Condition Specific

Condition Specific Populations

Alzheimer’s and Related Dementias

Cancer

Nearly three million Americans are currently caring for someone with cancer, and many play a key role in managing cancer, including helping their loved one adhere to treatment, make informed decisions, and even address end-of-life concerns. After dementia, cancer is the second most prevalent condition that requires the assistance of a family caregiver.

The National Alliance for Caregiving, in partnership with the National Cancer Institute and the Cancer Support Community and with data analysis from Greenwald & Associates, developed this paper to identify the challenges facing these family caregivers.

Mental Illness

As many as 8.4 million Americans are providing care to an adult with an emotional or mental health issue. As some have said, mental illness is a disease that affects the whole family. Family caregivers feel the impact of the disease as they struggle to care for their loved ones and to bridge health care systems, mental health providers, and community supports.

The National Alliance for Caregiving, in partnership with Mental Health America and the National Alliance on Mental Illness, is honored to release a new study on the obstacles and opportunities facing caregivers of adults with mental illness. The study, On Pins & Needles: Caregivers of Adults with Mental Illness, identifies startling inadequacies in the U.S. health care system in meeting the needs of families who manage moderate-to-serious mental illness.

The study provides new data on 1,601 family caregivers of persons with moderate-to-severe mental illness including people caring for a loved one affected by bipolar disorder, schizophrenia, major depression or another mental illness. Findings include gaps in existing coverage and potential solutions. The report also includes public policy recommendations. The study was made possible through generous sponsorship from Allergan, Eli Lilly, Novartis, and Janssen Scientific Affairs, LLC.

Rare Disease

The National Alliance for Caregiving, in partnership with Global Genes, is proud to present Rare Disease Caregiving in America (February 2018), a national study of 1,406 unpaid caregivers ages 18 and over living in the United States who provide care to a child or adult with a rare disease or condition. The National Institutes of Health estimates that there are approximately 7,000 rare diseases. In this study, over 400 unique rare diseases and conditions were captured, with the most commonly mentioned rare conditions as follows: Cystic Fibrosis (9%), Pulmonary arterial hypertension (4%), Atypical hemolytic uremic syndrome (2%), Ehlers-Donlos syndromes (2%), Fabry disease (2%), Congenital central hypoventilation syndrome (2%), and PANDAS (2%).

An independent Advisory Committee of national caregiving experts, clinicians, and patient/caregiving advocates reviewed the survey questionnaire, initial report findings, and final report before its release. Researchers at Greenwald & Associates administered the survey and conducted the data analysis.

The research made possible through funding from the following organizations: The Allergan Foundation, Alexion Pharmaceuticals, Inc., Amgen, Amicus Therapeutics, Biogen, the Family Support Research and Training Center (FSRTC) at the University of Illinois-Chicago, Mallinckrodt Pharmaceuticals, Retrophin, Shire, Ultragenyx Pharmaceutical, Inc., and Vertex Pharmaceuticals.

Special Populations

Diverse Populations

Rural Caregivers

Young Caregivers

National Alliance for Caregiving: 30 Years of Advancing Caregiving 

Public Health

Report & National Webinar

Core Advocacy Principles

Federal Caregiving Legislation

Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act

Public Law No. 115-119

Requires the Secretary of Health and Human Services to develop, maintain and update an integrated national strategy to recognize and support family caregivers. Brings together relevant federal agencies and others from the private and public sectors to advise and make recommendations regarding the national strategy.

Sponsor(s): Senator Susan Collins (R-ME)

Credit for Caring Act

H.R. 2505 →H.R. 3321
S.1151 → S. 1670

This bill allows an eligible caregiver a tax credit of up to $5,000 for 30% of the cost of long-term care expenses that exceed $2,000 in a taxable year to help defray the costs of caring for a loved one. This credit would be available to caregivers of persons across the lifespan (adult of for a child with a disability)

Sponsor(s): Representative Linda Sánchez (D-CA); Senator Joni Ernst (R-IA)

Family and Medical Insurance Leave (FAMILY) Act

H.R. 947 → H.R 804
S.337 → S. 248

Provides workers with up to 12 weeks of partial income when they take time for their own serious health condition, including pregnancy and childbirth recovery; the serious health condition of a child, parent, spouse or domestic partner; the birth or adoption of a child; and/or for military caregiving and leave purposes. The benefit would be administered through a new Office of Paid Family and Medical Leave within the Social Security Administration. Payroll contributions would cover both insurance benefits and administrative costs.

Sponsor(s): Representative Rosa DeLauro (D-CT); Senator Kirsten Gillibrand (D-NY)

Building Our Largest Dementia Infrastructure for Alzheimer’s (BOLD) 

Would create an Alzheimer’s public health infrastructure across the country to implement effective Alzheimer’s interventions focused on public health issues such as increasing early detection and diagnosis, reducing risk and preventing avoidable hospitalizations. The BOLD Infrastructure for Alzheimer’s Act would also increase implementation of the Healthy Brain Initiative’s Public Health Road Map nationwide by establishing Alzheimer’s centers of excellence, providing cooperative agreements to public health departments, and increasing data collection, analysis and timely reporting.
Sponsor: Senator Susan Collins (R-ME) and Representative Brett Guthrie (R-KY)

VA Mission Act

Public Law No: 115-182

The MISSION Act gives Veterans greater access to health care in VA facilities and the community, expands benefits for caregivers, and improves VA’s ability to recruit and retain the best medical providers.

Lifespan Respite Care Reauthorization ActH.R 2535 became H.R 8906 and became Law on 1/5/2021. It is now known as Public Law No: 116-324This bill reauthorizes through FY2024 and revises the Lifespan Respite Care Program. The Lifespan Respite Care Program provides competitive grants to state agencies working in concert with Aging and Disability Resource Centers and non-profit state respite organizations to make quality respite available and accessible to family caregivers. This bill amends the Public Health Service Act to reauthorize the Lifespan Respite Care Program at $10 million a year for five years.

Dignity in Aging Act

Public Law No: 116-131

This bill establishes, reauthorizes, and revises several programs administered by the Department of Health and Human Services and the Department of Labor relating to care for the elderly.

Among other things, the bill reauthorizes through FY2024 and revises programs that support caregivers of the elderly; informational services, such as pension counseling; nutritional services, such as meal delivery; disease prevention and health promotion services; community and workforce training regarding elder care; and abuse and neglect prevention services.

Other Federal Legislation of Note

NAC supports and tracks the progression of:

Social Security Caregiver Credit Act

H.R. 3632 and S.1955 Provide a social security credit to be added to a person’s total career earnings and used to calculate future social security benefits. This is a progressive benefit for caregivers who spend at least 80 hours a month providing care. This includes caregivers of a parent, aunt, uncle, grandchild, niece, nephew, spouse, or domestic partner.

Sponsor(s): Representative Chris Murphy (D-CT) 7 & Bradley Scott Schneider (D-IL)

Alzheimer’s Caregiver Support Act

H.R. 2972 → H.R. 1474
S. 311 → S. 56

Provides grants to public and non-profit organizations to expand and improve training and support services for families and caregivers of individuals with Alzheimer’s disease. The bill ensures that grantees provide public outreach on the services they offer under this program and that grantees provide services in a culturally appropriate manner.

Sponsor(s): Senator Amy Klobuchar (D-MN) & Representative Maxine Waters (D-CA)

The Prescription Drug User Fee (PDUFA) ActH.R. 2430 → Became law 8/18/2017. It is now known as Public Law no: 115-52

PDUFA was created by Congress in 1992 and authorizes FDA to collect fees from companies that produce certain human drug and biological products. Since the passage of PDUFA, user fees have played an important role in expediting the drug approval process. PDUFA must be reauthorized every five years and was renewed in 1997, 2002, 2007, 2012, and recently in 2017. It is due for renewal in September 2022 for fiscal years 2023 – 2027.

Creating High-Quality Results and Outcomes Necessary to Improve Chronic (CHRONIC) Care Act of 2017

Public Law No: 115-123Would implement Medicare payment policies to improve management of chronic disease, streamline care coordination, and improve quality outcomes without adding to the deficit. Permanently authorizes Medicare Advantage SNPs. Provides more flexibility in allowable Supplemental Benefits in Medicare Advantage, such as healthy meals and transportation to medical appointments. Expands the Center for Medicare and Medicaid Innovation (CMMI) Medicare Advantage Value-Based Insurance Design (VBID) Model to all 50 states. Expands telemedicine benefits in Medicare Advantage.

Sponsor(s): Senator Orrin Hatch (R-UT)

Advocacy Collaborative

Collaborative Membership Directory

Developing a Unified Strategy to Support Family Caregivers

NAC’s 2019 Annual Conference of Caregiver Advocates convened to explore the need for a unified strategy to address family caregiving as a public health issue. NAC builds upon that work by convening advocates to share resources and collaborate on the implementation of key policy recommendations that are aligned with global, national and state priorities impacting family caregivers across the lifespan.

Coalition Building

Ever wanted to start your own family caregiver coalition? Ever wanted to improve the one you have? Our coalition guidebooks can help you with you establish, build, and sustain your family caregiving coalition. Written with input from caregiving coalitions across the U.S., these guidebooks cover the basics of setting up a non-profit, communications, funding, strategic planning, advocacy, and more. They are intended to be helpful both for the beginning advocate and for existing coalitions interested in growth and sustainability.

By way of background, these guides were developed from the 12 Keys guidebook, a collaborative effort under the direction of Helen Eltzeroth, Project Manager.

National Coalitions

NAC participates in public discussions about the needs of caregivers and policy solutions that may better support their care. Working with other non-profits, public-private partnerships, and influencers, members of the NAC team regularly engage in partnerships with other advocates for the aging and persons with disabilities to find cross-cutting solutions that will support caregiving.

NAC is proud to be a member of the following coalitions:

• Coalition to Transform Advanced Care (C-TAC)
• Consortium for Citizens with Disabilities (CCD)
• Eldercare Workforce Alliance (EWA)
• Leadership Council of Aging Organizations (LCAO)
• Leaders Engaged on Alzheimer’s Disease (LEAD)
• National Consumers League (NCL)
• National Health Council (NHC)
• Patient Quality of Life Coalition (PQoL)
• ReACT Coalition (“Respect A Caregiver’s Time)

Rare Disease Caregiving

National Report: Rare Disease Caregiving in America

Cost & Impact Reports

Working and Caring & Impact on Caregiver Health

MetLife Study of Working Caregivers and Employer Health Care Costs (2010)

Falls Preventation