Family Caregiving in the New Normal

Joseph E. Gaugler, Robert L. Kane, Joseph E. Gaugler, Robert L. Kane

• Publisher: Academic Press
• Year: 2015
• ISBN:
  9780124171299
• Topic: Psicologia
• Subtopic: Psicologia dello sviluppo

Family Caregiving in the New Normal discusses how the drastic economic changes that have occurred over the past few years have precipitated a new conversation on how family care for older adults will evolve in the future.

This text summarizes the challenges and potential solutions scientists, policy makers, and clinical providers must address as they grapple with these changes, with a primary focus given to the elements that may impact how family caregiving is organized and addressed in subsequent decades, including sociodemographic trends like divorce, increased participation of women in the workforce, geographic mobility, fewer children in post-baby boom families, chronic illness trends, economic stressors, and the current policy environment.

A section on the support of caregivers includes technology-based solutions that examine existing models, personal health records, and mobile applications, big data issues, decision-making support, person-centered approaches, crowd-sourced caregiving such as blogs and personal websites that have galvanized caregivers, and new methods to combine paid and unpaid forms of care.

• Provides a concise "roadmap" of the demographic, economic, health trends, and policy challenges facing family caregivers
• Presents potential solutions to caregiving so that scientists, policymakers, and clinical providers can best meet the needs of families and communities in the upcoming decades
• Includes in-depth, diverse stories of caregivers of persons with different diseases who share perspectives
• Covers person-centered care approaches to family caregiving that summarize effective community-based services of psychosocial intervention models
• Examines how existing efficacious models can more effectively reach and serve individual families

Chapter 1

Introduction

Family Caregiving in the New Normal

Joseph E. Gaugler¹ and Robert L. Kane², ¹School of Nursing, University of Minnesota, Minneapolis, MN, USA, ²School of Public Health, University of Minnesota, Minneapolis, MN, USA

Family caregiving is central to the long-term care system of the United States. Families provide the majority of assistance to older Americans in need. Although this care is largely unpaid, estimates of how much it would cost to pay for a healthcare provider to give similar amounts of care far exceed that of more commonly recognized sources of long-term care, such as home health services or nursing homes. While there is a large body of research on the current state of family caregiving in the United States, few studies have attempted to grapple with the future of family caregiving as our society stands on the precipice of change: some of it was decades in the making, and some of it was spurred by the recent economic downturn (the Great Recession) that began in 2008, from which we are still recovering. We believe that it is important to lay out a “road map” of the challenges (demographic, economic, health trends, and policy) and possible solutions to help individuals, family members, communities, and we as a society to better understand how to meet the needs of caregiving families. With the many disruptive and converging social, political, economic, and technological trends now emerging, how can we best support family caregivers as they provide help to their older relatives now and in the future? This introduction addresses all these points.

Keywords

Caregiving, family, long-term care, health care, politics, economics, technology

Family caregiving is central to the long-term care system of the United States. Families provide the majority of assistance to older Americans in need. Although this care is largely unpaid, estimates of how much it would cost to pay for a healthcare provider to give similar amounts of care far exceed that of more commonly recognized sources of long-term care, such as home health services or nursing homes. While there is a large body of research on the current state of family caregiving in the United States, few studies have attempted to grapple with the future of family caregiving as our society stands on the precipice of change. Some of these changes were decades in the making, and some were spurred by the recent economic downturn (the Great Recession) that began in 2008 and from which we are still recovering. We found this scholarly gap problematic, given the importance of families in the US long-term care system.

The social, demographic, and economic trends (as well as political shifts) that have converged over the past several decades will likely have major implications for the future of caregiving. Changes in the political landscape at the federal, state, and even local levels have affected the availability and accessibility of community-based services and supports, and hence have placed greater demands on families. Massive recent changes to our current healthcare system will inevitably affect family caregiving, and technology is more accessible than ever via networked smartphones, tablets, and other handheld devices. These rapidly evolving technologies could further influence how family caregiving is provided.

The disruptive changes that have occurred in the past several decades can be seen as both good and bad news. The bad news is that caregiving is still caregiving, and there may be pressures to get more of it from fewer caregivers. The increasing prevalence and duration of chronic illness among older persons may exacerbate the pressures of caregiving for families. The good news, though, is the increasing recognition of the roles that families play in the provision of such care. Technologies are now available to potentially enhance care coordination, and more information than ever is available to assist families throughout the course of a relative’s need for help.

We believe that it is important to lay out a “road map” of the challenges (demographic, economic, health trends, and policy) and possible solutions to help individuals, family members, communities, and we as a society better understand how to meet the needs of caregiving families. With the many disruptive and converging social, political, economic, and technological trends, how can we best support family caregivers as they provide help to their older relatives now and in the future?

This introductory chapter reflects the larger structure of Family Caregiving in the New Normal: we begin with the personal experiences of Robert L. Kane, MD, and Joseph E. Gaugler, PhD (the coeditors of this book), and then identify how and why the personal dimensions of caregiving can highlight the chasms between science, policy, practice, and the day-to-day needs of family caregivers. We conclude with an overview of how the various contributors and chapters of Family Caregiving in the New Normal help to address these challenges, and offer some of our own insights.

The Personal Dimension: Robert L. Kane, MD

My caregiving epiphany occurred when my mother suffered a stroke in 2000. My sister and I quickly formed a caregiving alliance. I served as the case manager, and she provided daily care and oversight. Through a series of experiences with hospitals, assisted living facilities, and nursing homes, I learned that even a person with a reasonable ability to pay for care, assisted by a knowledgeable case manager and a devoted daughter, cannot make the system work. We encountered numerous events in which the care system was overly rigid and unable to solve simple problems that would have made their lives and ours (especially my mother’s) much easier.

When my mother died 3 years later, I reacted as a good academic should—I wrote a book about it (Kane & West, 2005). I was amazed by how many of my colleagues who read the book responded that they could have written the same thing. Our experience was far from unique. Based on this experience (and some traditional academic research), I offered some observations about caregiving and what it takes to be a successful caregiver, which I summarize here (Kane & Ouellette, 2011).

Let me start with a few general observations. We need to acknowledge that the system is broken—it provides services poorly. Most of the policy discussions I hear are about ways to pay for care, but these miss the central point. We are paying a lot for something we don’t want.

My mother had reasonable resources and a strong support system, but we could not get her the care she needed. Finding funding will always be a challenge, but even if one is paying for care privately, he/she can’t get the kinds of services and support that is wanted and needed. Having money helps, but it does not solve the problem. The real issues go much deeper. The infrastructure needs to change. We need real options. We need more ands and fewer ors. One should not have to choose between quality of life (QoL) or quality of care (QoC).

Caregiving is a multisplendored thing. Caregivers fill a wide range of roles. In addition to providing direct supportive services, they are the major case manager/care coordinator for the older person being helped. They are the information brokers. Not only must they schedule and keep track of appointments, but who else knows all the medications their loved one is prescribed or the full range of their loved one’s diagnoses? Each clinician an older person sees acts as if he/she were an island; each of them has little knowledge of what is going on in the larger world of this patient, and even less in the life of a family caregiver. They are like high school teachers assigning homework as if their class was the only one the student had. It falls to the caregiver to ask if the new medication can replace something on the already long list of extant drugs or whether the new drug will interact with those already prescribed. Family caregivers likewise need to understand finances and insurance coverage, and they are also the ones who must interpret symptoms and be sure that the clinician considers the full totality of the patient’s living situation. They have to ask the hard questions and advocate for the best feasible care. Caregiving is hard work, and not everyone is cut out to be a caregiver.

Caregiving does not stop when a person enters residential care, such as a nursing home or assisted living facility. In these situations, “squeaky” wheels do get a disproportionate amount of grease. Errors in such facilities are common, and staff under the pressure to meet a heavy workload sometimes skip or skimp on tasks. Family caregivers are thus the monitors and the advocates for better care for their relatives. Advocacy is crucial but difficult, as family caregivers often need to negotiate for better care. They also need to keep an eye out for service lapses and at the same time acknowledge good service. It is essential for family caregivers to choose their battles carefully for fear of alienating the affections of people who control the older person’s life. Family caregivers cannot demand that everything be done to their standards, but at the same time, they cannot ignore inadequate care or egregious assaults on QoL.

I have learned a few guiding principles of caregiving:

1. Caregiving can last a long time. Pace yourself. A baby boomer could be a caregiver for one or more family members for decades. Be a marathoner, not a sprinter.

2. Long-term care can be expensive. Costs come both in dollars and in the toll it takes on everyone involved.

3. Caregiving is hard work. Not everyone is cut out to be a caregiver.

4. Families are central. Family members play a primary role in caregiving even after an older person is institutionalized. Sometimes they do it collectively. More often, one or two family members rise to the challenge. When that happens, the rest of the family should do everything possible to support that effort. Absentee critics are not welcome.

5. Determine your priorities. Caregivers need to consider carefully what outcomes they are most anxious to maximize and how their priorities jibe with the older person’s.

6. Set realistic expectations, but be willing to revise those expectations dramatically when needed to fit reality. You might have to settle for less than you would expect if you were doing everything yourself, but you can’t do everything all by yourself all the time.

7. Determine your risk tolerance. Frail elderly people may be excessively restricted by concerns about their status as “vulnerable adults.” As a result of a strong sense of protectiveness, they may lose the opportunity to take informed risks. Make sure that the rest of the family agrees with the levels of tolerable risk.

8. Finally, things change. Caregivers must be prepared for the situation to shift and the concomitant demands to change as the frail person’s condition changes.

Decision making is a central aspect of caregiving. Caregivers do not necessarily make decisions, but they do need to be involved, and they need to make sure that decisions are made carefully. In general, good decisions follow a structure that starts with identifying what goals we are trying to maximize. This step may require some active introspection to get those involved in thinking about what is truly most important. The first decision then is what type of care will most likely achieve the goals perceived as most important. Once that is determined, the next step is to decide who the best provider of selected services is. The criteria for these two decisions are quite different. The first step is based largely on effectiveness; it requires expert advice on what evidence can tell us about what would work best. The second revolves around preferences. Issues like location, amenities, and quality are salient.

Caregivers need help. Most come into the role ill prepared. They have no prior experience and no training. It is unrealistic to believe that they will have read the so-called “caregiver manual” before being thrown into the fray. The challenge, then, is to provide practical support that will help them do their jobs better. Tools and training are typically more valuable than moral or even emotional support. I have written a survival guide for caregivers designed to help with their momentous undertaking (Kane & Ouellette, 2011).

The Personal Dimension: Joseph E. Gaugler, PhD

Every year (with the able assistance of Mark Reese, MA, LMFT, PC, and my research assistants at the University of Minnesota), I convene a community education event at the University of Minnesota called “Caring for a Person with Memory Loss” (CPWML; see http://www.nursing.umn.edu/memoryloss). This conference began for less than altruistic reasons: I organized it with the goal of recruiting more participants into my various research studies. However, the response from the community of family caregivers for free education on memory loss was overwhelming. We relied on emails and word of mouth to advertise the conference, which was first offered in May 2008. Approximately 90 persons attended the first conference, but demand from families, professionals, and even persons with memory loss themselves motivated us to offer the conference on an annual basis. Attendance has increased to a recent high of 330 attendees. Attendees often include many family members as well as the parent or spouse suffering from memory loss.

What makes this conference popular, in my opinion, is its audience-driven nature; attendees dictate the content and outline issues that are most important to them. Each conference includes not only presentations (the topics are selected based on audience feedback from prior CPWML conferences), but also a free exchange of ideas involving key issues that ...