1 The Role of Caregivers in Advocacy Stephen McConnell, PhD Vice President Advocacy and Public Policy 2 nd National Conference for Caregiving Coalitions March 26, 2008

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3 Advocacy Can Make a Difference

4 Current Political Environment ChallengesOpportunities

5 Targets of Advocacy Family caregiver support programs Lifespan respite Medicaid Health Reform Entitlement reform Social Security reform Civic engagement

6 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 people’s lives

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8 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.]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.

9 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!

10 Why Caregivers Don’t Matter Enough Many don’t 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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12 Advocacy as “ therapy ” Former First Lady Barbara Bush Actress Angie Dickenson Actress Shelley Fabares

13 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

14 Federal Funding For Alzheimer Research Fiscal Years (in millions of dollars) 2008 Estimate based on Consolidated Omnibus Appropriations Act of 2008, Public Law No estimate based on President’s Budget submitted 02/04/2008.

15 From , Alzheimer’s Disease Deaths Increased 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.

16 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

17 Lobbying Sen. Specter

18 U.S. Senate Appropriations Committee Hearing

19 Unusual Suspects Can Have Big Impact Walter Dawson, Barney and Mom in 1993 Walter Dawson today

20 Bill Gold Alzheimer Caregiver (1991)

21 Public Awareness and Concern

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23 Alzheimer’s “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

24 Caregivers and NIH Funding Rep. John Porter Lou and Gay Lynne Gagnon, 1995

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26 WE NEED YOU!!