ABSTRACT

Building on the findings of the previous chapters' descriptions of family caregivers' roles and responsibilities, this chapter examines caregivers' experiences in health care and long-term services and supports as they try to fulfill these roles. The committee concludes that despite their critical role, family caregivers of older adults are often marginalized or ignored by providers and systems of care. Yet, providers assume that caregivers are not only available but also skilled and knowledgeable enough to provide the tasks prescribed in older adults' care plans. Numerous barriers impede systematic recognition and partnership with family caregivers, including payment rules that discourage providers from spending time to communicate with caregivers, misinterpretations of privacy regulations, and a health insurance model oriented to individual coverage. The chapter describes the opportunities for advancing high-quality care, focusing in four priority areas: (1) identification, assessment, and support of family caregivers in the delivery of care; (2) inclusion of family caregiver experiences in quality measurement; (3) supporting family caregivers through health information technology; and (4) preparing care professionals to provide person- and family-centered care.

THE CURRENT PARADIGM AND ITS CONSEQUENCES

It is well established that health care in the United States is often of low value, poor quality, or results in harm (IOM, 2000, 2001, 2012b). The experiences of caregivers in advocating for older adults mirror the difficulties that many Americans face in obtaining high-quality, high-value health care services. Care delivery is fragmented; there is little, if any coordination between the health care and LTSS sectors; provider reimbursement policies discourage providers from taking the time to speak with individuals about their preferences, needs, and values; services are costly; and individual's access to understandable and timely health information is often elusive.

In some ways, the challenges that individuals encounter in navigating the health care system are amplified for caregivers who are acting on behalf of an older adult. Under the status quo, care delivery simultaneously ignores and relies heavily on family caregivers to provide ongoing support to older adults with cognitive and/or physical impairments. There is a lack of shared understanding and expectations among older adults, family caregivers, and providers regarding the roles and responsibilities of family caregivers. The current paradigm has significant negative consequences for all stakeholders—older adults, families, providers, and systems of care—and presents critical ethical challenges for providers (Barnard and Yaffe, 2014; Hinton et al., 2007; Mitnick et al., 2010). These consequences include impeding information sharing between family caregivers and providers of care (Crotty et al., 2015; Petronio et al., 2004), tense and adversarial health system interactions, and expensive and unwanted care that is inconsistent with older adults' preferences (Abadir et al., 2011; Levine and Zuckerman, 1999; Srivastava, 2010). One national survey found that only one in three family caregivers (32 percent) reported that a doctor, nurse, or social worker had ever asked them about what was needed to care for their relative. Only half as many (16 percent) said a health provider had asked them what they needed to care for themselves (NAC and AARP Public Policy Institute, 2015a). Taken together these factors contribute to the emotional, physical, and financial distress of caregivers described in in the previous chapters (Adelman et al., 2014; Wolff et al., 2016b).

The Impact of Family Caregivers on Older Adults' Care

Table 6-1 provides examples of optimal family caregiver involvement in older adults' care as well as barriers to their optimal involvement. For example, physicians, nurses, social workers, therapists, and other providers routinely initiate an encounter with a new patient by asking about their health history, the medications they are on, past diagnoses, previous treatments and surgeries, adverse reactions to any drugs, and so on. When family caregivers accompany an older adult, as they often do, they help provide or supplement this information particularly if the patient is forgetful or has dementia (Bookman and Harrington, 2007). The family caregiver may encourage the older person to ask questions and actively engage the provider, thus increasing his or her involvement in his or her own health care decisions (Clayman et al., 2005; Wolff et al., 2015). However, the caregiver may help or hinder the quality of communication with providers (Laidsaar-Powell et al., 2013; Wolff and Roter, 2011, 2012). For example, family caregivers who bring their own agenda to the visit, criticize the older adult, or dominate the conversation with the provider may diminish an individual's participation in his or her own care (Clayman et al., 2005; Greene et al., 1994; Ishikawa et al., 2005, 2006; Wolff et al., 2015).

TABLE 6-1

Barriers to Optimal Caregiver Involvement in Older Adults' Care.

Reducing Health Care Utilization

The availability of a family caregiver is associated with fewer and shorter hospital stays for older adults (McClaran et al., 1996; Picone et al., 2003). The converse is true as well—complex family dynamics, providers' unfounded assumptions regarding families' ability to provide assistance, and caregiver burden and depression are also associated with delayed or otherwise problematic hospital discharges (Procter et al., 2001; Shugarman et al., 2002; vom Eigen et al., 1999; Wolff and Kasper, 2004), readmissions (Lotus Shyu et al., 2004; Schwarz and Elman, 2003), and more hospitalization (Dong and Simon, 2013).

Longitudinal descriptive studies have found that the availability of caregivers reduces home health care use and delays nursing home entry (Van Houtven and Norton, 2004). Using data from a nationally representative sample of older adults, Charles and Sevak (2005) also found that receiving a family caregiver's help substantially reduces the risk of nursing home entry. These effects are strongest for adult children providing care to a single older adult (Van Houtven and Norton, 2008).

Moreover, as noted in Chapter 5, several randomized controlled trials have demonstrated that when older adults' caregivers receive a standard assessment, training, respite, and other supports, caregiver outcomes improve. In addition, older adults' nursing home placement is delayed, they have fewer hospital readmissions, decreased expenditures for emergency room visits, and decreased Medicaid utilization (Gaugler et al., 2013; Lavelle et al., 2014; Long et al., 2013; Mittleman et al., 2006). More recent findings from the Washington State Family Caregiver Support Program further suggest that providing screening and support for caregivers lowers overall use of Medicaid long-term care services (Lavelle et al., 2014; Miller, 2012). Additional research is needed to determine the associated cost savings (Gaugler et al., 2005; Lavelle et al., 2014; Miller and Weissert, 2000; Mittleman et al., 2006; Spillman and Long, 2009).

The Importance of Caregiver Assessment

Chapter 3 described how caregivers and the caregiving experience are uniquely individual. Caregivers may share many common experiences, but individual caregiver's roles are highly variable and dependent on numerous factors that affect his or her availability, capacity, and willingness to assume critical responsibilities. Thus, providers cannot develop an individualized care plan for older adults—if a caregiver's help is needed—without assessing or knowing who the primary caregiver is and what his/her capabilities are. As Chapter 5 finds, the most effective caregiver interventions begin with an assessment of caregivers' risks, needs, strengths, and preferences. Research also suggests that primary care settings can be appropriate venues for assessing caregivers and providing them needed supports (Callahan et al., 2006; Burns et al., 2003).

A note of caution: caregiver assessments can have unintended consequences if they are used primarily to determine an older adult's eligibility for services. Anecdotal reports suggest that agencies with limited resources have used the availability of caregivers to deny older adults services that they need and are eligible for.

Overall, these findings suggest that investments in family caregiver services and supports may generate savings in both health care and social services. However, there is much to learn. Despite research showing the benefits, providers, payers, and health care organizations have yet to establish mechanisms to capitalize on or optimize the role of caregivers in the health care of older adults. A workable mechanism for documenting the identity of the family caregiver in older adults' medical records needs to be developed. For example, providers may need to create a new field in the demographic section of the electronic health record to capture caregiver information and also develop an alert to ask for updates at each new encounter.

The lack of research and investment in developing systems for routinely identifying, assessing, and engaging older adults' caregivers is striking. Moreover, although important research by the Agency for Healthcare Research and Quality, Centers for Disease Control and Prevention, Centers for Medicare & Medicaid Services (CMS), Patient-Centered Outcomes Research Institute, National Institutes of Health, and other federal agencies is assessing the effectiveness of innovations in health care delivery and payment, most of these efforts do not explicitly involve family caregivers.

Decision Making

Older adults and their families confront a wide range of decisions in care delivery and planning for future care needs. Such decisions range from whether to adjust, stop, or start a prescribed medication, the selection of alternative treatment options or procedures when confronting a major life event or diagnosis, whether to continue life-sustaining support, and making choices about residential care such as whether to move to a nursing home. A considerable research literature has focused on shared decision making in health care. Research on individual or family decisions regarding nursing home placement or other LTSS issues is scare. The term “shared decision making” is generally used to describe the process of communication, deliberation, and decision making in which one or more professionals

• share information about testing or treatment options including severity and probability of potential harms and benefits and alternatives of options given individual circumstances;
• elicit individual preferences regarding harms, benefits, and potential outcomes; and
• engage in an interactive process of reflection and discussion until a mutual decision is reached about the subsequent treatment or plan of action (Braddock et al., 1999; Charles et al., 1999; Clayman et al., 2012; Dy and Purnell, 2012).

Given that the vast majority of individuals prefer to participate in decisions about their health (Chewning et al., 2012) and that optimal decisions rely on an understanding of care recipients' values and priorities, strategies to engage people in their care have received great attention (Alston et al., 2014; Edwards and Elwyn, 2009; Fried, 2016; Stacey et al., 2012). Although the importance of family in older adults' decision making is well appreciated (Price et al., 2012; Vladeck and Westphal, 2012), relatively little attention has been directed at developing interventions to support older adults and their family members when confronting difficult decisions (Garvelink et al., 2016). The gap in knowledge is significant given variability in individual preferences for participating in medical decision making (Brom et al., 2014; Kiesler and Auerbach, 2006; Levinson et al., 2005). Moreover, older individuals who lack the capacity to make informed decisions are likely to prefer or rely on the help of family members (Stacey et al., 2012; Wolff and Boyd, 2015).

Family involvement in decision making is distinct from patient–provider decision making in numerous ways. Such decisions may occur during the course of care when older adults and their family members communicate face to face with providers or they may occur during routine conversations, such as at the dinner table or in discussions among family members that do not involve the older adult. The decisions may be made in a crisis situation or over time.

Not all family members may share the same views or possess the same information to guide decision making, leading to disagreement or conflict regarding the optimal course of care. Such differences in perspectives is an important feature of family involvement in care (Lobchuk, 2006; Urbanik and Lobchuk, 2009) as both older adults and families commonly value and expect family involvement in decision making, but that congruence regarding attitudes, decisions, and behaviors may be low (Kitko et al., 2015; Moon et al., 2016; Shin et al., 2013). As differences between older adults' and family members' perspectives are inversely associated with effective illness management and care planning (Brom et al., 2014; Kiesler and Auerbach, 2006; Kitko et al., 2015; Moon et al., 2016), strategies to more effectively involve and better support the role of family caregivers in decision making could be beneficial for both older adults and their family caregivers. The nuances and range of considerations in decision making vary widely by specific circumstances but the process and effects may be highly consequential. For example, the challenges of surrogate decision making have been widely documented and may include stress, anxiety, or emotional burdens that persist for years (Vig et al., 2007; Wendler and Rid, 2011; Whitlach and Feinberg, 2007).

Access to Older Adults' Health Information

The Health Insurance Portability and Accountability Act (HIPAA) has provisions that govern access to an older adult's health information by his or her family caregiver, other family members, or friends. The HIPAA Privacy Rule provides family caregivers three avenues of access to an older adult's protected health information (HHS, 2016):

• First, every state allows people to designate a “personal representative” via a health care advance directive (health care power of attorney). If the person has not designated a representative, most states have a statute that determines the process for identifying an authorized surrogate decision maker. If the person lacks the capacity to manage his or her affairs, a guardian may be appointed through judicial proceedings.
• Second, people can name the individual with access to their protected health information through a formal HIPAA authorization document or a signed “directed right to access.”
• Third, if there is no formally appointed representative or authorized surrogate, health care providers can share a person's information with a family caregiver if (a) the person gives permission; (b) the person is present and does not object; or (c) the person is not present and the provider determines that it is in his or her best interest to share the information. In these discretionary disclosure situations, the Privacy Rule directs providers to limit the disclosed information to that which the involved third party reasonably needs to know about the person's care or payment.

It appears that the HIPAA Privacy Rule is commonly misinterpreted as a barrier to caregivers' access to older adults' health information (Levine, 2006). Although there is no published research on the impact of HIPAA on older adults and their caregivers, anecdotal reports suggest that many providers misunderstand the law and its regulations. Providers may tell caregivers that they cannot share any health information even when the individual older adult has authorized it. Or, providers may be overly restrictive in discretionary disclosures. Institutional culture may also affect the sharing of information with caregivers.

See Appendix H for further details regarding HIPAA and caregivers' access to older adults' protected health information.

COMMITTING TO A NEW PARADIGM: PERSON- AND FAMILY-CENTERED CARE

The National Strategy for Quality Improvement (“The National Quality Strategy”), developed by the U.S. Department of Health and Human Services (HHS), calls for more transparent, accountable, and higher quality care through broad partnerships that extend beyond individual providers and settings and that actively involve individuals and their families (HHS, 2013). The strategy also calls for using quality measures to help achieve person- and family-centered care. However, this vision is not reflected in current approaches to quality measurement or care delivery and financing reform efforts.

The quest for higher quality and more affordable care has led to a growing appreciation of the impact of the broader social and physical environments in which individuals are born and their lives unfold. The World Health Organization has characterized family as “the primary social agent in the promotion of health and well-being” (WHO, 1991). As providers, payers, and society work toward higher value systems of care to support population health, the need has never been greater for delivery systems to more effectively partner with and support family caregivers of older adults with complex needs.

The committee agreed that a new vision for health care and LTSS—in which family caregivers are better supported in the care of older adults—is needed now. This vision, described in Chapter 1, requires fundamental change in the delivery of health care and LTSS, including a reorientation of care systems to a focus on family-centeredness. Family-centered care has been variably defined, but is best characterized by the National Quality Forum (NQF) as

an approach to the planning and delivery of care across settings and time that is centered in collaborative partnerships among individuals, their defined family, and providers of care. It supports health and well-being by being consistent with, respectful of, and responsive to an individual's priorities, goals, needs, and values. (NQF, 2014a p. 2)

The core concepts of person- and family-centered care, illustrated in Figure 6-1, include the support and involvement of family, as defined by each individual (NQF, 2014a). The “care team” is defined as including individuals, families, and the health care and supportive services workers who interact with individuals. Person- and family-centered care recognizes that many people—including older adults—desire or require the involvement of family members or trusted friends to obtain health and supportive services, to meet health system demands, to communicate with providers, to make health care decisions, and to help with daily health-related and other activities of daily living (Feinberg, 2012; Price et al., 2012; Torke et al., 2012; Wolff and Boyd, 2015). NQF notes that the concept of “family” specifically addresses involvement in care and need for support, but that all the core concepts extend to the family, especially when individuals are those for whom decisions must be made in full or in part by surrogates (NQF, 2014a).

FIGURE 6-1

Core concepts of person- and family-centered care. SOURCE: NQF, 2014a.

Table 6-2 describes five domains of person- and family-centered care. It notes the distinction between person-centered and person- and family-centered care and emphasizes that the family should not simply be viewed as a “resource” for a particular individual, but rather as individuals who themselves may need information, training, or support (Feinberg, 2012).

TABLE 6-2

Elements of Person- and Family-Centered Care.

Elevating the family alongside person-centered care in health delivery reform will require identifying involved family caregivers; assessing their capabilities; addressing their needs for education, training, and supportive services (e.g., counseling, respite care); and facilitating their involvement in delivery processes. Opportunities exist within the uptake of electronic health records to better capture people's health care encounters, and to incorporate person-reported and family-reported measures in clinical care. Likewise, accreditation activities related to the Patient-Centered Medical Home and Accountable Care Organizations involve documenting core elements of quality care processes, with commensurate measurement opportunities. Person- and family-centered care is a natural link between delivery innovations and the major priorities of the National Quality Strategy (National Priorities Partnership, 2011). Opportunities for the inclusion of family caregivers exist in numerous federally sponsored demonstrations, contracts, and payment reforms, yet practical approaches for inclusion and engagement of family caregivers remain poorly defined.

The need to explicitly clarify and support family caregivers in care delivery has never been greater. Transforming delivery processes so as to purposefully recognize, involve, and address the needs of family caregivers will not be a simple process, but the potential benefits to older adults and their family caregivers could be significant. Achieving this report's vision will, at a minimum, require acknowledging that older adults and family caregivers are often interdependent and that current delivery systems rely too much on family caregivers in some areas, while too little in others. Addressing these issues will require stakeholders to be catalysts for broad-based change. To this end, the committee identified four priority areas for action:

1.

Identification, assessment, and support of family caregivers in the delivery of care

2.

Inclusion of both family and caregiver experiences in quality measurement

3.

Supporting family caregivers through health information technology

4.

Preparing care professionals to provide person- and family-centered care.

Paying for Recognition, Involvement, and Support of Family Caregivers

As the predominant payers of care for older adults, Medicare and Medicaid payment and regulatory policies are critical to motivating and changing provider practice. Private payers that provide supplemental coverage to Medicare beneficiaries also have a role in creating incentives for providers to engage caregivers. Some recent innovations in Medicare and Medicaid provide the potential, although quite limited, for family- and person-centeredness in coverage, payment, and delivery of services (see Table 6-3). Recent updates to hospital conditions of participation, for example, encourage engagement and support of family caregivers in the discharge planning process. New integrated care models, such as the Financial Alignment Initiative, promote better coordinated care and support family caregivers of older adults who are dually eligible for Medicare and Medicaid. Other CMS initiatives, such as the Transitional Care Management Services Program and innovative payment and delivery models, implicitly encourage providers to actively engage or support caregivers (Alley et al., 2016; Komisar and Feder, 2011; Rajkumar et al., 2014).

TABLE 6-3

Selected Examples of How Medicare and Medicaid Provide Incentives for Person- and Family-Centered Care for Older Adults.

Medicare

In 2015, Medicare introduced a billing code that physicians, clinical nurse specialists, nurse practitioners, and physician assistants may use to be paid for non-face-to-face care coordination services for beneficiaries with multiple chronic conditions (CMS, 2015). Providers can use the code to provide 20 minutes (per month) of care management services including time spent communicating with the beneficiary's caregiver. It is a small step toward formal recognition of the value of involving family caregivers in older adults' care. However, CMS requires that the 20 minutes of service include numerous mandatory components and providers appear to be unaware that the code is available. Moreover, because Medicare payment is intended to reimburse for the beneficiaries' care only, it does not cover the supports that caregivers often need. Providers cannot bill, for example, for a comprehensive assessment of caregivers' needs (Gitlin et al., 2010). In addition, if the care recipient's treatment is completed, the provider cannot bill for any additional supports that the caregiver needs.

As this report went to press, CMS was finalizing a set of proposed revisions to Medicare regulations governing the home health benefit (CMS, 2014). The proposed revisions would require home health agencies to identify the care recipient's primary family caregiver, develop the Medicare beneficiary's plan of care in partnership with not only the older adult but also the caregiver, include education and training for the caregiver specific to the older adult's needs in the plan of care, and other measures involving caregivers.

Medicaid

The Medicaid program has a significant role in the financing of LTSS (Favreault and Dey, 2015). In contrast to Medicare, Medicaid recognizes the role of family caregivers in care planning and delivery in some circumstances (Newcomer et al., 2012; O'Keefe et al., 2010; Sands et al., 2012), particularly with respect to the delivery of home- and community-based services (HCBS) (Kelly et al., 2013; Miller, 2012). For example, federal law requires that state Medicaid HCBS waiver programs include a plan of care that could include the role of caregivers, although states have considerable latitude regarding the specific components of the care plan. Only about 30 percent of states require an assessment of family caregivers' needs (Kelly et al., 2013). In these states, the information that is collected from the family caregiver affects the individualized care plan for the Medicaid beneficiary and is also used to connect family caregivers to services and supports to meet their own needs. Questions posed in the family caregiver assessment may address domains such as family caregivers' skills, abilities, knowledge, or training needs to assist the Medicaid beneficiary; questions directly asked of the family caregiver to assess his/her well-being (e.g., self-rated health and a depression screen); and resources that the family caregiver can choose to use to address support needs of the caregiver.

In 2014, CMS released a new rule on community living for Medicaid HCBS programs. For the first time, CMS required that family caregivers' needs be addressed if their involvement is part of the care plan for persons with disabilities. However, only the 1915(i) HCBS state plan option has the new requirement for caregiver assessment (Feinberg and Levine, 2015). Moreover, anecdotal reports suggest that some state Medicaid-managed care organizations often compel unpaid assistance from a family caregiver even though federal rules require that unpaid supports be provided voluntarily (Carlson, 2016).

One example of state policy change through Medicaid is Rhode Island's Family Caregivers Support Act of 2013. The Act requires a family caregiver assessment if the Medicaid beneficiary's plan of care includes a role for the family caregiver. If a family caregiver is involved, the plan of care must address the needs of both the care recipient and the family caregiver.

As discussed in Chapter 5, individuals who need LTSS who are enrolled in Medicaid may self-direct personal care through HCBS waiver programs or personal care optional benefits, including the hiring of relatives, friends, or independent providers whose compensation is covered by the Medicaid program. Needs assessment and service planning are critical processes used to safeguard participant health and welfare and to ensure that services and supports enable participants to meet individual community living goals. States have considerable latitude in establishing the process and qualifications to ensure that providers possess necessary competencies and skills. States also increasingly require individuals who would provide personal care services to undergo background checks against abuse/neglect registries (Galantowicz et al., 2010). Little information is now available about how states evaluate qualifications of family caregivers who are paid personal care attendants, although the 2013 National Inventory Survey on Participant Direction reported that about one-third of programs require certification and that about half of programs require training of workers in skills or knowledge such as cardiopulmonary resuscitation or HIPAA (NRCPDS, 2014).

Some policies of state Medicaid programs may undermine effective caregiving (Carter, 2015). Federal Medicaid person-centered care planning rules require written service plans identifying not only the services a beneficiary will receive, but who will provide them—whether they are family caregivers or Medicaid-financed paid care. Some regulations also specify that family-provided services should be voluntary. In practice, however, some states or managed care plans reduce Medicaid-provided services based on the presence of a family caregiver, also referred to as “natural supports” (Sands et al., 2012).

Despite attention to policies and services that recognize, support, and compensate family caregivers, Medicaid policy still falls short of commitment to a systematic approach to person- and family-centered care that takes into account the needs of both the care recipient and the family caregiver—at either the state or federal level. A meaningful approach would—at a minimum—entail requirements for caregiver assessment in all HCBS options (as well as for the managed care plans that increasingly provide them) for care plans that depend on family caregivers for their enactment. A meaningful commitment to the identification and support of family caregivers would also involve oversight and review of assessment tools to assure their appropriateness and effectiveness in serving both beneficiaries and caregivers.

Administration for Community Living

Chapter 1 described the federal programs that are relevant to the adequacy of caregiver support albeit on a much smaller scale. The Administration for Community Living, for example, oversees several programs that support family caregivers. The largest is the National Family Caregiver Support Program, which distributes about $150 million to states and territories to provide caregivers with information, help in accessing services, individual counseling, education, respite care, and other services. Some states have also moved forward in supporting the assessment of family caregivers through state-funded support programs. For example, in 2012, Washington state increased its funding for the Family Caregiver Support Program by $3.45 million to expand eligibility and to increase the level of services for caregivers including more comprehensive assessment of their needs. A legislatively mandated evaluation of the expanded program found that it delayed the use of Medicaid long-term care services (Lavelle et al., 2014).

Many states have enacted legislation to raise awareness and better support family caregivers. For example, the Caregiver Advise, Record, Enable (CARE) Act, now law in 29 states, mandates that the name of the family caregiver is recorded when an individual is admitted to a hospital or rehabilitation facility, that the family caregiver is notified at the time of discharge, and that the family caregiver is afforded an explanation and is given instruction prior to discharge of medical tasks he or she is expected to perform at home. CARE Act legislation is being considered by many other states as well.

Preparing Care Professionals to Provide Person- and Family-Centered Care

For more than a decade, the National Academies of Sciences, Engineering, and Medicine has called for urgent attention to the inadequate preparation of the health care and/or social services workforce to meet the needs of older adults (IOM, 2003, 2008, 2012a, 2014). It is beyond the scope of this report to assess the curricula and licensing requirements of the relevant professions. Nevertheless, it is clear that preparing providers to deliver person- and family-centered care to older adults will require a broad-based effort—across the educational continuum and in an interdisciplinary manner—to address and ensure the competence of their respective professions to work with family caregivers of older adults. Many disciplines are likely to encounter family caregivers of older adults, including physicians; physician assistants; nurses (including advanced practice nurses); social workers; psychologists; physical, occupational, and speech therapists; pharmacists; and direct care workers (e.g., certified nursing assistants, home health aides, and personal care aides). Primary care physicians, nurse practitioners, and social workers serve an especially important role as communicator with families and caregivers. Examples of the challenges they face are presented in Box 6-1.

BOX 6-1

Perspectives of Primary Care Physicians Who Care for Older Adults with Dementia.

Although few standards for health and social services professionals' engagement with family caregivers have been developed, the priority areas for training the workforce to provide person- and family-centered care include

• recognizing family caregivers' involvement in older adults' care;
• assessing caregivers' willingness and ability to take on the tasks in older adults' care plans;
• engaging family caregivers as respected members of the care team;
• providing and communicating information to the family caregiver; and
• recognizing family caregivers' health care and support needs and helping them obtain caregiver supportive services (e.g., training, counseling, respite care) where appropriate, and referral to the caregiver's primary care physician.

Some promising efforts to identify needed standards and facilitate their implementation are under way, especially in nursing and social work (Kelly et al., 2008; Mast et al., 2012; Messecar, 2012; Mitnick et al., 2010; National Association of Social Workers, 2010; Parker et al., 2016; Rabow et al., 2010). For example, a State of the Science Symposium on Professional Partners Supporting Family Caregivers identified a set of recommended standards for social workers and nurses related to communication, assessment and practice, collaboration, and leadership. However, the standards are generally stated and lack necessary specifics regarding essential knowledge and skills. Whether any of the recommendations have been implemented in practice is uncertain.

Little attention has been paid to understanding family systems, changing family structures, and identifying, assessing, and addressing family caregiver needs as a growing area of practice in physician training. Family-Oriented Primary Care, a textbook for primary care physicians originally published in 1990, has long advocated for full inclusion of family in primary care through all stages of a person's life (McDaniel et al., 2005). It does not, however, address the skills and competencies for providers that would be required. Similarly, although the American Geriatrics Society (AGS) has defined person-centered care to include family, the AGS recommendations do not address the challenges that family caregivers face or treat caregivers as central to the care team (AGS Expert Panel, 2012). The American College of Physicians' Ethics, Professionalism and Human Rights Committee has done promising work on bioethics related to family caregivers, recognizing the evolving need for consideration of the role of family caregivers while protecting individual rights (Mitnick et al., 2010). It goes further than the AGS Panel in recognizing physicians' responsibility to plan for necessary caregiver training and to attend to caregiver stress.

Cultural competence in working with family caregivers is also essential, given the growing diversity of the older adult population and family caregivers.³ The concept of cultural competence has gained wide acceptance in health care and social services. While the importance of preparing providers for working with diverse caregivers is recognized for LTSS and the health care system, few guidelines exist on the core competencies for working with diverse caregivers and the best strategies for implementing these in systems of care. Cultural competence standards, such as the National Standards on Culturally and Linguistically Appropriate Services developed by the Office of Minority Health, are widely regarded as important for reducing health disparities in diverse populations, including access to and quality of care, and have been incorporated into professional training and continuing education. However, these cultural competence guidelines focus primarily on the individual, although competence in working with family caregivers is often noted. Many approaches to cultural competence have been developed, but evidence for the effectiveness of these approaches is modest and mixed. For example, while there is modest evidence for the effectiveness of cultural competence training interventions on provider attitudes, knowledge, and skills and individual adherence to a treatment regimen, the impact on other individual outcomes is weaker (Beach, 2007; Bhui et al., 2007; Clifford et al., 2015; Horvat et al., 2014). Few training programs have included specific content on how to work with diverse caregivers or have measured the impact of cultural competence on relevant caregiver outcomes (e.g., satisfaction or adherence).

CONCLUSIONS

The committee's key findings and conclusions are described in detail in Box 6-2. In summary, the committee concludes that despite the integral role that family caregivers play in the lives of older adults with complex care needs, they are often marginalized or ignored in the delivery of health care and LTSS, and are often ignored in public policy as well. Paradoxically, family caregivers may be excluded from treatment decisions and care planning while the providers who exclude them assume their availability to perform the wide range of tasks prescribed in the older adults' care plan. Numerous barriers impede systematic recognition and partnership with family caregivers, including the bioethical emphasis on individual autonomy, payment rules that discourage care providers from spending time to communicate with caregivers, legal issues related to individual privacy, and a health insurance model oriented to individual coverage.

BOX 6-2

Key Findings and Conclusions: Regarding Family Caregivers of Older Adults' Interactions with Health Care and Long-Term Services and Supports Systems.

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