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, The views expressed herein are for information, debate, and discussion, and do not necessarily represent official policies of AARP.

Overview of presentation Conceptual framework Research highlights Research priorities Policy options

Conceptual Framework Caregiver-as-Client Caregiver-as-Provider

Importance of Informal Caregiving Family caregivers bulwark of LTSS 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 Delays or prevents the use of nursing home care Is associated with shorter hospital stays and fewer readmissions

Importance (cont.) 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 Adverse health effects chronic illness increased mortality stress and depression Threats to economic security changes in work patterns “opportunity” costs direct out-of-pocket expenses

Diversity of Caregiving Experiences 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 Better communication HIPAA interpretation as barrier More preparation for transitions from hospitals and post-acute settings Assessment of their own needs Recognition as “team member” Knowledge of care recipient Care skills Desire to be partners

Challenge to Providers Person-centered care vs. Person and Family –centered care? Decisions for the interest of whom? Assessment means service Staff training Source of reimbursement?

Challenges facing policymakers Ideologies of Individualism & Familism Funding Will support supplant Families? (woodwork effect) Ambivalence of social policy concerned with family responsibility LTC policy second to health care reform

Impact of Informal Caregiving on Care Recipients 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 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 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 Direct services, such as respite Caregiver assessment Financial relief Tax policies Workplace flexibility Legal protections

Broader policy issues 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