Family Caregiving in an Aging America: A National Perspective

1
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

2
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

3

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

4
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

5
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

6
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

7
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 dont 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

8
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 pbetter. Source Ho, et al. (Aug 2005). A Look at
Working-Age Caregivers Role, Health Concerns and
Need for Support. The Commonwealth Fund.
9
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

10
Converging Issues The Perfect Storm

• Economics
• Demographics
• Values

11
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)

12
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

13
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

14
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

15
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

16
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.

17
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

18
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

19
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.

20
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

21
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

22
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

23
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)

24
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 adults medical condition, functional
  status, mental health and cognitive status,
  including an assessment of the caregivers 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

25
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.?

26
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 dont put family and care of the
  chronically ill on the health policy agenda, its
  unlikely that somebody is going to do it for us.
  
• (Emily Friedman, Health Policy and Ethics
  Analyst)

27
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!

28
The Time Has Come for a Strong Consumer Voice

• Mobilize
• Tell your story
• Advocate
• Raise your voices as a strong constituency for
  positive change!

29

• For More Information
• The National Center on Caregiving
• at
• Family Caregiver Alliance
• [phone]
• www.caregiver.org