Informal Caregivers: Sustaining the Core of Long Term Services
and Supports
Susan C. Reinhard, PhD, RN, FAAN, Senior Vice President and Director, AARP
Public Policy Institute
Rhonda Montgomery, PhD, Helen Bader endowed professor in Applied
Gerontology at University of Wisconsin, Milwaukee
Mary Jo Gibson, MA, Strategic Policy Advisor, AARP Public Policy Institute
Paper commissioned for “Building Bridges: Making a Difference in Long-Term Care” Fifth Annual Long-Term Care Colloquium sponsored
by The Commonwealth Fund and conducted by AcademyHealth, Washington, DC, June 7, 2008. The views expressed herein are for
information, debate, and discussion, and do not necessarily represent official policies of AARP.
Overview of presentation
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Conceptual framework
Research highlights
Research priorities
Policy options
Conceptual Framework
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Caregiver-as-Client
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Caregiver-as-Provider
Importance of Informal
Caregiving
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Family caregivers bulwark of LTSS
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help with essential daily activities
perform many medically-oriented tasks
serve as translators, navigators, care
coordinators, advocates, and more
Economic value of caregiving estimated
at $350 billion in 2006
Importance of Informal
Caregiving
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Delays or prevents the use of nursing
home care
Is associated with shorter hospital stays
and fewer readmissions
Importance (cont.)
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Demand for LTSS increasing while
supply of formal (paid) workers is
already insufficient
Supply of informal caregivers in the
future is a wildcard
Impact on Family Caregivers
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Adverse health effects
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chronic illness
increased mortality
stress and depression
Threats to economic security
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changes in work patterns
“opportunity” costs
direct out-of-pocket expenses
Diversity of Caregiving
Experiences
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Racial and ethnic minority caregivers
Low income caregivers, “middle”
income caregivers
Rural caregivers
Long-distance caregivers
Caregivers for persons with dementia,
intellectual disabilities, physical illness,
mental illness
Caregivers Need More Recognition &
Support from Providers
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Better communication
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HIPAA interpretation as barrier
More preparation for transitions from
hospitals and post-acute settings
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Assessment of their own needs
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Recognition as “team member”
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Knowledge of care recipient
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Care skills
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Desire to be partners
Challenge to Providers
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Person-centered care vs. Person
and Family –centered care?
Decisions for the interest of whom?
 Assessment means service
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Staff training
 Source of reimbursement?
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Challenges facing
policymakers
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Ideologies of Individualism & Familism
Funding
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Will support supplant Families?
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(woodwork effect)
Ambivalence of social policy concerned
with family responsibility
LTC policy second to health care reform
Impact of Informal Caregiving
on Care Recipients
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Family members and independent living
strongly preferred by older persons
Reduces unmet needs for personal
assistance
Helps to improve outcomes and quality
of care
Potential Benefits of
Interventions
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Enhance care skills & quality of care
Reduce stress and depression
Enhance physical health
Sustain a “free” work force
Delay or prevent premature nursing
home placement
Minimize LTC costs
Research Priorities
1. Nationally representative data on
disability and family caregiving
2. Interface between informal and formal
caregiving
3. Intervention research that
acknowledges diversity and caregiving
as a journey
Research priorities (cont.)
4. Cost-effectiveness of caregiver
interventions and the economic
implications of caregiving
5. Caregiver assessment for effective
support and targeting of services
6. Translation of evidence-based
interventions into practice
Policies and Strategies to
Support Family Caregivers
Current federal & state environment
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More emphasis on HCBS; increased
consumer direction
Respite Lifespan Act still not funded
NFCSP underfunded
States concerned about mandating
assessment
Policy options for caregiver
support
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Direct services, such as respite
Caregiver assessment
Financial relief
Tax policies
Workplace flexibility
Legal protections
Broader policy issues
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Implications of paying family caregivers
Public attitudes toward family
responsibility
Criteria for policy decision-making
Need for universal health care
Need for reform of LTSS system