A message from the
National Family Caregivers Association
Encouraging Family Caregivers to Speak Up
January 2009 E-LETTER
TO NFCA ONLINE MEMBERS AND FRIENDS
This month find information on:
Make This the Year You Speak Up!
Value of Family Caregiving Hits $375 Billion
AARP Foundation Helps Families "Prepare to Care"
Teva Neuroscience Launches Spanish Parkinson's Disease Patient and
Caregiver Web Site
Volunteers Needed for Upcoming Clinical Trials and Research Programs
Now Available Online: NFCA's Communicating Effectively With Healthcare Professionals TeleClass
CCAN Volunteers Initiate Family Caregiver Postage Stamp Campaign
Make This the Year You Speak Up!
With the inauguration of a new president who has expressed his commitment to substantive healthcare reform, family caregivers have an opportunity like none before: to make our voice heard as the healthcare reform debate takes shape. The Obama-Biden administration is looking for ideas and feedback as it begins the long process of reshaping America's healthcare system. Let's not miss out on this once-in-a-lifetime opportunity. Go to
http://m1e.net/c?93235626-ULg2IvKMnkPuU%403904006-DqSLCXgzLSLNo to find out how you can be a part of the discussion.
Value of Family Caregiving Hits $375 Billion
The economic value of family caregiving in the U.S. reached $375 billion in 2007, according to a new report by AARP's Public Policy Institute. The report finds that in 2007, the value of family caregiving was 7 percent higher than the estimated value of $350 billion in 2006. "Valuing the Invaluable, The Economic Value of Family Caregiving, 2008 Update" also estimates that 34 million Americans provide more than 20 hours of care per week to another adult, making family caregiving a cornerstone of U.S. health and long-term care.
The AARP report notes that family caregivers of those 50 and older spent an average of $5,531 out-of-pocket in 2007 to care for their loved ones. That spending was often coupled with lost workdays, wages, health insurance and retirement savings. The AARP report makes several recommendations to assist family caregivers, including adopting "family-friendly" workplace policies; assessing caregivers' needs and providing them with needed supports; expanding funding for the National Family Caregiver Support Program and the Lifespan Respite Care Act; and supporting family caregivers in chronic care coordination programs and care transitions.
The full report is available at:
http://m1e.net/c?93235626-/8Kp6NkmZZX7E%403904007-XoBncaPQPy8bgAARP Foundation Helps Families "Prepare to Care"
The AARP Foundation has a publication called "Prepare to Care: A Planning Guide for Families" that provides helpful advice on everything from creating a caregiving plan to finding and obtaining basic resources. Whether you have just begun caregiving or you have been a family caregiver for years, you will find the publication's many checklists straightforward and useful. To download your copy of "Prepare to Care," go to
www.aarp.org/foundation/preparetocare.
Teva Neuroscience Launches Spanish Parkinson's Disease Patient and Caregiver Web Site
Teva Neuroscience, Inc. has launched a Spanish version of their patient and caregiver resource Web site to provide important information and resources to members of the Hispanic community, living in the U.S., who are affected by Parkinson's disease (PD), an age-related degenerative disorder of the brain.
The Spanish Web site is a comprehensive resource that provides important information to help patients and families with the physical and emotional effects of PD. Spanish-speaking visitors will be able to access a wide range of information and resources, including: basic disease information and treatment options; signs and symptoms of the disease; tips on living well through a combination of treatment, activities, and support; downloadable worksheets and links to various other resources; and caregiver information. Visitors will also have access to a downloadable version of the recently released "Hacia adelante" resource guide. The easy-to-use guide is a useful tool that helps people affected by PD understand more about the disease, learn how to live well despite the diagnosis, and research various treatment options. Go to:
www.azilect.com/espanol.
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Upcoming Clinical Trials and Research Programs
The following information is provided as a public service. NFCA has no connection to the clinical trials and research programs publicized below and no endorsement is implied.
Worldwide Parkinson's Disease Trial Seeks Participants
Worldwide, a team of researchers is evaluating an investigational medicine for the changes in thought, behavior, and judgment that can occur with Parkinson's disease. About 280 people will participate in this study at approximately 65 research centers around the world. Participants will be asked to make seven visits to the study center. It is possible that at the end of the initial treatment period, participants may have the opportunity to receive extended treatment with the active investigational drug. The clinical study is now enrolling qualified participants. To learn more, please visit
www.ParkinsonsBodyMind.com or call 866/565-0262 today.
Global Multiple Sclerosis Trial: Volunteers Needed
While great progress has been made toward developing treatments for people living with MS, a need still exists for more effective treatments that may slow the progression of the disease. Researchers currently are seeking adults who are living with relapsing-remitting multiple sclerosis (RRMS) to participate in two global clinical research studies: CARE-MSSM I for adults 18-50 who have not yet begun therapy for MS other than corticosteroid treatment, and CARE-MSSM II for adults 18-55 who have experienced relapses (flare-ups) on an approved therapy to treat MS. The CARE-MS studies are designed to determine the safety and effectiveness of alemtuzumab, the investigational drug, as compared to Rebif® (interferon beta-1a), a current FDA-approved treatment. All study-required medications and procedures are provided at no cost. To learn more, call 866/790-MS-CARE (U.S. only) or visit
www.CARE-MS.com.
Caregivers Wanted for Online Support Program for Stroke Families
Kent State University is conducting an NIH-funded research program designed to help female caregivers and male stroke survivors who face difficult challenges following a stroke. In this program, family caregivers will get online access to critical support, information, and education that will help to facilitate the stroke survivor's physical and emotional recovery and reduce the family caregiver's feelings of strain or burden. The program is especially targeted to caregivers and stroke survivors who feel depressed or anxious. All couples who participate will receive cash incentives up to $140. Couples must have their own computer and Internet service provider if they reside outside of Ohio. For more information, call 866/300-6657.
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NFCA's Communicating Effectively TeleClass Available on the Web
Thanks to everyone who helped make NFCA's two-part TeleClass a huge success. If you were unable to participate during the live presentations, it's not too late to learn from them now. Both presentations have been archived and are available on NFCA's Web site.
The classes were designed to educate family caregivers on how to communicate more effectively with healthcare professionals. Learn how to: understand your role on your loved one's healthcare team; prepare for doctor office visits; develop strategies to establish rapport/collaborate with your loved one's healthcare providers; compose assertive messages for communicating in healthcare situations; and be prepared for and cope with an emergency room visit.
Don't miss out on this wonderful educational opportunity. Go to
www.thefamilycaregiver.org and click on "Listen to Our Communicating Effectively Teleclass Programs."
NFCA is very grateful to Medtronic Foundation, Forest Laboratories, Inc., and Novartis Pharmaceuticals Corporation for their support of this educational program. Additional support was provided by Intel's Digital Health Group, AGIS, Eisai Inc., Evercare, and MetLife Foundation.
CCAN Volunteers Initiate Family Caregiver Postage Stamp Campaign
NFCA's CCAN state volunteers want to see the United States honor our approximately 52 million family caregivers with a U.S. Family Caregiver Postage Stamp. To that end, Virginia CCAN Representative Terry Vasquez, who is spearheading the initiative, and other CCAN volunteers are collecting thousands of signatures to send directly to the Citizen Stamp Advisory Committee of the U.S. Postal Service. And they need your help.
Visit NFCA's Web site at
www.thefamilycaregiver.org and click on the U.S. Postage Stamp button on our home page to submit a letter to the Citizen Stamp Advisory Committee. On behalf of all family caregivers, we thank you in advance for your support of this effort.
Happy New Year!
We wish you and your family a healthy and peaceful 2009. Make this the year you Speak Up for your loved one AND yourself.
PLEASE FORWARD THIS E-LETTER ALONG TO YOUR FAMILIES AND FRIENDS and ENCOURAGE ALL THE FAMILY CAREGIVERS YOU KNOW TO JOIN THE NFCA COMMUNITY OF CAREGIVERS. THERE IS NO COST! Just click here:
www.thefamilycaregiver.org------------------------------
Lifelines: The Brain Injury Support Group
