NAC News: Caregiving in the US Released, Member Updates & More! - National Alliance for Caregiving "The Caregiving Exchange" for May/June 2015

NAC News: Caregiving in the US Released, Member Updates & More! - National Alliance for Caregiving "The Caregiving Exchange" for May/June 2015

STAY CONNECTED:

From the President's Desk
Summer is here, but the hard work of the National Alliance for Caregiving is still going strong. On June 4th, we hosted a briefing on Capitol Hill with AARP to release the Caregiving in the U.S. 2015 report. The briefing featured remarks fromRepresentatives Diane Black (R-TN) and Michelle Lujan Grisham (D-NM), and remarks from Lea Rowe, a caregiver and advocate from Tennessee.
The joint report provides insight into who caregivers are, who they care for, and the impact caregiving has on them. Caregivers represent the growing diversity of the U.S. - nearly one quarter of caregivers are millennials, and 40% are men. 32% are higher-hour caregivers, providing at least 21 hours per week of care, and on average 62.2 hours of care. These findings and more are available in the report, which was made possible through the generous support of AARP,Archstone Foundation, Eli Lilly, Home Instead Senior Care, MetLife Foundation, Pfizer,UnitedHealthcare, and the Family Support Research and Training Center in conjunction with the University of Illinois at Chicago.
Our work will continue throughout the summer, with preparations for new research on caregivers of persons with severe mental illness, conference presentations atn4a and the Healthy Aging Summit, and involvement in campaigns like the #PoweringCare chats with Amy Goyerof AARP and ReACT. We hope you'll follow us as we continue our work on the important subject of caregiving.
Thanks so much for your support of family caregivers and caregiving research.
Best,

Gail Gibson Hunt
President and Chief Executive Officer
In This Issue
From the President's Desk
Research, Reports & Publications
Member Updates
Legislation & Advocacy Updates
Caregiving Coalitions Corner
Upcoming Events
New Research, Reports & Publications
The Caregiving in the U.S. 2015 report was released on June 4th at a Capitol Hill briefing featuring Representatives Diane Black (R-TN) and Michelle Lujan Grisham (D-NM). The report provides new insights into higher-hour caregivers (at least 21 hours of care a week), caregivers ages 75 and older, multicultural caregivers (including African American/black, Hispanic/Latino, and Asian American/Pacific Islander populations), and the challenges facing caregivers in the workplace. The report & findings will be highlighted in a webinar hosted by the Alliance and AARP on July 15th - more details to come.
New research from the European Journal of Oncology Nursing examined the impact of caregiver burden on the quality of life of the caregiver. They found that caregivers providing care to hospitalized patients demonstrated a lower quality of life, among other findings. 
European Journal of Oncology Nursing
Available online 18 March 2015
In Press, Corrected Proof — Note to users

Caregiving burden and the quality of life of family caregivers of cancer patients: the relationship and correlates
Sun Young Rhaa, b,
Yeonhee Parkc,
Su Kyung Songb,
Chung Eun Leeb,
Jiyeon Leec, , ,
a College of Medicine, Yonsei University, Seoul, South Korea
b Department of Medical Oncology, Yonsei Cancer Center, Seoul, South Korea
c College of Nursing, Eulji University, Daejeon, South Korea
Available online 18 March 2015Abstract
Purpose
Family caregivers of cancer patients become responsible for many elements of cancer care, usually without preparation or training in provision of care. Their efforts of care generate caregiving burden, which could deteriorate caregivers' quality of life (QOL).
Method
A secondary data analysis of a cross-sectional descriptive study was conducted to describe the influence of caregiving burden on the QOL of family caregivers ofcancer patients with consideration of correlates (N = 212). The Korean versions of Zarit Burden Interview and the World Health Organization QOL BREF were used. Multiple regression analyses were applied to analyze the relationship between the caregiving burden and QOL.
Results
Caregiving burden explained 30.3% of variance of the QOL (β = −0.534, p < 0.001). Caregivers caring for patients with functional deterioration experienced higher burden. Caregivers providing care for hospitalized patients demonstrated lower QOL. The caregiver's educational level was a positively contributing factor for the QOL.
Conclusions
Caregiving burden was the influential, negatively affecting factor for the QOL.Assessment of caregiving burden with special attention being paid to caregivers caring for patients with functional decline would help to identify caregivers in need of support. Supportive care needs to be sought to alleviate caregiving burden and improve the QOL of caregivers, especially for the caregivers of hospitalized patients.
Keywords
Cancer;
Caregivers;
Burden;
Quality of life
Corresponding author. College of Nursing, Eulji University, 77 Gyerong-ro, 771 beon-gil, Daejeon 301-746, South Korea. Tel.: +82 42 259 1712; fax: +82 42 259 1709.
Copyright © 2015 Elsevier Ltd. All rights reserved.
Note to users: Corrected proofs are Articles in Press that contain the authors' corrections. Final citation details, e.g., volume and/or issue number, publication year and page numbers, still need to be added and the text might change before final publication.
Although corrected proofs do not have all bibliographic details available yet, they can already be cited using the year of online publication and the DOI , as follows: author(s), article title, Publication (year), DOI. Please consult the journal's reference style for the exact appearance of these elements, abbreviation of journal names and use of punctuation.
When the final article is assigned to an volumes/issues of the Publication, the Article in Press version will be removed and the final version will appear in the associated published volumes/issues of the Publication. The date the article was first made available online will be carried over.Read more here. 
Cancer observed the health of the cancer caregiver over 8 years, checking for the presence of three physical impairments (arthritis, chronic back pain, and heart-related diseases). The study suggested that caregiving was signficantly related to the presence of the impairment markers.
New research in Neurology investigated sex differences in caregivers of persons with Parkinson's disease, to discover if there are differences in accompaniment to visits, use of paid caregiving, and caregiver strain between male and female caregivers. The study found several differences between the groups; for example, female caregivers were more likely to have a higher level of caregiving strain. Learn more here.
Survey Looking for Responses: Chronic pain affects about 100 million Americans, yet people still receive inadequate pain assessment & treatment. If you're experiencing pain, take this short survey from the Alliance for Balanced Pain Management to shed light on access to appropriate care.
Updates from Members

The Power of Partnering (POP) Summit was established in 2004 with the goal of developing and fostering mutually beneficial long term collaborations with our patient advocacy groups and professional associations. In 2010, local philanthropy organizations and community groups were also included. With attendee input, the Novartis POP Summit convenes once a year to discuss topics of interest and relevance to our collective missions. Innovative program collaborations have been developed as a result of content provided and networking at the POP Summit.
This year marked the 15th Power of Partnering Summit. "Collaborating for Maximum Impact: The REAL Power of Partnering," featured leading faculty from the prestigious Kellogg School of Nonprofit Management from Northwestern University who demonstrated why collaboration and measuring performance is are critical for success, as well as how important a new generation of data is to demonstrate outcomes.
We were proud once again to present the Novartis Cares About Caregivers Awards. Three exceptional caregivers were honored during a special Awards Luncheon. The award nominations, vetting, judging and selection were handled independently from Novartis by the National Alliance for Caregiving and the United Way of Northern NJ.

The journey to developing an employee resource group for Sanofi employees began with a Caregivers Summit in May 2014. The Summit featured Anne Beal, Chief Patient Officer and Natalie Bartner, Commercial Strategy & Operations and Deputy to the President NA Pharmaceuticals, and Executive Sponsor of the Caregivers' Summit.
At the Summit, Natalie commented, "Our goal from this session is to empower caregivers to create an Employee Resource Group. When employees with similar interests come together, we tap the richness of our diversity and offer a forum to exchange ideas, develop new skills and help us cope with challenges we face as caregivers."
"We are excited about this group, knowing the endless possibilities we can create to assist others who, in addition to working at Sanofi, serve as caregivers or those who support individuals within the caregiver role," says John Spinnato, Vice President, Corporate Social Responsibility, Sanofi North America.
The group is now going strong, led by employee volunteers, and provides its members with peer support and access to practical information and resources they can fit into their lives. It is a place where members are part of a safe and comfortable community; are more informed and confident to make caregiving decisions; and feel more balanced and whole because they recognize the importance of making time for self-care.
Legislation & Advocacy Updates
Recently Introduced Legislation
National Care Corps Act of 2015
On June 4th, U.S. Rep. Michelle Lujan Grisham (D-NM-1) reintroduced a bill (H.R. 5288) to create a national Care Corps program. Modeled after the Peace Corps, the program, housed within the Administration for Community Living at the Department of HHS, is designed to provide support for family caregivers and help meet the growing demand for the care of aging and disabled Americans. Rep. Lujan Grisham's National Care Corps Act will place volunteers in communities to work with seniors and individuals with disabilities who need extra support to live independently. Volunteers would receive a minimum of 40 hours of training. The Alliance supports this bill.
The Care Planning Act of 2015
On June 10th, Senators Warner (D-VA) and Isakson (R-GA) introduced a bill to create a Medicare and Medicaid benefit for patient-centered care planning for the goals and treatment options of individuals with serious illnesses. It also directs HHS to develop quality measures to monitor patient outcomes, including the synchronicity among an individual's states goals, values, and preferences with documented care plans. The Care Planning Act also provides resources for public and professional educational materials about care planning. Senators Tammy Baldwin (D-W), Susan Collins (R-ME), Amy Klobuchar (D-MN), and Shelley Moore Capito (R-WV) are original co-sponsors for the 2015 introduction of the Act. The Alliance supports this bill.
Past Legislation with a Strong Potential for Reintroduction
The Advance Planning and Compassionate Care Act
Most recently introduced in 2014 by Senator Blumenthal (D-CT), and forthcoming in 2015, the bill is intended to facilitate discussions on end-of-life issues. It would require every Medicare beneficiary receiving care in a hospital, nursing home, or other facility be given the opportunity to discuss end-of-life care and the preparation of an advanced care directive with appropriately trained staff. The bill would also require that a patient's advance directive be displayed prominently in the medical record.
Medicare Choices Empowerment and Protection Act
A bill previously introduced by Sen. Coburn (R-OK-Retired) and Sen. Coons (D-DE), would amend Title XVIII of the Social Security Act to encourage Medicare beneficiaries to voluntarily adopt advance directives. Sen. Coons is currently looking for a Republican co-sponsor so the bill can be reintroduced.
Personalize Your Care Act
A bill in the House which would provide coverage under Medicare and Medicaid for voluntary advance care planning consultations, sponsored by Rep. Earl Blumenauer (D-OR) and Rep. Phil Roe (R-TN).
State
The Care Act - Now passed in AK, NJ, NM, OK, VA, WV, CO, NH, NV, MS, CT, IL,OR, and NY, the Care Act is model legislation that mandates hospitals offer training to family and friends who care for patients after they are discharged from the hospital.
Other Update
White House Conference on Aging (WHCOA)
The White House Conference on Aging will be held on July 13th. 2015 marks the 50th anniversary of Medicare, Medicaid, and the Older Americans Act, as well as the 80th anniversary of Social Security. There have been several WHCOA preconference events, including several that the Alliance has participated in. For updates and more info, please visit www.whitehouseconferenceonaging.gov.
Caregiving Coalitions Corner
Charlotte Dodge, Advocacy Coordinator
As you may know, the American Society on Aging's (ASA) Aging in America 2016 Conference will take place in Washington, DC in 2016 on March 20-24. We are currently in the planning stages of our next Annual National Conference of Caregiving Coalitions, but are once again looking to host an event coinciding with the ASA conference in Washington, DC. If you have suggestions or comments on possible program topics or potential guest speakers for our Coalitions Conference, please email me at Charlotte@caregiving.org.
We are also busy working on development of Phase II of our Caregiving Champions program. Stay tuned for more Coalition and Champions announcements coming soon!
Interested in starting a Caregiving Coalition? The Alliance is currently working with advocates that have expressed an interest in starting a coalition in the following states: Illinois, Florida, Wyoming, Maryland, Massachusetts, Mississippi, Arkansas, Colorado and Idaho. We invite you to check out our free Coalition guidebooks on our website. Please visit www.caregiving.org/coalitions/coalition-resources to learn more. If you are interested in starting a coalition in your community, please email me atCharlotte@caregiving.org so we can touch base.
Thanks everyone!
Upcoming Events in Caregiving & Aging
2015 n4a Conference - Answers on Aging
July 11-15, 2015 | Philadelphia, PA
Join n4a in Philadelphia for its 40th Annual Conference & Tradeshow to see the most innovative policies, programs and services that assist older adults, persons with disabilities and their caregivers lead independent and productive lives showcased. Registration is now open - learn more here.
Alzheimer's Association International Conference 2015
July 18-23, 2015 | Washington, DC
The Alzheimer's Association International Conference (AAIC) is the world's largest forum for the dementia research community. International investigators, clinicians and care providers gather annually to share the latest study results, theories and discoveries to bring the world closer to breakthroughs in dementia science. Learn more here.
2015 Healthy Aging Summit
July 27-28, 2015 | Washington, DC
The 2015 Healthy Aging Summit will specifically highlight the science of healthy aging and preventive services and identify policy gaps that can be pursued to improve the quality of life for older adults. A greater understanding of the social, environmental and emotional factors that influence health in the later years of life can improve quality of life and reduce health care costs. Learn more here.
6th International Carers Conference
September 3-6, 2015 | Gothenburg, Sweden
Themes for the International Carers Conference include: the health, social care, and well-being of caregivers; combining work and care; paying for care; and technology-enabled care and support. Registration for the conference is now open - learn more here.
GSA's 68th Annual Scientific Meeting
November 18-22, 2015 | Orlando, FL
GSA's 68th Annual Scientific Meeting brings together more than 4,000 of the brightest minds in the field of aging. This meeting is the premier gathering of gerontologists from both the United States and around the world. They participate in over 400 scientific sessions including symposia, paper, and poster presentations. The 2015 theme is "Aging as a Lifelong Process," which highlights the fact that what gerontologists study is actually the cumulative outcome of lifelong events that culminate during old age. Learn more here.
If you would like the Alliance's President and CEO, Gail Hunt, to present on caregiving issues at your upcoming conference, please emailstephanie@caregiving.org.
STAY CONNECTED:

National Alliance for Caregiving
4720 Montgomery Lane, Suite 205
Bethesda, Maryland 20814 United States
___________________________