Unpaid Family Caregiving: America at the Tipping Point – 2017

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Unpaid Family Caregiving:  America at the Tipping Point David Levy, JD, CCE 

A CareGiver Reality White Paper, February 2017: Copyright (c) 2017, CareGiver Reality, Inc. 1

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Post Election 2017  

America faces a new political dynamic, one that simultaneously confuses and confounds,  while potentially creating a major shift between the way things were and the way things are to be. Many in our society are fearful. However, regardless of what our political future may hold, today we face an existing and rapidly increasing risk equal to and possibly far worse than any a new administration or foreign entity could pose or create.  

For the past two decades, we have been moving rapidly toward a societal tipping  point — the edge of a deepening and widening abyss, one which affects more than 66 million  Americans comprised of our unpaid family caregivers (UFCs) (National Alliance for  Caregivers/AARP) and an unprepared acute and long term health care system UFCs face the withering requirements of caring for loved ones, friends and family members who can no  longer care for themselves and affects everyone and every component of society and the  acute and long term health care system is understaffed, under educated and with facilities  and financial resources to meet the chronic care needs of America. The UFCs are the backbone  and front line of long term chronic care, but are rapidly descending into this abyss with no  safety net and with no means of escape. This abyss represents the unending demands of  being an unpaid family caregiver as those demands rapidly destroy quality of life, dignity  and self-respect and present an onerous and unceasing emotional, physical and financial  burden, which with no effective formal system, are unraveling the very fabric of our society 

The Role of the Family Caregiver  

The role of unpaid family caregiver can be created by anything from Autism to Alzheimer’s  (see diagram “What Creates Family Caregiving?” below). Aging, emotional, physical and  developmental limitations, accidents, afflictions, caring for a special needs person, a  wounded veteran, a brother paralyzed in a ski accident, a wife with MS, a mother with a  stroke, a grandparent with dementia are only a few examples — and represent only a few of  the causes that can quickly create the role of family caregiver and the family caregiving  responsibilities that can last for decades. While too often defined as a “women’s issue”,  numerous studies of home-based caregiving have highlighted the ever-growing cadre of sons  and male spouses into the legions of UFCs; family caregiving is a universal role but the  burdens created are unique fingerprints of each UFC. Part of the consequence of decades of  ignoring the fundamentals of effective long term care can be seen in the increasing lack of  institutional bed capacity, caregiver literate clinical providers and properly trained direct  home care workers. These and many more issues set forth below are accelerating the  inevitable reality that, because of numbers alone, long-term care must occur in the family  home. Moreover, the direct and indirect cost burden of such care has risen and continues to  Copyright (c) 2017, CareGiver Reality, Inc. 2

rise. The combined impact on the individual UFC and on workplace productivity is  staggering. 

The annual value of unpaid family caregiving (even at a low $10 per hour) has risen to  $900+ Billion (see Item 2 under “The Numbers” below), and, while harder to quantify,  workplace productivity losses from family caregiving (at wage rate) are nearing the same  level. Left unaddressed, this rising cost burden with consequences that are difficult to  quantify has also pushed the acute and long-term healthcare system to the tipping point. 

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In a September 2012 speech to healthcare risk managers entitled “Is America Perched on a Societal Cliff Regarding Long Term Care?”, the author reiterated the foregoing premise,  stating that, “The unprecedented impacts of aging, chronic illness and, specifically, dementia  have forced long-term care into the home due to a lack of institutional bed capacity, clinical  providers and properly trained direct home care workers to meet present and future longterm  care demand.” For example, dementia brings unique influences to bear on the family  dynamic in addition to being a very predatory disease. The emotional, financial and practical  management demands of caring for people with dementia causes unrelenting stress on UFCs  and their families and because it has no regard for gender, age, and family relationships it  strikes with impunity In light of the present healthcare system’s continually focus on meeting  the clinical needs of the patient, the common denominator for all UFCs is being tasked with  the risk and responsibility for caring in-home for those with dementias with little or no prior  education or training and no support for performing the 85% of family caregiving tasks that  are practical problem solving issues.  

The Numbers and Their Implications  

The 2012 “societal cliff” has morphed into 2017’s “tipping point”, and for so much more than  dementia. The issue has many components but, in addition to fear, five concerns must be  addressed urgently. 

  1. Facility Bed Availability 

We do not have enough institutional beds for the growing population. By way of a  small example, the institutional bed requirements today for dementia care alone are greater  than the 2015 estimated total of 4.5 million beds available for all diseases across all  institutional settings (Skilled Nursing, 1,600,000; Assisted Living, 2,400,000; miscellaneous,  500,000). Moreover, fewer than 900,000 (less than 20%) of these existing beds are suitable for  ambulatory dementia care. 

  1. Impact of Medicalization of Aging 

The ability of the medical system to extend life without society providing the  infrastructure for “quality of life” is an enigma. Essentially, we have jumped over Darwin  and have created “survival of the non-fittest.” The strain it has placed on facilities and the  inability to resolve and deploy a usable clinical/facilities solution leaves UFCs as the only  

viable option to provide home-based care to the bulk of the target population – a population  that represents a daily challenge to UFCs physical and emotional capacity.  

  1. Role/Cost of the Unpaid Family Caregiving  

Historically, through myth, stereotype and assumption, the role of the UFC has been  marginalized by all elements of the clinical healthcare system. However, as detailed in the  charts below, if the UFC workload currently being performed by 65+ million UFCs averages  

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3.5 hours a day or about 25 hours of care per week (about 1,274 hours annually) and its dollar  value is calculated at a paid care worker’s pay rate of $9.00 per hour, UFC workload has a  present value of over $1 trillion dollars.  

There appears to be a lack of realization that healthcare cannot function without UFCs,  who are the real backbone of long-term care; without them, the healthcare system would  have already collapsed. We could not replace them – we have neither the revenue nor the  workforce necessary; the 10’s of million paid care workers we would need do not exist. UFCs  bear their burdens with little support and less preparation. Most UFCs try to meet their  loved ones’ ever-increasing care needs, but few can succeed without directed nonclinical  support, education, group interaction and guidance. The success of even the most capable  UFC is inextricably linked to America’s capability to educate and support UFCs and their  efforts to deal with the growing and onerous requirements of home-based care.  

Number of Hours Dedicated Weekly to Caregiving  

by Age of Family Caregiver 

Graph Data: Partnership for Solutions, Chronic Conditions: Making the Case for Ongoing Care.  Johns Hopkins, University, Baltimore, MD. (2004). Updated November 2012.  

  1. Presenteeism and Workplace Productivity  

The classic definition of presenteeism arose in England in the 1930s and was  represented by a worker who did not bring his spectacles to work and, thus, could not work  effectively. Lately, it is common to view presenteeism only as clinical “illness” in the  workplace, and while it is true that “sick” workers are ineffective workers, if they are truly ill,  they should not come to work. It is easy to spot and send home people with flu, always  recalling that a worker with a clinical illness like the flu is a patient for a finite term.  However, this form of presenteeism is not the presenteeism presented by UFCs in the  workforce. 

One of the great societal enigmas of the past 15 to 20 years has been the failure to  recognize that tens of millions of working Americans are UFCs and the extent to which this  Copyright (c) 2017, CareGiver Reality, Inc. 5

form of presenteeism contributes to incredible productivity loss. Because they are difficult to  identify, both the true number of UFCs and their impact on workplace productivity have  largely been ignored. While UFCs who show up for work and may even have “perfect”  attendance, but their failure to self-identify and their persistence in remaining “invisible” to  protect their jobs and retirement, and the fear that asking for help will typecast them as  workers who don’t give the company 100%. However, regardless of staying under the radar,  they are still dealing with family caregiver/health issues on their employer’s time. Succinctly,  UFC issues occur 7/24 and do not disappear between 9 am and 5 pm.  

In 2007 in a report was produced entitled Presenteeism: A Method for Assessing the  Extent of Family Caregivers in the Workplace and Their Financial Impact, and was based on  the American Productivity Audit (which audits 25,000+ workers). The author chose this  source because the Audit continuously polled and interviewed a portion of the national  workforce about their health and emotional issues in the two weeks prior to their being  polled and assessed how they felt those issues affected their workplace productivity. It  quickly became clear that a minimum of 20% of workers were UFCs.  

Jump to 2017: 51% of the population is female and two-family incomes are becoming  the norm. Assume that half of the 65+ million UFCs (32.5 million) are in the workplace, are  now between ages 45 and 70, and represent the mature, skilled, knowledge workers of  business and commerce ranging from seasoned corporate executives (“C suite”) to middle  management and production workers with decades of “lessons learned.” Further, assume  

Annual Value of Care Provided by Unpaid Family Caregivers 

(apportioned based on hours of care reported by UFCs surveyed) 

NUMBER OF  CAREGIVERS 

HOURS OF CARE  PER DAY 

HOURS OF CARE  PER YEAR 

VALUE AT $10  PER HOUR 

VALUE AT $12.50  PER HOUR 

32,500,000 2 23,725,000,000 $237,250,000,000 $296,562,500,000 16,250,000 3 17,793,750,000 $177,937,500,000 $222,421,875,000 8,125,000 4 11,862,500,000 $118,625,000,000 $148,281,250,000 4,062,500 8 11,862,500,000 $118,625,000,000 $148,281,250,000 4,062,500 12 17,793,750,000 $177,937,500,000 $222,421,875,000 

65,000,000 83,037,500,000 $830,375,000,000 $1,037,968,750,000 

that the average annual pay for each of the workers in this essential workforce is $60,000 with  payroll burden of 25%, averaging a payroll cost of $40 per hour. Realistically, each UFC  spends at least 1 hour every workday worrying about or overseeing by phone and email  home-based care issues. The math is simple – 32.5 million employees’ x 250 “care hours at  

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work” per year x $40 per hour = $325 billion in lost “productivity.” At 1.5 hours per day those  dollars reach $485+ billion. 

And, working UFCs themselves bear another cost — in lost wages, reduced pensions  and retirement funds, and other lost benefits. In studies conducted between 2005 and2009  and updated in 2012 by the MetLife Mature Market Group and National Alliance for  Caregiving, data revealed the following for a stratified group of 10 million caregivers over 50 who cared for their parents: 

  • An estimated total of $3 trillion in lost wages, pensions, retirement funds and benefits  was reported across the population surveyed. 
  • Women UFCs reported a loss of $142,693 in lost wages from leaving early, $131,351 in  lost Social Security benefits, and an estimated $50,000 reduction in pensions, totally  $324,044 — a significantly higher total loss compared to a loss of $283,716 for men.  

(MetLife Mature Market Group and National Alliance for Caregiving, Study of Working Caregivers and  Employer Health Costs: Double Jeopardy for Baby Boomers Caring for their Parents. June 2010; updated,  November 2012)  

  1. The Paid Caregiver Workforce 

By way of historical background, evaluations of paid caregivers in recent years have  consistently addressed the need for improved training related to family caregiving and  support of UFCs.  

In 2005 in her doctoral dissertation, “Non-Medical Skills and Competencies Needed by  Paraprofessional Caregivers”, Martha Lynn Dix-Galloway of the University of Louisiana  School of Human Resource Education and Workforce Development presented a scholarly and  extensive review that strongly highlighted the inability of direct care workers (Personal Care  Attendants, Certified Nursing Aides and Home Health Aides) to provide essential and  necessary non-medical training and support to UFCs. There is a clear message that UFCs  need a lot of non-clinical support, which is not coming from the obvious resource, the  traditional home healthcare industry.  

In 2009, the Journal of Nursing devoted an entire edition to the “State of the Science”,  presenting a collection of articles by industry experts in caregiving and nursing. These  experts indicated that “the home health and direct care industry is woefully behind and  undereducated in non-clinical family caregiving and training to interact with [U]FCs.” The  information reported supported Dix-Galloway’s research from 2005 and extended it beyond  the referenced direct care workers to those practicing in the nursing and clinical sciences  fields.  

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In 2010, Carol Whitlatch in her paper “Assessing the Personal Preferences of Persons  with Dementia” stated that, “…for people with memory loss, their preferred care provider or  caregiver is normally a close and trusted family member-typically their spouse or partner or  adult child-rather than a paid provider or other family member or friend.” She then opined  that, “Although there is no comparable data for cognitively intact adults, there is no reason to  believe their preferences would differ.”  

In a January 24, 2017 article entitled “The Workforce Shortage Has Reached Long-Term  Care. We Should Act“, Robert Espinoza, Vice President for Policy at the Paraprofessionals  Healthcare Institute (PHI, the nation’s leading authority on the direct care workforce) is  quoted as saying, 

 “In Minnesota, the vacancy rate for personal care aides has reached 14 percent,  forcing families with ailing members to rely on each other, even quitting their jobs to  make support possible. In Northwest Michigan, the Area Agency on Aging reports a  growing waitlist of people in need of home care workers, an occupation that averages  $10 an hour and is struggling to compete with fast food workers [emphasis added].  In Wisconsin, reports depict a shortage that extends beyond paid caregivers to nurses,  hospital based dietitians, and surgical technicians.” 

Mr. Espinoza noted that PHI statistics from 2015 indicate that the average paid care worker  was estimated to be earning $13,000 per year or $250 per week and that  

“For home care workers and nursing assistants—the “direct care” workforce that  provides the majority of hands-on, paid long-term care in this country —this shortage  can be explained by low wages, meager benefits, and the marginal career  advancement opportunities that are characteristic of this difficult and unsafe  occupation. Workers simply don’t want these jobs [emphasis added]. Similarly, many  long-term care providers—their employers—cite low, unappealing wages as the  primary impediment to recruiting direct care workers, pointing to a general lack of  Medicaid funding to cover these costs.” 

Further, acknowledging the enormity of the issues surrounding paid care workers and that  the existing positions are essentially viewed as “women’s work”, Mr. Espinoza concluded  with this comment: 

“A new administration should theoretically deal with a problem of this magnitude,  yet early indications of the Trump administration suggest animosity toward our  national health care arrangements, including Medicaid, as well as a virtual disregard  for older people and people living with disabilities.”  

Therefore, maintaining a care system without a viable workforce of paid care workers  and with an unresponsive Federal government, in this author’s opinion, says to the American  public, UFC or not, “You figure it out, and you fund it!” — an unlikely formula for success. 

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The paid care workforce is expected to be the fastest growing occupational category in  our economy (US Department of Labor, Bureau of Statistics, 2015), literally 5 times the size of  any other category. However, considering Mr. Espinoza’s comments, PHI data, and the  historical reality already set forth by others, it is difficult to understand where this massive  workforce of underpaid, undertrained and marginalized workers will come from. When  considering that today’s paid care workforce is mainly comprised of women of color and of  immigrant status, in the presence of a negative political climate on immigration and  continued absence of funding for teaching and training this needed workforce, it is hard to  understand how this projected growth can occur. 

In the Winter 2016/17 edition of the American Society on Aging Journal Generations (Vol 40 No. 4), entitled “A Message to the President on Aging Policy”, the ASA presented an  extensive review of where America stands with an aging society. While outlining positive  steps that can be taken, it is a sober analysis tempered with the reality that the societal effects  of aging is a vast and complex subject, one neither easily understood nor offering potential  solutions easily implemented.  

In one of the issue’s articles, “Caregiving in America: Supporting Families,  Strengthening the Workforce” by Al-jen Poo and Carol Whitlatch, the authors set an  interesting premise regarding paid care workers (PCWs): PCWs “face the same stresses and  obstacles as [unpaid family caregivers] along with special challenges that come with caring  for non-family members.” It is no secret that at this time in an aging America and for at least  the next 20 years and due to the nature of our population prior to the mid-20th Century, the  clear majority of older Americans (50 to 80+) and those with the vast majority of chronic  illnesses are and will be white. This sets in place a relational dynamic reflecting contrasting  cultures, ethnicities and races between families, care recipients and the paid care workers.  The “common ground” needed for this social/educational/professional caregiving dynamic  to work has yet to be developed. To create a foundation for effective long-term care,  education, training and open discussion, collaboration and the integration of all of the  stakeholders has to take place, if this complex relational dynamic is to have any chance of  success. 

Poo and Whitlatch set forth four issues hindering the growth of a viable home care  workforce: 

  1. The relational dynamic and the compatibility of the paid care worker and the  family, the relational dynamic described in the previous paragraph is especially  tenuous in the presence of “long distance” caregiving (i.e., family caregivers  overseeing care from a distance that prevents face-to-face interaction with PCWs). 
  2. The work of the paid care worker is “punishing and isolating” and requires unique  skills and qualities when dealing with the health and dignity of others. 

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  1. Racial issues and a workforce made up largely of immigrant women of color leads  to victimization regarding wage and hour protection and inhibits the right to  organize and unionize. They state, “All of these dynamics have created a context in  which the workforce that America leans on to care for its families stands on  extremely shaky ground logistically and financially.” 
  2. Paid care workers are predominantly poor and often burdened with family  responsibilities of their own. They ask, “Who will care for me when the time  comes?” and “How will I afford my own care?” More than 30% of paid care  workers must rely on public assistance to survive, underscoring the impact of this  extremely shaky logistical and financial ground created by other workforce issues. 

Effective, scalable teaching and training programs for paid workers and a realistic  career ladder are critical and must come from the private sector. Further, the professional  nature of the workforce must be reflected in a higher level of career path, which in turn will  create an environment in which the cultural/medical/family dynamic can more effectively  interface for reimbursement and appropriate cultural diversity.  

This white paper does a not address the cost savings that can result from having  educated and supported UFCs participate in the care process — a topic that will be addressed  in a separate white paper. However, it should be noted that the more educated family  caregivers are, and the better they understood their role in the care delivery process, the less  likely it is that UFCs will use emergency room services inappropriately, that already taxed  community resources will be used unnecessarily and that critical care protocols will be  misunderstood, resulting in failed care and decreased well-being of Care recipients. Minimal  dollars spent on education and support can lead to substantial savings and more effective use  of existing funding for the delivery of care. 

The Answers  

The picture presented for the coming years is a bleak picture indeed, but is not vastly  different from the one that I have been confronted with throughout a 30-year career. Rather  than accepting what appears to a be the inevitable decline and demise of an effective  longterm care health care system in this country, I firmly believe that there is a way to  confront these issues — the development and acceptance of an aggressive program of  education for UFCs and an expansion of training that will enhance the knowledge and skills  of paid caregivers (both in-home workers and other professionals at all levels) about the  critical role and benefit of UFCs.  

For example, to support my own efforts at reaching this goal and to help both  professional colleagues and the UFCs with whom I work, I have created needed modalities  that can be readily put in place to address some of the core challenges of caregiving. The  underlying principles of these modalities recognize: 

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  • The need to grow a more professional paid workforce by creating a cadre of “top  down” influences because paid workers cannot develop a “bottom up” response  without support and  
  • That regardless of the evolution of the paid workforce and the roles it serves, almost  all family caregiving will be performed “at home” and performed by unpaid family  caregivers with no training, direction or a clue how to even evaluate their situations —  meaning that both their knowledge and the resources available to them must be  developed and supported by “the system.” 

 Two examples of the tools developed following these principles are, first, a program  designed to create a new professional position (the “Care Integrator) and, second, the  continued development of a vital educational tool for UFCs, The Family Caregiver’s Manual

The Care Integrator — In 2014, as a part of  

my contribution to a proposed collaboration  

with a university-based medical School and  

a department of psychology, I developed a  

proprietary, educational program that leads  

to a professional role in family caregiving  

called the “Care Integrator” (CI). CI skills  

are built on an understanding of the critical  

role higher level paid care workers can play  

in bridging the knowledge and  

communication gap between the healthcare system and the challenges UFCs face in  meeting care needs.  

Easily taught to and readily learned by LPNs, CNAs and other licensed  professionals who can obtain reimbursement from insurers, the CI instructional  program combines a highly effective, hands-on practical problem solving curriculum  for dealing with UFCs with a communication approach that enables a more efficient,  effective interface between clinical providers, the needs of UFCs and of the patient  and the real world of in-home care needs. Acting as a “Rosetta stone” between the  worlds of clinical providers and family caregivers, the Care Integrator can provide a  first point of contact for UFCs, answering their questions concerning help for their  loved ones rather than UFCs having to resort to calling 911 or using costlier clinical  resources. Additionally, CIs can provide previously hard to obtain clinical and non clinical (UFC) information that can be added to the electronic medical record, adding  invaluable and heretofore unavailable metrics. In addition, through appropriate  recruitment and proper development efforts, the CI program can also provide a  workforce that can be culturally and ethnically compatible with any community of  those needing care and support.  

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The Manual: In 2016, the newest edition of my major  “workbook” for UFCs, The Family Caregiver’s Manual: A  Practical Planning Guide to Managing the Care of Your Loved One was published (Central Recovery Press). A template for family caregiving, several editions of the Manual have been published over the years, with each edition reflecting a growing body of real-world insights I have gained from real family caregivers over 30 years as a Gerontologist, Caregiver  Mediator, Family Conflict Dynamics profiler, and weekly facilitation of family caregiver groups.  

The Manual sets out a practical approach to caregiving that puts UFCs in  control by enabling them to create personal plans for providing care and ensures  understanding of that plan in the context of the unique characteristics of the loved  ones they are caring for, the nature of their personal caregiving circumstances and, of  equal importance, in the context of their roles and capacities as caregivers and as  people with their needs and lives to lead. Addressing each UFC and his/her needs in  the role of family caregiver, this individualized plan presents a unique “fingerprint”  for the UFC’s Integrated understanding of any required clinical care plan, the family  care plan and the demographics and financial status of UFCs and their loved ones, as  well as social context and medical and family dynamics. Additionally, the planning  process considers the context of culture, ethnicity, race, gender and the UFC’s role  relationship with loved ones receiving care and the family members and friends  forming the family unit, all needed and essential constructs 

These are just two examples of how consideration for family caregiving and the  unpaid family caregiver can and should be incorporated into our healthcare community, not  only because such consideration will improve the well-being of care recipients, but also  because UFC integration will result in both social and economic benefits. In the end, no  effective changes can take place without an understanding that the well-being of care  recipients is not guaranteed by a single entity.  

The most important solution to creating an effective community of care and a home  care environment that ensures the well-being of paid workers, family caregivers, and the  extended patient “family” who rely on both paid and unpaid caregivers for their continued  well-being lies here:  

We must address the individual roles of the paid workers and professionals at every  level and the integration of the UFC in the context of quality of care.  

The antiquated perceptions of how care is delivered (and received) must give way to an  understanding that quality care is a team effort — and that every member of the team plays an  equally important role deserving of respect and support in a shared community of care.  

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Skills

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October 30, 2021