Transcript Lynn Feinberg - National Alliance for Caregiving

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
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, homebased 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
–

Set our sights high
–

Chronic care and care coordination are
components
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
–


Offer proactive linkage of the caregiver to community services, training
and supports
Pay for care coordination
–

Linking health, mental health and social service systems
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