Unpaid Family Caregiving: America at the Tipping Point - 2017

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

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.

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.

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.

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.

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

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.

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

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)

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.

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.

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:

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).
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.

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.”
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:

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.

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.

Unpaid Family Caregiving: America at the Tipping Point – 2017

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