Hospices Facing US Caregiving Crisis in 2025

Source: Hospice News, June 2025

A National Emergency

Nearly half, or 48%, of US states are facing "critical" or "high-risk" family caregiving situations requiring urgent attention and greater intervention by policymakers, according to a recent study conducted by Columbia University's Mailman School of Public Health.

The findings highlight a growing crisis that directly impacts hospice care delivery and the families who depend on it.

The Scope of the Problem

Overwhelming Burden on Families

Family caregivers play a vital role in supporting loved ones experiencing challenging health circumstances, but many are reaching a breaking point:

- 53 million Americans currently provide unpaid care to family members

- Average caregiving duration exceeds 4 years

- 61% of caregivers report experiencing high levels of stress

- 40% of family caregivers provide more than 40 hours of care per week

Economic Impact

The economic value of unpaid family caregiving is estimated at $600 billion annually - nearly twice the actual cost of paid home care and nursing home services combined.

Yet caregivers face:

Lost wages and reduced work hours

Depleted savings and retirement funds

Physical and mental health decline

Social isolation

Why This Impacts Hospice Care

Hospice Depends on Family Caregivers

The hospice model assumes the presence of a primary caregiver who can:

Provide basic care when hospice staff aren't present

Administer medications

Monitor patient condition

Communicate changes to the hospice team

Coordinate care activities

When caregivers are overwhelmed, the entire hospice model is strained.

The Vicious Cycle

Families wait too long to enroll in hospice due to lack of support

Late enrollment means less time to prepare and support caregivers

Overwhelmed caregivers experience burnout

Patient care quality suffers

Family members develop their own health problems

How Hospices Are Responding

Enhanced Caregiver Support Programs

Leading hospice providers are expanding support services:

24/7 Access to Support:

Caregivers can call any time with questions

Hospice team members available for phone consultation

In-person visits when needed for assessment

Care Coordination:

Hospice care team leads coordinate the loved one's care

Removes coordination burden from family shoulders

Streamlines communication among providers

Support Resources:

Virtual and in-person caregiver support groups

Educational webinars and training

Respite care services

Bereavement support

Innovative Care Models

According to Steven Lee, co-founder and CEO of ianacare, "more innovative care models and disease-specific reimbursement options have widened pathways for hospice providers to improve family caregiver support."

Examples include:

Integrated technology platforms for care coordination

Telehealth support for remote caregivers

Partnerships with community organizations

Specialized dementia and Alzheimer's care programs

Policy Gaps and Proposed Solutions

Current Policy Landscape

Recently proposed federal initiatives have included:

National caregiver tax credit

Grant programs for direct care workers and family caregivers

Social Security caregiver credit providing wages to caregivers

Paid family leave expansion

However, to date, none of these have come to fruition.

What's Needed

Advocates are calling for:

1. Financial support - Tax credits, stipends, or wages for family caregivers

2. Workplace protections - Expanded FMLA and paid leave policies

3. Training and education - Free caregiving skill-building programs

4. Respite care funding - Subsidized temporary relief care

5. Mental health support - Counseling and therapy coverage

6. Healthcare coverage - Protecting caregivers' own health insurance

State-Level Response Varies Widely

High-Risk States

States identified as "critical" or "high-risk" typically have:

Aging populations without adequate support infrastructure

Limited Medicaid home and community-based services

Few state-funded caregiver support programs

High poverty rates

Rural geography with service deserts

Best Practice States

States with stronger caregiver support offer:

State-funded respite care programs

Caregiver training and certification programs

Tax credits or stipends

Strong Medicaid HCBS programs

Coordination with aging services networks

What Caregivers Can Do

Advocate for Yourself

Don't suffer in silence:

1. Ask for help - Use all available hospice support services

2. Join support groups - Connect with others facing similar challenges

3. Request respite care - Take breaks to avoid burnout

4. Speak up - Tell policymakers about your experiences

5. Set boundaries - It's okay to say no and protect your own health

Know Your Rights

As a hospice family caregiver, you're entitled to:

Education and training from the hospice team

24/7 access to hospice support

Respite care services

Emotional and spiritual support

Bereavement counseling

Care coordination assistance

Use Available Resources

National resources for caregivers:

- Family Caregiver Alliance: caregiver.org

- AARP Caregiving Resource Center: aarp.org/caregiving

- Caregiver Action Network: caregiveraction.org

- Eldercare Locator: eldercare.acl.gov

- ianacare Platform: ianacare.com

The Path Forward

Hospice Industry Commitment

The hospice industry recognizes that supporting family caregivers is not optional - it's essential to the mission.

Leading organizations are:

Advocating for policy changes

Expanding caregiver support programs

Training staff in caregiver assessment

Developing innovative support models

Partnering with community resources

A Call to Action

This crisis requires action from:

- Policymakers - Pass meaningful caregiver support legislation

- Employers - Offer flexible work arrangements and paid leave

- Healthcare systems - Integrate caregiver support into care models

- Communities - Build volunteer and mutual aid networks

- Families - Have honest conversations about care needs early

Hope on the Horizon

Despite the crisis, there are reasons for optimism:

Increased awareness and public discourse

Growing bipartisan political support

Innovative technology solutions

Stronger advocacy organizations

Cultural shift recognizing caregiving value

The question is: Will change come fast enough to help the millions of families currently struggling?

Take Action

If you're a family caregiver:

1. Connect with your hospice social worker about available support

2. Join a support group (virtual or in-person)

3. Contact your elected representatives about caregiver legislation

4. Share your story to raise awareness

5. Prioritize your own health - you can't pour from an empty cup

If you're not a caregiver:

1. Support caregiving friends and neighbors with practical help

2. Advocate for policy changes that support family caregivers

3. Consider volunteering with hospice or caregiving organizations

4. Educate yourself so you're prepared if caregiving becomes necessary

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Source: Hospice News, June 2025 | Columbia University Mailman School of Public Health Study