Resources

Able Data

Abuse/mistreatment/exploitation

Advance directives

Adult day care center use

Agencies on Aging

Ageism

Aging in place

Alzheimer's disease & dementia

Anti-aging medicine

Antibiotics

Assisted living

Biology and genetics

Brain health

Cancer

Cardiovascular disease

Caregiving

Centenarians

Chronic pain/disease

Clinical diagnosis of osteoporosis

CMS Fast Facts

Cognitive aging

COVID-19

Creativity

Communicating with older adults

Demographics

Diabetes

Direct care workers

Disabilities

Disaster planning

Disparities

Drugs and devices

Elder abuse

End-of-life care

Ethnic aging

Evidence-based policy

Exercise

Federal agencies

Geriatrics

Global aging

Healthy aging

Healthy Brain Initiative

Healthcare Equality Index (HEI)

HIV/AIDS and aging

Home health care

Hospice and palliative care

Hospital utilization

Hospitalizations: Age 85 and older

Housing

Income

Isolation/loneliness

Legal resources

Lesbian, gay, bisexual and transgender community

Longevity

Longevity gene

Long-term care

Median cost of long-term care data table

Medicare and Medicaid

Medication management

Multicultural aging

Neighborhoods

Nutrition

Nursing homes

Observation status

Older Americans Act Reauthorization Act of 2015

Oral health

Overuse of care

Palliative care

Pets: Health benefits

Physical activity

Population trends

Prescription drugs

Provisional Life Expectancy Estimates 2020

Readiness assessment

Reform

Retirement/labor/employment

Reverse mortgages

Science of aging

Sleep

Social Security

Sourcing and style guides

Stereotypes

Storytelling

Supply chain

Transitional care

Women's health

Workforce

Volunteering – older adults

Able Data

Able Data provides objective information about assistive technology products and rehabilitation equipment. Their database includes 40,000 assistive technology products classified in 20 areas — from assistance with daily living tools to workplace support devices.

Abuse/mistreatment/exploitation

Expert panel tackles elder abuse at workshop on aging: Liz Seegert writes about a panel on elder abuse at AHCJ's Journalism Workshop on Aging and Health in October 2019. The post includes links to research and some experts that might be good sources for stories.

National Adult Maltreatment Reporting System (NAMRS)  the first comprehensive, national reporting system for adult protective services (APS) programs. It collects quantitative and qualitative data on APS practices and policies, and the outcomes of investigations into the maltreatment of older adults and adults with disabilities. The goal of NAMRS is to provide consistent, accurate national data on the exploitation and abuse of older adults and adults with disabilities, as reported to APS agencies.

Advance directives

Some websites offer introductions to and advance directives.

POLSTs are primarily for those with serious life-threatening illnesses or advanced life-limiting conditions. The POLST initiative began in 1991 through the efforts of The Center for Ethics in Health Care at Oregon Health & Science University. Here is an OHSU's information guide comparing POLSTs and Advance Directive. POLSTs documents are currently used in 14 states and being considered in 22 more. The National Catholic Bioethics Center, however, “favors the designation of a health care agent” (a person) over any type of advance directive, including POLSTs.

Rebecca Sudore, M.D., assistant professor of medicine, Division of Geriatrics, University of California, San Francisco; staff physician, San Francisco VA Medical Center discusses several problems with advance care planning and what she calls a "new paradigm" of advance care planning.

Lots of information and sources are available in the tip sheet "What do reporters need to know about Physician Orders for Life-Sustaining Treatment (POLST)?"

Here are articles about advance directives and POLSTs.

Adult Day Care Center Use 

Differences in Adult Day Services Center Characteristics by Center Ownership: United States, 2012 and
Differences in Adult Day Services Center Participant Characteristics by Center Ownership: United States, 2012
The National Center for Health Statistics estimates that 4,800 adult day services centers nationwide serve nearly a quarter million participants daily. They have released two new data briefs to aid in understanding who these participants are, how they use these facilities and the  economic variables within the for-profit and nonprofit adult day care sector. Another interesting breakdown that reporters might find helpful includes prior emergency department visits and hospital readmission patterns. 

Agencies on Aging

National Survey of Area Agencies on Aging 2020 Report and Toolkit
n4a worked with Scripps Gerontology Center at Miami University of Ohio to conduct an online survey to gather information about AAAs. The National Survey of Area Agencies on Aging, conducted every two to three years since 2007, tracks important new trends in programs, services and funding affecting older adults in communities across the United States. This data is essential for analyzing policy issues, benchmarking services, supporting requests for funding, preparing local issue briefs, speaking with funders or legislators and more. The toolkit elements help AAAs tell the story of their work to older adults, caregivers, funders, policymakers and other stakeholders in your state.

Ageism

Websites

Reports & Articles

Books

 Aging in place

All Together Now: Integrating Health and Community Supports for Older Adults
Brief from American Institutes for Research’s Center on Aging. First in a two-part series about policies and programs that provide resources and services for aging in place shows current programs are vastly underfunded and fragmented, and how policy needs to evolve to meet the needs of the aging population.

Growing Expectations
April 2016 report on older adults and technology use shows greater tech awareness among adults 59 to 85; cautions tech companies to pay attention to service, support, design for this growing demographic

National Creative Aging Network
A directory of creative aging programs in America serving older people. It includes intergenerational activities in urban, suburban and rural communities in a variety of settings. The initiative is funded by the National Endowment for the Arts, MetLife Foundation, and The Michelson Foundation. 

Aging Initiative
The U.S. Environmental Protection Agency is developing a National Agenda for the Environment and the Aging  aimed at protecting the health of older people. This site provides information on the initiative, as well as research on aging, smart-growth issues and environmental hazards.

Community Partnerships for Older Adults
This national program aims to help communities develop options that meet the needs of older adults.

Center for Healthy Aging
The National Council on Aging encourages the development and implementation of evidence-based programs that provide proven health benefits to seniors.

CR Society
A 5,000-member anti-aging group that advocates better health and longer life based on evolving knowledge garnered from continuing research in various branches of science.

Aging Well in Communities, Center for Civic Partnerships
This initiative helps communities plan for an aging population.

National Aging in Place Council

Aging in Place Initiative

Village to Village Network

NORCs: An Aging in Place Initiative

Center for Technology and Aging

Center for Aging Services Technology

National Association of Area Agencies on Aging

American Association of Clinical Endocrinologists

The Endocrine Society

The FDA on anti-aging supplements

National Research Center for Women and Families

The Mayo Clinic on Healthy Aging

MacArthur Foundation Research Network on an Aging Society

Aging in Place: A State Survey of Liveability Policies and Practices,” December 2011, by AARP.

The Maturing of America: Getting Communities on Track for an Aging Population,” published by the National Association of Area Agencies on Aging and several other partners in June 2011.

The National Academy for State Health Policy reviewed new state options for funding home and community based services under health reform in this report. Families USA summarized these provisions in a fact sheet. And Health Affairs examined at the issue in a March 2011 article

Here is a list of local and state agencies on aging.

There are several new, emerging models of aging across the country.

So-called “villages” – seniors in a community who join together, purchase some services cooperatively, and agree on self-help – are a relatively recent example. This village movement began in Boston with Beacon Hill Village, founded in 2001. Check the Village to Village network for more examples.

Another example are “naturally occurring retirement communities.” For more information about this model, which originated in New York City, see the NORC website.

A Platform for Aging in Place: The Increasing Potential of High-speed Internet Connectivity: Information and communication services, delivered over a high-speed Internet connection, increase the potential for older adults to live independently, safely, and comfortably in their own homes. And yet, few older adults have a fast Internet connection at home. Some of the most promising Internet-based services and applications involve virtual visits with clinicians and family caregivers, automation of routine home activities, and in-home monitoring for older adults with limitations in activities of daily living. This July 2013 report, from AARP's Public Policy Institute, presents an overview of these services. It also offers recommendations urging policymakers to ensure that affordable high-speed connectivity is available to all citizens and promoted as an aging-in-place solution.

Alzheimer's disease & dementia

Today’s Research on Aging: The Demography of Dementia and Dementia Caregiving — A report from the Population Reference Bureau summarizes what is known about the characteristics of people with dementia and their caregiving/living arrangements. These reports are based on studies funded by the National Institute on Aging. Understanding the characteristics of those with dementia can help lawmakers design policies that better meet the needs of this rapidly growing population and their families.

The Alzheimer’s Prevention Initiative’s (API) Generation Study is studying cognitively normal older adults with two copies of the APOE ɛ4 gene. The study will be conducted at about 90 sites in North America, Europe, and Australia, about half of them in the U.S. The research team has enrolled approximately 1,340 cognitively normal adults, 60 to 75, who will be randomly assigned to take either a test drug or a placebo for at least five years. Banner Alzheimer's Institute in Phoenix is running the study in the U.S., along with Novartis Pharmaceuticals and Amgen.

Alzheimers.gov — a new, comprehensive resource from the National Institutes for Health. It was developed for professionals, those living with the disease or other dementias, and the people who care for them. Provides links to research, clinical trials, facts and figures, tips for living with, and caring for those living with Alzheimer’s. There’s also news about current and prior research, which can help journalists catch up on scientific studies they may have missed.

The Center for Brain Health Equity, created by UsAgainstAlzheimer’s with a $1.5 million cooperative agreement with the CDC Healthy Brain Initiative, the Center for Brain Health Equity will help address racial and gender disparities associated with Alzheimer’s and other dementias.  Black Americans are 2-3 times more likely to develop Alzheimer’s as Whites; Latinos are 1.5x as likely. And women make up 60% of all people living with Alzheimer’s and two-thirds of all caregiver. The Center will use data-based strategies from the National Alzheimer’s Disease Index, a new tool under development by UsAgainstAlzheimer's that enables healthcare providers, public health professionals, researchers, and government leaders to analyze Alzheimer’s health statistics by geography and demographics.

The Centers for Disease Control and Prevention in July 2019 updated their Alzheimer's Disease and Healthy Aging Data Portal with state-by-state data on caregiving, mental health and Alzheimer’s Disease that can be used for “prioritization and evaluation of public health interventions.” The population of people living with Alzheimer’s is projected to more than double by 2050, states need to be prepared to respond to the disease as a public health issue. 

LGBT and Dementia: An August 2018 report from the Alzheimer’s Association and SAGE identifies unique challenges for LGBT community facing Alzheimer's and other dementias. The brief outlines the distinct issues that arise when Alzheimer's disease, sexual orientation, and gender identification and expression intersect, allowing advocates and care providers to better meet the needs of LGBT elders and their caregivers facing dementia.

The 2018 Dementia Care Practice Recommendations define quality care across all care settings and throughout the disease course. They are intended for professional care providers who work with individuals living with dementia and their families in residential and community based care settings. Recommendations encompass:

  • person-centered care,

  • assessment care and planning

  • supportive and therapeutic environments

  • transitions and coordination of services

  • medical management 

  • ongoing behavioral and psychological symptioms

and other practice criteria. The Practice Recommendations appear in a February 2018 supplement of The Gerontologist. 

A report from UsAgainstAlzheimer’s, Hiding in Plain Sight- Social and Demographic Trends That Will Exacerbate the Impact of Alzheimer’s, is a frank look at the capacity of the U.S. health system to cope with projected incidence of the disease. [Note that report was written by Nicholas Eberstadt, Ph.D., of the American Enterprise Institute.] Separately, the organization released an issue brief on Alzheimer’s toll on veterans: Veterans and Alzheimer’s: Meeting the Crisis Head On - which looks at the unique challenges among those who served in the military.

2017 Alzheimer’s Disease Facts and Figures — updated report on the prevalence, mortality, morbidity, costs of care of Alzheimer’s among the U.S. population and the toll on family caregivers 

A February 2014 report from Alzheimer's Disease International and The Compass Group,  Nutrition and Dementia, investigates whether the right nutrition might help the millions worldwide with this disease. Researchers found that malnutrition — or what they call under-nutrition — was a major problem; 20-45 percent of those with dementia experience "significant" weight loss over a year. The report also looks at dietary factors across the lifespan that may affect onset of dementia later in life. For more information on how to cover nutrition and aging, check out Melinda Hemmelgarn's tip sheet. 

A November 2013 data brief from the National Center for Health Statistics compares residential care communities with and without special dementia care units in 2010. About 4 in 10 residents (42 percent) living in residential care communities had Alzheimer’s disease or another dementia. Some states have specific requirements for residential care for these patients such as locked doors, and specially trained staff.

Among the major findings:

  • 17 percent of residential care communities in the U.S. Had special dementia care units in 2010

  • Beds in these special units accounted for 13 percent  of all residential care beds

  • Facilities with special dementia care units were more likely to be chain-affiliated and built specifically as a residential care community, and less likely to be certified or to participate in Medicaid.

  • At least 7 out of 10 residential care communities with dementia special care units had features such as specially trained staff (88 percent), an enclosed courtyard (82 percent), doors with keypads or electronic keys (79 percent), and locked exit doors (76 percent).

  • More residential communities with dementia care units were located in the Northeast or a metropolitan statistical area and less likely to be situated in the western U.S.

There are some helpful charts to put the data in visual perspective. Reporters may want to see how local residential facilities compare to the national data, or use these figures in combination with a story like this one from KSWB-San Diego – on how a daughter decided her parents needed to move to a care facility.

The government’s Alzheimer’s Disease Education and Referral Center is a rich resource for reporters writing about this issue. 

The Alzheimer’s Association also disseminates lots of information, including topic sheets and brochures about dementia.  

The Fisher Center for Alzheimer’s Research Foundation publishes a list of medical providers involved in caring for patients with dementia, available by ZIP code. 

National Plan to Address Alzheimer’s Disease

Alzheimer’s Foundation of America

Aging & Disability Resource Center /Alzheimer’s Disease and Related Dementias Toolkit

Alzheimer’s Disease: State Fact Sheets

National Institute of Neurological Disorders and Stroke

Alzheimer’s from the Frontlines: Challenges a National Alzheimer’s Plan Must Address, report by the Alzheimer’s Association

Dementia Capability Toolkit

Types of Dimentia

NINDS Multi-Infarct Dementia Information Page

Diagnosis of Alzheimer's Disease and Dementia

This fact sheet provides the high points in Alzheimer’s Disease Diagnosis.

This series of videos from Johns Hopkins includes conversations with family members that offer ideas and advice for Alzheimer’s and dementia patient caregivers.

National Alzheimer’s Project Act

In January 2012, the Dept. of Health and Human Services released its draft framework for a national plan to address ADRDs.

The Alzheimer’s Association reports that in 2010 nearly 15 million Alzheimer’s and dementia caregivers provided 17 billion hours of unpaid care valued at $202 billion. Costs for government programs and private insurers will soar in the years ahead as the Alzheimer’s Association predicts.

Workforce issues and associated costs are documented in The Institute of Medicine report Retooling for an Aging America and Caring in America:  A Guide to America’s Home Care Workforce.

Some useful sources for journalists are available from the Alzheimer’s Foundation of America’s membership list that helps journalists locale an expert in his/her city/region.

This is another list of useful sources for policy and/or research.

See more sources, publications and resources in the tip sheet "What reporters should know about Alzheimer’s and related dementias."

Place and Brain Health Equity: A report from the Urban Institute and Us Against Alzheimer’s uses data from the National Alzheimer’s Disease Index to analyze the county-level impacts of dementia and explores the social inequities present in counties highly impacted by Alzheimer’s among Black and Latino people. The report calls for an increased focus on understanding the relationship between place, the social determinants of health, and dementia risk to promote brain health equity across the lifespan.

Anti-aging medicine

Adverse Events Associated with Testosterone Administration

Latest research on Resveratrol

National Institute on Aging began a national trial of testosterone replacement in healthy men in 2009

There are also some books and reports in this field.

Santiago Toledo (M.D., medical director, Orthopedic Rehabilitation Program, Rehabilitation Institute of Chicago) talked about the trends & challenges in rehabilitation medicine in a presentation.

Anthony Atala (M.D., director, Wake Forest Institute for Regenerative Medicine; chairman, department of urology, Wake Forest School of Medicine) explained the history and specifics of regenerative medicine and tissue regeneration, helping the assembled journalists better understand this growing field.

Get more tips on covering the anti-aging movement from reporter Arlene Weintraub.

The American Academy of Anti-Aging Medicine: Focuses on topics such as anti-aging foods, fitness, lifestyle and environmental impact, along with news of more traditional clinical research and treatment. AAAM also publishes Longevity Magazine, a free e-journal. Reporters may wish to monitor discussion forums for consumer-focused article ideas.

Antibiotics

Antibiotic Stewardship in Long Term Care Facilities — from Pew Trusts Antibiotic Resistance project — important and timely backfround information and analysis on the challenges of treating infections in nursing homes. Well sourced, with links to relevant studies.

Assisted living

National Center for Assisted Living Facts & Figures: A page full of vetted sources for information about assisted living, including number of residents, their characteristics,  cost & payment breakouts.

Center for Excellence in Assisted Living:  A collaborative of 10 national organizations that promotes current resources, research, training, cases studies, consumer information and other materials to foster and promote quality improvement in assisted living. They provide a forum to discuss issues, technical expertise for policy and research initiatives, and encourages study of gap areas affecting this sector. participating organizations include Leading Age, the Alzheimer's Association, the National Center for Assisted Living, NASUAD, the Society for Post-Acute and Long Term Care Medicine.

Biology and genetics

Here are a couple of presentations from AHCJ annual conferences.

George M. Martin (M.D., professor emeritus, Department of Pathology, University of Washington; adjunct professor of genome sciences (retired) and director emeritus of University of Washington Alzheimer’s Disease Research Center) presented an "Introduction to the biology of aging" discussed the genetic basis for aging and potential related research.

Matt Kaeberlein (Ph.D., assistant professor, Department of Pathology, University of Washington) explained the evolutionary and physiological basis for aging in the presentation "Programmed aging." He also explained possible methods to slow aging or delay aging-associated diseases.

Peter Rabinovitch (M.D., Ph.D., director, University of Washington Nathan Shock Center for Excellence in the Basic Biology of Aging) delivered a presentation titled "'Wear and tear' with aging: The free radical theory of aging." Rabinovitch's presentation laid out both sides of the discussion surrounding the free radical theory of aging, one of the oldest, most popular and most contentious fields in the study of aging.

At Health Journalism 2009, Carl Eisdorfer (M.D., Ph.D., Knight professor and director, University of Miami Center on Aging) shared his "Observations on aging" as part of the "Biology of aging" panel. Eisdorfer's presentation covered a wide range of topics, from the reasons for the aging of the American population to general life lessons.

Brain health

Brain Health Data: The National Alzheimer’s Disease Index is a public health tool that aggregates Medicare data and enables visualization and analysis of Alzheimer’s health statistics by geography and by demographics. Analyses include county-level impacts of dementia and can help pinpoint some of the social inequities among Blacks and Latinos present in counties highly impacted by Alzheimer’s

Cancer

Researchers from the University of Pennsylvania Perelman School of Medicine compared the health care experience for cancer patients older than 65, in Canada, Belgium, Germany, England, the Netherlands, Norway and the United States. They examined several clinical measures during the final six months of life.

Chronic pain/disease

Chronic Disease Indicators for older adults: The chronic disease indicators (CDI) are uniformly defined state and selected metropolitan-level data for chronic diseases and risk factors that have a substantial impact on public health. They were developed by consensus among CDC, the Council of State and Territorial Epidemiologists (CSTE) and the National Association of Chronic Disease Directors (NACDD). These indicators are essential for surveillance, prioritization, and evaluation of public health interventions. 

 The CDI is the only integrated source for comprehensive access to a wide range of indicators for the surveillance of chronic diseases, conditions, and risk factors at the state level and for selected large metropolitan areas, according to the CDC. They include 124 indicators in 18 topic groups: alcohol; arthritis; asthma; cancer; cardiovascular disease; chronic kidney disease; chronic obstructive pulmonary disease; diabetes; immunization; nutrition, physical activity, and weight status; oral health; tobacco; overarching conditions; and new topic areas that include disability, mental health, older adults, reproductive health, and school health.

For the first time, CDI includes 22 indicators of systems and environmental change. A total of 201 individual measures are included for the 124 indicators, many of which overlap multiple chronic disease topic areas or are specific to a certain sex or age group.

American Chronic Pain Association

American Academy of Pain Medicine

American Society of Anesthesiologists

Baylor Health Care System Pain Management Center (also check whether your local health system has a pain management center)

Betty Ford Center Pain Management Program

Agency for Healthcare Research & Quality Pain Management Practice Guidelines

Cognitive aging

Cognitive Aging: Progress in Understanding and Opportunities for Action: Forgetfulness at older ages is often equated with a decline in cognition, or cognitive aging — a public health issue that goes beyond memory lapses and one that can have significant impacts on independent living and healthy aging. This IOM study examines this decline. It assesses public health dimensions of cognitive aging with an emphasis on definitions and terminology, epidemiology and surveillance, prevention and intervention, education of health professionals, and public awareness and education. 

Communicating with older adults

California Assisted Living Association Age-Friendly Language Guide — What we say and how we say it can either be age-friendly or ageist. Language matters and the guide provides tips for keeping your words and framing age-friendly.

Communicating with Older Adults: Recognizing Hidden Traps in Health Care Decision Making —  An introduction to common heuristics (mental shortcuts) and biases (predictable systematic errors in reasoning) that could affect health care decisions made by older adults, health care providers, and caregivers. intended for physicians, physician assistants, nurses, pharmacists, psychologists, social workers, and other health care practitioners who seek to have the best possible interactions with older patients. Understanding the various heuristics and biases that affect our thinking can lead to more informed and productive decisions. Important read for journalists too —  as our own biases can affect how we approach coverage of aging.

ICAA's Guidelines for effective communication with older adults (PDF, 223 KB) — The International Council on Active Aging White Paper. The ICAA wants to change the way older adults are perceived, by changing the language we use and the messages we send about them. This white paper aggregates consensus opinion of stakeholders and organizations about attitudes, words and images, and offers specific recommendations and guidelines  for messaging, print and in-person communication.

COVID-19

The New York Times COVID-19 Long Term Care Facility Tracker: The New York Times has been putting together its own database of coronavirus cases and deaths at long-term care facilities for older adults. These include nursing homes, assisted-living facilities, memory care facilities, retirement and senior communities and rehabilitation facilities, which provides a better picture of infections and deaths among older adults in all facilities; CMS data is limited to nursing homes. The Times’ data includes cases and deaths by state for 12,000 facilities. While about 11% of cases have occurred in LTC facilities, the death rate is a whopping 43% — totalling about 54,000 residents and workers.  According to the Times analysis, “The median case fatality rate — the number of cases divided by the number of deaths — at facilities with reliable data is 17 percent, significantly higher than the 5 percent case fatality rate nationwide.”

The Centers for Medicare & Medicaid Services (CMS) is now posting data about COVID-19 vaccine booster shots administered to nursing home residents and staff on the Medicare.gov Care Compare website. The data will show resident and staff booster rates at the facility level and will include national and state averages. More information can be found on the CDC nursing home dashboard.

Caregiving

American Association of Caregiving Youth More than a million children under 18 care for a parent, grandparent or other relative with a disability or illness. AACY's goal is to increase awareness and provide support services for youth caregivers and their families by connecting them with healthcare, education and community resources. AACY says they are the only organization in the U.S. dedicated solely to addressing caregiving youth issues.

The National Alliance for Caregiving issued a 2018 report: From Insight to Advocacy: Addressing Family Caregiving as a National Public Health Issue. The report describes family caregiving and the major caregiving issues affecting public health, including actions that can be taken specifically by state and local coalitions, health systems, and policymakers. It also cites common data sources, identifies barriers to providing care within the aging network, and offers strategies on what caregiving advocates can do to get engaged.

Atlas of Caregiving: This project of the Robert Wood Johnson Foundation, explores the everyday practice of family caregiving; their research applies new methods to collecting, analyzing, and presenting detailed contextual data to address caregiving questions. Examining what the data implies, and sharing insights widely, on how to better inform caregivers, and the policies, products, programs, and services intended to support them? What can, and should, communities, employers, entrepreneurs, health and policy professionals, or technologists do differently, or the same?

Caring Across Generations Preparing for the  Elder Boom — white paper on solutions for long term services and supports: how do we better provide long-term services and supports (LTSS) for our aging population and people with disabilities? This white paper outlines the gaps in coverage and lack of sufficient care resources for older Americans, people with disabilities, the family members that support them, and the care workforce necessary to create family-centered caregiving system built for the 21st century.

Family Caregiver Council Resources: The Family Caregiver Council, a coalition of 13 national family caregiver organizations and other experts launched a new set  of resources designed to help the estimated 44 million family caregivers in the U.S. learn more about issues ranging from housing and transportation to hiring outside help. The goal is to provide a one-stop website that can help caregivers learn more about specific family caregiving issues they may be experiencing, how to better take care of themselves as well as their loved ones. 

Valuing the Invaluable: 2015 Update: This AARP Public Policy Institute report on the price of unpaid family caregiving finds that in 2013, about 40 million family caregivers in the United States provided an estimated 37 billion hours of care to an adult with limitations in daily activities. The estimated economic value of their unpaid contributions was approximately $470 billion in 2013, up from an estimated $450 billion in 2009.

Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions, United Hospital Fund and AARP Public Policy Institute
This new report documents demanding challenges, including high levels of self-reported depression among family caregivers who provide complex chronic care to people who also have cognitive and behavioral health conditions.

"Family Caregivers are Wired for Health," Pew Internet & American Life Project (June 2013)
Nearly 4 in 10 (39 percent) of U.S. adults are caring for someone with a significant health condition, including caring for many older adults with multiple chronic conditions. As this study found, the Internet plays an increasingly important role in helping family caregivers manage care, get information, and find support.

Cardiovascular disease

AHA Statistical Update Heart Disease and Stroke Statistics
2013 Update; A Report From the American Heart Association

CDC Interative Atlas for Heart Disease and Stroke
County-level maps of heart disease and stroke, along with maps of social environmental conditions and health services for the entire United States or for a chosen state or territory. Congressional boundaries and health care facilities can be added with an overlay.

Global Cardiovascular Infobase
Profiles of Cardiovascular and Cerebrovascular Diseases in the World is a collaborative effort headed by the World Health Organization. It provides cardiovascular data on demographics, mortality, morbidity, risk factors and related health care are linked to country maps.

2012 Chartbook on Cardiovascular, Lung, and Blood Diseases (NHLBI)

American Heart Association Interactive Cardiovascular Library
Watch animations about a variety of cardiovascular conditions, treatments and procedures.

National Heart, Lung and Blood Institute’s List of Spokepeople  includes a brief bio and area of expertise. Contact the the Communications Office at nhlbi_news@nhlbi.nih.gov or 301-496-4236

American Heart Association
National media can call 214-706-1173; local media is asked to contact their local/state office (use the dropdown menu)

Becker’s Hospital Review of 25 top Cardiology Programs

Media-friendly cardiologists

Thomas Bashore, M.D., Duke University Medical Center; specialist Adult Congenital Heart Disease, Structural Heart Disease; 919-684-2407 (office);  Duke Media Relations: Sarah Avery; 919-660-1306; sarah.avery@duke.edu

Nieca Goldberg, M.D., NYU Langone Medical Center; specializes in cardiovascular disease in women. Media contact: Jim Mandler, senior director for media relations, health, clinical, and research; 212-404-3525; Jim.Mandler@nyumc.org

Steven Nissen, M.D., chairman of the Robert and Suzanne Tomsich Department of Cardiovascular Medicine, Cleveland Clinic, past president, American College of Cardiology. 216-444-6697 (office); media relations: 216-444-0141

James Weiss, M.D., chief, Department of Medicine, Cardiology, UCLA Ronald Reagan Medical Center, Los Angeles; 310-825-8811 (office).

Gregg Fonarow, M.D., director, Ahmanson-UCLA Cardiomyopathy Center, CHAMP - Cholesterol, Hypertension, and Atherosclerosis Management Program, clinical co-chief, Cardiology, UCLA Medical Center; 310-825-8816 (office). gfonarow@mednet.ucla.edu. Media contact: Rachel Champeau, 310-794-2270; rchampeau@mednet.ucla.edu

Well Spouse Association: Advocates for and addresses the needs of individuals caring for a chronically ill and/or disabled spouse/partner. They offer peer-to-peer support and educate health care professionals and the general public about the special challenges and unique issues "well" spouses face every day. Services include a national network of support groups, mentoring program, regional respite weekends, and connecting caregiver spouses with resources to help them and their families cope with the emotional and financial stresses associated with chronic illness and/or disability.

Centenarians

New England Centenarian Study, billed as the longest and largest study of people over age 100, began in 1995 as a population-based study of all centenarians living within eight towns in the Boston area. Read about the top-level findings, explore sub-studies and learn about some of the participants’ stories. Website includes a staff list for further followup.

Clinical Diagnosis of Osteoporosis

This is a position paper from the National Bone Health Alliance Working Group, a public-private partnership of 56 partners from the government, nonprofit, and for-profit sectors collectively promoting bone health and disease prevention, improved diagnosis, treatment and enhanced research. They recommend  that postmenopausal women and men aged 50 years should be diagnosed with osteoporosis if they have a demonstrable elevated risk for future fractures based on specific bone density measurements, called T-scores, or have already sustained specific types of fractures. This conflicts with the recommendations of the U.S. Preventive Services Task Force, which recommends screening for women at age 65, or younger if there are known risk factors.

CMS Fast Facts

CMS has released a new quick-reference statistical summary on annual CMS program and financial data. The November fact sheet includes updates on Medicare and Medicaid populations; Medicare deductibles, coinsurance, and premiums for 2015; Medicare FFS persons served and payments by type of service (calendar year 2013); Medicare Part D utilization and expenditures (calendar year 2013); Medicare prepaid contracts (October 2014); Medicaid beneficiaries and payments by selected type of service (fiscal year 2011); and preliminary CMS financial data (fiscal year 2014).

More detailed data is available from the Medicare & Medicaid Statistical Supplement and the CMS Statistics Reference Booklet.

Creativity

National Center for Creative Aging

EngAGE   (provides arts programs onsite in senior housing communities in Los Angeles area)

Elders Share the Arts (Brooklyn, N.Y.)

Center for Elders and Youth in the Arts (San Francisco Bay area)

Alzheimer’s Poetry Project (Santa Fe, New Mexico)

Arts for the Aging (Bethesda, Maryland)

Songwriting Works (Port Townsend, Washington)

The Seasoned Performers:  A New Stage in Life (Birmingham, Ala.)

Lifetime Arts:  at the intersection of aging and the arts (New Rochelle, N.Y.)

“The Creativity and Aging study” by Gene Cohen, 2006

Creativity and Aging:  Best Practices,” National Endowment for the Arts, 2006

Demographics

Aging and Health Datagraphic: from Health Affairs, a visual look at how well older adults achieve goals like aging in place, ability to handle daily tasks of living, and more. (AHCJ members get free access to Health Affairs content as a member benefit)

Administration for Community Living (ACL: Population estimates of those 60 by state). The breakouts include on race/gender/institutionalization, among other estimates. Search reports and information from 2006-2014. This is a good resource to help spot trends. 

Diabetes

NCHS Data Brief: Diabetes: Nearly 10 percent of Americans and 21 percent of adults 65 and over have diabetes. The National Center for Health Statistics has issued a data brief detailing the use of health services by age group. Not surprisingly, the use of health services, medication, and complications increases with age.

Direct care workers

PHI reports on home care: Annual data on the direct care workforce, including this brief on home care workers and this brief on nursing assistants employed in nursing homes. Among the 2018 findings:

  • About 2.1 million home care workers and nearly 600,000 nursing assistants working in nursing homes are supporting older people and people with disabilities nationwide.

  • Home care workers earn a median wage of $11.03 an hour and $15,100 a year, while nursing assistants earn a median wage of $12.84 an hour and about $21,200 a year.

  • Nine in 10 home care workers and nursing assistants are women; more than half (60 percent and 55 percent, respectively) are people of color; and over one quarter (29 percent and 20 percent, respectively) are immigrants.

  • One in five home care workers and one percent of nursing assistants live in households below the federal poverty line — compared to 7 percent of all U.S. workers.

Direct Care Alliance  

Center for Personal Assistance Services   

National Direct Service Workforce Resource Center

PHI 

PHI National Clearinghouse on the Direct Care Workforce

National Association of Health Care Assistants

Caring Across Generations

National Domestic Workers Alliance

National Private Duty Association

Private Duty Homecare Association

Disabilities

Vision Problems in the U.S. from Prevent Blindness: Tracks the prevalence of adult vision impairment and age-related eye disease in America.

Older Americans With a Disability: 2008–12: Nearly 16 million older adults have at least one disability. Data was collected from the American Community Survey (ACS) on six types of disability: hearing, vision, cognition, walking, self-care, and independent living. People who reported any one of the six disability types are considered to have a disability. Data was compiled by the U.S. Census Bureau. The report was commissioned and funded by the National Institute on Aging of the NIH. It is the first Census report on disabilities among older people and looks at disability status by age, gender, marital status, education and poverty status.

Disaster planning

Emergency Preparedness for Elderly People - from the National Caregivers Library —  a list of supplies to have on hand and what to do before, during, and after a major disaster like a hurricane or flood, hits. 

Disparities

The National Caucus & Center on Black Aging, Inc. — one of the country's oldest organizations dedicated to aging issues and the only national organization devoted to minority and low-income aging, especially those affecting African Americans 50 and older

Serious illness late in live: the public’s experiences: The Kaiser Family Foundation (KFF) conducted large scale nationally representative telephone survey to better understand people’s expectations about later life and efforts they’ve taken to plan for if they become seriously ill.  Key takeaways: 

  • Many people report that they have not yet taken steps to plan for if they become seriously ill, although they are aware and understand that illness may affect them as they get older.

  • Older black adults are much less likely than others to report having written documents outlining wishes or designating a health care proxy. People who are Hispanic are more apt to report financial challenges and uncertainty about late life and serious illness than black and white adults.

  • Some seriously ill older adults say they are not getting enough needed help. Much of the public rates the U.S. health care system poorly in terms of the care it provides to older people with serious health needs, but most of those who are experiencing serious illness have more positive impressions.

National Healthcare Quality and Disparities Report - 2016 chartbook from the Agency for Healthcare Research and Quality (AHRQ). includes a summary, charts and graphs focusing on quality and disparities across measures of effective treatment. A PowerPoint slide presentation is also available.

Drugs and devices

Rx Price Watch report on specialty prescription drugs from AARP,  which found that the average annual price for a single specialty drug used on a chronic basis is now nearly $79,000, compared to $27,824 in 2006. According to an analysis by the group’s Public Policy Institute, The prices of widely used specialty prescription drugs grew more than three times faster than general inflation in 2017, and are more than three times the median Medicare beneficiary’s annual income ($26,200). Many of these drugs are used by older adults for managing conditions like cancer and rheumatoid arthritis.

NCHS Brief: Strategies Used by Adults to Reduce Their Prescription Drug Costs: United States, 2013:
This brief looks at how U.S. adults attempted to reduce costs of prescription drugs through techniques like not taking or filling prescriptions as prescribed, cutting pills in half, or using alternate therapies. The report highlights age and socioeconomic breakdowns.

DrugWatch: A continually updated resource and database of recalled medical devices,  new information about research breakthroughs, clinical trials, recalls, and warnings from the FDA. Patient advocates and  and assistance with filing legal paperwork are available to consumers who may have been harmed by a device or drug.

Federal agencies

Veterans Rural Health Resource Centers: This is an excellent starting point for any reporter covering the health of older veterans in rural America. These Office of Rural Health (ORH) field-based satellite offices serve as hubs of rural health care research, innovation, and dissemination. They were established to:

  • Improve understanding of the challenges faced by veterans living in rural areas.

  • Identify disparities in the availability of health care to veterans living in rural areas.

  • Formulate practices or programs to enhance the delivery of health care to veterans living in rural areas.

  • Develop special practices and products for the benefit of veterans living in rural areas and for implementation of such practices and products in the Department system-wide.

Centers are located at host VA medical centers in Iowa City, Iowa; Salt Lake City; White River Junction, Vt., Gainesville, Fla; and Portland, Ore.

new Wiki from the Reporters Committee for Freedom of the Press now available in beta. As this article in Columbia Journalism Review explains, it’s a collaborative effort to make understanding and filing FOIAs a little easier and more bearable by pooling everyone’s shared wisdom. there’s also a page for just about every federal agency, including contact info, response time, fees and agency involved cases. a forum provides opportunity to discuss current efforts and get advice from other reporters. 

Elder abuse

National Adult Maltreatment report 2016 - From the Administration for Community Living, the first report of a series based on data from the first year of the National Adult Maltreatment Reporting System (NAMRS). NAMRS is a voluntary data reporting system collecting data from state and local Adult Protective Services systems, which collects national data on the abuse of older adults and adults with disabilities.

You Only Pray that Somebody Would Step In: Mapping the Gaps Between Expert and Public Understandings of Elder Abuse in America, a report from the Frameworks Institute. This report is part of a broader effort from the Frameworks Institute to reframe public understanding of elder abuse. The report analyzes qualitative data to examine patterns of public thinking and understanding of the issue with those of experts on elder abuse.

National Center on Elder Abuse

National Committee for the Prevention of Elder Abuse

Elder Justice Coalition

Center of Excellence on Elder Abuse & Neglect, University of California, Irvine

International Network for the Prevention of Elder Abuse

National Adult Protective Services Assn.

National Academy of Elder Law Attorneys

Elder Justice Act

GAO Report (March 2011): Elder Justice

GAO, Nov. 2012 report:  Elder Justice:  National Strategy Needed to Effectively Combat Elder Financial Exploitation

End-of-life care

End-of-life discussions: Perspective from a nurse who is a patient: Amy Berman – a nurse, a nationally recognized expert in care of the aged and senior program officer at the John A. Hartford Foundation – has a fatal form of breast cancer. She recently wrote eloquently for The Washington Post about why she feels the advanced-care planning conversations she has had with her health-care team have been so important. CMS will soon decide whether or not to pay doctors and other health care providers for these kinds of conversations about end-of-life planning. Berman's perspective is interesting as reporters prepare to cover the decision.

The National Hospice and Palliative Care Organization publishes a list of resources here. 

The Center to Advance Palliative Care

The presentation from Rosemary Gibson, author of The Treatment Trap and Wall of Silence, offers 10 points on end-of-life care and health reform.

Ethnic Aging

Resource Centers for Minority Aging Research (RCMAR) — this list from the National Institute of Aging provides information on various research centers in this specialty and includes the principal investigators and contact information. RCMARs promote diversity in minority aging research and encourage a focus on disparities and the well-being of minority older adults. Reach out to one if you’re reporting on these topics.

Stanford School of Medicine Ethno-Med: The Stanford School of Medicine provides learning modules for the thirteen major ethnic groups in the U.S., from Alaskan Natives to Vietnamese-Americans. Each module covers demographics, culturally appropriate care, access and utilization. While this site is skewed towards health professionals, journalists can quickly get up to speed on current education about ethnic-oriented aging.

Evidence-based policy

Addressing the Health Needs of an Aging America: New Opportunities for Evidence-Based Policy Solutions. A comprehensive policy brief from The Stern Center for Evidence-Based Policy, University of Pittsburgh, which they say is a first-of-its kind effort to systematically map health policy recommendations for the aging to the body of research evidence. A  a multidisciplinary team of researchers conducted a two-phase study to identify opportunities for policymakers seeking to improve the cost and quality of healthcare for the aging. researchers conducted a scoping study and policy scan to identify unique stakeholder policy recommendations and studies related to the health of the aging population. This was distilled into 10 policy categories, and further divided into 75 subtopic areas.

Exercise

Exercise is vitally important for older adults.  Learn about the National Institute on Aging’s Go4Life exercise initiative for older adults. 

See what the U.S. Centers for Disease Control and Prevention has to say about strength training for older adults.

There are some communities and organizations that experimented with programs designed to promote exercise, including:

Geriatrics

There are a couple of studies focusing on super-aging problems:

  • Emily Rogalski, Ph.D., assistant research professor, Cognitive Neurology and Alzheimer's Disease Center, Feinberg School of Medicine, Northwestern University explains the background and construction of one major study of super-agers in this presentation.

  • Michael Province, professor and director, Division of Statistical Genomics, Washington University School of Medicine explores the role of genetics in aging, and efforts to track to the responsible genes, assuming they exist in this presentation.

American Geriatrics Society

American Association for Geriatric Psychiatry

Section on Geriatrics, American Physical Therapy Association

U.S. News & World Report's Best Hospitals: Geriatrics

Veterans Administration: Office of Geriatrics and Extended Care

Geriatrics Workforce Policy Studies Center

California Council on Gerontology and Geriatrics

2005 White House Conference on Aging

The Grey Literature Report from the New York Academy of Medicine: According to NYAM, "Grey literature" is the term for non-commercially published documents, such as reports, technical documents, clinical proceedings, market research, etc. that are not easily accessible by the public. The site offers many links to association, NGO, government healthy aging and prevention documents as well as resource links to policy centers and databases.

Global aging

Chinese Aging Studies at the RAND Center for the Study of Aging facilitates collaborative research with Chinese scholars on issues of population aging in China. Includes links to numerous journal articles on the topic. 

Global health and aging — 2018 report from WHO looks at changing demographics, longevity throughout the world and how various nations are addressing the needs of their increasingly aging population.

Global, regional, and national incidence, prevalence, and years lived with disability for 301 acute and chronic diseases and injuries in 188 countries, 1990–2013: a systematic analysis for the Global Burden of Disease Study 2013.

A new multi-collaborator report looks at the shift in demographics and burden of disease from 1990-2013. While outbreaks of acute diseases like MERS and SARS make headlines, the real issue among the aging global population is chronic, debilitating disease — which requires more attention and effort from health systems around the world. Full article available for AHCJ members from Science Direct.

Webcast: A report from the World Economic Forum on key challenges, solutions & opportunities

AHCJ WebcastFebruary 2013
One key issue addressed at the recent World Economic Forum was the rapidly increasing global aging population; and how to prepare for its profound impact on global health, as well as the direct economic, social and political implications.

Global experts from the WEF Global Agenda Council on Ageing led this discussion in Davos and presented a new report outlining key challenges/opportunities associated with global aging, including how to improve healthy aging through the innovation of global health systems and investment in long-term health options; as well as specific initiatives to seize the social and economic opportunity created by the aging population.  

This webcast featured leaders from the WEF Council on Ageing discussing these topics and sharing specific outcomes from their discussion in Davos.

Healthy aging 

White House Conference on Aging Policy Brief: Healthy Aging is the first of what will be several upcoming briefs on aging issues in a run up to the 2015 conference this summer. Other briefs will include including long-term services and supports, elder justice, and retirement security. 

"Fostering Engagement and Independence: Opportunities and Challenges for an Aging Society" is a special supplement to the Society of Public Health Education journal Health Education & Behavior. The goal is to examine innovative ways of influencing the health and well-being of the growing senior population.

The State of Aging and Health is an interactive map based on the 2004 and 2007 CDC State of Aging and Health reports – map is viewable by region, state, city and MMSA. It examines 15 key indicators of health status, behaviors, preventive care, and injuries of adults 65 in the US. This data provides an excellent baseline for follow-up reporting on any of these measures.

The Healthy Brain Initiative 2013-2018

This report from the Alzheimer's Association and the CDC provides the Public Health Road Map for State and National Partnerships, 2013–2018, outlines how state and local public health agencies and  their partners can promote cognitive functioning, address cognitive impairment  for individuals living in the community, and help meet the needs of care partners. 

Alzheimer's is the sixth leading cause of death in the United States, with an estimated 5 million Americans suffering from the disease in 2013.  By 2050, that number could triple, according to a joint report from the Alzheimer's Association and CDC. In response, the Centers for Disease Control and Prevention  (CDC) established the Alzheimer’s-specific segment of CDC’s  Healthy Aging Program, referred to as The Healthy Brain  Initiative. Several organizations, including the Alzheimer's Association, National Institute on Aging, Administration on Aging, AARP and others, partnered with the CDC to create a road map to guide a coordinated public health response across agencies and organizations.The overall intent of the Healthy Brain Initiative is to better understand the public health burden of cognitive impairment through surveillance; build a strong evidence base for policy, communication, and programmatic interventions for improving cognitive health; and translate that foundation into effective public health practice in states and communities.

Much has happened since the first The Healthy Brain Initiative report was published in 2007. The Alzheimer’s Association and CDC revisited the Road Map with a specific focus on the role and contribution of state and local public health agencies. While federal agencies play a critical role in leading and funding efforts to address Alzheimer’s disease, state and local agencies organize and provide public health services on the ground level.

Download the full report here.

Ideas for coverage:

  • What Alzheimer's initiatives are available in your community?

  • Are there partnerships or programs to report on? What programs are underway by state, county, or city public health departments, local Alzheimer's Associations or other health organizations?

  • Are there local families/caregivers you can profile?

  • What's being done to educate providers and caregivers to spot early warning signs? Can initiatives be integrated into patient centered medical homes?

  • Has the economy forced cuts to senior programs or caregiver support services?

  • What does the public need to know about caring for someone with cognitive decline or promoting good cognitive behavior?

  • Are there any clinical trials or studies underway at local medical/academic institutions?

  • What about emergency/preparedness planning? What plans are in place in your community/city?

  • What are some of the costs of care – unpaid/paid caregiving, lost days of work by care providers, medication, counseling, hospitalizations, cost of programs

Healthcare Equality Index (HEI)

The Healthcare Equality Index (HEI) is the national LGBT benchmarking tool that evaluates healthcare facilities’ policies and practices related to the equity and inclusion of their LGBT patients, visitors and employees. The HEI 2014 evaluates a total of 1,504 healthcare facilities nationwide. Download the 2014 report here.

HIV/AIDS and aging

Coronavirus, COVID-19, and Considerations for People Living with HIV and LGBTQIA People

The AIDS Institute

National HIV/AIDS and Aging Awareness Day – Sept. 18 annually

San Francisco AIDS Foundation

Gay Men’s Health Crisis (New York City)

AIDS Foundation of Chicago

AIDS Community Research Initiative of America

Research Network on HIV/AIDS and the Elderly

Publications

The Body:  Aging & HIV/AIDS

HIV/AIDS and Aging:  Emerging Issues in Research, Care, Treatment and Prevention

National Institute on Aging:  HIV, AIDS, and Older People

CDC:  HIV/AIDS among Persons Age 50 and Older

National Association of Social Workers:  The Aging of HIV

Home health care

How States Use American Rescue Plan Act Funds to Strengthen Home and Community-Based Service Workforce. An interactive map from the National Academy for State Health Policy looks at how states propose using these one-time funds to bolster the workforce that provides home and community based services, such as increasing reimbursement rates, providing new opportunities for professional advancement, and offering recruitment and retention incentives.

Healthy Aging Begins at Home: A report from the Bipartisan policy Center on why housing plays such an important role in the health of older adults and ideas on how to make homes and communities more elder-friendly – from local initiatives to federal policy. Get the full report, infographics and background materials.

Avalere Health released a study, Home Health For America, which analyzes Medicare home health care users. They are generally older than age 75, and three-quarters suffer from four or more chronic conditions. They need more help with ADLs, are generally lower-income, and are more likely to be minorities. Some charts and graphs in the report can be coupled with the Home Health Compare database to provide an interesting snapshot of home care users in your community.

Medicare’s page on home health care. The agency notes that patients have to meet various requirements to qualify for coverage.

Medicare’s home health compare. See how home health agencies in your area stack up on various quality measures.

National Association for Home Care & Hospice

American Association for Homecare: This organization is the lobbying arm for the home care industry in Washington, D.C.

Home Health Care Nurses Association

California Association for Health Services at Home

Home Care Association of New York State - Many states have associations of home care providers.  Do an Internet search for one in your state.

Visiting Nurse Associations of America

Home Care Consumer Bill of Rights: Sen. Al Franken (D-Minn.) proposed this legislation in 2011.

Leading Age: Represents home health, senior housing, and various long-term care providers.

The Food and Drug Administration’s Medical Device Home Use Initiative. As the population ages, more complex medical devices such as ventilators or infusion pumps are being used in home settings.  The FDA launched this initiative in April 2010.

The presentation from Kathleen Kelly, M.P.A., executive director, Family Caregiver Alliance explains the key players in hospital to home, the transitional care model.

Hospice and palliative care

Hospice Medicare Margins: Analysis of Patient and Hospice Characteristics, Utilization, and Cost: Report prepared by the actuarial and consulting firm Milliman, on behalf of the National Partnership for Hospice Innovation (NPHI) highlights several cost and quality differences between for-profit and nonprofit hospices serving Medicare beneficiaries. It found Compared to for-profit hospices, nonprofits

  1. Report higher costs per day for direct patient care

  2. Have fewer patients who discontinue hospice care

  3. Generate lower Part A costs for Medicare in the subsequent 90 days among those patients who do decide to discontinue hospice care.

Palliative Care’s place in the care continuum: This infographic from Georgetown University’s School of Nursing illustrates how providers can explain the differences between curative, palliative, and end-of-life care to patients and their families. According to Jean Farley, D.N.P., R.N., P.N.P.-B.C., assistant professor at Georgetown University School of Nursing and Health Studies, the graphic encourages people to think of palliative care as an umbrella term that includes pain management, hospice, and end-of-life care.

Serious illness late in live: the public’s experiences: The Kaiser Family Foundation (KFF) conducted large scale nationally representative telephone survey to better understand people’s expectations about later life and efforts they’ve taken to plan for if they become seriously ill.  Key takeaways: 

  • Many people report that they have not yet taken steps to plan for if they become seriously ill, although they are aware and understand that illness may affect them as they get older.

  • Older black adults are much less likely than others to report having written documents outlining wishes or designating a health care proxy. People who are Hispanic are more apt to report financial challenges and uncertainty about late life and serious illness than black and white adults.

  • Some seriously ill older adults say they are not getting enough needed help. Much of the public rates the U.S. health care system poorly in terms of the care it provides to older people with serious health needs, but most of those who are experiencing serious illness have more positive impressions.

Hospice Compare Fact Sheet (October 2017) - from CMS; provides patients, families and caregivers a a snapshot of the quality of care each hospice provides. Comparison metrics include the percentage of patients that are checked and treated for pain, or who are asked about their preferences for life-sustaining treatment and the overall quality of care provided by each facility.

Health Literacy and Palliative Care workshop summary
The National Academies of Sciences, Engineering and Medicine (formerly the Institute of Medicine) Roundtable on Health Literacy convened a one-day public workshop to explore the relationship between palliative care and health literacy and the importance of health literate communication in providing high-quality delivery of palliative care. This report summarizes the discussions that occurred throughout the workshop and highlights the key lessons presented, practical strategies, and the needs and opportunities for improving health literacy in the United States.

This hospice consumer guide from The Washington Post offers information on costs, services, profits, and various other comparison tools. CMS won’t have “hospice compare” data ready for several more years, so The Washington Post stepped in and created their own Consumer Guide to Hospice. The database is searchable by state, county and hospice name. It provides consumers with basic information such as accreditation, per-patient spending on care, years of operation, crisis care, and live discharges. 

A study, "A Controlled Trial to Improve Care for Seriously III Hospitalized Patients" found many people nearing the end of life are not informed of their treatment options and their doctors are unaware of their preferences for treatment, which contributes to a lower quality of life at the end of life.

According to the Medicare Payment Advisory Commission, in 2009:

  • 1.1 million people received hospice services

  • Medicare spent $12 billion on hospice services

  • 3,500 hospice providers received Medicare reimbursement, a 50 percent increase from 2000; most of the growth has been among for-profit hospice providers

Palliative care

Palliative care is a relatively new addition to the continuum of medical care. Palliative medicine was recognized as a new specialty in 2006 by the American Board of Medical Specialties. The American Academy of Hospice and Palliative Medicine maintains a national directory of physicians who are board certified in palliative medicine.

Hospital-based palliative care

Hospice and Palliative Care Nurses Association

The Center to Advance Palliative Care at the Mount Sinai School of Medicine has a training program to help doctors and nurses establish palliative care programs in their hospitals. Harvard Medical School reports a workforce shortage of 5,000-11,000 palliative care physicians.

Research

A 2010 study published in the New England Journal of Medicine found that people with metastatic lung cancer who received palliative care early in their diagnosis and had less aggressive end-of-life care lived 2.7 months longer than those who received standard treatment.

New developments/trends for reporters to watch

The Office of the Inspector General in the U.S. Department of Health and Human Services and the U.S. Department of Justice crack down on hospices that aren’t following Medicare rules.

Bloomberg News published an investigation of hospices that enrolled people who were not terminally ill, a violation of Medicare eligibility requirements.

Kaiser Health News reported on a whistleblower complaint that was joined by the federal government against a for-profit hospice that allegedly submitted false Medicare claims for non-terminally ill people. The whistleblowers allege their employer offered incentives to employees (massage chairs, trips to exotic locations, etc.) to encourage them to meet aggressive enrollment targets. See the U.S. Department of Justice press release.

These reports are in addition to earlier actions by the Justice Department against hospices for abusing the benefit.

Here are more resources to explore:

Medicare website with information on the hospice benefit  and a report from the Medicare Payment Advisory Commission

Get a list of hospitals with palliative care programs by state or the number and distribution of hospitals with palliative care according to congressional district.

American Academy of Hospice and Palliative Medicine

America’s Care of Serious Illness: A State-by-State Report Card on Access to Palliative Care in Our Nation’s Hospitals

National Palliative Care Research Center

International Association for Hospice & Palliative Care

Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT)

More tips and sources are included in the tip sheet "Reporters' guide to hospice and palliative care."

Hospice Care in America 2013

An annual overview from the National Hospice and Palliative Care Organization (NHPCO), with facts and figures, of important trends in the growth, delivery and quality of hospice care across the country.

Hospital utilization

CMS Data Brief:  Sharp Reductions in Avoidable Hospitalizations Among LTC Facility Residents — Between 2010 and 2015, the hospitalization rate for six potentially avoidable conditions —  bacterial pneumonia, urinary tract infections, congestive heart failure, dehydration, chronic obstructive pulmonary disease or asthma, and skin ulcers decreased by 31 percent for Medicare and Medicaid dually-eligible beneficiaries living in long-term care facilities. That resulted in 133,000 fewer hospitalizations over the last 5 years.

In July 2015, the Agency for Healthcare Research and Quality (AHRQ) released Fast Stats, a new online tool from the Healthcare Cost and Utilization Project that provides access to the latest HCUP statistics from 41 states on numbers of hospital discharges by payer group (Medicare, Medicaid, private insurance, uninsured) and by condition category (surgical, mental health, injury, medical). Reporters can conduct state-by-state comparisons and analyze the effects of Medicaid expansion on hospital utilization levels and payment sources.

ICD-10 Conversion Tool

On Oct. 1, 2015, the United States began using Clinical Modification ICD-10-CM for diagnosis coding and Procedure Coding System ICD-10-PCS for inpatient hospital procedure coding. This tool offers free conversions of codes from the earlier ICD-9 system.

Hospitalizations: Age 85 and older

Many Older Americans Do Not Receive the Recommended Home Health Care After Hospitalization issue brief. 
This joint Lerner Center for Public Health Promotion and Center for Aging and Policy Studies (CAPS) at Syracuse University issue brief discussed the lack of appropriate home health care services for aging populations; a problem especially prevalent in Low-income patients and patients of color. 

According to a new brief from the National Center for Health Statistics (NCHS), the number of adults age 85 and older rose 31% between 2000 and 2010 - from 4.2 million people to 5.5 million. In 2010, they represented 14% of the population age 65 and older. This brief breaks down hospital care for the 85-and-up demographic, examining days of care and number of discharges in comparison to the general population, as well most common causes of hospitalization and the likelihood of hospitalization compared to other age groups. 

Housing

Independent Living

Assisted Living

Memory Care

Continuing Care Retirement Communities (CCRCs)

Skilled Nursing Facilities

Income

The Elder Index – a tool from the National Council on Aging that looks at the true cost of how much seniors need to afford basic living expenses. Reporters can share Elder Index data on the state of senior economic insecurity in your state

The 2019 Elder Index and a companion report, Insecurity in the States 2019, calculates the elder economic “insecurity rate” both nationally and on a state-by-state basis. Researchers tracking the economic security of America’s older adults have found that half who live alone and nearly a quarter of those living in two-person households where both are age 65 or older are unable to afford basic necessities without extra assistance. The new index data and report were produced by the Gerontology Institute at the University of Massachusetts Boston’s McCormack Graduate School.

The Growing Gap in Life Expectancy by Income
Income disparities affect people at every stage of life — including how long they live and how well of they are in retirement. People who are better-educated and earn higher incomes live longer, on average, than those with less education and lower incomes. The gap between high and low earners is widening, according to a September 2015 report from the  The National Academies of Sciences, Engineering, and Medicine.  

The report found that high earners have disproportionately received larger lifetime benefits from government programs such as Social Security and Medicare, primarily because of a longer life span. “The Growing Gap in Life Expectancy by Income”, offers the first comprehensive estimates of how lifetime benefits are affected by the changing distribution of life expectancy and how the growing gap in longevity affects traditional policy analyses of reforms to the nation’s leading entitlement programs.  Skim the contents here or download a complete PDF version here.

Isolation/loneliness

Social Isolation and Loneliness in older adults — The National Academies of Science, Engineering and Medicine (NASEM) consensus reports that one quarter of people 65 and older are considered to be socially isolated, which can significantly impact their mental and physical health and even lead to premature death. The coronavirus pandemic has only exacerbated the problem. This 2020 report summarizes the evidence and its effect on the quality of life in adults aged 50 and older – particularly among low income, underserved, and vulnerable populations. The report includes recommendations on how clinicians can identify those who suffer negative health consequences and target interventions to improve social conditions.

RFF Foundation for Aging Issue Brief: Promoting social and intergenerational connectedness-- isolation and loneliness, especially in older adults, are often interconnected; their causes are multifaceted and complex, often including related challenges like ageism, equity, and poverty. RRF Foundation for Aging has identified four pillars which can address this priority issue.

Addressing Social Isolation for Older Adults from ADvancing States (formerly the National Association of State Units on Aging (NASUA). ADvancing States reports on action taken during the novel coronavirus (COVID-19) crisis to assist state aging and disability agencies in responding to, and meeting the needs of, facility residents and an older adult population sheltering at home. The report is intended to help states and others with creative and thoughtful approaches to social isolation and loneliness in older adults, and to also facilitate sharing and learning across states.

Legal resources

National Center on Law and Elder rights: NCLER works to strengthen the legal services delivery system for older adults through trainings, case consultations, and other resources. A centralized, one-stop shop for legal assistance, NCLER provides Legal Training, Case Consultations, and Technical Assistance on Legal Systems Development. Justice in Aging administers NCLER through a contract with the Administration for Community Living’s Administration on Aging. Check out their resources section for tons of potential story ideas.

American Bar Association (ABA) Commission on Law & Aging

National Association of Elder Law Attorneys

National Senior Citizens Law Center

Center for Elder Rights Advocacy

Dietary Supplement Health and Education Act of 1994

An effort by Sen. Dick Durbin (D-Ill.) to significantly increase government oversight of dietary supplements was voted down

A directory of senior legal aid services in every state

National Association of Senior Legal Hotlines

National Legal Resource Center  (provides legal support to the aging advocacy network)

The Center for Social Gerontology law and aging program

National Consumer Law Center Elder Initiative

AHCJ conference presentation about Washington State’s Death with Dignity Act

National Senior Citizens Law Center: A nonprofit organization focused on protecting the rights of low-income older Americans. The organization uses advocacy and litigation to ensure economic security, health care, rights under federal and state law are maintained – including access to affordable care, expansion of SSI and other income support programs, and ensuring seniors' civil rights are not violated. Several interesting case studies and articles are available on the site, which may provide impetus for local angles or investigation of similar issue.

Lesbian, gay, bisexual, and transgender community (LGBT)

Coronavirus, COVID-19, and Considerations for People Living with HIV and LGBTQIA People

Public Attitudes Toward Aging Sexual and Gender Minorities Around the World
This August 2018 report of survey data from the 2017 ILGA-RIWI Global Attitudes Survey on Sexual, Gender and Sex Minorities highlights the experiences of LGBT older people across the globe. The annual survey gathers and assesses credible global data on public attitudes related to sexual orientation, gender identity, gender expression and sex characteristics, providing a breadth of quantifiable evidence of international public attitudes. IGLA is the The International Lesbian, Gay, Bisexual and Trans and Intersex Association and RIWI is a global survey analysis firm.

LGBT and Dementia: An August 2018 report from the Alzheimer’s Association and SAGE identifies unique challenges for LGBT community facing Alzheimer's and other dementias. The brief outlines the distinct issues that arise when Alzheimer's disease, sexual orientation, and gender identification and expression intersect, allowing advocates and care providers to better meet the needs of LGBT elders and their caregivers facing dementia.

Meeting the Unique Legal Needs of LGBT Seniors, a June 2016 report from Justice in Aging. Aging LGBT adults face unique systemic challenges including greater risk of aging in poverty, ensuring access to partner benefits, discrimination within the health system, and legal or not, trampling on many of the same rights heterosexual seniors take for granted.

Eight policy recommendations for improving the health & wellness of older adults with HIV: The National Resource Center on LGBT Aging has provided the country's first and only technical assistance resource center aimed at improving the quality of services and supports offered to lesbian, gay, bisexual and transgender (LGBT) older adults: expanding medicaid coverage better provider training, and more emphasis on socio-economics and disparities are some of the issues covered.  

The National Resource Center on LGBT Aging serves the often overlooked population of older lesbian, gay, bisexual and transgender adults.

FORGE Transgender Aging Network

Services and Advocacy for Gay, Lesbian, Bisexual and Transgender Elders

The LGBT Aging Project

Diverse Elders Coalition

National Gay and Lesbian Task Force:  Aging

National Center for Lesbian Rights:  Elder Law

American Society on Aging:  LGBT Aging Resources Clearinghouse

The Aids Institute:  HIV/AIDS and Aging Awareness

Old Lesbians Organizing for Change

Publications

The Aging and Health Report:  Disparities and Resilience Among Lesbian, Gay, Bisexual and Transgender Older Adults

LGBT Older Adults in Long-Term Care Facilities

Outing Age 2010:  Public Policy Issues Affecting Lesbian, Gay, Bisexual and Transgender Elders

Longevity

National Academy of Medicine, Global Roadmap for Healthy Longevity — new report says healthy longevity is the state in which years in good health approach the biological life span, with good physical, cognitive, and social functioning, and enables wellbeing across populations. However, major disruptors to healthy longevity include ageism, disease, poverty, pollution, and inequity. Webinar and toolkit also available.

Human Mortality database provides detailed mortality and population data for 40 countries; It’s mostly current through 2017, although some data is older. Information is updated as it becomes available. The main goal of the Human Mortality Database is to document the longevity revolution of the modern era and to facilitate research into its causes. The project is a collaboration between UC Berkeley and the Max Plank Institute in Germany.

Health United States 2017, with a special feature on mortality - CDC’s annual overview of national trends in health statistics. The report contains a Chartbook that presents trends and current information on selected measures of morbidity, mortality, health care utilization and access, health risk factors, prevention, health insurance, and personal health care expenditures. The Special Feature on Mortality examines when, why, and where individuals are dying in the United States. Data on life expectancy at birth are presented by sex, followed by data on death rates by age group. Leading causes of death for each age group are explored to describe mortality trends from infancy to old age. It also examines three causes of death that have contributed to life expectancy losses in recent years: drug overdoses, suicides, and chronic liver disease.

Mortality in the United States 2015
National Center for Health Statistics data brief, released in December 2016, on longevity and death, shows a slight decline from 2014.

The Longevity Revolution: The Benefits and Challenges of Living a Long Life is a book that examines the challenges of our society with a growing aging population.

Longevity gene

Long-term care

National Post-acute and Long-term Care Study (NPALS) — From the CDC’s National Center for Health Statistics. This ongoing study monitors trends in the supply, provision, and use of the major sectors of paid, regulated long-term care services, including residential care community and adult day services sectors, and administrative data on the home health, nursing home, hospice, inpatient rehabilitation, and long-term care hospital sectors. Note - almost all information is in pdf format so reporters interested in crunching numbers will need to contact CDC for access to specific data sets. 

Antibiotic Stewardship in Long-Term Care Facilities
The Pew Trusts Antibiotic Resistance project offers important and timely background information and analysis on the challenges of treating infections in nursing homes. Well sourced, with links to relevant studies.

The Financial Hardship Faced by Older Americans Needing Long-Term Services and Supports - new issue Brief from the Commonwealth Fund - 2019 issue brief from the Commonwealth Fund.
Beneficiaries with high long term services and supports needs have higher Medicare and out-of-pocket spending than those without such needs and are more likely to report that medical care makes up part of their credit card debt. Those with high LTSS needs are also more likely to report trouble paying for food, rent, utilities, medical care, and prescription drugs. Many older Medicare beneficiaries using LTSS are vulnerable to incurring substantial costs. Without an affordable, sustainable financing solution, Medicare beneficiaries with LTSS needs will continue to be at greater risk of delaying necessary care, being placed in a nursing home prematurely, and having to “spend down” into the Medicaid program

Compare Long Term Care Costs Across the United States - from Genworth Financial: The Genworth Cost of Care Survey details the costs of different types of care in various locations. The 2017 survey covered 440 regions across the United States. Released October, 2017. 

State Medicaid Integration Tracker: Published by the National Association of States United for Aging and Disabilities (NASUAD) which keeps tabs on managed long-term services & supports, state demonstration projects and other LTSS activities.

Long Term and supportive care - September 2016 report from McKinsey on how the government, private payers, providers, and technology companies are innovating to address individuals with complex medical and supportive care needs. 

Long-Term Services and Supports: Changes and Challenges in Financing and DeliveryThis Alliance for Health Reform toolkit explains the current LTSS system, trends in the delivery of care and the current policy challenges.

The toolkit includes: 

  • An overview of funding for LTSS

  • Summaries of, and links to, key reports and news articles

  • Contact information for leading experts (current as of June 2015)

Raising Expectations, 2014: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers: In June 2014, AARP, The Commonwealth Fund and The SCAN Foundation  released their second long term care scorecard, a state-by-state breakdown of performance of long-term services and supports that help older adults, adults with disabilities and their family caregivers. The rankings looked at 26 performance indicators within five dimensions of care for each of the 50 states, plus the District of Columbia and classifies them against each other.

With the Balancing Incentive Program, the Affordable Care Act provides states with program funding intended to remove barriers to home-and community-based LTSS. This page explains the program and provides links to proposals from states requesting funding — with detailed program and financials. It provides information on what individual states hope to enact around community-based long-term care services.

LongTermCare.com allows you to look up the cost of various long-term care services by state.   While it’s industry sponsored, the data is useful.  Also included here is information about various state long-term care insurance partnerships.

A survey compares how states do when it comes to providing long-term services and support to vulnerable seniors and people with disabilities.

The National Care Planning Council has a website that offers information about finding long-term care services and planning for long-term care.

The National Council on Aging is an essential resource for all things related to aging. Search by topic for more information at their site. 

National Association of State Long-Term Care Ombudsman Programs

The National Consumer Voice for Quality Long-Term Care  

CompleteLongtermCare.com allows you to look up the cost of various long-term care services by state.   While it’s industry sponsored, the data is useful.  Also included here is information about various state long-term care insurance partnerships.

A guide to long-term care insurance from America’s Health Insurance Plans, an industry source. 

MetLife Mature Market Institute 2011 Market Survey of Long-Term Care Costs. 

Congressional hearings held after the Obama administration terminated a national long-term care insurance program.

Medicare doesn’t pay for custodial care; it only pays for medically necessary care at home or in a skilled nursing facility, under limited circumstances.

See an in-depth look at Medicaid and long-term care.

A 2009 report from the Kaiser Family Foundation: Closing the Long-Term Care Funding Gap: The Challenge of Private Long-Term Care Insurance

Below are some materials on long-term care.

At the Crossroads: Providing Long-Term Services and Supports at a Time of High Demand and Fiscal Constraint is a report from AARP Public policy Institute analyzes challenges facing states as the demand for long term care services and support (LTSS) increases. While some Medicaid-funded services expand under the Affordable Care Act, many other LTSS program budgets are being slashed – like those for transportation, home delivered meals, and senior centers. 

Full report (53 pages); Issue Brief (2 pages) and ChartPak (30 pages).

Median cost of long-term care data table

Genworth Financial updated their tables to reflect the median cost of long-term care by state, and by type as of August 2020 — in-home care, community and assisted living, and nursing home care. Costs are up nearly 4% overall, and higher in some states.

Medicare and Medicaid

Medicare Trends and Recommendations: a summary and analysis of nearly 42,000 questions and issues posed through the Medicare Rights Center’s national consumer helpline and professional email channel during 2020-2021.

Advancing States Medicaid Integration Tracker The State Medicaid Integration Tracker is published bimonthly by Advancing States. It is intended to provide a compilation of states’ efforts to implement integrated care delivery-system models managed long-term services and supports (MLTSS);  state demonstrations to integrate care for dual eligible individuals and other Medicare-Medicaid coordination initiatives; other LTSS reform activities, including:  balancing Incentive Program, Medicaid State Plan Amendments under §1915(i),Community First Choice Option under §1915(k),Medicaid Health Homes.

Medicare spending on socially isolated adults: an AARP Public Policy Institute report finds a lack of social contacts among older adults is associated with an estimated $6.7 billion in additional Medicare spending annually. The study’s findings raise issues for Medicare and public health officials.

Medicare Observation Status Toolkit from the Center for Medicare Advocacy: created to help beneficiaries, families, advocates and providers understand and respond to an “outpatient” Observation Status designation.  The Toolkit contains the CMA's Observation Status InfographicFrequently Asked Questions; A Fact SheetSummary & Stories from their partners in the Observation Coalition; A Sample Notice (the MOON); a Recorded Webinar (slides in the printable .pdf); Beneficiary/Advocate Q&A; and a Self-Help Packet

State Medicaid Integration Tracker: Published by the National Association of States United for Aging and Disabilities (NASUAD) which keeps tabs on managed long-term services & supports, state demonstration projects and other LTSS activities.

Understanding what's next for Medicaid (July 7, 2017): This webcast from the Alliance for Health Policy looks at the potential implications of proposed Medicaid funding changes for at-risk populations - children, the disabled and elderly. Transcript, speakers' presentations and contact list are included.

Impact of Changing ACA Age Rating Structure  a Miliman Research Report, conducted for AARP Public Policy Institute  shows that changing the 3:1 limit on age rating to 5:1 would significantly raise premiums for older adults relative to younger adults, minimally impact overall enrollment, and increase federal spending.

Justice in Aging Issue Brief: How Medicaid funding caps would harm older Americans. Importantly, they could limit medically necessary care.

State Health Care Spending, a May 2016 report from Pew Charitable Trusts. The report examines spending and trends for various programs, from Medicaid to Children’s Health Insurance. It looks at the impact of the Affordable Care Act on spending and roadblocks to comprehensive evaluation. Many elderly are “dual eligibles” – low-income seniors who receive benefits under both Medicare and Medicaid. How states choose to spend Medicaid dollars can directly affect their health and quality of life.

Medicare Trends and Recommendations: An Analysis of 2014 Call Data from the Medicare Rights Center’s National Helpline
In 2014, the Medicare Rights Center’s (Medicare Rights) staff and helpline volunteers fielded more than 17,000 questions and issues through the organization’s national consumer helpline. Callers included over 11,000 Medicare beneficiaries and caregivers across the country. As in previous years, callers were geographically and socioeconomically diverse, and needed help with a wide array of complex Medicare issues.

CMS has released a new Medicare Part D Prescriber Look-up Tool. Data from the 2013 Medicare Part D Prescriber Public Use File can now be easily searched to find information on drugs prescribed by physicians and other practitioners for Medicare beneficiaries. Information available include drug name, number of prescriptions dispensed (including original prescriptions and refills) and drug cost.

On July 28, 2015, CMS released updated Medicare state-by-state enrollment numbers, which show that more than 55 million Americans are covered by Medicare. In comparison, approximately 19.1 million Americans were covered by Medicare in 1966. In 2012, there were nearly 52 million beneficiaries covered by Medicare. The jump in enrollment over the past three years is attributable to the first wave of Baby Boomers retiring. CMS also released state-by-state Medicaid enrollments on a monthly basis. As of May 2015, over 71.6 million individuals were enrolled in Medicaid and the Children’s Health Insurance Program (CHIP) with 12.8 million more gaining coverage since 2013. More information is available on Medicaid.gov. This chart provides stats on enrollment as of May 2015 in the various types of plans.

CMS has released Home Health Compare, which allows consumers to assess quality of patient care star ratings on an agency’s relative performance for 9 of the 29 quality measures. Ratings are calculated using information from patient assessments performed by the HHA and from Medicare claims submitted by the HHA.

The nation’s population of older adults is growing, and a new report from the Kaiser Family Foundation, “The Rising Cost of Living Longer: Analysis of Medicare Spending by Age for Beneficiaries in Traditional Medicare,” predicts a continuation of this upward trend. By 2050, the number of people 65 and over “..will nearly double, the population ages 80 and older will nearly triple, and the number of nonagenarians and centenarians—people in their 90s and 100s—will quadruple.” The KFF report evaluates the implications of this trend for Medicare and the federal budget, and examines how providers will meet the needs of an older population. A Health Affairs companion article provides some analysis for certain findings in the report. 

CMS consumer guide to observational status
An easy-to-understand two-page explanation of what it means to be an in-patient or under observation, and what Medicare will and will not pay for. Although the language is pretty basic, it's a helpful overview of exactly what the price of admission (or no admission) may cost.

The 2014 OIG work plan sets up how the Inspector General's office will scrutinize claims that CMS pays to hospitals, nursing homes, and home care agencies, as well as for prescription drugs, medical equipment and other care services.  Among them: Part A (inpatient claims, such as the two-midnight rule for hospital admissions, high level-therapy at SNFs, interrupted long-term facility stays, new oversight of hospital pharmaceutical compounding, and questionable Part B claims. There is a wealth of potential story ideas within the report, particularly when coupled with available data from Hospital Compare, Nursing Home Compare and Home Health Compare.

Medicare Fact Sheet (Primer) from Kaiser Family Foundation: How much do you know about Medicare? This super-detailed and easy to understand "Medicare at a Glance" primer is almost guaranteed to make you more knowledgeable. Well thought out graphs and charts add to understanding of necessarily dry facts & figures. Go learn something new.

100 FAQs about Medicare 

The Essentials:

What is Medicare

Medicare handbook for members

The finances of Medicare

Projections for growth in Medicare from Congressional Budget Office

Medicare Payment Advisory Commission, June 2011 data book

Medicare, a chartbook, 2010

Medicare, a primer

Medicare: The basics, the politics and the resources

How Medicare Works with Employer-Based Insurance

Out-of-pocket spending by Medicare members:

Health spending by Medicare households

Advocacy groups:

Medicare Rights Center

Center for Medicare Advocacy

National Committee to Preserve Social Security and Medicare

Dual Eligibles: Some seniors have so few resources that they qualify for both Medicare and Medicaid, a joint federal/state program for the poor. An overview of dual eligibles

Community-based Care Transitions Program

Comprehensive Primary Care Initiative  

Health Care Innovation Awards

Independence at Home Demonstration Project  

Innovation Advisors

The Innovation Center chose 73 individuals out of 920 applicants to help spur delivery system reform in their communities and provide expertise in health care finance, health system analysis and other specialties. Their names and affiliations are available online.

Pioneer Accountable Care Organizations (ACOs)

There are several types of ACOs, each with a slightly different twist. In December 2011, the Innovation Center named 32 “Pioneer ACOs” at health care systems throughout the country.

Another type of ACO is already a permanent part of Medicare, within the Medicare Shared Savings Program (MSSP).

Aging Nation: Troublesome Health Care Issues

The 2012 Annual Report of the Boards of Trustees of the (Medicare) Federal Hospital Insurance and Federal Supplementary Medical Insurance Trust Funds

Medication management and adherence

Medication Mangement and Adherence for Older People – a report from the Visiting Nurse Service of New York Center for Home Care Policy & Research

Your Medications: What to Ask  – from the AGS Foundation for Health in Aging

How to Create a Pill Card – from AHRQ

Identifying Medications Older Adults Should Avoid: Updated Beers Criteria (2012) from the American Geriatrics Society

This recent story from ProPublica on the billions of dollars wasted on name-brand prescriptions under Medicare. 

ProPublica’s Prescriber Checkup - a database of physicians and drugs in Medicare Part D

American Society of Consultant Pharmacists: 703-739-1300

Medicare Part D Claims Data database

2014 drug finder: compare prescription drug costs across all Medicare and Medicare advantage plans

2011 Ambulatory Care Health Data from the National Health Interview Survey

Multicultural Aging

The National Caucus & Center on Black Aging Inc.

Minority aging facts: According to the Administration on Community Living (ACL) Racial and ethnic minority populations have increased from 7.2 million in 2007 (19% of the older adult population) to 11.8 million in 2017 (23% of older adults) and are projected to increase to 27.7 million in 2040 (34% of older adults). ACL has updated their profiles of older African American, Hispanic, American Indian and Alaska Native, and Asian American elders; information includes population and projections, disabilities, mortality and insurance, as of 2017.

Diversity Style Guide
From the Center for Integration and Improvement of Journalism at San Francisco State University; this guide includes hundreds of terms related to race/ethnicity, disability, immigration, sexuality and gender identity, drugs and alcohol, and geography. amalgamates information from more than 20 different style guides, journalism organizations and resources. 

The Role of Medicare in Hispanics’ Health Coverage, from the National Council of La Raza

The proportion of elders from ethnic and racial communities will double.

Ethnic Elders Newsbeat site

The American Geriatrics Society (AGS) develops Geriatrics Cultural Navigator, an iPhone app. AGS is addressing the need for culturally competent patient communication that involves the stigma many traditional cultures attached to mental health concerns. Contact is Jill Lubarsky.

Federal laws and regulations are codified in Title VI of the 1964 Civil Rights Act and guidances issued by the Department of Justice and the Department of Health and Human Services. See this excellent summary from attorneys at the National Senior Citizens Law Center.

To review 14 standards laid out in federal National Standards on Culturally and Linguistically Appropriate Services (CLAS), see this write-up from Office of Minority Health of the U.S. Department of Health and Human Services  For a consumer perspective on CLAS, look at this publication from the Center for Medicare Advocacy, Inc.

The Asian and Pacific Islander American Health Forum worked with the American Journal of Public Health to devote its entire May 2010 issue to the cultural, linguistic and socioeconomic differences between sub-groups within these broad categories.

Key sources for reporters covering diversity and aging include the Centers for Medicare and Medicaid Office of Minority Health and the U.S. Administration in Aging’s (AoA) state-by-state statistical breakdown of minorities.

Another valuable source for any reporter looking for recent research and experts on minority aging is the Gerontological Society of America.

GSA communication director Todd Kluss can provide a PDF of this 38-page booklet and contacts for listed speakers at GSA's 64th annual meeting in Boston. He’ll also search GSA’s journals on any subject and provide relevant journalists pieces at no charge.

Stanford Internet-based Successful Aging (iSAGE): A completely online educational program for health care providers, social workers, allied professionals and others caring for older adults. Modules target targeted specific older ethnic and minority populations. This self-paced training program is designed to provide deeper understanding of the science behind healthy aging and end of life care.  Many videos available; good for quick topic overviews.

Health Care Disparities

How Neighborhoods Affect the Health and Well-Being of Older Americans   a 2017 report from the Population Reference Bureau summarizes recent research on the association between neighborhood characteristics and the health and well-being of older adults.

See this helpful list of resources from the U.S. National Library of Medicine regarding health care disparities. Other important sources include the Kaiser Family Foundation’s Minority Health website, with Kaiser’s Monthly Update on Health Disparities, and the Commonwealth Fund, especially its website on vulnerable populations

Six resource centers for Minority Aging Research (RCMARs) funded by the National Institutes in Aging, are key sources on this topic.

Specialized resources

National Hispanic Council on Aging: Hispanic seniors represent 7 percent of the U.S. older adult population and, by 2050, they will make up 20 percent of the nation’s older adults. The National Hispanic Council on Aging (NHCOA) is a national organization working to improve the lives of Hispanic older adults, their families and their caregivers. NHCOA has developed a Hispanic Aging Network of community-based organizations across the continental U.S., the District of Columbia and Puerto Rico that reaches millions of Latinos each year. NHCOA also works to ensure the Hispanic community is better understood and fairly represented in U.S. policies.

Asociacion Nacional Pro Personas Mayores (National Association for Hispanic Elderly)

Hispanic Health and Aging in a New Century

National Caucus and Center on the Black Aged

National Asian Pacific Center on Aging

Profile of Asian American Seniors in the United States

Indian Health Service

Statistics

Statistical profile: Black  Older Americans  Age 65  

Statistical profile: Hispanic Older Americans Age 65  

Statistical profile: Asian Older Americans Age 65

Statistical profile: American Indian and Native Alaskan Elderly

National Caucus and Center on Black Aging (NCBA): This group’s primary focus is on low-income African-Americans, quality of life, aging with dignity. They offer a health and wellness program which addresses social justice issues in health care – access, barriers, cost. They also provide educational programs on aging-related health issues specific to minority populations.

Observation status

Medicare Observation Status Toolkit from the Center for Medicare Advocacy: created to help beneficiaries, families, advocates and providers understand and respond to an “outpatient” Observation Status designation.  The Toolkit contains the CMA's Observation Status InfographicFrequently Asked Questions; A Fact SheetSummary & Stories from their partners in the Observation Coalition; A Sample Notice (the MOON); a Recorded Webinar (slides in the printable .pdf); Beneficiary/Advocate Q&A; and a Self-Help Packet

Prescription drugs

AARP Report: Rx Price Watch — this June 2019 analysis found the prices of widely used specialty prescription drugs grew more than three times faster than general inflation in 2017.  The average annual price for a single specialty drug used on a chronic basis is now nearly $79,000, compared to $27,824 in 2006. These drugs are among the most expensive on the market; prices that can reach hundreds of thousands of dollars per year. The annual specialty drug cost was also more than three times the median income for Medicare beneficiaries ($26,200) and over four-and-a-half times higher than the average Social Security retirement benefit ($16,848) according to the authors. The report concluded that if these trends continue, older Americans will be unable to afford the specialty prescription drugs that they need, leading to poorer health outcomes and higher health care costs in the future. 

Neighborhoods

How Neighborhoods Affect the Health and Well-Being of Older Americans: A 2017 report from the Population Reference Bureau summarizes recent research on the association between neighborhood characteristics and the health and well-being of older adults.

Nutrition

AARP fact sheet 

This fact sheet from AARP provides some basic stats about hunger among the 50 population. It’s a bigger concern than many people realize. Included is a state-by-state ranking and proportion of the older population at risk. Some good story ideas in here based on the data. 

SNAP and the state of senior hunger in America

Millions of older Americans go hungry or have food insecurities each year. SNAP is the federal Supplemental Nutritional Assistance Program that helps seniors afford nutritious meals on a budget. This fact sheet provides stats and data on senior hunger. This report offers more insight and detail into the problem, policies, and programs to address hunger and its effect on older adults.

Nursing homes

Skilled Nursing Services Payment System – from the Medicare Payment Advisory Commission, (MedPAC), an independent congressional agency established which advises Congress on issues affecting the Medicare program. This fact sheet can help reporters understand how MEDPAC defines, and pays for, skilled nursing services in both short and long-term care facilities. (updated October 2022).

Latest Data on Nursing Home Staffing Levels and Poorly Performing Nursing Homes - from the Long Term Community Care Coalition 2017Q4 data provides tables for every state that include, for each facility in the state that has reported), the facility’s resident population; its RN, LPN, and CNA care staffing levels; and the amount of care staff hours per resident day (HPRD) for both all care staff and for RNs specifically. Individual state files can be downloaded and are easily sortable, I.e., to identify by state which facilities have the highest reported levels of RN care and which have the lowest.

National Partnership to Improve Dementia Care in Nursing Homes’ April 2018 report provides a long-term view of antipsychotic medication use: in 2011Q4, 23.9 percent of long-stay nursing home residents were receiving antipsychotic medication; since then, there has been a decrease of 36.6 percent to a national prevalence of 15.1 percent in 2017Q4. Success has varied by state and CMS region, with some states and regions having a decrease of greater than 40 percent. The CMS report is found on this page, in the box headlined “Related Links.”According to LeadingAge, the association for nonprofit providers of aging services (including, but not limited to, nursing homes), points out that nursing home leadership at skilled nursing facilities (SNFs) across the country have developed approaches to decrease the use of antipsychotics.

PHI Report: Raise the Floor: Quality Nursing Home Care Depends on Quality Jobs (April 2016) According to the report, Low Pay and inadequate training of CNAs Are Creating a Care Crisis in nursing homes while demand increases. (note that PHI Policyworks is an advocacy group working to strengthen the direct-care workforce 

AHRQ’s Nursing Home Survey on Patient Safety Culture: 2014 Comparative Database Report is available for download. The report compares patient safety culture in 263 U.S. nursing homes and 18,968 staff. The report also presents results by various nursing home characteristics (size and ownership) and respondent characteristics (job titles, work areas, direct patient contact, shift worked and tenure in nursing home). The report presents statistics, including averages, standard deviations, minimum and maximum scores and percentiles, on the patient safety culture composites and items from the survey.

Find or compare a nursing home at Medicare.gov. Get the data in spreadsheet format from AHCJ. CMS also releases a list of "special-focus facilities" that have longstanding quality issues.

Consumer Reports has long offered useful information on nursing homes. Its report, "Why the Fed's Web Site Falls Short," September 2006, is available here. CR also created a "Nursing Home Quality Monitor," which is available online as a clickable state map.

AARP offers a host of information, including this guide to state sources of nursing home performance data.

State's quality care information can be found in this guide to State Website Information About Nursing Homes. You can generally find up-to-date contact information and links to websites for the licensing and certification agency in your state.

Regulatory agencies

Consumer organizations

Other sources

Reports

Older Americans Act Reauthorization Act of 2015

The National Academy on Aging offers a summary of this legislation, which reauthorizes the Older Americans Act of 1965, a federal law with longstanding bipartisan support. The law provides for the organization and delivery of social and nutrition services to older Americans and their caregivers.

This bill reauthorizes programs through 2018 and includes provisions that aim to protect vulnerable elders by
strengthening the Long-Term Care Ombudsman program and existing elder abuse screening and prevention
efforts. The bill also promotes the delivery of evidence-based programs, such as falls prevention and chronic
disease self-management programs. The reauthorization streamlines federal level administration of programs,vpromotes the efficient and effective use of transportation services, and improves coordination between programs at the federal, state, and local levels.

Here is a related tip sheet

Oral health

"Oral Health: An Essential Element of Healthy Aging" - The Gerontological Society of America has dedicated an entire issue of its monthly newsletter to an exploration of the importance of oral health for elders. 

Overuse of care

Too much of a good thing? Overuse of health care: A March 2018 University of Michigan national survey on healthy aging found that doctors and older patients may disagree more often than either suspects about whether a particular medical test or medicine is truly necessary - only 14 percent of people over age 50 believe that more is usually better when it comes to health care, But one in four say their health providers often order tests or prescribe drugs that they don’t think they really need. On the flip side, about 1 in 10 of those polled said their doctor or other health provider had told them that a test or medication they’d asked for wasn’t needed.

Health benefits of pets

Physical activity

Physical Activity Snapshots of 131 Countries: The Global Observatory for Physical Activity (GoPA!), a council of physical activity researchers has released baseline data cards for 131 countries across the world. These cards offer a detailed look at physical activity research, policy and surveillance worldwide. GoPA! was launched in 2012 after publication of the landmark Lancet Physical Activity Series which described a worldwide physical inactivity pandemic. It is a global organization consisting of physical activity researchers, epidemiologists, public health policy makers and practitioners. The group produces and analyzes reliable, high quality and current global data, information and knowledge on the topic of physical activity and health

Population trends

Gauging Aging: Mapping the Gaps Between Expert and Public Understanding of Aging in America: A breakdown of what experts know, what the public believes, and how little overlap there is between the two, is dead-on, as well as providing necessary background for deep-diving, thought-provoking articles. Its easy-read, bullet-pointed format makes it a gold mine of ideas for those articles, and page lay-outs make it easy to make notes in the margins.

65 in the United States: 2010

This June 2014 report highlights several trends among America’s older population. There are more than 40 million people over age 65. That figure is expected to more than double by mid-century, to 83.7 million people and one-fifth of the U.S. population by 2050. The report presents population trends among older adults, as well as data on life expectancy, how well they age, their financial and educational status, medical, long-term care and housing costs, where they live and with whom, and other factors important for aging and health.

Provisional Life Expectancy Estimates 2020

This report presents life expectancy estimates calculated using abridged period life tables based on provisional death counts for 2020, by sex, for the total, Hispanic, non-Hispanic white, and non-Hispanic black populations. Between 2019 and 2020, life expectancy decreased by 3.0 years for the Hispanic population, by 2.9 years for the non-Hispanic black population and by 1.2 years for the non- Hispanic white population.

Retirement/labor/employment

Ageing and Employment Policies: United States 2018
According to the organization for Economic Cooperation and Development, 2016 employment rates at older ages were a comparatively high 62 percent among 55-64 year-olds compared with an average 59 percent in OECD countries.  However, OECD found large disparities across population groups. This report looks at the various pathways out of the labor market for older employees  and how employers can be supported to retain and hire older workers. 

Center for Retirement Research, Boston College

Transamerica Center for Retirement Studies

Retirement Research Center, University of Michigan

Employee Benefit Research Institute Retirement Confidence Survey

EBRI: Work to Age 70? For many, that still won’t pay for retirement

Fidelity Investments Estimates that a couple retiring in 2012 Will Pay $240,000 out of pocket in medical expenses throughout retirement

Transition boomers and Retirement Income Survey

The Single Woman’s Guide to Retirement, AARP

Readiness Assessment

One of the first steps in undertaking a major organizational change is the evaluation of the preparedness of the organization for that implementation. A readiness assessment addresses the organizational, structural, and human factors that impact change implementation. It analyzes an organization’s infrastructure, culture, leadership styles, performance, processes and resources. Readiness assessments identify organizational needs and help administrators develop a plan – whether upgrading IT or introducing QI goals to staff. It also looks at the people within the organization and how adaptable they are to change.

Reform

This table from the Urban Institute shows the effect of the Better Care Reconciliation Act (BCRA) on uninsured non-elderly adults by state. There’s also a map and the entire report

Reverse mortgages

A fact sheet on reverse mortgages from the Federal Trade Commission. 
Another fact sheet on reverse mortgages from the National Council on Aging. 

A Q&A on reverse mortgages from the U.S. Department of Housing and Urban Development. 

A helpful primer on how reverse mortgages work. 

Science of aging

Disease drivers of aging e-briefing — comprehensive summary report on the The 2016 Advances in Geroscience Summit, from the New York Academy of Sciences in April (see my story here. Individual panelist presentations (slides & audio), and speakers list with contact information is available. Definitely a must-add resource for anyone reporting on the science of aging.

Sleep

These resources provide information about sleep conditions and improving sleep. 

American Academy of Sleep Medicine
2510 North Frontage Road

Darien, IL 60561

630-737-9700

American Sleep Apnea Association
6856 Eastern Avenue, NW, Suite 203

Washington, DC 20012
202-293-3650

Better Sleep Council
501 Wythe Street

Alexandria, VA 22314-1917

703-683-8371

National Sleep Foundation
1010 North Glebe Road, Suite 310
Arlington, VA 22201
703-243-1697

Sourcing and style guides

Disability Language Style Guide from the National Center on Disability and Journalism — excellent guidelines and language alternatives when reporting on the differently-abled.

Diverse Sources — searchable database of international experts designed for journalists to aid inclusion of more underrepresented voices and perspectives in science, health and environment reporting. Note that the time differences are based on GMT.

Social Security

Social Security Spotlight is a report and interactive data project from the National Committee to Preserve Social Security Foundation details Social Security’s economic impact in states and counties nationwide. It includes data on beneficiaries by state, county, Congressional district, race/ethnicity, age and gender.

Stereotypes

Frameworks Institute guide on reframing aging language: uses the evidence-informed findings from the Reframing Aging Initiative and the best practices guidance from the APA, AMA, and AP style guides to show you how to apply age-inclusive, bias-free language in your communications. To make it easier to identify wording that can be improved, the guide highlights terms to avoid and suggests alternatives to use more often.

The Centre for Ageing Better has a free library of positive and realistic images of people aged 50 and over. While its U.K. focused, many images are generic enough to depict older adults anywhere.  Please read their guide and terms for use.

Many different groups of people are subject to stereotypes. Positive stereotypes (e.g., “older and wiser”) may provide a benefit to the relevant groups. However, negative stereotypes of aging and of disability continue to persist and, in some cases, remain socially acceptable. Research has shown that when exposed to negative images of aging, older persons demonstrate poor physical and cognitive performance and function, while those who are exposed to positive images of aging (or who have positive self-perceptions of aging) demonstrate better performance and function. Furthermore, an individual’s expectations about and perceptions of aging can predict future health outcomes. To better understand how stereotypes affect older adults and individuals with disabilities, the National Academies of Sciences, Engineering, and Medicine, with support from AARP, convened a public workshop on October 10, 2017. This publication summarizes the presentations and discussions from the workshop.

Storytelling

This free white paper from Tableau will help you understand and decide which chart is best for the type of data you're analyzing and the questions you want to answer. The paper is free to read online but downloading the PDF requires registration (name/email/phone). 

Supply chain

Healthcare ready is consortium of trade associations, comprising the bio-pharmaceutical supply chain and the American Red Cross established post-Katrina to deal with supply chain problems/drug shortages  before, during and after disasters.

Transitional care

Where do they go from the hospital? (Mary Naylor presentation)

Care transitions: Role of geriatric care managers (Emily Saltz presentation)

Direct-care workers and transitional care (Dorie Seavey presentation)

 Women's health

Dr. Colleen Fitzgerald makes the case for women's health rehabilitation in this presentation.

Workforce

2020 Nursing Home Salary & Benefits Report, published by Hospital & Healthcare Compensation Service. Includes salary information about 760 types of jobs in nursing homes, as well as by state, profit status, bed type, revenue, regions and other criteria. Information is based on from survey responses from participants at 1,611 nursing homes nationwide. Members of the media should contact Rosanne Zabka rzabka@hhcsinc.com or call 201-405-0075 ext. 11 with questions or to obtain a copy.

Eldercare Workforce Alliance’s Journalist Toolkit

May is Older Americans month and, in recognition, the Eldercare Workforce Alliance has released the Older Americans Month Toolkit for journalists and other stakeholders. It is designed to help easily identify resources that focus on the health and safety of older Americans. Of particular interest are links to personal stories by professionals, caregivers and older adults that can serve as a starting point for story ideas or sources. Links to professional training and guides, as well as Eldercare Workforce-specific programs are also included.

Retooling for an Aging America: Building the Health Care Workforce (Institute of Medicine, April 2008 report)

Caring for an Aging America Act (introduced in Congress May 2011)

Aging and the Health Care Workforce (Population Reference Bureau)

The Impact of an Aging Population on the Health Workforce in the United States (Center for Health Workforce Studies, University of Albany)

Who Cares for Older Adults?  Workforce Implications of an Aging Society (Health Affairs)

Eldercare Workforce Alliance

Coalition of Geriatric Nursing Organizations

American Geriatrics Society

American Geriatrics Society:  Geriatrics Workforce Policy Studies Center

National Association for Geriatric Education

Gerontological Society of America

American Assn. for Geriatric Psychiatry

American Academy of Nursing

American Physical Therapy Association

National Gerontological Nursing Association

Direct Care Alliance, Inc.

Service Employees International Union

Caring for Caregivers:  Latinos in the Direct-Care Workforce from the National Council of La Raza

PHI is an organization representing home health aides, certified nurse aides, and personal care attendants:  the workforce that provides care to seniors and people with disabilities in their homes. 

See also organizations listed under “Direct Care Workers”

There are several presentations on this topic.

Long-Term Care (LTC) Workforce (Valerie Gruss presentation)

Addressing current and future health workforce hurdles (Michael Evans presentation)

Geriatricians and the Aging Population (Herbert Sier presentation)

Volunteering – older adults

Profile of Older Adult Volunteers 65
(a report from the Corporation for National and Community Service)

Volunteer Growth in America: A Review of Trends Since 1974
(a report from the Corporation for National and Community Service)

AoA’s Civic Engagement Initiative

The Aging Network’s Volunteer Collaborative

Retaining Older Volunteers is the Key to Meeting Future Volunteer Needs
(a report from the Urban Institute)

Will Retiring Boomers Form a New Army of Volunteers?
(a report from the Urban Institute)

Age4Action Network

AARP Experience Corps

National Academy on an Aging Society:  Civic Engagement Resources