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Hospices Facing US Caregiving Crisis in 2025

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Hospice News

June 2, 20256 min read

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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

    ---

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

    Tags
    #Caregivers#Crisis#Support#Policy
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