found approximately two in 10 employed caregivers had to stop working and four in 10 had to reduce their working hours to provide care.

State Action

Recognizing the challenges caregivers face, states are exploring strategies to support those providing this important care through financial supports and dementia-specific resources and respite care.

Financial Supports

Medicaid’s self-directed services allow beneficiaries to play a key role in creating and managing their own care plan, including employing or choosing their caregivers. Several states use this option to compensate caregivers, though often with some restrictions. Maine LD 84 directs the Maine Department of Health and Human Services to seek federal approval to amend an existing Medicaid waiver to allow family members to become paid caregivers for waiver enrollees. Utah SB 63 similarly directs the Department of Health to amend a waiver to al- low spouses who are caregivers to be reimbursed.

While these states leverage their public assistance programs, some states have appropriated funds to directly support unpaid caregivers. Arizona’s Family Caregiver Reimbursement Program allows caregivers to receive a 50% reimbursement up to $1,000 for home modifications to make living spaces more accessible and to cover assistive care technology, like hearing aids or glasses. This program launched in 2020, after a $1 million appropriation from the legislature. Hawaii similarly directed state funds in 2017 via HB 607, which established the Kapuna Caregiver Program, which provides working family caregivers with a subsidy to be applied toward adult day services. Recent legislation in 2022 (SB 3113) made administrative changes to the program and adds services for care recipients.

About 60% of caregivers in the U.S. were employed in the last year and, on average, caregivers spend 23 hours per week providing care. This can create challenges in the workplace. As of 2022, seven states and D.C. have provisions in effect for workers to get paid time off for caregiving. Three other states have enacted similar provisions effective in coming years, though each varying slightly.

Dementia-Specific Support

While caregiving can be difficult across the board, caregiving for someone with Alzheimer’s or an- other form of dementia can be uniquely challenging. Compared with caregivers of people without dementia, twice as many caregivers of those with dementia indicate substantial emotional, financial and physical difficulties. Several states have looked to build caregiver capacity and ease stress, with a particular focus toward dementia-specific respite care, training or other resources.

Missouri HB 3010 committed over $4.2 million to establish the Structured Family Caregiving Waiver to reduce the burden on family caregivers by providing home and community-based services options to people with dementia and $450,000 for dementia-specific respite care grants. Wisconsin’s Dementia Care Specialists Program provides full-time positions dedicated to supporting people with dementia and their families by providing dementia-specific information, care planning, case management, and consumer-directed personal care. Wisconsin’s 2021-23 budget appropriated $7.12 million across the biennium for the program to support a total of 51 dementia care specialists across the state’s Aging and Disability Resource Centers and local tribes. New York SB 2503C maintains nearly $26 million in annual funding to sup- port the Alzheimer’s Caregiver Support Initiative, including $16.5 million for the Regional Caregiver Support Initiative, $4.7 million for the Alzheimer’s Community Assistance Program, and $4.7 million for the 10 Centers of Excellence for Alzheimer’s Disease.

Federal Action

The Recognize, Assist, Support and Engage (RAISE) Family Caregivers Act, enacted in 2018, requires the Secretary of the Department of Health and Human Services to develop a national caregiving agenda. The RAISE Family Caregiving Advisory Council released its initial report to Congress in 2021. The report summarizes current federal programs supporting caregivers and outlines 26 recommendations for better supporting family caregivers. Priority areas of the recommendations include increased access to services and supports to assist family caregivers and increased financial and workplace protections for caregivers.

The National Family Caregiver Support Program, administered by the Administration for Community Living, provides grants to states and territories to fund various supports that help unpaid caregivers. Grantees provide services like individual counseling, caregiver training, respite care and supplemental services.