Family Caregiving in the New Normal

By Robert L. Kane

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

• Language: English
• Publisher: Academic Press
• Release date: May 8, 2015
• ISBN: 9780124171299

Book preview

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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 persons with memory loss, families, and care providers are grappling with on a day-to-day basis. In many ways, the collaborative, bidirectional, and sometimes tense nature of the CPWML conferences are represented in this book, which highlights attempts to bridge the personal demands of family caregivers and the various scientific, clinical, and policy efforts designed to address the challenges raised by family caregiving in the United States.

What strikes me the most at each CPWML conference is how thankful and gracious family members and professionals are; attendees often come year after year (a handful have attended every conference). Many families who are in the throes of caregiving are in a desperate search for answers, and any kind of information or resource (even a free, daylong conference) is greatly sought after. While this suggests the value of the conference, it also raises questions: even after the many decades that we as scholars have spent conducting research on family caregiving, why do so many families still feel lost?

In some ways, I and/or the conference becomes a part of the caregiving experience for families. Several families continue to attend after their loved ones have passed away, which resonates with me deeply. On the other hand, I am often struck by how unequipped many of us experts are to actually address caregiving needs. Some family members attend year after year with very specific questions, and I often wonder if I or other expert speakers actually help them or even directly address the issues they raise. Less experienced speakers are often taken aback at the rawness of the emotions expressed, and some speakers are not prepared to manage the affective responses of families or provide individualized feedback to help address their specific issues. This, to me, speaks to a larger concern: are we, as researchers or practitioners, meeting the needs of everyday families and care professionals? The experience of providing the CPWML conference tells me that there is a persistent gap, and that scholars, policy makers, and care providers have to do more to fill it. For example, at the conclusion of one presentation on elder abuse in 2013, a heated discussion emerged about whether restraints are ever appropriate for persons with memory loss.¹ As a researcher and scholar, I have strongly assumed that restraints are inappropriate in almost all situations when caring for persons with memory loss, but this debate among audience members suggests that even the most strongly held academic assumptions should be scrutinized when engaging with real-world audiences.

While the experience is often heartbreaking and extremely gratifying, perhaps the greatest lesson I have learned while hosting the CPWML conference for the past several years is that families are most keenly interested in what they should prepare for, as well as learning about the day-to-day tools to deal with immediate issues (much as Dr. Kane observed earlier in this introduction). What can I expect now that my loved one has been diagnosed with Alzheimer’s disease? How should I prepare for the legal and financial aspects of caregiving? While we don’t need a lot of help now, what kinds of services should we know about to help us in our situation? Is an assisted living setting or a nursing home more appropriate for my relative with memory loss (incidentally, a recent review suggested that scientific literature has yet to answer this very basic question that families often pose; see Zimmerman et al., 2013)? It is one thing to talk about how to get the car keys away from a person with dementia; it is a different matter entirely to consider how to take a rifle from a card-carrying National Rifle Association (NRA) member with memory loss (an actual conundrum posed to me at one of the conferences). Perhaps one of the biggest fears and frustrations I have is that if we as a scholarly community do not answer these questions, those with more entrepreneurial interests will provide their own answers, with an eye toward a new profit source rather than actually developing solutions that work for families, their relatives in need, or other key stakeholders.

So the CPWML conference continues each year, more and more families attend each year, and I try to work and address the gaps between my science/scholarship and the pressing needs of families. Oftentimes, I feel like the research I and my colleagues are doing is absolutely necessary, and families and care professionals respond accordingly. Other times, I am not sure if what I am doing is resonating at all. This is why we decided this book was needed. What should society do to prepare to meet the day-to-day needs of family caregivers? Will family caregiving look much the same as it does now, or will sociodemographic, financial, and policy trends substantially influence how family caregiving occurs? Instead of looking backward, which we often do as scholars and academics, we took the opportunity with this book to look ahead and attempt to anticipate how family caregiving will appear in the future.

What Does Caregiving in the United States Look Like?

Many of the subsequent chapters in Family Caregiving and the New Normal delve into the current context of family caregiving in the United States in detail. Nonetheless, to provide an initial overview of the public health importance of family caregiving, we summarize some key findings that we have reported elsewhere (Gaugler, Potter, & Pruinelli, 2014). We also encourage readers to consult the subsequent chapters in the book and other key recent publications (Fortinsky, Tennen, Frank, & Affleck, 2007; Gitlin & Schulz, 2012; Kasper, Freedman, & Spillman, 2014) to obtain in-depth descriptions of family caregiving as the principal source of long-term care in the United States. Note the following statistics:

 43.5 million Americans care for someone 50 years of age or over (National Alliance for Caregiving and American Association of Retired Persons, 2009).

 66% of family caregivers in the United States are women (National Alliance for Caregiving and American Association of Retired Persons, 2009).

 Family caregivers provide 20.4 hours per week on average to relatives with health needs (National Alliance for Caregiving and American Association of Retired Persons, 2009).

 Close to three-quarters of family caregivers are White (72%), although within ethnic and racial groups, the prevalence of caregiving is more evenly distributed: 30% of Hispanic households, 28% of African-American households, 25% of Caucasian households, and 17% of Asian-American households are engaged in family caregiving (National Alliance for Caregiving and American Association of Retired Persons, 2009).

 43% of family caregivers assisted the care recipient with getting in and out of beds and chairs; 32% helped the care recipient dress; 26% assisted the care recipient with bathing or showering; 25% of caregivers helped the care recipient get to and from the toilet; 19% helped to feed the care recipient; and 19% assisted the care recipient with incontinence issues (National Alliance for Caregiving and American Association of Retired Persons, 2009).

 While two-thirds of family caregivers in the United States are providing help to one relative, slightly over 20% care for more than one care recipient, and approximately 10% provide care to three or more persons (National Alliance for Caregiving and American Association of Retired Persons, 2009).

 On average, family members have been providing care for 4.6 years.(National Alliance for Caregiving and American Association of Retired Persons, 2009).

 Much of the gerontological and geriatric literature has focused on the negative (and in some cases, positive) emotional, psychological, social, economic, and physiological implications of family caregiving (Fortinsky et al., 2007; Gitlin & Schulz, 2012).

 About 7 in 10 family caregivers (69%) have to make changes in their work schedule, decrease their work hours, or take unpaid leave due to family care demands. In addition, a typical family caregiver can also expect to lose $109 per day in wages on average due to family caregiving responsibilities (Alzheimer’s Association & National Alliance for Family Caregiving, 2004; Proctor & Dalaker, 2002).

Overview of Family Caregiving in the New Normal

Family caregiving may be the major public health phenomena in long-term care today. The prominence of family caregiving, along with the convergence of sociodemographic, economic, policy, and technology trends, led to the development of Family Caregiving in the New Normal. A component of the book that we have tried to intertwine into all of the contributed chapters was the consideration of the personal perspectives of family caregiving. This speaks to both of our own experiences—the need to ensure that our scholarship and research can resonate with the experiences of families themselves.

Family Caregiving in the New Normal is thus structured as follows:

Section I: Personal Perspectives—Caregiving in the New Normal

This set of four chapters provides personal/family perspectives on how some of the main themes of the proposed book (e.g., economic stressors; reductions in county-, state-, and federal-level programs; employment transitions; and geographic mobility) have influenced care provision for elderly relatives in need. Our goal was to include a diverse set of writers and disease contexts (Alzheimer’s disease or a related dementia versus other chronic illnesses). We also wanted to demonstrate how even professionals can run into roadblocks. The powerful contributions from Michelle Kimball, Christine Hartmann, Jerald Winakur, and Emily Kearns illustrate the personal and professional complexities of family caregiving.

Section II: Threats to Family Caregiving in the United States

Each chapter in this section addresses key historical trends and contextual factors that have shaped family caregiving for older adults in the United States, and may also threaten the status quo. Authors of the chapters in Section II provide summaries of their contributions, which are included below.

Robyn Stone of LeadingAge, an association of nonprofit senior services, describes how the sociodemographic landscape of the United States has changed the dynamics of family caregiving. Her chapter summarizes the factors that drive demand for and supply of family care between now and 2050. The exponential growth of the 85 and older population, extended years of disability, increased ethnic/racial diversity, projected downward trends in elderly economic status, changes in the healthcare delivery system, and a decline in the population most likely to provide formal care point to an increased demand for family care. At the same time, increased divorce rates and childlessness among baby boomers and rising female labor force participation among preretirees raise concerns about the future availability of family to provide informal care. The chapter concludes with a consideration of technology and whether it will or can mitigate the demand for informal care.

Jennifer Wolff of Johns Hopkins University and Barry Jacobs of Crozer-Keystone Family Medicine discuss the environmental context in which healthcare and long-term services and supports are organized, financed, and delivered, and how these factors relate to the experiences of family caregivers. After an overview of population and chronic illness trends that frame the nature and demand of family caregiving, they discuss the current health and long-term-care reimbursement and delivery environment for individuals with complex care needs and their involved family caregivers. Finally, they consider how population trends and the service delivery environment relate to family caregivers’ preparedness, the impacts of engaging in the caregiving role, and implications for clinical practice and policy solutions.

Courtney Van Houtven of Duke University Medical Center and the Durham Veteran’s Administration uses data from the Health and Retirement Study to describe how family care provided by adult children and spousal caregivers interacts with economic stress. Multiple economic factors influence whether a person becomes a family caregiver. The economic impacts of caregiving are modest in the research literature, but these readily quantifiable economic impacts may not provide a complete picture. The Great Recession offers an example of how the macroeconomic climate can affect family care activities and caregivers’ economic situations more generally. There are differences in real wealth, debt, debt to income ratios, housing insecurity, employment, and insurance coverage between caregivers and noncaregivers. Economic stressors, however, may create unintentional negative impacts on the caregiving dyad.

Section III: Policy Considerations and Family Caregiving

The chapters in this section summarize the current policy landscape of family caregiving in the United States, and how policy has and will continue to influence family caregivers and their lives. Authors of the chapters in Section III provide summaries of their contributions, which are below:

Debra Lipson, a policy analyst from Mathematica Policy Research, reviews the evolution and current status of US family caregiver policy since 1990 in several areas, including employment leave, respite, and other supports and services, as well as cash benefits and tax policies designed to reduce the financial drain related to family care provision. Despite notable policy advances, economic concerns and political forces have restrained policy makers’ willingness to provide greater support. Stronger evidence that investments in family caregiving yield savings in public spending, as well as increasing numbers of politicians having personal experiences in family caregiving, may help to raise public policy support for family caregivers in the future.

Pam Doty, Senior Policy Analyst in the Office of the Assistant Secretary of Planning and Evaluation in the US Department of Health and Human Services, and Brenda Spillman from the Urban Institute describe the major government programs and policies that provide direct and indirect assistance to caregivers of Americans aged 65 and older. The National Family Caregiver Support Program (NFCSP) is the only federally sponsored program created specifi­cally to address the needs of family caregivers of older Americans with dis­abilities and of older Americans caring for family members with disabilities regardless of age. It provides limited assistance, primarily in the form of respite and counseling services, to small numbers of caregivers. Other government assistance to caregivers is a by-product—a collateral benefit—of success­fully fulfilling other policy goals, such as expanding access to long-term care services for the elderly and younger people with disabilities. Although family caregivers are not the primary intended beneficiaries, this indirect assistance can be substantial. Doty and Spillman describe the major government pro­grams and policies that provide direct and indirect assistance to caregivers of Americans aged 65 and older who require human and technological assis­tance with functional activities such as personal care tasks (e.g., bathing, dressing, getting in and out of bed, and using the toilet), as well as other aspects of daily living (e.g., grocery shopping, cooking meals, housework, taking medications, using the telephone, and managing money). They focus exclusively on caregiver support policies and programs that operate under federal legislative authority, including programs that, though administered by state or local government entities or nonprofit organizations, are federally financed (even if they also receive state or local funding).

Section IV: A New Vision to Supporting Caregivers in the Future: Is There Hope?

The remaining chapters explore current and potential solutions to consider when meeting the various challenges to family caregiving summarized earlier in the book. The authors provide summaries of their respective chapters, which are as follows:

Elaine Wethington of Cornell University and Lou Burgio of Burgio Consulting and the University of Alabama emphasize how programs that provide support for care recipients and caregivers at home have shown promise in more recent, randomized controlled trials. However, even some of the most promising of these programs have not developed the elements necessary for translation into real-world settings such as clinical practices and community agencies. A proposed solution is to engage local stakeholders more fully in research design and effectiveness or translation trials, as well as in the process of program implementation. Some critical barriers, however, must be overcome to put this proposed solution into action. The tools for translation into communities and engagement of stakeholders are underdeveloped, especially the tools that facilitate stakeholder input to assess program feasibility and acceptability. There is also a lack of researcher consensus on how and to what extent stakeholder participation can be incorporated into research in a scientifically rigorous manner.

George Demiris, an expert in health technology and aging from the University of Washington, summarizes how technological advances have introduced new tools to support older adults and their family caregivers. Telehomecare, defined as the use of telehealth in the home, enables the monitoring of older adults and facilitates communication with remote clinicians. More recently, smart homes (namely, digitally augmented residential settings) have emerged as a way to facilitate passive monitoring of older adults in their own home. Such systems can provide information on one’s well-being and activities in the home over time, indicating overall trends and detecting cases where an intervention may be needed. There are various ethical challenges associated with the use of such technologies for aging. It is important to assess their obtrusiveness and how they may affect older adults’ relationships with their family caregivers and clinicians. Personal health records allow for the creation and storage of personal health information that is managed by older adults and their families and can be used to facilitate shared decision making. Personal health records can benefit from effective use and analysis of the big data generated by telehomecare and smart-home applications. Emerging robotic applications can provide companionship or assist with activities of daily living, as well as support rehabilitation efforts and assist with walking and overall mobility. As technology advances, new opportunities and challenges arise with the design of systems to support caregivers. If emerging information technology tools are easy to use and address real patient and caregiver needs, they can become valuable assets to a caregiver rather than a burden.

Tetyana Shippee and her colleagues from the University of Minnesota School of Public Health discuss how caregivers can work with healthcare providers and their relatives to make positive, collaborative decisions around care transitions. Family caregivers face many decisions as their disabled older relatives lose the capacity to function independently. The projected increase in the numbers of older adults with disabilities and cognitive limitations will result in higher caregiving demands, including the decision-making needs of caregivers. Knowing what decisions and challenges families face can help caregivers make decisions before crisis situations occur. Conversations between caregivers and their aging family member should start while the relative has the most faculties and capacity to share their goals and values are as they age so that their voices are heard. This chapter focuses on four decision-making scenarios: (i) advance directives, do not resuscitate (DNR) orders, and powers of attorney; (ii) decision making in families facing chronic illness and dementia; (iii) long-term-care decision making; and (iv) end-of-life decision