A message from the
National Family Caregivers Association
Encouraging Family Caregivers to Speak Up
July 2009 E-LETTER
TO NFCA ONLINE MEMBERS AND FRIENDS


This month find information on:

Make This the Month You Speak Up for Comprehensive Healthcare Reform

Enabling Personalized Care and Patient Engagement

Participate in an Online Conversation About Caregiving

Mark Your Calendar: Funding Solutions for Senior Living and Care

Volunteers Needed for Research Programs

Important News About the Summer Issue of TAKE CARE!


Make This the Month You Speak Up for Comprehensive Healthcare Reform

NOW is the time for all family caregivers to Speak Up for healthcare reform that truly meets the needs of individuals with chronic illnesses and conditions and those who care for them. A two-day national call-in period has been established to allow family caregivers and others to tell our elected officials that America’s patients must be protected from high medical costs.

Family caregivers often provide care and comfort recognized by health plans or Medicare. Clear instructions on a care program, including coordination among healthcare providers, can help ensure that bad medical conditions don't get worse. Adherence to a care program can save money and lives. It’s time to tell Congress to: Include family caregivers as part of the healthcare team; include clear instructions and adherence programs as part of ongoing care and prevention; and include protection for patients against high out-of-pocket costs by capping health expenses and having caps include pharmaceuticals.

The national call-in period is July 7 and July 8. The number to call is 866/210-3678. Don’t miss this opportunity to have your voice heard.

Enabling Personalized Care and Patient Engagement

NFCA is excited that Intel’s Digital Health Group has become a Founding Partner in our Corporate Leadership Council because Intel understands how important it is for caregiving families to have access to well-coordinated chronic illness care and seamless transitions between personnel and settings. As a technology innovator, Intel is committed to finding innovative ways to support caregiving families and developing new technologies that will help improve patient care and safety, reduce healthcare costs, and enhance quality of life across the continuum of care.

With people living longer, we are witnessing a dramatic rise in the number of people with chronic conditions. The nation’s 50 million family caregivers know all too well that the process of caring for a loved one takes both an emotional and physical toll. More tools and better support systems that help improve lines of communication between all members of the care team and patients are critical to helping deliver the best care possible.

An example of Intel’s commitment to designing solutions to help support a shift in current healthcare delivery models for individuals with chronic conditions is the Intel® Health Guide. The Intel Health Guide is a comprehensive personal health system that combines an in-home patient device with an online interface that allows nurses and physicians to monitor and remotely manage care. Patients are empowered to engage in a more active role in their own care, and the Intel Health Guide enables more informed and personalized care, which may lead to better patient satisfaction. Remote patient monitoring systems have been available for many years as part of the VA’s chronic care coordination program. Now those of us outside the VA system will be able to reap the benefits of this approach that has been shown to help improve care and reduce costs. More information can be found at www.intel.com/healthcare.

Participate in an Online Conversation About Caregiving

NFCA members are invited to participate in a unique online conversation on caregiving with Feminism2.0 (www.fem2pt0.com), an online group for all women interested in better policy for women, families and society.

On July 13, Fem2.0 is focusing on caregiving — not just family caregiving, but on all of the caregiving women do in their lives. The primary question to be discussed is, “How can caregiving be made easier to make our lives easier?”

Fem2.0 is looking to NFCA members to share your insights, comments, and personal stories about family caregiving in two ways: First, any time before July 13, either write a short piece, or, if you have a blog about family caregiving, send the link to info@fem2pt0.com and put “caregiving” in the subject line. They will include the link or your article in their Blog Carnival. Then on Monday, July 13, at 10 p.m. Eastern time, everyone is invited to participate in the “Women and Caregiving” Twittercast. To join a Twittercast, simply use your Twitter account (sign up for one at www.twitter.com) and log onto Tweetchat at www.tweetchat.com; then follow “@fem2.” Much like a chat room, you will see all the messages from Twitter that are on “@fem2” and you can join the conversation by typing in the box on the top. While you are on Twitter, be sure to “follow” NFCA at http://twitter.com/NFCAcaregivers.

Mark Your Calendar: Funding Solutions for Senior Living and Care

The National Family Caregivers Association and SNAPforSeniors invite you to attend a FREE 30-minute online webinar for older Americans and their family caregivers on Wednesday, July 15, at 11 a.m. Pacific time/2 p.m. Eastern time. The webinar will feature two national experts in the field of financing options for senior housing and care: Elias Papasavvas, founder and CEO of Elderlife Financial Services, and Chris Orestis, president of Life Care Funding Group.

Participants will: Gain an understanding of a senior living line of credit, learn about life insurance settlements, and understand the criteria for eligibility. Participants will also receive the “Silver Tsunami” White Paper, a 13-page study examining statistical information outlining economic and social factors that will impact those born between 1939 and 1964, and a free, no obligation consultation with Life Care Funding Group.

To register, go to https://www1.gotomeeting.com/register/994533577. Questions? Contact Karen Beaudry at 206/575-0728 ext. 2013 or e-mail karen.beaudry@snapforseniors.com.

Upcoming Research Programs

The following information is provided as a public service. NFCA has no connection to the research programs publicized below and no endorsement is implied.

Do You Want to Tell Your Healthcare Story?

The University of Michigan Center for Managing Chronic Disease and Advocacy for Patients with Chronic Illness, Inc. have been awarded a grant by the National Institutes of Health (NIH) to study the obstacles facing the chronically ill and their family caregivers; interventions that do and do not work to surmount those obstacles; and ways in which the work done by the NIH, including research and clinical trials, may be helpful to patients with chronic illnesses and their caregivers. With the help of 12 patients and family caregivers, a survey has been developed that can be taken online at http://chronicdisease.survey.sgizmo.com.
If you are a family caregiver of a person with a chronic illness such as Crohn's disease, epilepsy, rheumatoid arthritis, fibromyalgia, multiple sclerosis, immune deficiency, or another chronic illness and you are at least 18 years old, you are encouraged to take the survey. If you are unable to take the survey online, if you would prefer to be interviewed by telephone, or if you have questions about the research, contact Shelley Stoll at 734/764-7136. She will answer your questions, provide more details about the study, and arrange for an interviewer to call you to schedule a telephone interview at a time that’s convenient for you.

Attention Female Family Caregivers of Stroke Survivors

The Loyola University Chicago School of Nursing is seeking female family caregivers to participate in a study investigating stress and coping related to caregiving. If you are a female over the age of 18 with the ability to speak, read, and write English and caring for a family member who has experienced a stroke within the past three to 12 months, you may be eligible to participate in this study. The study entails completion of written questionnaires and collection of saliva samples to measure a stress hormone. Interested participants will be mailed study materials and will return materials in a provided postage-paid packet. Participants will be compensated for their time. For more information, please contact Dr. Karen Saban at 708/216-1244.

Important News About the Summer Issue of TAKE CARE!

As you have probably heard by now, today’s economy is hurting NFCA, just as it is hurting many of you. One of our greatest expenses is the printing and mailing of TAKE CARE! four times per year. We deeply regret that we will not be able to print and mail our summer issue; however, it will be available online at www.thefamilycaregiver.org.

We understand that many of our members don’t have access to the Internet. If you know someone who will be unable to access our summer issue online, please consider printing it out and sharing it with them. If you would like to make a donation to NFCA to help us continue printing and mailing this valuable member resource, please go to www.thefamilycaregiver.org. No amount is too small and all donations will be gratefully accepted

For more information on how care giver assistance, elder monitoring and other aging related questions and concerns, visit Covenant Senior Resources, geriatric care management.