The National Alliance for Caregiving
INTERNATIONAL ALLIANCE OF CARER ORGANIZATIONS (IACO) INAUGURAL MEETING
The inaugural meeting of the International Alliance of Carer Organizations took place on May 22 in Dublin, Ireland. The meeting was a great success with presentations on family carers in attendee countries as well as discussion on future projects for IACO. Member countries from the United States, Canada, Sweden, the United Kingdom, Ireland, Australia, and New Zealand took part in the discussion. There were also interesting speakers, including a keynote from Saul Becker, the Head of School and Professor of Social Policy and Social Work at the University of Nottingham. His presentation on the International Perspectives on Younger Carers provided great insight to the challenges of young caregivers. The meeting produced many next steps that we look forward to pursing in the coming months.
2013 INNOVATIONS IN CAREGIVING: SEED GRANT RECIPIENTS
Today, MetLife Foundation and the National Alliance for Caregiving announced the recipients of the new Innovations in Caregiving Grants Program. Ten organizations received grants to replicate family caregiver education and support programs in their local communities. The grants will provide $10,000 to each organization for startup funds to adapt programs/best practices that were identified as model programs of the previous MetLife Foundation/National Alliance for Caregiving Family Caregiving Awards initiative which ran from 2006-2010.
These ten winners were chosen based on their innovation, collaboration, sustainability and effectiveness in replicating a program/best practice for caregiver needs in their own communities.
“The startup funds for these award-winning replication programs will offer caregivers in these communities a new quality of support that can make a positive difference in the challenges they face as caregivers.”
- Gail Gibson Hunt, President & CEO, National Alliance for Caregiving.
Click here to find out who the 2013 Seed Grant Recipients are!
REGISTER TODAY FOR THE APRIL QUARTERLY FAMILY CAREGIVING COALITION WEBINAR!
Please mark your calendar on Tuesday April 30 at 3PM EST.
During this webinar you will learn more about the BRAVE Awards, a unique international program designed to honor non-professional caregivers, celebrating the impact they have on others and our society. Recipients of a 2013 BRAVE Award each receive $10,000. Click here if you want to read more about it.
We will also talk about the 7th Annual National Conference for Caregiving Coalitions which was a great success. Two scholarship award recipients will share what they learned during the conference and how they want to apply these lessons learned to their coalition and there will be a CMS and legislative update.
This is a webinar you won’t want to miss so mark your calendar!
If you have questions in advance, please don’t hesitate to reach out to stien@caregiving.org. To register click here.
POWERPOINT PRESENTATIONS AVAILABLE NOW!
The PowerPoint presentations from the 7th Annual National Conference for Caregiving Coalitions are available. Learn more about family caregiving coalitions, be surprised by all the new technologies that are available to support the caregiving network and why it’s important to “Care” about social media too! Click here to relive the conference
USA TODAY Supplement of Family Caregiving
In the March 15-17 weekend edition of USA Today there is a terrific 18 page supplement on Family Caregiving, called “Supporting Our Caregivers“. Developed in partnership with Caregiver Action Network and produced by Media Planet, the supplement will reach 1.6 million readers of USA Today and many, many more through pass-alongs. The Alliance also contributed much of the research and other content. We hope you’ll go out and purchase a copy of the paper to show your support for the paper and for Media Planet. Please tell your friends and post this throughout your networks. Let us know if this supplement is useful to you in your work – we hope to do this again in November for National Caregiver’s Awareness Month.
Planting The Seed
Ever wanted to start your own family caregiver coalition? Ever wanted to improve the one you have? Planting the Seed: Establishing and Growing Your Family Caregiving Coalition is now available to help answer your questions.
Produced by NAC, the purpose of this guide is to offer guidance both to individuals and organizations who want to establish a caregiving coalition in their community and to existing coalitions looking for tools to help them maintain, grow and strengthen their coalition.
Volume 1 is now available and covers what you need to know to start a coalition, from the planning steps, to creating a vision statement, mission statement, goals and objectives, and how to operationalize your coalition. Volume 2 will be available this summer and focuses on growing and maintaining your coalition, with topics including: strategic planning, decision making, projects and activities such as advocacy, education/training, research, public awareness, information and referral, and evaluation and sustainability.
To learn more about family caregiving coalitions and connecting with those in your area, email us at coalitions@caregiving.org.
Read the interesting article: “How The Patient-Centered Outcomes Research Institute Is Engaging Patients And Others In Shaping Its Research Agenda”!
ABSTRACT: Clinical research has been driven traditionally by investigators, from generating research questions and outcomes through analysis and release of study results. Building on the work of others, the Patient-Centered Outcomes Research Institute (PCORI) is tapping into its broad-based stakeholder community—especially patients, caregivers, and their clinicians—to generate topics for research, help the institute prioritize those topics, select topics for funding, and ensure patients’ involvement in the design of research projects. This article describes PCORI’s approach, which is emblematic of the organization’s mandate under the Affordable Care Act to seek meaningful ways to integrate the patient’s voice into the research process, and describes how it is being used in selection of research that PCORI will fund. We also describe challenges facing our approach, including a lack of common language and training on the part of patients and resistance on the part of researchers to questions that are not researcher generated. Faced with the reality that PCORI will not be able to fund all research questions posed to it, there will also be difficult decisions to make when selecting those that have the highest priority for funding.
Click here to read the full article
Recorded version for the Quarterly Family Caregiving Coalition Webinar available now!
This Quarterly Family Caregiving Coalition Webinar was focused on Caregiving Coalition Composition. Family Caregiving Coalitions explained what their focus is and how they include a diverse array of members (businesses, organizations, physicians, social workers,…). They also talked about how they face various challenges and the value they experience in being an inclusive and diverse coalition.
Click here to watch the recorded webcast
Tell Washington…We Must Stop Alzheimer’s!
In honor of National Family Caregivers Month and National Alzheimer’s Disease (AD) Awareness Month we are asking everyone, especially caregivers to send a strong message to Capitol Hill to not let up on fighting AD. We know how challenging caregiving can be…caring for someone with AD can be even more so. Alzheimer’s is a cruel, heartbreaking disease that affects one in three American families. Across the country, more than five million people ages 65 and older currently are living with AD. Over 15 million more Americans – family members, friends, neighbors and volunteers – provide unpaid care for someone with AD. Unless we find new treatments or find a cure, by 2050 over 16 million Americans, plus their families will be facing the devastation of Alzheimer’s.
It is vitally important that Congress fulfill its commitment to fight this disease by carrying through on the National Plan to Address Alzheimer’s Disease, which was adopted this summer. This is why The National Alliance for Caregiving is asking one minute of your time – one minute to read and sign a petition, already signed by thousands of other Americans to Tell Washington, We Must Stop Alzheimer’s! Please follow this link (click here), read and sign the petition. Then we ask that you pass this message along to everyone you can in your network – colleagues, coalition members, caregivers, friends and others. Please post it on your social media as well.
Together we can truly make a difference and ultimately stop this disease. Thank you!
QUICK ANALYSIS OF THE U.S. SUPREME COURTS UPHOLDING OF THE AFFORDABLE CARE ACT
On Thursday June 28, the U.S. Supreme Court handed down a historic decision upholding the constitutionality of the Affordable Care Act’s (ACA) individual mandate. However, to the surprise of many, the Court placed a significant limitation on the ACA’s Medicaid eligibility expansion provision. Under the ruling, states must be given a choice about whether or not to move forward with the ACA’s Medicaid expansion, and the federal government cannot cut off existing Medicaid funding to states that choose not to proceed with the expansion.
Here is a brief slide deck of Avalere Health’s analysis of how the Court’s decision will affect ongoing ACA implementation efforts, with a special emphasis on the practical and policy implications of the Court’s Medicaid decision. Also highlighted are key takeaway points for stakeholders.
SCOTUS Decision Highlights and Implications
LATEST RESEARCH
The National Alliance for Caregiving released the Best Practices in Workplace Eldercare study, commissioned by ReACT (a coalition of companies working to support employers and their employees who are family caregivers) and supported by a grant from the Alzheimer’s Immunotherapy Program of Janssen Alzheimer Immunotherapy and Pfizer Inc. The study was conducted to identify current trends and innovations in workplace policies and practices to support employees with responsibilities for caring for older adults (eldercare). In addition, the study examines key benefits to employers, including worker retention, improved productivity, lower stress and improved health among workers. These programs are seen also as a plus for attracting new employees.
Best Practices in Workplace Eldercare (pdf)
Multiple Sclerosis Caregivers 2012 (pdf)
Multiple Sclerosis (MS) is a chronic, often disabling disease that attacks the central nervous system, often times beginning in young adulthood. It presents in many different symptoms, at differing time frequencies and duration, requiring substantial caregiver assistance. One of the biggest challenges of living with multiple sclerosis is coping with the constantly changing state of the disease. It’s not unusual to encounter periods of severe symptoms followed by remissions. As a result, the physical, mental and financial burdens on family caregivers of people with MS are significantly greater than the general family caregiving population. This is the reality reported NAC’s most recent study: Multiple Sclerosis Caregivers 2012
Alzheimer’s Caregiver’s Healthcare Costs Increase as Person with Dementia Declines (pdf)
Caring for someone with Alzheimer’s can impact your own health and increase healthcare costs. This latest Alliance study shows a significant decrease in family caregiver health as their care recipient’s dementia increases. While there are studies that indicate that the health of family caregivers may be adversely affected, especially as their caregiving continues and becomes more intense, this study specifically examines the use of formal health services in a large sample of Alzheimer’s disease caregivers.
A MEMO FOR CAREGIVING COALITIONS
In April 2012, the National Alliance for Caregiving released a memo for caregiving coalitions providing an overview of Older Americans Act (OAA) reauthorization. Advocates are hopeful the Senate will debate and pass a reauthorization bill this spring or summer, and a number of bills with Senators’ priorities for OAA – including provisions that directly impact family caregivers via the National Family Caregiver Support Program – have already been introduced. The memo provides an overview of the Alliance’s priorities for OAA reauthorization, a summary of reauthorization bills, the Alliance’s position on each of those bills, and ways you can connect with your Senators and Representatives to express your views and priorities for reauthorization. To read the full memo, click here.
A Caregiver’s Story: Alzheimer’s is a Cruel Disease
Listen as Sabina Shalom shares the story of how her husband has gone from the man of her dreams to the man she barely knows. This touching story highlights the struggles she and nearly 15 million friends and family endure daily with the more than 5.4 million people suffering from Alzheimer’s disease. PhRMA has partnered with the National Alliance for Caregiving to bring focus on the disease and those who provide the care. Please watch the video. Please click on “Like.” And please pass this message on to your friends and colleagues.
