|Volume III, Number 6|
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The Association for Frontotemporal Degeneration
The Association for Frontotemporal Degeneration (AFTD) in Radnor, PA is the place to turn for accurate information, compassion and hope when lives are touched by the disease. Founded (as the Association for Frontotemporal Dementias) in 2002, the organization is the product of a caregiver's experience and collaborations with scientists, physicians and other caregivers who understood the need for increased attention to the disease process. Frontotemporal degeneration (FTD) affects the frontal and temporal lobes of the brain. It causes a group of brain disorders that are characterized by behavior, language and/or motor symptoms, and an inevitable deterioration in a person's ability to function. Clinical diagnoses include behavioral variant FTD, primary progressive aphasia, and the movement disorders progressive supranuclear palsy and corticobasal degeneration. These clinical conditions are typically caused by a form of frontotemporal lobar degeneration pathology, although the conditions also may also be caused by unusual presentations of Alzheimer's disease.
In addition to advocating for better long-term health care and social services and providing other services,AFTD released It Is What It Is, a short film which interweaves the stories of four families and the impact FTD has had on their lives. Angie Maher, Communications & Marketing Manager of AFTD, recently responded to questions about the Association, its programs and services: [Read more]
Upcoming Events - 2012
Call for Papers for the 8th International Short Break Association Respite Conference: Due Feb. 28, 2012
The 8th International Respite Conference, sponsored by ARCH, will be at Le Meridien King Edward Hotel in Toronto, Ontario, Canada, October 10-12, 2012. Respond to the Call for Papers at www.isba2012.net. ARCH which supports the effort, is a member of the International Short Break Association, and serves on the conference planning committee.
The Stanford Geriatric Education Center, in conjunction with the American Geriatrics Society and other organizations, is providing a Webinar Series: Applying Best Practices to Diverse Older Adults. The first webinar, Delirium: Assessment and Management, will be held on March 1, 2012 from 12 to 1 p.m. (PST). Future topics include . . . [Read more]
2012 Call for Nominations Now Open - Innovations Abound! This year n4a will honor and promote member initiatives in Care Transitions, Financial Assistance, Caregiving, Livable Communities, Technology, Volunteerism and more. N4A members can nominate programs now through the March 14 deadline. Visit http://www.n4a.org/ for nomination details.
March 28-April 1
Aging in America, the 2012 Annual Conference of the American Society on Aging, will take place in Washington, DC. Family Caregiver Alliance will host several sessions, including "Family Caregivers: Policy Perspectives and Media Musings," in addition to a reception to honor the recipients of the 2011 Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards. [Read more]
The 2012 Alzheimer's Association Advocacy Forum will be held April 23-25 in Washington, DC. U.S. Health and Human Services Secretary Kathleen Sebelius , the featured luncheon speaker, will discuss the progress of the National Alzheimer's Plan. Leading political commentator and pollster, Frank Luntz, will be the keynote speaker. . . . [Read more ]
The American Academy of Home Care Physicians' two-day conference: Bringing Home the Care Continuum: Harnessing High Tech, High Touch Home Care Medicine will explore key issues in clinical and practice management, present applicable emerging technologies and innovations in models and review clinical practice standards. Register at the AAHCP website.
Research & Practice
President to Seek Additional Funds
for Alzheimer's Disease Research
It was announced this month that President Barack Obama will ask Congress for $80 million in new money to spend for Alzheimer's research in 2013, a move that has been applauded by Harry Johns, president of the Alzheimer's Association and Eric J. Hall, president of the Alzheimer's Foundation of American. In a two-part plan announced earlier this month, the National Institutes of Health immediately will devote an extra $50 million dementia research, on top of the $450 million a year it currently spends. [Read more]
New Studies Shed Light on the Spread of Alzheimer's Disease
Alzheimer's disease seems to spread like an infection from brain cell to brain cell, two new studies have found. But instead of viruses or bacteria, what is being spread is a distorted protein known as tau. According to the researchers, the surprising finding has immediate implications for developing treatments. They also suspect that other degenerative brain diseases such as Parkinson's disease may spread in a similar way. The new studies indicate that . . . [Read more]
More Assistance for Family Caregivers
Three organizations are offering additional information and resources for family caregivers. Genworth Financial and AARP, the membership group for older Americans, have introduced a new service, AARP® Caregiving Help and Advice from Genworth, for AARP members through which the families of older adults with dementia and other illnesses can have their needs assessed and care plans developed -either online, over the phone or in person with a registered nurse. [Read more]
Apps and Journals Can Help Manage Caregivers and Care Recipients' Health Records
There are methods to help manage individuals' and their care recipients' health-related records, whether the preference is to write down appointments in a notebook, use an app, or have email reminders sent to your phone. [Read more]
NCOA and n4a Encourage Seniors to Check on
A new campaign, "You Gave, Now Save," sponsored by the National Council on Aging (NCOA) and the National Association of Area Agencies on Aging (n4a), is encouraging older people to find out about programs and services they could qualify for but have not applied for before. These include reduced-cost medications, food stamps, home care aides, transportation programs, help with heating bills, and subsidies that lower Medicare premiums. [Read more]
FCA in the Media
This past month staff members of Family Caregiver Alliance have been interviewed and quoted in two different articles on caregiving. Read them online:
Executive Director, Kathleen Kelly, and dedicated FCA staff writers provide insights on various issues and current trends in the FCA Blog and on other sites. You are invited to join the discussions and post a comment of your own.
Innovations Clearinghouse on Family Caregiving
For additional research-based information and informed practices, visit FCA's Innovations Clearinghouse/Online Technical Assistance Center. Search the Clearinghouse to identify best practices, specific tools and policy & advocacy efforts; connect with fellow professionals from the aging networks; and request specialized technical assistance.
You can further shape the content of the Newsletter and the activities of the Technical Assistance Centers by telling us about your areas of interest. Please respond to
Lifespan Respite News
Getting to Know the Lifespan Respite Grantees and Stakeholders
The 30 State Lifespan Respite grantees funded by the U.S. Administration on Aging (AoA) are moving forward in coordinating their state respite systems. Additionally, seven of these original grantees, received Lifespan Respite Expansion Grants in 2011 with a focus on providing direct services to families. This month we will focus on the State of Nevada, an original 2009 grantee and one of the recipients of a Lifespan Respite Expansion Grant in FY 2011.
Nevada Lead Agencies and Primary Collaborators: The Nevada Aging and Disability Services Division (ADSD) was awarded the initial Lifespan Respite Grant in 2009 from AoA. The ADSD, in collaboration with project partners - Cleveland Clinic Lou Ruvo Center for Brain Health (CCLRCBH); the Alzheimer's Association - Northern Nevada/Northern California and Desert Southwest chapters; the local Aging and Disability Resource Centers (ADRC); and the Nevada Lifespan Respite Care Coalition agreed to work together in order to create the Nevada Lifespan Respite Care Program. As such they are working to create a comprehensive system of information dissemination and service delivery. The goal of the project is to improve awareness and access to respite services and to develop a network of services, including training and guidance for caregivers and service providers, and the development of quality standards. Outreach and volunteer utilization, particularly in rural areas, for care recipients of all ages is supported through awareness activities, training, volunteer recruitment, and respite referrals. [Read more]
State Lifespan Respite Programs Use Enhancement Grants to Deliver Services
In FY 11, the U.S. Administration on Aging awarded more than $1.1 million to Delaware, Nevada, North Carolina, Rhode Island, South Carolina, Tennessee, and Texas, and the District of Columbia to expand respite services for family caregivers. Through the Lifespan Respite Care Program Expansion, the grants will pay for direct services for caregivers as well as continued program development activities. The one-year expansion grants focus on ensuring respite services are provided to eligible populations. The grantees may use some of the funds to further enhance volunteer recruitment, training and retention activities and to further enhance outreach and dissemination activities. Key expansion activities include development of affordable respite options including use of vouchers and flex accounts; development of quality measures; enhancement of consumer choice; standardization of referral protocols; formalizing and targeting marketing strategies; and growing and strengthening coalitions.
Two states, Nevada and North Carolina issued RFPs to expand service and affordability options. [Read more]
New ARCH Publication
Federal Funding and Support Opportunities for Respite: Building Blocks for Lifespan Respite Systems, 2012
Authors: Susan Dougherty and Jill Kagan
This guide details basic information about each of the federal programs that provide or could potentially provide respite funding or support. It is meant to be used by state Lifespan Respite Care Programs and their partners to help identify the funding sources that could be the building blocks for the state's Lifespan Respite systems; help serve the underserved; help build respite capacity and quality; help recruit and retain respite workers; and identify the individuals who administer these funds for future collaboration and partnerships. This guide can also be useful to community- and faith-based programs and other local public and private entities that are looking for potential sources of funding to help build new respite programs or expand or sustain current efforts to fund training opportunities for respite providers or to enhance quality in other ways. It can also be useful to family caregivers or those who assist them in helping to identify sources of funding that could be used to pay for respite. Having numerous potential funding sources for respite certainly does not suggest that funding is even close to sufficient to meet the need, but it does suggest the need to coordinate such efforts to maximize their benefits. View complete report (options to download as PDF or view sections as web pages).
ARCH and NH Lifespan Respite Project Presents at Association of Maternal and Child Health Programs National Meeting
As state agencies struggle with current economic challenges and budget shortfalls, one way to move forward in service delivery is to continue building collaborative partnerships that can reduce administrative strain and encourage program sustainability. The Lifespan Respite program was designed with collaboration in mind. The potential state lead agency is not limited to only one entity. The state agency which administers the Older Americans Act, the state Medicaid agency, OR any agency designated by the Governor is eligible to apply for a Lifespan Respite grant. While the majority of state lead agencies for Lifespan Respite are aging or disability focused, the primary responsibility can be assumed by any. [Read more]
New Study Links Reduced Hospitalization of Children with Autism Directly to Respite
For every $1,000 states spent on respite services in the previous 60 days, researchers at the University of Pennsylvania found an 8 percent drop in the odds of hospitalization.
This is the major finding from a new study published this month in the Archives of Pediatrics and Adolescent Medicine. The findings come from a study of records for over 28,000 children with autism ages 5 to 21 who were enrolled in Medicaid in 2004. The authors concluded: "Respite care is not universally available through Medicaid. It may represent a critical type of service for supporting families in addressing challenging child behaviors. States should increase the availability of respite care for Medicaid-enrolled children with ASDs". View an abstract of the study. Full citation:
David S. Mandell, ScD; Ming Xie, MS; Knashawn H. Morales, ScD; Lindsay Lawer, MA; Megan McCarthy, MA; Steven C. Marcus, PhD. The Interplay of Outpatient Services and Psychiatric Hospitalization Among Medicaid-Enrolled Children With Autism Spectrum Disorders.Arch Pediatr Adolesc Med. 2012;166(1):68-73. doi:10.1001/archpediatrics.2011.714
New Report from the Institute of Medicine Cites Benefits of Respite
The CDC and the nonprofit Arthritis Foundation asked the Institute of Medicine (IOM) to help identify ways to reduce disability and improve the function and quality of life for people living with chronic illness. Living Well with Chronic Illness: Public Health Action to Reduce Disability and Improve Functioning and Quality of Life, a new report released in January by the Institute of Medicine (IOM), includes recommendations that all major federally funded programmatic and research initiatives in health include an evaluation on health-related quality of life and functional status. . . .[Read more]
ARCH is supporting two State Lifespan Respite Summits scheduled in February and March. The purpose of each summit is to bring together diverse public and private groups and family caregivers with similar respite interests spanning all ages and conditions to learn about the federal Lifespan Respite program, states' best practices, building state respite coalitions, and to help assist the state in planning its own Lifespan Respite system. The next two summits are:
February 24, 2012
- Iowa Lifespan Respite Summit, February 24, 2012, from 9:00 AM to 4:00 PM at Childserve, 5406 Merle Hay Road, Johnston, IA. The event is being cosponsored by The Arc of Iowa, the Iowa Department on Aging, Childserve and Healthy Connections, Inc. For more information and to sign up for the meeting, visit the registration site.
March 1, 2012
- Idaho Lifespan Respite Summit, March 1, 2012, from 9:30 AM to 4:30 PM, Student Union Building, 1700 University Drive, Boise State University, Boise, ID. The event is being sponsored by the Center for the Study on Aging and the Justice Alliance for Vulnerable Adults. For more information and to sign up for the meeting, visit the registration site.
Give ARCH your Feedback
We Need Your Input! The AoA funded Lifespan Respite Training and Technical Assistance Project of the ARCH National Respite Network and Resource Center would greatly appreciate your input in planning its training and TA activities. Please take a moment to respond to our online questionnaire.
|Family Caregiver Alliance | National Center on Caregiving
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ARCH National Respite Network and Resource Center
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This project is supported, in part, under a grant from the U.S. Department of Health and Human Services, Administration on Aging. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. These contents, however, do not necessarily represent the policy of the U.S. Department of Health and Human Services and endorsement by the Federal Government should not be assumed. ©2012 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, visit the Family Caregiver Alliance website at www.caregiver.org.
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The Newsletter of the Technical Assistance Centers is a publication of the National Center on Caregiving at Family Caregiver Alliance, 785 Market Street, Suite 750, San Francisco, CA 94103.