Supporting Families Living With Dementia

Molly Fogel, LCSW Director of Educational and Social Services, Alzheimer’s Foundation of America

Aging professionals can be a great source of support for individuals living with dementia.  These professionals, including social workers, geriatric care managers, and nurses, wear many hats, working as advocates, mediators, counselors and so much more.   When a family is faced with a loved one living with a dementia related illness, there are so many feelings, needs, and concerns that arise.  Having a skilled and educated dementia care partner involved in the care team can make a world of difference.

To best support family members living with a loved one who has a dementia related illness, it is important to understand the family dynamics involved.  In addition to the individual showing changes as the disease progresses, the family can be equally impacted as the disease evolves.   An awareness of how the family is organized, including roles, rituals and boundaries can be helpful to promote the well-being of the family and the happiness of its members. Roles that are usually seen are similar to roles identified in families with substance use or chronic mental health, including enabler, hero, lost child, and mascot, are also seen in families dealing with chronic medical illness, such as Alzheimer’s disease.   More specifically, you may see the primary care giver or spouse serve as the enabler, helping the individual living with the illness  with everything to the point that the individual living with the illness doesn’t have to think for themselves, or use the capabilities that are still present.   The hero role can often be seen in the oldest child, the one who plays the martyr, who will take on everything for the primary caregiver.  They will seek to over achieve, and be overly responsible, and want to ensure that everyone knows it.  The lost child is the one choosing to stay off to the side, recognizing that for them, keeping a low profile is the best way to cope with what is happening.   By keeping to themselves, the person in this role often feels unimportant and unnecessary in the care process.   The mascot is often the youngest child, this can also be the grandchildren, seen as a distraction and source of amusement, to keep the family from focusing on the issue at hand.  This person remains sheltered and protected, often upsetting the other family members for not having as much responsibility.  Knowing who plays what role in each family, and how this keeps the family functioning, whether in an adaptive or maladaptive manner, can assist the care partner in understanding interventions to best assist the family, and work to map out the course of care with this family.


Another component to consider when informing yourself as a care partner, and understanding the family you are working with, is recognizing the boundaries that are present.  Boundaries include the limits a family sets with each other as well as with their outside world.  Getting a sense of whether or not the family is open and flexible to new experiences and relationships will be helpful as things continue to shift with the course of the dementia related illness.   Because there are so many unknowns with this illness, knowing where the family stands in terms of their willingness and flexibility is key. Understanding how a family protects each other and their “secrets” will also inform the care you provide as well as how to interact with the family and barriers that may arise.   Old family issues, challenging dynamics, and preexisting tensions can easily resurface, particularly when a family is strained by stress and illness.  Tensions become particularly high at these times when the family must come together to make key decisions as the disease progresses.  The other system to pay attention to is the sibling relationship, which can come with a long, varied history.  Issues with aging parents can bring out the best or the worst in sibling relationships.  We may find that old sibling rivalries for control or attention surface.

When learning a family, their systems, roles, and boundaries, the next component to learn will be how a family system communicates.  Are they good communicators?  Do they understand each other?  Do they truly listen to each other –  hearing the concerns, fears, stress, and emotion?   Are they willing to connect for the common cause and care of their loved one?  As care partners, a large part of the role with families can be gaining insight into this and helping the family to meet their own needs, as well as not lose sight of the individual living with dementia.

As with most of our work within the aging community, we know that strong communication skills are useful for meaningful engagement.  Teaching a family how to communicate their feelings effectively and listen to each other’s concerns can be challenging.  A great starting point is to check ourselves, and our own methods of communicating.  If we, as the care partner, are not effectively communicating, we are unable to best assist and attune ourselves to the families we are working with, as well as losing the opportunity to model healthy communication techniques.   So what does this mean?  Notice your tone of voice and rate at which you speak.  If a family is yelling, that doesn’t mean we need to match them.   We want to be able to harness our cool, calm, collected professional self, no matter how frustrated we may get, or how escalated a family can get.   Additionally, note your body language.   What does your body language say about you?   Are you open and willing to receive whatever is brought your way?  Do you make eye contact?  Does your body show that you are there and ready to listen?

When we think of listening, it’s important to recognize the difference between listening and hearing.   Hearing is like the teacher in Charlie Brown, where all that is heard is the noise, not the words.   Hearing is simply the act of noticing sound and takes no effort. Without any impairment, hearing simply happens. Listening, however, is something you consciously choose to do.  You need to want to listen, and recognize the families you are working with, want to be heard.  There are three main listening skills often discussed in terms of effective communication, including:

  • Attending: Giving your physical and mental attention to another person
  • Following: Engaged with eye contact. Use un-intrusive gestures i.e. such as nodding of your head, saying okay or asking an infrequent question
  • Reflecting: Paraphrasing and empathizing

So if there is something happening in your world on a particular day, that will keep you from being your best self, from focusing and truly listening, it’s important for you, the care partner, to ask for help, or reschedule.  A good care partner knows their limits, when to take care of themselves, and when to ask for help.   By doing this, the care partner can model this to the family, teaching by example.

As part of the care team, we must recognize not only what is happening in the family, but making sure all that is swirling about, centers on the individual living with the illness.  After all, that is what brings this picture together.  Person centered care and collaboration needs to be a constant focus and reminder, anchoring the family to the individual living with the illness and reeling in the social worker when things seem to get a little lost.  Bringing it back to basics, back to the home, and the person living with the illness.  Care partners, and their many hats, can bring a lot to families in need of support while coping with stressors associated with dementia care.


About Alzheimer’s Foundation of America (AFA):

The Alzheimer’s Foundation of America, is a non-profit organization that unites more than 2,600 member organizations nationwide in the goal of providing optimal care and services to individuals living with dementia, and to their caregivers and families. Its services include a national, toll-free helpline (866-232-8484) staffed by licensed social workers, the National Memory Screening Program, educational conferences and materials, and “AFA Partners in Care” dementia care training for healthcare professionals. For more information about AFA, call 866-232-8484, visit, follow us on Twitter, or connect with us on Facebook or LinkedIn.


Spotlight: Rush University Medical GWEP CATCH-ON

CATCH-ON Training Session

Rush University Medical Center’s Geriatric Workforce Enhancement Program (GWEP) called Collaborative Action Team training for Community Health – Older adult Network (CATCH-ON) partners with health care providers, universities, community organizations and older adults and families across the state of Illinois. All of our state-wide collaborators and partners have been working for the past three years of the GWEP grant to develop innovative programs and strategies to care for older adults and families, particularly those with multiple chronic conditions including Alzheimer’s Disease and Related Dementias (ADRD). This blog post highlights two of CATCH-ON’s online educational efforts: online education and Equip the Trainer workshop.

CATCH-ON Educational Online

CATCH-ON developed online learning for students, professionals and older adults and families. The online modules are free, brief and can be taken for continuing education credits. The modules keep in mind the busy schedules of providers so that they can be easily infused into “lunch and learns,” during break times or other educational opportunities. The education for older adults and families has been disseminated widely at senior centers, churches and consumer groups.

In the third year of the GWEP grant, CATCH-ON developed and began disseminating online educational modules for professionals focused on communication. The modules provide important tips and evidence on how best to communicate with older adults, including various video roleplays of “positive” and “negative” interactions among older adults and providers. The three modules developed are titled:

  • Basics of Communicating with Older Adults
  • Communicating about Multiple Chronic Conditions
  • Communicating in Healthcare Teams

The communication modules are in addition to CATCH-ON Basics and ADRD modules for both professionals and older adults and families. We recently translated our dementia care modules for older adults and families into Spanish, titled “Cuidado de persona en hospital con demencia,” in addition to the basics modules. The modules are on the CATCH-ON website for easy access for learners and for use during community presentations.

Through our dissemination efforts as of May 2018, across all three years of GWEP funding, 3,142 learners including professionals, students and older adults and families viewed the modules.

Equip the Trainer

Equip the Trainer is a full day workshop for professionals who train their staff in dementia care that expands on the dementia-specific CATCH-ON educational modules. The workshop was created out of the need to increase and enhance dementia care knowledge in different professional settings.

The day long workshop is interactive and case-based; building on the online education and CATCH-ON cases of Mrs. Kemp and Mr. Kozlowski (the cases can be found in the CATCH-ON faculty development page of our website). In Year 3, the team piloted the program at Southern Illinois University in Springfield with 54 professionals. The ADRD team continues to refine and enhance the different activities in the workshop to best meet the needs of learners.

For more information or to learn more about CATCH-ON’s educational efforts, please visit or email

Spotlight: Senate Introduces Bipartisan Geriatrics Workforce Legislation

Sen. Susan Collins (R-Maine)

Sen. Susan Collins (R-Maine) and Sen. Bob Casey (D-Pennsylvania) introduced legislation on May 21st that would ensure communities across the U.S. have access to health professionals and other critical supports improving care for older adults.  The bipartisan Geriatrics Workforce Improvement Act (S.2888) echoes similar bipartisan legislation proposed in the U.S. House of Representatives, the Geriatrics Workforce and Caregiver Enhancement Act (H.R. 3713).

The Eldercare Workforce Alliance, in partnership with the American Geriatrics Society and the National Association for Geriatric Education, have been working relentlessly with Congress and advocates to reauthorize the Title VII geriatrics programs over the past few years.  This is a tremendous step forward in reauthorizing the expired program at higher levels and increasing the investment in the only federal program to educate and train the workforce in geriatrics.

Elizabeth Phelan, M.D.

In addition to the introduction of the legislation, the Senate HELP Committee held a hearing on the health workforce a day after the introduction of the Geriatrics Workforce Improvement Act.  One of the witnesses called upon to testify at the hearing was Elizabeth Phelan, M.D., Director of the Northwest Geriatrics Workforce Enhancement Center at University of Washington.  Dr. Phelan stressed the importance of federal investment in training the health workforce in geriatrics, and gave many examples of how important the work being done in Washington state was critical for older adults.

Amy York, Executive Director of the Eldercare Workforce Alliance, stressed the importance of this legislation earlier this month, “Our nation faces a severe and growing shortage of eldercare professionals with the skills and training to meet the unique healthcare needs of older adults. EWA is committed to supporting the Geriatrics Workforce Improvement Act because it expands the only federal geriatrics training program. That’s an investment in an eldercare workforce that can support well-coordinated, high-quality care for all older Americans.”


Click here to watch Sen.  Collins ask geriatrics workforce training questions of Dr. Whelan.

Click here to read EWA’s press release on the Geriatrics Workforce Improvement Act.

Click here for more information on GWEP advocacy.

The Impact of Geriatric Academic Career Awards

Paul Tatum III, MD, MSPH


When I think of what it takes to build a better workforce to care for older adults across all of the US, the thing that comes to mind is that we need master educators who are geriatricians. These master educators will teach physicians (generalists and specialists), nurses, social workers, direct care workers, and patients and their caregivers how to provide care for older adults at both a system level as well as at the individual patient encounter. How will we ever teach all providers these skills if we don’t have specially trained teachers?

A key policy element for better care of older adults, therefore, is the restoration of the Geriatric Academic Career Award (GACA). The GACA is a five-year career award that allows junior faculty the opportunity to dedicate a large portion of their time to developing pedagogical and leadership skills to become influential clinician educators.

As a past recipient of the Geriatric Academic Career Award, I can speak firsthand to the importance of an academic career award. The GACA made all the difference in my career, and I know a number of other former awardees who would say the same. But don’t just take my word for it, you can see others speak to the importance of the GACA here in a series of video testimonials from former awardees.

And let’s look at the evidence:

In the Journal of the American Geriatrics Society, Dr. Kevin Foley of Michigan State and colleagues analyzed the impact of GACA awards. GACA awardees were highly positive about the impact of the award. Ninety-six percent stated that GACA support for education and academic development and leadership was critical to academic success. Most were successful in their projects and went on to academic promotion. They estimate that 102 GACA recipients reached a minimum of 40,000 learners and possibly more than 60,000.

The disruption of GACA funding in the midst of the fellowship led to half the group leaving the practice of academic medicine. In fact, at my own institution, one geriatrician hoped to receive a geriatric career award, but when the GACA was dropped she actually left geriatric medicine.

So how did the GACA impact me personally?

I would say it offered me three things:

  1. Flexibility: The career award allowed me to use dedicated time to focus on development of teaching skills. Without funding, this would not have been possible. I would have been pressured to use that time for revenue-producing activities.
  2. Formal pedagogical and leadership training: By being freed up with the award, I was able to pursue training to become a better educator. As someone who had been in private practice for 6 years before starting my academic career, I found this support to be essential to my development. I also attended a quality improvement training with Dr. Brent James – a founder in that field which helped me advance into national leadership.
  3. Mentorship: The GACA allowed me to create a national network of peer mentors who to this day help me with solving problems.  I get consults from San Francisco, Denver, Birmingham and elsewhere around the country for problems I encounter. They make my work better!

And the result?

The GACA allowed me to develop curricula to train family physicians, internists and hospitalists to deliver better care transitions for patients with serious illness. It allowed me to have an impact in my institution to teach every graduating medical student and redesign curriula to teach basic geriatrics and palliative care skills. For my institution this is especially important because we train the majority of physicians who will practice in rural areas in our state.

The GACA also gave me the opportunity to advance in national leadership. Thanks to the GACA, I am now a member of the American Academy of Hospice and Palliative Medicine’s Board of Directors, a member of the American Geriatrics Society’s Quality Committee and a member of the Geriatrics and Palliative Care Standing Committee of the National Quality Forum. None of these positions would have been possible without the GACA.

Geriatric Academic Career Awards will give junior faculty the ability to spend their first few years developing teaching skills and programming skills that will allow them to be successful. Without building future generations of teachers so that every physician has basic geriatrics care skills, how will we meet the needs of patients , more and more of whom may be living with multiple serious illnesses? It is time to restore the GACA.

Looking forward

On May 14 2018, Senator Collins (R-ME) and Bob Casey (D-PA) introduced the bipartisan Geriatrics Workforce Improvement Act (S. 2888) in the Senate to reauthorize programs—including the GACA—that support interprofessional geriatric education, training and advance research to develop a geriatric-capable workforce, improving health outcomes for a growing and diverse population of older Americans and their families. This bill has a companion in the House of Representatives, the Geriatrics Workforce and Caregiver Enhancement Act (H.R. 3713) sponsored by Reps. Jan Schakowsky (D-IL), Doris Matsui (D-CA), and David McKinley (R-WV). Your voice of support will be critical to ensuring lawmakers in both chambers of Congress recognize the importance of these legislative proposals, which now must be reconciled and voted upon before they become law. For more information on contacting your U.S. Senators and House Representative, visit the AGS Health in Aging Advocacy Center at


Dr. Paul Tatum is a geriatrician in Columbia, Missouri and is affiliated with University of Missouri Hospitals and Clinics. He received his medical degree from University of Texas Medical School.

Innovative Coordinated Care for Veterans

Elderly Veterans and Veterans who require around the clock care have numerous options available to them through the Department of Veterans Affairs (VA). Annually, thousands of Veterans turn to VA for care, whether it is in a community residential care center, adult family home, VA community living center or a community nursing home partner.


For Veterans and Americans in general of any age, many want to remain at home as they age and their care needs increase. One of the VA’s innovative and expanding programs is the Medical Foster Home program – Where Heros Meet Angels.   The VA Medical Foster Home provides an option to receive personalized care in the comfort of a home setting. The VA provides home medical care through their Home Based Primary Care (HBPC) team, which includes a medical provider, nurse, social worker, dietitian, pharmacist, rehabilitation and recreation therapist, as well as a mental health provider.   The Veteran utilizes their VA benefits and personal resources to cover the costs of care in the MFH, which includes everything from meals to personal care to socialization. However, it is so much more than that. Since the MFH Caregiver must reside in the home, the Veteran becomes part of the family. Many Veterans go on outings, family gatherings, trips and vacations with their MFH families. They share in the celebrations.

Mr. Sawyer* is a Vietnam Veteran who chose to receive care at a MFH. When he returned from Vietnam, Mr. Sawyer suffered from PTSD, schizophrenia, and substance abuse. Most of his adult life he spent on the street or in jail, having multiple arrests for burglary and petty theft trying to get enough money to just survive. He was malnourished, isolated, and afraid. During his last trip to the County Jail he met with the VA Justice Outreach Social Worker who gave him another option, a chance for a new life.


Mr. Sawyer was provided with a four-poster bed in a warm Medical Foster Home (MFH). The medical team helped him access his VA benefits, pensions and other entitlements. They followed his medical conditions and ensured he was fed good home cooked meals, provided the right medications daily, socialized with other Veterans, and treated with dignity and compassion. Mr. Sawyer became a contributing member of society. He never went back to jail. He gained 40 pounds and smiled every day. As he neared the end of his life, he chose to die under Hospice care in his new home – his MFH – with his caregiver.

Ethel Gordon is one such caregiver. Originally from Trinidad, she grew up with a family who provided care to homeless in her own country. After a career in Mental and Behavioral Health and raising her children, she wanted to be able to work from home. After learning of the VA Medical Foster Home program, Ethel decided to bring 3 Veterans into her home and family. All have their own individual stories which include some mental health history.

“We all went to Florida together for vacation,” Ethel told me. “We go to church every Sunday. I was able to give them stability. There is always something going on.”

Her family is also involved, with her college-age children coming home on breaks and bringing home friends. “The Veterans all feel like they are back in college again,” Ethel shared. She says the joy it brings to her is much more than what she ever expected.

VA Medical Foster Home is the environment where our Heroes meet the Angels willing to open their personal homes to provide an alternative to institutional care. We salute them.

The VA MFH program began as a successful pilot at the Little Rock VA Medical Center in 1999 and has grown to include programs in 45 states and Puerto Rico. Nearly 5000 Veterans have received care in a MFH since the inception.

Dayna Cooper, RN, MSN
Director, Home and Community Care
Geriatrics and Extended Care Operations
US Department of Veterans Affairs

Spotlight: Anniversary Kicks Off #TogetherWeCare Campaign

April launched the Eldercare Workforce Alliance’s #TogetherWeCare Campaign, a year-long celebration to commemorate the 10-year-anniversary of the release of the National Academies’ Retooling for an Aging America Report. The Eldercare Workforce Alliance (EWA) focused on advancing innovative solutions to preparing the healthcare workforce to care for older Americans. This month, we were pleased to have the following blog posts launch our first month of the #TogetherWeCare campaign:


We also lead a Twitter storm for the kick-off of the #TogetherWeCare Campaign that reached the triple digits in member and partner participation, generating 276,839 total potential impressionsThis was such a great start to the launch of the campaign and we look forward to continuing this momentum as we share materials about the workforce that cares for us all as we age!

May kicks off “Geriatrics Training” Month- join us in a Twitter chat on May 9th!


Every May, the Administration for Community Living leads our nation’s observance of Older American’s Month. In recognition of this and as part of our #TogetherWeCare campaign, EWA will be partnering with ACL and HRSA for a Twitter Chat on May 9th at 2 p.m.

Stay tuned for more information on the #TogetherWeCare campaign through our weekly updates, monthly newsletters, and our social media presence @eldercareteam.

Healthcare Systems and the Community in Partnership

By Tara Cortes

Preparation of the healthcare workforce to keep people at the highest level of wellness as they age is a great challenge in US where 10,000 people turn 65 every day and most people over the age of 65 have at least one chronic disease. The Hartford Institute for Geriatric Nursing at NYU Meyers College of Nursing is partnered with Montefiore Health System and RAIN (Regional Aid for Interim Needs) in the HRSA funded Geriatric Workforce Enhancement Program (GWEP). This initiative is designed to prepare an age sensitive workforce and to break down the silo of the primary care provider’s office and deliver primary care as a continuum across the community using available resources to enhance the wellness of the aging population. A long term goal of this initiative is to help older people be independent in the community as long as possible with knowledge about managing chronic disease and putting into action behaviors to enhance health.


The traditional primary care workforce of physicians, nurses, social workers and other health professionals is just not adequate to meet the needs of the growing older population. It is necessary to educate the existing workforce and those students who will be entering the workforce about the complex care required by older adults. Through this GWEP we have educated over 1000 health care professionals on the unique care of older adults living in the community. The learners have included physicians, residents, medical students and fellows, nurses and social workers in home care, primary care, case management and community based organizations.  In addition, we have educated over 1200 home health aides on caring for patients with dementia.


And, we must educate a non-traditional workforce in community settings and empower people with knowledge about their own health and management of chronic diseases. A cornerstone of this GWEP has been the launch of a group of volunteers who have formed the Bronx Health Corps.  Of the more than 90 volunteers trained for this program, 63 qualified as health ambassadors to educate seniors in the community on chronic disease management and health behaviors.  In a s sampling of the more than 1,300 seniors educated through this program, more than 70% have reported that they have changed their behavior and more than 75% have said they perceive their health as “better”.  An exercise class led by two health ambassadors from the Bronx Health Corps was aired on NY1 recently. To view it please click this link.

We must forge partnerships between clinical systems including primary care practices and community -based organizations (CBOs) and use those CBOs as vital resources to the neighborhoods in which they are located. And, we must advocate for communication systems which enable the transfer of meaningful information from healthcare providers to community based organizations with feedback to the healthcare provider. Through this GWEP we have developed a HIPPA compliant digital system to communicate between CBOs and primary care practices. Patients can be referred for transportation, housing, nutrition, education and social services and feedback can be given to the primary practice on the meeting of goals in the plan of care.  Empowering the workforce with age specific knowledge and the community with knowledge and resources to improve health literacy and decrease fragmentation of healthcare will lead to an increase in population health, decrease the need for costly acute care resources, improve outcomes and increase provider satisfaction.

Tara Cortes is recognized for her distinguished career spanning executive leadership, nursing education, research and practice. She is currently the Executive Director of the Hartford Institute for Geriatric Nursing, and a Professor in Geriatric Nursing. Dr. Cortes has provided significant contributions to advance the health of people, particularly those with limited access to the health care system. Importantly, she has developed collaborative models with advanced practice nurses and physicians in traditional as well as nontraditional settings to enhance the care of the American elderly population.  Click here for more information on Tara Cortes.

What a Fight for Home Care Worker Protections Taught Us

By Robert Espinoza


Large-scale policy victories often take years, if not decades, to achieve.

But they’re no less sweet when they become reality.

In August 2015, the U.S. Court of Appeals for the District of Columbia Circuit unanimously affirmed a federal rule that extended minimum wage and overtime protections under the Fair Labor Standards Act (FLSA) to nearly two million home care workers. The rule had been issued in October 2013 by the U.S. Department of Labor (DOL) yet faced a protracted, two-year legal struggle that delayed its implementation. Home care workers themselves had been waiting much longer to obtain these protections under FLSA, having been excluded from this law for more than 40 years.

Wins of this magnitude transpire because activists and industry leaders make them happen—and PHI and the Eldercare Workforce Alliance were key players in a broad coalition that steered the home care ruling. (The coalition also included the National Domestic Workers Alliance, the National Employment Law Project, Caring Across Generations, and SEIU, among others.) PHI was cited more than 40 times in the original findings issued by the Department of Labor when it announced its intent to rectify this decades-long exclusion. The Eldercare Workforce Alliance brought the force of its broader constituency—physicians, nurses, social workers, and other health care professionals working with older people—to this pivotal policy fight.

And we won.

In fact, the FLSA rule might be the most important legal win for home care workers since the National Academy of Medicine issued its seminal 2008 report, Retooling for an Aging America: Building the Health Care Workforce. This report provided a visionary roadmap to strengthen the nation’s health care workforce in support of older people.

On the 10-year anniversary of this report’s release, it’s important to reflect on how far we’ve come—and what still needs to be done. Here are five takeaways from this victory.

  1. More than ever, home care workers need higher wages to make ends meet—and to deliver high-quality care.

Under the FLSA rule, home care workers are entitled to the federal minimum wage, overtime pay, and reimbursement for travel time between cases—three key aspects of compensation for home care workers. Without adequate compensation, home care workers struggle in their jobs and in their lives. (Here are the many reasons this rule mattered to home care workers and the people who depend on them every day.)

  1. A growing workforce shortage in home care is threatening the sector—and low wages are one driving factor.

Chronically low wages—about $10.50 an hour, nationally—drive many home care workers into poverty and out of this sector. Home care providers are increasingly reporting challenges in finding and keeping home care workers—a shortage that is spreading across states. In turn, older people and people with disabilities struggle to access the supports they need.

  1. Wage and overtime protections are only two parts of the broader transformation needed to elevate the role of home care workers.

As well as higher wages, home care workers need good benefits, reliable schedules, transportation and childcare supports, and more training and advancement opportunities. This sector also need workforce solutions that support these workers as primarily women, people of color, and immigrants. The entire field needs financing reform, beginning with increased Medicaid funding and adequate reimbursement rates for home care providers. And this is only the start.

  1. Aging, long-term services and supports, workers’ rights, and disability rights advocates must work together when crafting solutions for our sector.

The profound challenges facing home care workers cannot be fixed with any single-issue “silver bullet” solution. Workers, older people, people with disabilities, and families all deserve approaches that speak to their needs and aspirations, and leave none of them behind.

  1. We can imagine ­and achieve solutions that improve both the quality of the home care job and the quality of supports we all receive.

Where do we go from here? Since February 2017, PHI’s #60CaregiverIssues campaign has been positing ideas to begin fixing the growing workforce shortage in home care. The Eldercare Workforce Alliance also has a range of online resources to support health care professionals in aging. The FLSA rule win—as with many victories in our country’s history—was sparked by leaders who imagined a better world and then began making it happen.


Robert Espinoza is the Vice President of Policy at PHI (Paraprofessional Healthcare Institute), a national research and consulting organization and the nation’s leading expert on the direct care workforce. In 2009, PHI and the American Geriatrics Society (AGS) co-founded the Eldercare Workforce Alliance (EWA), with the goal of working to prepare both the health care and long-term care systems to support older Americans and their families.

Ten Years Later


Ten years ago, the National Academy of Medicine (formerly the Institute for Medicine) released Retooling for an Aging America – Building the Health Care Workforce. This seminal report laid out the tremendous challenges inherent in preparing the health care workforce to meet the needs of older Americans. While we still have a lot of work to do, the last decade has seen some important strides forward in improving the workforce.

This blog launches a yearlong series of posts about the work of the Eldercare Workforce Alliance (EWA) focused on advancing innovative solutions to preparing the healthcare workforce to care for older Americans. The EWA team has lined up an outstanding group of member contributors who will focus on specific ways we have moved this agenda forward. We invite you to join our discussion as we look to revisit past successes and celebrate the future. We are so pleased with the progress that EWA has made in improving care for us all as we age — #TogetherWeCare.

Formation of the Eldercare Workforce Alliance
To address the recommendations in the Retooling report, the John A. Hartford Foundation (JAHF) and Atlantic Philanthropies (AP) provided funding to support development of a diverse coalition of stakeholders, which resulted in the founding of the Eldercare Workforce Alliance (EWA) in 2008. As conceived by the groups that would go on to become members, EWA would serve as a voice for the eldercare workforce. EWA members identified the need to bring diverse stakeholders to the table and, to this day, organizations representing consumers, caregivers, health care professionals, providers and direct care workers have been members of EWA. EWA is the singular voice speaking on behalf of the entire workforce that cares for older people. Members are focused on how to improve the capacity of the healthcare workforce to support quality of life and independence for older Americans.

Over the next year, EWA will be celebrating the progress that we have made in achieving the recommendations set forth by NAM in 2008. As co-conveners, we want to highlight a few of our achievements in this post.

FLSA Protection for Home Care Workers
As EWA was in its formative stages, the Department of Labor was focused on revising regulations under the Fair Labor and Standards Act (FLSA) that defined home care workers as companions, which meant that they were not protected by FLSA standards regarding minimum wage and overtime protection. EWA members, many of whom had not focused on these policies, quickly came to consensus that EWA should support extension of minimum wage and overtime protection to homecare workers. We joined others in advocating for this protection and also in submitting comments to the Department of Labor on the importance of this workforce to the care of older Americans. We were delighted when the revised rule was implemented by the Department of Labor in 2015 (after a protracted legal battle).

Title VII and VIII Geriatrics Health Professions Programs
Since its inception, EWA has been the leading voice advocating for the importance of the Title VII and Title VIII geriatrics health professions programs overseen by the Health Resources and Services Administration (HRSA). Through our advocacy, we have ensured that Geriatrics Health Professions Programs funded under Title VII and VIII—programs like the Geriatrics Workforce Enhancement Program—support the development of geriatrics competence across the healthcare professions workforce.

Currently, there are 44 Geriatrics Workforce Enhancement Programs (GWEP) in 29 states. The GWEPs provide critical geriatrics training to primary care providers as well as specific education in Alzheimer’s disease and related dementia care for families, caregivers, direct care workers and health professions students, faculty and providers. This innovative program also develops and works with existing community-based services to provide patients, families and their caregivers with the knowledge and skills needed to provide quality care and support.

In 2017, EWA worked with Reps. Schakowsky (D- IL) and McKinley (R-WV) to introduce bipartisan legislation in the House to authorize and expand the GWEP program as well as reestablish the Geriatric Academic Career Awards (GACA) program. GACAs support the development of academic clinician educators in geriatrics. We are currently working with members of the Senate on introduction of a parallel bill. In addition, we worked with appropriators to secure a $2 million increase in funding for Fiscal Year 2018. We know that, without the support of our broad coalition and coordinated advocacy, geriatrics workforce training could face elimination.

Family Caregivers are Key Members of Care Team
As recommended in Retooling for an Aging America, EWA recognizes the critical role family caregivers play in the care team of older adults. In fact, national caregiver organizations participate alongside workforce associations as member of EWA to provide critical input on family caregiving. A family-centered health care delivery system that addresses the needs of family caregivers and integrates their role in the health care team is vital to supporting family caregivers. We support caregiver training, respite and recognition as part of the care team. EWA worked with its members to successfully advocate for the RAISE Family Caregiving Act to develop and sustain a national plan to support family caregivers. We will continue to provide input as the national plan is developed over the next three years.

EWA Issue Brief- Family Caregivers: The Backbone of Our Eldercare System


Looking Ahead
As we look forward to the next decade, we know that we will need to continue our focus on developing a healthcare workforce that is prepared to care for older adults. We are excited about the work that our fearless EWA staff, Amy York and Brett McReynolds, are spearheading and the connections they are building with the Health in Aging Policy Fellowship Program. That connection, through the work of Amanda Borer, is leading to the development of state-based coalitions that are focused on building the eldercare workforce. One early product that we want to highlight here is our State Coalition Building Toolkit, which offers a resource for state-based and local champions who seek to build similar collaborations in their communities.

Our Thanks
As EWA co-conveners, we are extraordinarily grateful for the opportunity to work with EWA members on advancing programs and policies that will improve quality of life for us all as we age. We are also grateful to the John A. Hartford Foundation for its continued support of this work, and to Atlantic Philanthropies for its early investments in the Alliance. Without this diverse group of stakeholders and funders, we would not be where we are today. Our thanks to all of you for believing in this work.


Spotlight: Dr. Tracy Lustig of NASEM on Retooling For An Aging America’s 10 Year Anniversary

The National Academies of Sciences, Engineering, and Medicine (NASEM) report Retooling for An Aging America: Building The Health Care Workforce celebrates its 10th anniversary on April 11th.  EWA interviews Dr. Tracy Lustig of NASEM, Study Director for the report in this edition of Spotlight as a part of its year-long #TogetherWeCare campaign.

Lustig headshot

Tracy Lustig, D.P.M., M.P.H is a senior program officer with the Health and Medicine Division of the National Academies of Sciences, Engineering, and Medicine (formerly the Institute of Medicine)

Tell us about a little bit about the National Academies of Sciences, Engineering and Medicine.

The National Academies of Sciences, Engineering and Medicine operate under a congressional charter to the National Academy of Sciences, signed by President Lincoln in 1863. The National Academies are private, nonprofit institutions that provide independent, objective analysis and advice to the nation to solve complex problems and inform public policy decisions related to science, technology, and medicine.

How did you come to look at the eldercare workforce as an issue area?
The impetus for this specific project was directly due to the efforts of a coalition of private organizations who came together to sponsor the report, but the project also built on previous issues examined by the National Academies. In 1978, the National Academies released the report Aging and Medical Education, but that report focused on the role of physicians. The landmark 2001 study Crossing the Quality Chasm noted that the workforce plays a key role in transforming to a 21st century health system. Retooling for an Aging America in many ways represents a combination of these previous efforts by providing a comprehensive look at the health care workforce as a whole in the context of the issue of health care quality.


How did you settle on your recommendations in the report?
The committee conducted a thorough analysis of the forces that shape the health care workforce, including education, training, settings of care, models of care, and the financing of public and private programs. The committee also looked at the workforce broadly to include professionals, direct-care workers, family caregivers, and the patients themselves. This included examining the published literature, commissioning several papers, convening public workshops, and inviting testimony from a wide range of experts. Ultimately, the committee’s evidence-based recommendations represent a 3-pronged strategy to fundamentally change the way that care is delivered to older adults: enhance geriatric competence, increase recruitment and retention, and redesign models of care.


Were there any surprises you encountered while doing this report?
There were several areas which yielded surprising facts. Certainly the high turnover rate among direct-care workers – with up to 90 percent of home health aides leaving their jobs within the first two years, and many facilities having over 100 percent turnover – was alarming. Other findings that stand out include the proportionately low levels of training for direct-care workers as compared to other professions and the relative lack of training for family members who are often tasked with complex medical tasks such as wound care. Further, the committee found evidence that providing education and training leads these individuals to feel more confident in their skills and also to be less likely to leave their jobs. Therefore, the committee provided specific recommendations for improving the education and training of both direct-care workers and family caregivers.


As the report is now in its 10th year- what do you hope to see 10 years from now in the eldercare workforce?

Since the report came out, attention to the health care workforce for older adults has continued at the National Academies. A follow up report looked at the mental health and substance use workforce for older adults, and a 2016 report focused on the needs of family caregivers. We will continue to focus on the workforce, particularly in the Forum on Aging, Disability, and Independence. For the report itself, the committee set a target date for their recommendations of 2030; they noted that this date was chosen because it allowed enough time to achieve significant progress but not so far in the future that the medical landscape could change too greatly. The committee noted that “the preparation of a competent health care workforce and widespread diffusion of effective models of care will require many years of effort.” Ten years in, we have seen improvements toward achieving some of the recommendations in the report, and hopefully in the next ten years progress toward fully realizing the committee’s vision of care will be even more significant.



Tracy Lustig, D.P.M., M.P.H is a senior program officer with the Health and Medicine Division of the National Academies of Sciences, Engineering, and Medicine (formerly the Institute of Medicine). Dr. Lustig was trained in podiatric medicine and surgery and spent several years in private practice. In 1999, she was awarded a congressional fellowship with the American Association for the Advancement of Science and spent one year working in the office of Ron Wyden of the U.S. Senate.
Dr. Lustig joined the Academies in 2004. Much of her work has focused on the health care workforce and the aging of the U.S. population. She was the study director for consensus studies on the geriatrics workforce, oral health, and ovarian cancer research. She also directed workshops on the oral health workforce, the allied health workforce, telehealth, assistive technologies, home health care, hearing loss, and stereotypes in aging and disability. In 2009, she staffed an Academies-wide initiative on the “Grand Challenges of an Aging Society” and subsequently helped to launch the Forum on Aging, Disability, and Independence, which she currently directs.
Dr. Lustig has a doctor of podiatric medicine degree from Temple University and a master of public health degree with a concentration in health policy from the George Washington University.