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|A Newsletter of FCA's National Center on Caregiving|
January 12, 2011
Volume XI, Number 1
NOT BUSINESS AS USUAL ______________________________________________________________________________________________________________
A recent blog post entitled, "Can Good Care Produce Bad Health?" by Amy Berman, RN, Program Officer of the John A. Hartford Foundation, revealed her recent diagnosis of Stage IV inflammatory breast cancer and her journey through the health care system for advice and counsel on treatment options. Her story stands as witness to the need for the health care system to make the commitment to patient-centered care. We thank Amy for reminding all of us of why health care needs to focus on the values and preferences of patients and their families when choosing options for care. For the blog posting:
John A. Hartford Foundation
_______________________________________________________________________________________________________________IN THIS ISSUE
State Legislation, Policy & Reports
- Reports Give Picture Of Ongoing State Budget Deficits More...
Federal Legislation, Policy & Reports
Research Reports & Journal Articles
- Vice President Biden's Caregiver Initiative Not Funded Under Continuing Resolution More...
- National Alzheimer's Project Act Signed Into Law More...
Conferences & Trainings
- Study Indicates That APOE4 Gene May Play Role In Alzheimer's More...
- Technologies Survey What Caregivers Want More..
- 2011 Aging In America Conference, San Francisco, California More...
- 2011 Alzheimer's Association International Conference, Paris, France More...
Funding, Media & Miscellaneous
- Family Caregiver Alliance Announces Awardees of the 2010 Rosalinde Gilbert Awards More...
- As Couples Age, Living Apart May Become Necessary More...
- Smartphone Apps Track Your Medications, Medical Record Info And Beyond More...
- Science Provides Innovations In Care For People With Alzheimer's More...
- Oregon Center Of Applied Science Seeks Caregiver Participates To Test Resource Website More...
1. Reports Give Picture Of Ongoing State Budget Deficits
State legislatures also took a holiday the last two weeks of December so we thought it would be helpful to round up the reports of note regarding the topic most pressing to states: ongoing budget deficits. 2011 looks to be a year of serious policy discussions regarding funding of key health and human services programs and potential state government reorganization.
In setting the context for the upcoming budget and priority setting discussions in the current fiscal year, we point you to three studies released recently that form a broad picture of funding for services at the state and local levels:
States Continue to Feel Recession's Impact, December 16, 2010 by the Center on Budget and Policy Priorities. A review of state budget shortfalls in 2010, 2011 and 2012, cuts made to services to vulnerable populations and federal initiatives to support states.
Center On Budget & Policy Prioities
The Fiscal Survey of the States, Fall 2010, National Governor's Association, National Association of State Budget Officers. Detailed analysis state by state of budgets with specific programs cut or reduced at the following link:
Local Governments Cutting Jobs and Services, July 2010, National League of Cities, National Association of Counties, The United States Conference of Mayors. Survey of counties and cities regarding personnel cuts by service area at the following link:
For specific information about how state budgets have affected long term services and support, there is a video presentation and power point slides of a presentation of preliminary results of a study entitled, "Weathering the Storm: The Impact of the Great Recession on Long Term Services and Supports" made at the HCBS conference in October 2010 by Susan Reinhard, Senior Vice President, Public Policy Institute, AARP. The study was a jointly authored by Susan Reinhard, Senior Vice President, AARP Public Policy Institute, Martha Roherty, Executive Director, National Association of States United for Aging and Disabilities (NASUAD), and Kathy Gifford, Principal, Health Management Associates. To see the video and slides, visit:
1-Vice-President Biden's Caregiver Initiative Not Funded Under Continuing Resolution|
On December 21, 2010, Congress approved a continuing resolution budget bill that will fund the Federal government until March, 2011 but negatively impacts family caregivers. In July 2010, the Senate Appropriations Committee approved a spending bill for the departments of Labor, Health, and Human Services. The bill provided much-needed additional support for family caregivers as part of Vice President Biden's Caregiver Initiative that allocated an additional $104.5 million to support family caregivers.The additional funding was projected to provide an additional 1 million more hours of adult day-care,1.3 million more hours of personal care assistance, and 3 million more hours of respite care. In addition, $10 million was allocated to the Department of Labor to provide grants to states to help them implement paid leave programs that could support employees who are also caregivers. The full Senate never voted on this legislation, and the spending bill that was passed provided funding for Fiscal Year 2011 at Fiscal Year 2010 levels. For more information, visit:
2-National Alzheimer's Project Act Signed Into Law
The National Alzheimer's Project Act (NAPA) passed this month with Congress making a positive commitment to recognize the devastating long-term effects and costs of Alzheimer's disease. Approximately 5.3 million Americans now have Alzheimer's and that number is expected to grow exponentially by 2050. The cost of that care is estimated to be $800 billion a year by 2050, more than the U.S. military budget. The goal of NAPA is to facilitate the development of treatments that would prevent, cure or treat effectively those on the course of Alzheimer's - through an aggressive approach similar to the one taken for cancer research and AIDS. The NAPA project will create federal agencies to provide various representations through advisory councils. For example, the Centers for Disease Control and Prevention, the National Institutes of Health, the Department of Veterans Affairs, the Food and Drug Administration, the Indian Health Service and the Centers for Medicare and Medicaid Services will be involved in the advisory councils. These councils will also include the science and research communities, health care providers and those who care for a family member with Alzheimer's. Caregivers are an integral part of the development of a national plan to treat Alzheimer's. The project will be coordinated through the Department of Health and Human Services. While the Act doesn't provide funding at the present time, it is hoped that funding will become one of the next coordinated steps. One of the many tasks on the advisory council's list is to draft a report analyzing all current federally financed programs involving research, treatment, nursing homes, or home-care, to decide which of these programs will be integrated into NAPA or be eliminated. For more information, visit:
1-Study Indicates That APOE4 Gene May Play Role In Alzheimer's
A study in the December 15 issue of Journal of Neuroscience suggests that that the APOE4 gene, a major risk factor for Alzheimer's disease, alters connections in the brain before amyloid plaque accumulates. The clinical implication of finding connectivity changes in the brain prior to amyloid accumulating is that it may offer more time to intervene before signs of dementia. Lead researcher Dr. Yvette Sheline, of the Knight Alzheimer's Disease Research Center at Washington University in St. Louis, Missouri, said, "We believe that from the time plaques begin to form, there is an average of a decade before a person develops dementia. Upon this evidence, changes in brain connections begin even earlier, so there may be an even longer "therapeutic window." After the amyloid plaques form, it may be too late to stop cognitive decline. The study included 100 community-dwelling older adults who did not have cognitive impairment and were participating in long-term studies of memory and aging at their center. Thirty-eight of the participants carried the APOE4 gene while 62 did not. Based on MRI's, the 38 participants with the APOE4 gene had significantly different functional connections of the precuneus (part of the superior parietal lobule hidden in the medial longitudinal fissure between the two cerebral hemispheres) to several regions previously defined as having abnormal connectivity in Alzheimer's disease. Dr. Gustovo C. Roman, MD, Medical Director of the Alzheimer's & Dementia Center at the Methodist Neurological Institute in Houston, Texas, explained two significant parts of the research included the ability to diagnose dementia earlier (through MRI's), and the shift of research focus beyond amyloid plaque. For more information, visit: Medscape News or JON
Journal Of Neuroscience
2-Technologies Survey What Caregivers Want
The National Alliance for Caregiving and UnitedHealthcare released the results of a survey of caregivers about their interest in using technology to support their caregiving roles. The survey included 1,000 participants who provided at least five hours of care a week and already use technology. The three most popular technologies among survey respondents included: (1) Personal health record tracking system for tracking medications or testing; (2) Caregiving coordination system to log a care recipient's medical appointments or for scheduling family members or volunteer's time; and (3) Medication support system, a device to remind patients to take medications and provide helpful information about possible side effects. For more information, visit:
1-2011 Annual Conference Of The American Society On Aging In San Francisco, California|
The Family Caregiver Alliance and National Center on Caregiving will host the following sessions:
Wednesday April 27, 8:00 am - 9:30 am
National Technical Assistance Centers for Caregiving and Respite: Creating Learning Communities
Wednesday April 27, 1:30 pm - 3:00 pm
Caregivers Are Partners In Care: Shifting the Paradigm Towards Consumer and Family Centered Care
The above sessions are held at: The Hilton San Francisco Union Square Hotel
333 O'Farrell Street, San Francisco, CA 94102
2011 Aging in America
2-2011 Alzheimer's Association International Conference July 16-21
The 2011 Alzheimer's Association International Conference will take place in Paris France from July 16-21. The theme this year is "Science is an art." Registration begins in February 2011. For more information, please visit:
Alzheimer's Association International
1-Family Caregiver Alliance Announces Awardees of the 2010 Rosalinde Gilbert Innovations In Alzheimer's Disease Caregiving Legacy Award|
Four exceptional programs from California, New York, North Carolina and Washington are this year's recipients of the Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards. The awarded programs are administrated by the following organizations: Songwriting Works Educational Foundation, Alzheimer's Association California Southland Chapter, Alzheimer's Foundation of America, and Mountain Projects, Inc. Organized by the National Center on Caregiving at Family Caregiver Alliance and sponsored by The Rosalinde and Arthur Gilbert Foundation, this year marks the conclusion of the third year of the Awards to recognize excellence in Alzheimer's care and caregiver support in three categories: Creative Expression; Diverse & Multicultural Communities; and Policy & Advocacy. The programs are awarded $20,000 each and will be honored at Aging in America, the Annual Conference of the American Society on Aging in San Francisco on April 28, 2011 from 5:30-7:30 pm. The programs will also participate in a panel discussion/workshop on the morning of April 28th. For more information, visit:
Family Caregiver Alliance
2011 Aging in America
2-As Couples Age, Living Apart May Become Necessary
A recent story from The New Old Age Blog (New York Times) profiles a couple faced with unimagined separation because of their differing level of decline. A professor and his wife who has Parkinson's disease moved into an assisted living facility where they could receive better care. The wife developed intensifying dementia, requiring more personal care than the assisted living facility could provide, and at age 85, his wife moved to another nearby facility better equipped to deliver the level of care she needed. The professor stayed behind at the assisted living facility, and at age 87, is living alone for the first time in 55 years. He travels each day to visit her using public transportation and they have lunch, go for walks, and have conversations with each other. "These are the hardest kind of situations we deal with," said Emily Saltz, a geriatric Care Manager at Elder Resources near Boston. The healthier partner may become the caregiver risking their own health under the stress and strain. Another alternative is a continuing care retirement community (C.C.R.C.) where residents have differing levels of personal care available and where residents can move to a higher level of care as needed. Ms. Saltz referenced a couple who had moved into separate wings in a C.C.R.C. in Massachusetts. The wife lived in the nursing home wing while the husband lived in independent living. "She gets a lot of hands-on assistance; he gets somewhat of a life." She also said, "They're together everyday," acknowledging it as a "bittersweet" solution. However, C.C.R.C.'s can reject these arrangements by rejecting applicants with serious health problems because it isn't financially feasible to offer lifetime care if residents need help very soon after moving in. For more information, visit:
The New Old Age Blog, New York Times
3-Smartphone Apps Track Your Medications, Medical Record Info And Beyond
A recent article in The Wall Street Journal highlighted electronic devises such as the Smartphone that can make caregiving burdens easier. Apple, Inc.'s iPhone leads in terms of quality health-related applications with 7,136 in September, up 67% from February. These apps are designed to calm stress and confusion when juggling a loved-one's health care issues by tracking medication dosages, nutritional requirements, therapies, allergies, tests, medical record information or searching for journal items such as about foods, side effects or drug reactions. There are several ways to find which apps are safer, including consulting with your doctor or reading app reviews on reputable websites such as the Mayo Clinic, Harvard Medical School and John Hopkins School of Medicine. The Wall Street Journal lists four apps caregivers may want to consider: (1) Tell My Geo for the Android ($9.995/per month), (2) Personal Caregiver for iPhone (free unless you purchase the premium edition), (3) Pain Care for the iPhone and Android (Free), and (4) iBiomed for either the iPhone or iPod Touch (free) developed by a doctor and his wife to juggle the volume of information needed in caring for their own special-needs children with autism. This app also provides an online forum as a way to share stories with other caregivers. For more information, visit:
The Wall Street Journal
4-Science Provides Innovations In Care For People With Alzheimer's
A recent article in the New York Times highlighted innovative ways to personalize approaches to providing care for dementia patients. In one facility, breaking nursing home rules to provide individualized care is no longer beyond the scope. There is no cure for Alzheimer's or an effective medical treatment and Alzheimer's presently affects 5.3 million people, but that number increases when caregivers are included. The National Institute on Aging and the Administration on Aging are now financing caregiving studies on "things that just kind of make the life of an Alzheimer's patient and his or her caregiver less burdensome," said Sidney M. Stahl, Chief of the Individual Behavioral Processes branch of the Institute on Aging. Other programs use favorite foods, art, poetry, music or exercise, to help patients move toward a more positive attitude and to maintain higher functional areas of their healthy brain. Beatitudes Nursing Home in Phoenix, Arizona treats difficult, combative or agitated residents with chocolate, discovering it can promote soothing emotional experiences. Margaret Nance had been kicked out of several nursing homes because of her combative nature. At Beatitudes, they let her dine or bathe when she wants, even at 2 a.m. She can eat unlimited amounts of chocolate or feed and caress a baby doll for a calming effect. Tena Alonzo Director of Research at Beatitudes said, "Whatever your vice is, we're your folks. The state tried to cite us for having chocolate on the nursing chart." The state said, "It's not a medication." Alonzo's reply, "Yes, it is. It's better than Xanax." Unusual treatment to consider the person behind the dementia, but Beatitudes is following the latest science. This article is from a series called, "The Vanishing Mind." For more information, visit:
The New York Times
1-Oregon Center Of Applied Science Seeks Caregiver Participants To Test Resource Website|
The Oregon Center for Applied Science, Inc. is designing a new website to support families and friends of seniors with heart failure. The website offers tips about daily weighing, when to call the doctor, eating less salt and asking for help.
To join the study, you must be caring for a loved one who is 65 years or older and has heart failure. You also need an email address and access to a computer with a high-speed Internet connection. Those who qualify will earn $50 for visiting the website and completing two online surveys.
This research is being conducted by the Oregon Center for Applied Science with funding from the National Institute on Aging. All names are kept confidential. There are no sales or mailing lists involved. For more information, contact: email@example.com or call 1(866)730-3211 ext 3
Oregon Center Of Applied Science
|To find caregiver support services in your state, visit FCA's Family Care Navigator http://caregiver.org/caregiver/jsp/fcn_content_node.jsp?nodeid=2083|
?2011 Family Caregiver Alliance. All rights reserved.
The National Center on Caregiving at Family Caregiver Alliance works to advance the development of high-quality and cost-effective policies and programs for caregivers in every state in the country. The National Center is a central source of information and technical assistance on family caregiving for policymakers, health and service providers, program developers, funders, media and families. For questions or further information about the National Center on Caregiving, contact Policy_Digest@caregiver.org or visit the Family Caregiver Alliance website at www.caregiver.org.
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