Family Caregiving in an Aging America: A National Perspective

3rd National Conference for Caregiving Coalitions March 18,2009 Lynn Friss Feinberg, MSW National Center on Caregiving Family Caregiver Alliance www.caregiver.org Family Caregiving in an Aging America: A National Perspective

Caregivers are At-Risk • A 25-year body of research shows family caregivers to be a vulnerable and at-risk population that the health and LTC system neglects • Health risks • Financial burdens • Emotional strain • Mental health problems • Workplace issues • Retirement insecurity

“A health problem facing a loved one may be contained in the body of that one person, but it affects the entire family’s soul.” -- Former Vice President Al Gore Family Re-Union Conference June 26, 1998

Caregiving Is at a Tipping Point • Discharging “sicker and quicker” • Increasing stress from dealing with an inefficient health care system and lack of care coordination • Little communication among physicians and lack of contact with the family about treatment and care options • Managing difficult medication schedules and using sophisticated technology in the home • Oxygen equipment, catheters, intravenous medications

Caregiving Is at a Tipping Point • Navigating an increasingly fragmented and confusing service delivery system • Locating and accessing quality paid help • Dealing with “information overload” and choices • Juggling competing demands of work and caregiving • More long-distance caregiving

The Big Disconnect • Lack of understanding of the complexity of caregiving today, and the human toll on those receiving AND giving care….until it happens to you • Huge denial • Scary • Ideological barriers

Families Are Deeply Worried • For many American families in the throws of caregiving for a frail older adult, there is deep worry about quality of care and quality of life. • Families don’t know who to call, or where to go, to get the right kind of help, at the right time, and help they can afford • Deep frustration and a sense of hopelessness about our broken health care and LTC system when you are going through it

Caregivers Express Less Confidence in Future Ability to Obtain High-Quality Care Percent of adults ages 19-64 who are not too confident or not at all confident they will be able to obtain high quality care when needed in the future Caring for sick or disabled family member Not Caring for sick or disabled family member 60 45* 43* 38 40 30 27 24 20 0 Total Women Men * Significant difference at p<.01 or better. Source: Ho, et al. (Aug 2005). A Look at Working-Age Caregivers’ Role, Health Concerns and Need for Support. The Commonwealth Fund.

Families are Invisible • Health care and LTC are largely segregated by the sole focus on the individual “beneficiary” • Family members are often invisible in the care process, yet they: • provide the bulk of everyday care • are most likely to arrange and coordinate care • face their own health and financial risks

Converging Issues: The Perfect Storm • Economics • Demographics • Values

Economics • Control the rising costs of chronic care • About 75% of Medicare spending pays for care for beneficiaries who have 5+ chronic conditions and see an average of 14 physicians each year (Congressional Budget Office, Dec.2008)

Demographics • Baby Boomers are aging • Boomers begin turning 65 in just 2 years (2011) • Among all boomers, the vast majority (73%) have a living parent, step-parent or parent-in-law • For many, family caregiving for an older relative or friend now represents a profound challenge affecting their day-to-day lives

Changing Demographics & Family Structure • The aging of the population and changing patterns of family life will affect nearly every American family in the coming years • The notion of “family” is changing • Club-Sandwich Generation • Increasing diversity • More women in the workplace • More long-distance caregiving

Values • Baby Boomers do not go quietly… • Demanding our own values to get quality, home-based and affordable health care and LTC and support for caregiving families • Want more direct control over what services we will receive, when we receive them, and who provides them • Boomers will become a critical force to improve chronic care, LTC and caregiving

Values • Policy direction to shift from institutional care towards more HCBS • What most Americans value and want • Depends greatly on family caregivers • Family caregiving has become a personal issue in all sectors of our society • More policymakers than ever before are now providing care to their spouses, parents, other relatives or friends

Members of Congress Are Older 111th Congress (at convening) Average Age House Member 57.0 yrs. Senator 63.1 yrs. Both Houses of Congress 58.2 yrs.

We Need a Different Future • Talk about LTC in a new way • Chronic care and care coordination are components • Set our sights high • Goal: better quality of life and quality of care for people with chronic illnesses and their families. • Keep family caregiving, chronic illness, and long-term care at the forefront as a major health reform and public policy issue

We Need a Different Future • Great need for forward-looking policies and programs • Recognize, respect, assess and address the needs of the family caregiver • Grow the geriatric healthcare workforce • Provide care coordination services and payment mechanisms

One Voice, Many Faces “It will take a movement to join the 3 corners of the care triangle: people who need care, families who care for and about their members, and people who give care for a living.” -- Deborah Stone, The Nation, March 13, 2008.

Promising New Initiatives Eldercare Workforce Alliance • Group of 25 national orgs, joined together to address the immediate and future workforce crisis for an aging America • Strengthen direct-care workers • Ensure competent health and social service providers, and address clinician and faculty shortages • Re-design health care delivery to ensure care coordination • Ensure training and support for family caregivers

Promising New Initiatives National Coalition on Care Coordination [N3C] • Led by the New York Academy of Medicine • Comprised of leading social, health care, family caregiver and professional organizations • Formed to promote better coordinated health and social services for older adults with chronic conditions

Promising New Initiatives “Consumers for Better Care Campaign” • Led by the National Partnership for Women & Families • Consumer action campaign to achieve high quality, coordinated care for vulnerable older adults with chronic illnesses • National consumer coalition • Targeted policy advocacy • Policy analysis • Grassroots mobilization • Caregivers will provide that essential voice! • Message development and communications • Strategic alliances

Proposed Solutions for Better Care of Vulnerable Older Adults and Support for Families Infrastructure • Strengthen geriatric and gerontology competence in the health care workforce • Both health professionals and direct-care workers • training grants, new curricula, training standards • Increase recruitment and retention of geriatric specialists • Financial incentives (e.g., loan forgiveness, scholarships, awards, increased payment for clinical services and faculty)

Proposed Solutions for Better Care of Vulnerable Older Adults and Support for Caregivers Delivery System and Payment Reform • Provide comprehensive geriatric assessment of the older adult’s medical condition, functional status, mental health and cognitive status, including an assessment of the caregiver’s status and needs • Integrate both patients and family caregivers into the interdisciplinary team and develop a total plan of care with regular communication and care consultation • Linking health, mental health and social service systems • Offer proactive linkage of the caregiver to community services, training and supports • Pay for care coordination • among all providers involved with the patient, the patient and the caregiver, and across all settings • Manage transitions of care and pay for transitional care for high risk older adults

Politics and Policy • Care experiences are becoming increasingly shared concerns • We need an urgent conversation in the U.S. about chronic care and the impact on families • In the UK, the government has a National Strategy for Carers • Why not in the U.S.?

Politics and Policy • The voices of older patients and their families have rarely been heard in health policy debates • to achieve the policy goal of a better and more responsive health and LTC system. • Together, WE can make our voices heard! • “If we don’t put family and care of the chronically ill on the health policy agenda, it’s unlikely that somebody is going to do it for us.” (Emily Friedman, Health Policy and Ethics Analyst)

Steps for Effective Advocacy – 5 Ps • Prioritize • Prepare • Not everyone knows the issues • Arm yourself with credible data and research • Hone your message: What is the problem and what are the solutions? • Partnerships • Persistence • Policy windows • What are the opportunities? • Seize the moment. When the time is right, things happen!

The Time Has Come for a Strong Consumer Voice • Mobilize • Tell your story • Advocate • Raise your voices as a strong constituency for positive change!

For More Information The National Center on Caregiving at Family Caregiver Alliance (800) 445-8106 www.caregiver.org

Family Caregiving in an Aging America: A National Perspective