The Role of Caregivers in Advocacy

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The Role of Caregivers in Advocacy

• Stephen McConnell, PhD
• Vice President
• Advocacy and Public Policy
• 2nd National Conference for Caregiving Coalitions
• March 26, 2008

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Advocacy Can Make a Difference
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Current Political Environment
Challenges
Opportunities
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Targets of Advocacy

• Family caregiver support programs
• Lifespan respite
• Medicaid
• Health Reform
• Entitlement reform
• Social Security reform
• Civic engagement

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What is Advocacy?

• Advocacy means giving voice to a cause.
• It is also a way to leverage resources for
  greater impact.
• It can be scary and empowering at the same time
• It can make a difference in peoples lives

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• Nov. 5, 1994
• My Fellow Americans,
• I have recently been told that I am one of the
  Americans who will be afflicted with Alzheimer's
  Disease.
• In opening our hearts, we hope this might promote
  greater awareness of this condition. Perhaps it
  will encourage a clearer understanding of the
  individuals and families who are affected by it.
• Upon learning this news, Nancy I had to decide
  whether as private citizens we would keep this a
  private matter or whether we would make this news
  known in a public way.
• In the past Nancy suffered from breast cancer and
  I had my cancer surgeries. We found through our
  open disclosures we were able to raise public
  awareness. We were happy that as a result many
  more people underwent testing. They were treated
  in early stages and able to return to normal,
  healthy lives.
• So now, we feel it is important to share it with
  you. In opening our hearts, we hope this might
  promote greater awareness of this condition.
  Perhaps it will encourage a clearer understanding
  of the individuals and families who are affected
  by it.
• At the moment I feel just fine. I intend to live
  the remainder of the years God gives me on this
  earth doing the things I have always done. I will
  continue to share life's journey with my beloved
  Nancy and my family. I plan to enjoy the great
  outdoors and stay in touch with my friends and
  supporters.
• Unfortunately, as Alzheimer's Disease progresses,
  the family often bears a heavy burden. I only
  wish there was some way I could spare Nancy from
  this painful experience. When the time comes I am
  confident that with your help she will face it
  with faith and courage.
• In closing let me thank you, the American people
  for giving me the great honor of allowing me to
  serve as your President. When the Lord calls me
  home, (sic) whenever that may be I will face it
  with the greatest love for this country of ours
  and eternal optimism for its future.
• I now begin the journey that will lead me into
  the sunset of my life. I know that for America
  there will always be a bright dawn ahead.
• Thank you, my friends. May God always bless you.
• Sincerely,
• Ronald Reagan
• The above letter is reproduced exactly as
  written and was obtained through the archives at
  the Ronald W. Reagan Presidential Library
  Museum.

In opening our hearts, we hope this might promote
greater awareness of this condition. Perhaps it
will encourage a clearer understanding of the
individuals and families who are affected by it.
Unfortunately, as Alzheimer's Disease progresses,
the family often bears a heavy burden. I only
wish there was some way I could spare Nancy from
this painful experience. When the time comes I am
confident that with your help she will face it
with faith and courage.
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Why Caregivers Matter

• Many are baby boomer women
• They vote
• They have a compelling story to tell
• They represent key American family values
• They have valuable knowledge to share
• There are a lot of us!

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Why Caregivers Dont Matter Enough

• Many dont identify with the label
• Caregiving limits available time
• Many have not translated story to political
  message
• They have not mobilized their other membership
  organizations
• They are too nice

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Advocacy as therapy
Actress Angie Dickenson
Former First Lady Barbara Bush
Actress Shelley Fabares
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How Advocacy Adds Value

• Leverages resources
• Creates partnerships
• Improves healthcare and services
• Builds energy and excitement
• Provides constructive outlet for anger and
  frustration
• Increases organizational visibility, influence
  and reach

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Federal Funding For Alzheimer ResearchFiscal
Years 1990-2009 (in millions of dollars)
2008 Estimate based on Consolidated Omnibus
Appropriations Act of 2008, Public Law No.
110-161. 2009 estimate based on Presidents
Budget submitted 02/04/2008.
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From 2000-2005, Alzheimers Disease
DeathsIncreased 44.7 while
Deaths by Heart Disease - declined 8.6 Breast
Cancer - declined .8 Prostate Cancer - declined
4.9 Stroke - declined 14.4
Source U.S. Centers for Disease Control and
Prevention, National Center for Health
Statistics, Mortality Data From the National
Vital Statistics System.
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Types of Advocacy

• Legislative federal or state, e.g. new Medicare
  drug benefit or research funding
• Administrative government agencies, e.g. FDA to
  secure faster drug review
• Private Sector business, care providers, e.g.
  quality residential care
• Public Awareness telling your story to the
  media

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Lobbying Sen. Specter
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U.S. Senate Appropriations Committee Hearing
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Unusual Suspects Can Have Big Impact
Walter Dawson, Barney and Mom in 1993
Walter Dawson today
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Bill Gold Alzheimer Caregiver (1991)
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Public Awareness and Concern
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• Alzheimers Patient/Caregiver Advisors
• Provide input on risks and benefits
• Help decide what treatments would be most
  beneficial
• Bring the voice of families to the drug review
  process

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Caregivers and NIH Funding
Rep. John Porter
Lou and Gay Lynne Gagnon, 1995
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WE NEED YOU!!