6
Patients and Informal Caregivers

CHAPTER SUMMARY

Patients play a sizable role in their own care, not just as recipients of care services but also as prominent actors in the delivery process. Moreover, family members, friends, and other unpaid caregivers provide the backbone for much of the care that is received by older adults in the United States. This chapter discusses the need to support patients and caregivers through a number of means, including greater opportunities for training. These training opportunities can improve the care received by older adults while also easing the strain on informal caregivers, who often feel unprepared for the tasks they are required to perform. The chapter also discusses the role that assistive technologies can play in enhancing and prolonging the independent functioning of older adults, making them less reliant on direct-care workers and informal caregivers. The committee recommends that federal agencies take steps to assist in the development and increased availability of these technologies. Taking these measures to promote the health and well-being of both patients and caregivers will help ease the strain on the workforce providing medical care for older adults.

The role of patients in the care process extends far beyond their role as recipients of services. Patients play a major part in determining treatment plans, navigating the delivery system to obtain services, and ensuring overall adherence to the selected course of treatment. For older adults, these care plans often involve multiple providers and settings, and they can find themselves functioning as coordinators of the entire process. Older adults



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6 Patients and Informal Caregivers CHAPTER SUMMARY Patients play a sizable role in their own care, not just as recipients of care serices but also as prominent actors in the deliery process. Moreoer, family members, friends, and other unpaid caregiers proide the back- bone for much of the care that is receied by older adults in the United States. This chapter discusses the need to support patients and caregiers through a number of means, including greater opportunities for training. These training opportunities can improe the care receied by older adults while also easing the strain on informal caregiers, who often feel unpre- pared for the tasks they are required to perform. The chapter also discusses the role that assistie technologies can play in enhancing and prolonging the independent functioning of older adults, making them less reliant on direct-care workers and informal caregiers. The committee recommends that federal agencies take steps to assist in the deelopment and increased aailability of these technologies. Taking these measures to promote the health and well-being of both patients and caregiers will help ease the strain on the workforce proiding medical care for older adults. The role of patients in the care process extends far beyond their role as recipients of services. Patients play a major part in determining treat- ment plans, navigating the delivery system to obtain services, and ensuring overall adherence to the selected course of treatment. For older adults, these care plans often involve multiple providers and settings, and they can find themselves functioning as coordinators of the entire process. Older adults 

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 RETOOLING FOR AN AGING AMERICA frequently communicate relevant information from one provider to another, or may even detect ways in which the treatment plans are at odds. As patients continue to age and experience declines in their health, they begin to require greater assistance in performing their roles in the health care process. In response, family members and friends assume increasingly greater responsibility for making treatment decisions, accompanying the patients on office visits, and providing other sources of support. In a great many cases, these family members and friends also become informal care- givers, providing many of the same services that direct-care workers pro- vide, including assistance with the activities of daily living (ADLs), such as bathing and dressing, and the instrumental activities of daily living (IADLs), such as driving and shopping. The number of informal caregivers in the United States far exceeds the number of paid direct-care workers. There are concerns, however, that the number of caregivers is declining—a trend that is especially worrisome in light of the fact that the direct-care workforce is already stretched thin. Any reductions in caregiver support could have serious negative implications for the adequacy of the direct-care workforce, which makes it particularly important to determine how best to support caregivers in order to maintain the availability of their services. Both patients and informal caregivers are important parts of the health care team, yet little has been done to impart the necessary knowledge or skills to these team members. Ensuring adequate communication with this part of the workforce is especially important for the older adult population because of hearing, vision, and mental acuity deficiencies (including among some informal caregivers), thereby increasing the likelihood of adverse ef- fects due to the miscommunication. Additionally, as the use of remote infor- mation technologies becomes more common, patients and their families will need to be educated on their proper use. Ultimately, any plan for enabling informal caregivers and patients to become more capable members of the health care team is likely to require increased training along with greater support from and integration with the formal health care system. PATIENTS Given the vital role that patients play in shaping and implementing their own care, they need to be viewed not just as recipients of care, but also as members of the care team. This is especially true in light of the in- creasing prevalence of chronic disease. The management of chronic illness is complex, and patients are required to take on greater responsibilities than they typically would for acute care. Managing conditions such as diabetes involves day-to-day decision making with respect to lifestyle, prevention, medication use, and other components of health and health care (Newman

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 PATIENTS AND INFORMAL CAREGIVERS et al., 2004). Self-management extends beyond basic adherence to treatment guidelines; it includes such things as self-monitoring and the application of appropriate cognitive, behavioral, and emotional responses. The evolution of the patient’s role includes an increasing emphasis on collaborative care. Health care professionals and patients are familiar with the traditional provider-patient treatment model, in which providers assume responsibility for all decisions (Funnell, 2000). However, the role of the patient has undergone a redefinition in recent years and their role is now considerably more expansive. This has altered the environment that older adults will encounter as they enter their retirement years and, in most cases, begin to utilize the health care system more extensively. Self-Management In an ideal model of collaborative care, patients first work with their providers to set realistic goals; this requires skills in collaborative goal set- ting and in the development of an action plan (Bodenheimer et al., 2002; Hibbard, 2003). Then, once the goals and the plan are set, patients are responsible for executing the daily routines that are necessary to effectively treat or ameliorate their conditions; this part of the process is termed self-management. Self-management interventions are designed to help patients understand how their behaviors affect their illness and their lives and to use that infor- mation to shape their decision making. They address real-world challenges, such as those encountered by patients who are both diabetic and asthmatic and have trouble maintaining their exercise regimens. Only a small per- centage of the educational content of self-management programs concerns disease-specific information. The majority of the content deals with generic lifestyle issues, such as exercise, nutrition, and coping skills. This self- management education supplements—but does not replace—traditional patient education, and it emphasizes the acquisition of skills rather than just knowledge (Wagner, 2000). Studies show that teaching patients these types of self-management skills is more effective than providing information alone (Bodenheimer et al., 2002). Self-management is predicated on the assumption that patients have both the ability to understand basic health care information (“health lit- eracy”) and the ability to use that knowledge to help manage their own care (“patient activation”)1 (Greene et al., 2005). Individuals with low health-literacy rates report having poorer health status and using fewer preventive services (Williams et al., 1998). In general, older adults tend to have lower health literacy and lower activation levels than younger adults 1 These concepts would not apply to older adults with significant cognitive impairments.

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 RETOOLING FOR AN AGING AMERICA (Baker et al., 1997; Scott et al., 2002), although baby boomers may prove to be an exception, as they are better educated than previous generations (Cutilli, 2007; IOM, 2004) and may be more proactive in their own health care (CBO, 1993). While there is evidence that getting older patients engaged in their own care results in improved clinical outcomes and higher patient satisfaction (Bodenheimer et al., 2002), there are a number of barriers to educating and training patients in their own self-care. Many self-management programs, for instance, are limited to a single disease or lack information on either ba- sic principles of self-management or the long-term benefits of actively man- aging chronic disease. And while there is evidence that case managers and others can successfully train frail elders in self-management skills (Chodosh et al., 2005; Ersek et al., 2003), this type of education and training is not currently reimbursable under most insurance plans, including Medicare and Medicaid (Quijano et al., 2007). Nevertheless, supporting these types of programs is important because if patients are able to manage their condi- tions more effectively, they are likely to use fewer health care resources and thereby reduce the strain on the health care workforce. Assistive Technologies As the number of older Americans with ADL or IADL limitations in- creases over the coming years, one likely result will be an increase in the use of assistive technologies (Tomita et al., 2004). These devices help with many of the issues that commonly lead older adults to leave their homes for care institutions, including the need for medical monitoring and medication management, decreased mobility, caregiver burnout, dementia, and prob- lems with eating, toileting, safety, isolation, transportation, housekeeping, money management, shopping, and wandering (Haigh et al., 2006). Assis- tive technologies are designed to support and extend the independent func- tioning of older adults, which can in turn reduce the need for support from direct-care workers and family caregivers. These technologies can also help lower rates of injury among direct-care workers and caregivers by reducing their physical strain. For example, these technologies can assist with tasks such as lateral transfers, repositioning patients up or side-to-side in bed, and bed-to-chair or bed-to-wheelchair transfers (Baptiste, 2007). The Institute of Medicine (IOM) report The Future of Disability in America refers to assistive technology devices as “items designed for and used by individuals with the intent of eliminating, ameliorating, or com- pensating for individual functional limitations” (IOM, 2007). These items include a broad range of tools and technologies that help individuals per- form ADLs and IADLs and thus reduce their need for personal assistance. Several studies demonstrate, for instance, that the use of assistive devices

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 PATIENTS AND INFORMAL CAREGIVERS can reduce the hours of personal assistance that older adults require in their daily activities (Agree, 1999; Freedman et al., 2006; Mann et al., 1999). One study found that people who needed assistance with ADLs and who did not use any assistive devices required an average of 4 additional hours of personal care per week compared with individuals who did employ the devices (Hoenig et al., 2003). With newer technologies on the horizon, it may be possible to make even further reductions in the amount of personal assistance required. Examples Assistive technologies range from the very basic to the highly complex. Examples include products such as canes, walkers, hand rails, shower seats, and bath mats, as well as durable equipment such as power wheelchairs and medical devices such as hearing aids. Recent advances in medication-related technologies include smart patches, which assist in regulating drug release, and smart caps, which are placed on medication vials and allow for remote monitoring of medication adherence. A number of more complex technologies have also been developed, such as environmental intelligence systems that assist older adults in main- taining independent functioning, reducing the need for personal assistance and putting off the time they must leave their homes for some place where others can help take care of them (Mann et al., 1999). “Smart homes,” for example, allow older adults to operate household fixtures and appliances (e.g., lights, televisions, dishwashers, window blinds, and other electrical devices) more easily. Many of these homes include motion detectors that sense movement and respond by lighting pathways; other features include remote control shelves and cupboards that can automatically adjust in height when needed for use. Smart kitchen components, such as smart microwaves and smart stoves, can help older adults in cooking their own meals. Another group of technologies, telemonitoring and telesurveillance devices, allow health care providers to monitor older adults in their homes. For patients with medical needs and cognitive impairments, these devices provide a direct link to care without the need for visits by medical personnel to the site. This can improve patient access to care, as well as the efficiency of the care provided. Although there are privacy concerns, these technolo- gies provide older adults with direct and immediate medical contact if they need it. In addition to increasing patient safety (Mann et al., 2001), this type of communication system has been shown in one study to reduce hos- pital stays, reduce demand for home-care services, and assist in relieving caregiver stress (Vincent et al., 2006).

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 RETOOLING FOR AN AGING AMERICA Product Deelopment and Aailability While many of these technologies can be produced and sold at reason- able or even inexpensive prices, others, such as robotics and smart home components, are much more costly. For patients the cost of these products can be a major impediment to their purchase and use, especially given that insurance does not always provide adequate coverage for them. In addition to cost, another significant barrier to the broader diffu- sion of these technologies is a lack of product information. Older adults frequently do not have adequate information on the basic use of specific devices, or the suitability of these devices to their specific needs (Hoenig et al., 2002). Furthermore, patients often lack information about product quality and performance. More technical assessments are needed to help patients determine the effectiveness of various assistive technologies. The IOM report The Future of Disability in America also noted that the financial incentives for developing better assistive technologies and bringing them to market are currently very weak (IOM, 2007). The report concluded that this was a persistent problem and recommended a number of countermeasures. Specifically, the report called upon policy makers to revise coverage criteria so that the criteria take into account the contribu- tion of a technology to an individual’s overall independence, including the individual’s participation in the workforce and the community. The report also recommended that policy makers eliminate or modify Medicare’s re- quirement of “in-home use” with respect to coverage of durable medical equipment and that they investigate new approaches for supplying covered technologies, as well as providing timely and appropriate repairs. Recommendation 6-1: Federal agencies (including the Department of Labor and the Department of Health and Human Services) should pro- vide support for the development and promulgation of technological advancements that could enhance an individual’s capacity to provide care for older adults. This includes the use of activity-of-daily-living (ADL) technologies and health information technologies, including remote technologies, that increase the efficiency and safety of care and caregiving. In addition to testing the use of health-information technology to improve provider communication and promote interdisciplinary care (as described in Chapter 3), research and demonstrations also need to focus on the application of assistive technologies. These demonstrations need to assess the effectiveness of these technologies in promoting functional inde- pendence and in easing the physical strain on, and the need for, direct-care workers and informal caregivers.

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 PATIENTS AND INFORMAL CAREGIVERS INFORMAL CAREGIVERS Informal caregivers2 may be relatives, friends, or neighbors who pro- vide assistance related to an underlying physical or mental disability but who are unpaid for those services. The motivation for providing this type of assistance is, most commonly, emotional commitment and personal rela- tionship. Public policy has traditionally viewed informal caregivers’ service as a personal, moral obligation, and not as an extension of the workforce. Partly as a result, research has not provided a systematic accounting of their numbers, qualifications, and competence. Families and friends of disabled older adults are the predominant provid- ers of long-term care and in general are thought to provide task assistance that is of low cost, high quality, and consistent with older adults’ preferences. In addition to the home setting, many families provide support to older fam- ily members in assisted living facilities, nursing homes and low-income senior housing and are key components in helping to manage resident decline (Ball et al., 2004). The vast majority of care recipients report high levels of satisfac- tion with the assistance received from family and friends (Kasper et al., 2000; McCann and Evans, 2002), and family members have been characterized as being more responsive than paid helpers (Greene, 1983). However, for a number of older adults—such as those who were never married and have no children—informal caregivers are not available. Moreover, for a number of reasons, the overall availability of informal caregivers is decreasing, which has led to calls to increase the support that is provided to them. While the average informal caregiver provides 20-25 hours of assistance per week (Johnson and Wiener, 2006; National Alliance for Caregiving and AARP, 2004), the intensity of help provided varies by disability level and population subgroup. Spouses, women, co-residents, and caregivers who support patients with dementia and end-of-life stages typically provide help with greater frequency and intensity (Bertrand et al., 2006; Donelan et al., 2002; Schulz et al., 2003b). Nearly 80 percent of adults who receive care at home rely exclusively on unpaid help from family and friends, while less than 10 percent received all of their care from paid workers (ILC-SCSHE Taskforce, 2007). In other words, informal caregivers provide at least some level of support for more than 90 percent of people receiving care at home. The unpaid services provided by informal caregivers have a substantial economic value when compared against the payment rates that direct-care workers receive. In fact, the value of informal home care vastly exceeds the value of paid home care (AARP, 2007). Overall, the economic value 2 Informal caregivers are also, at times, referred to as family caregivers. For consistency, the term “informal caregivers” is used throughout this report.

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 RETOOLING FOR AN AGING AMERICA derived by informal caregivers’ collective involvement and time is easily in the tens to hundreds of billions of dollars annually. Arno estimates that in- formal caregivers’ contribution to the workforce in 2004 was $306 billion, almost twice the amount spent on home-care and nursing-home services combined ($158 billion) (Arno, 2006). Similarly, the AARP calculated that the value of caregiver services had an economic value of $350 billion in 2006 (AARP, 2007). Questions remain about these numbers, however, as there are several difficult methodological challenges involved in making the estimates (see below). The following sections describe the size and composition of the in- formal caregiver population in the United States, the responsibilities they assume and the specific tasks they perform, the effect they have on patient outcomes, and possible supports that might be provided to them, such as increased training to help to promote greater competency among this group. Size and Composition Estimates of the number of informal caregivers in the United States vary widely depending upon the data source and methodology. The most commonly cited figures indicate that there are between 29 million and 52 million unpaid caregivers nationally, which represents as many as 31 per- cent of all adults in the United States. Using data derived from population estimates from two national surveys (the Survey on Income and Program Participation and the National Survey of Families and Households), Arno found that in 2004 there were 29 million Americans providing informal care services (Arno, 2006). AARP estimates that between 30 million and 38 million people above the age of 18 provide care to an adult who has an ADL or IADL limitation (AARP, 2007). An earlier study conducted by the Assistant Secretary for Planning and Evaluation (ASPE) and the Ad- ministration on Aging (AOA) using broader criteria found that each year 52 million Americans (31 percent of the adult population aged 20 to 75) provide informal care to a family member or friend who is ill or disabled (ASPE and AOA, 1998). National surveys and observational data sets show that informal care- givers for older adults are predominantly spouses or middle-aged daughters (Johnson and Wiener, 2006; Spillman and Pezzin, 2000). Married older adults tend to depend on their spouses, while unmarried individuals most likely rely on an adult child (Barrett and Lynch, 1999; Soldo et al., 1990). Adult daughters have traditionally served as the primary caregivers of frail unmarried adults (Johnson and Lo Sasso, 2006). Despite the perception that many people actively provide care to an older adult while concurrently raising children (the “sandwich generation”), household surveys indicate

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 PATIENTS AND INFORMAL CAREGIVERS that such caregivers are actually few in number because most people old enough to have very elderly parents are too old to have young children (Spillman and Pezzin, 2000; Wolff and Kasper, 2006). Individuals who actively provide assistance to an older adult while simultaneously working are substantially greater in number, representing more than half of all adult child caregivers (Johnson and Wiener, 2006). Methodologies Estimates for the numbers of informal caregivers for older adults in the United States depend on how these caregivers are defined and identified. In contrast to the results cited above, household surveys that use a nar- rower definition of caregiving examine only the care provided to a more narrowly defined group of disabled older adults, and use much shorter time-frames for providing care yield substantially smaller estimates of the number of family caregivers. For example, several iterations of the National Long-Term Care Survey (NLTCS) found 3.8 million to 4.4 million infor- mal caregivers assisting a disabled older adult in the week prior to being interviewed (Spillman and Pezzin, 2000). However, informal caregivers who are assisting older adults because of an acute-onset illness, who assist for a brief period of time prior to death, or who assist older adults residing in institutional long-term care facilities are likely to be underrepresented in many estimates. AARP identified five publications released between 2004 and 2006 that were based on nationally representative surveys and that included estimates of the number of caregivers in the United States. Table 6-1 describes the sources of data that were used for each publication and the way in which the term caregiver was defined. Because of the differing definitions of caregiving in the different survey instruments, the differing ages of care recipients, and the various dates of the surveys, the number of caregivers reported is not directly comparable across sources. Recent Trends For a variety of reasons, the overall availability of informal caregivers is decreasing (Wolff and Kasper, 2006). The factors contributing to this trend include the entry of more women into the workforce (increasing the number of other obligations they face), decreased birth rates (resulting in fewer children available to provide care), and the geographic dispersion of families (stemming from job migration and increased divorce and remar- riage rates) (Fleming et al., 2003; Stone, 2000). The demographic make-up of informal caregivers is also changing, reflecting various health and demographic trends among older adults. For

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0 RETOOLING FOR AN AGING AMERICA TABLE 6-1 Recent Studies Giving Estimates of Caregiving Prevalence and/or Hours Publication Source Data and Year Caregiver Definition Estimated Prevalence and Estimates for 2004, SIPP: Care recipient 15+, with Economic Value of Family updated from 1986 Survey health condition, caregiver Caregiving, by State (2004) of Income and Program 15+, within last month; (National Family Caregivers Participation (SIPP) and NSFH: Care recipient 18+, Association & Family 1987-1988 National Survey caregiver 18+, with long-term Caregiver Alliance, 2006). of Families and Households illness or disability, within last (NSFH) month Many Older Americas 2002 Health and Retirement Care recipient any age, Engage in Caregiving Study caregiver 55+, within last Activities (Johnson and month (for care of spouse) Schaner, 2005). or last 2 years (for care of parents/in-laws) A Profile of Frail Older 2002 Health and Retirement Care recipient 65+, ADL or Americans and Their Study IADL dependency, caregiver Caregivers (Johnson and 18+, within last month Wiener, 2006). Caregiving: A National 2000 Behavioral Risk Care recipient 60+, with Profile and Assessment Factor Surveillance System long-term illness or disability, of Caregiver Services and caregiver 18+, within last Needs (McKune et al., month 2006). Caregiving in the U.S. Survey designed for the Care recipient 18+, ADL or (National Alliance for publication, 2003 IADL dependency, caregiver Caregiving and AARP, 18+, within last year 2004). SOURCE: AARP, 2007. example, spousal caregivers are increasingly older themselves. The propor- tion of spousal primary caregivers who are aged 75 and above increased from 38 percent in 1989 to 47 percent in 1999 (Wolff and Kasper, 2006). Given the increasing ages of care recipients and their spouses, children are fulfilling the role of primary caregiver more and more often (Spillman and Black, 2005; Wolff and Kasper, 2006). This trend may at least partly explain why the data show declines in secondary caregiving, as adult chil- dren who previously filled in as secondary caregivers now find themselves assuming principal responsibility. Spillman found that the declines in aggre- gate numbers of informal caregivers between 1984 and 1994 were largely attributed to a drop from 1.7 million to 1.1 million individuals serving as secondary caregivers, with no evidence to suggest fewer primary caregivers

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 PATIENTS AND INFORMAL CAREGIVERS (Spillman and Pezzin, 2000). Another study found that in 1999 just 28 per- cent of primary caregivers received assistance from other family members and friends, a decline from 39 percent in 1989 (Wolff and Kasper, 2006). A number of studies found that during the decade ending in 1994, chronically disabled older adults increasingly relied on paid care (Liu et al., 2000). In many cases, however, primary caregivers simply “go it alone.” In 1999, 53 percent of primary caregivers were the exclusive source of assistance, com- pared to just 35 percent of primary caregivers in 1989 (Wolff and Kasper, 2006). Primary caregivers with no secondary caregiver involvement were most likely to be caring for the least impaired recipients and least likely to be caring for the most disabled. Tasks and Responsibilities Informal caregivers assume many different responsibilities in providing care support for older adults (Table 6-2). In performing these functions, they in effect take on the roles of both patient and provider. On the one hand, they take responsibility for much of the patient’s role with respect to logistics, care management, and medical decision-making. For example, they often schedule medical appointments for older adults, provide trans- portation, and handle billing questions. They assume greater responsibility in presenting the patient’s history and listening to the clinicians’ assessments and instructions. They frequently make, or influence, decisions regarding the appropriate course of treatment. They also take on a health status monitoring function, as envisioned under the self-management paradigm described previously. On the other hand, caregivers also take on the role of health care provider, performing many of the functions that direct-care workers perform on a paid basis, including support with ADLs and IADLs. The sections below detail several of these roles. Actiities of Daily Liing and Instrumental Actiities of Daily Liing Informal caregivers provide older adults with help in performing ADLs—typically bathing, dressing, eating, toileting, and transferring—and IADLs, such as shopping, meal preparation, money management, light housework, and laundry. Data from the NLTCS and its Informal Caregivers Survey indicate that caregivers commonly assist with the full range of these tasks. In one study, large percentages of primary caregivers reported helping chronically disabled older adults with shopping and/or transportation (85.3 percent), household tasks (77.7 percent), finances (49.4 percent), personal care and nursing (48.5 percent), and indoor mobility (35.1 percent) (Wolff and Kasper, 2006). A substantial portion of informal caregivers (43-53 per-

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0 RETOOLING FOR AN AGING AMERICA immediate family members to perform caregiving services for pay, as well as the option to use that money to hire direct-care workers. These types of consumer-directed programs raise a number of issues, such as their potential impact on direct-care workers, who typically receive even lower pay, fewer benefits, and little or no training or supervision rela- tive to workers hired through an agency (Benjamin and Matthias, 2004). Overall, though, differences in the levels of job stress and satisfaction are thought to be minor, the experiences of patient-directed workers tended to more positive (Benjamin and Matthias, 2004; Foster et al., 2007). More- over, informal caregivers were shown in one study to be more satisfied with the Medicaid recipients’ overall care and their own lives, as compared to a control group, and, that they experienced less financial and physical strain (Foster et al., 2007). In addition, states have put in place a number of measures to improve the basic functioning of the program, such as pro- cessing payroll for directly-hired workers in accordance with tax laws and providing training and assistance to Medicaid recipients, or their designees, in recruiting, hiring, training, managing, evaluating, and dismissing workers (Cash & Counseling, 2006). While a number of programs and policies either directly target, or indirectly influence, the well-being of informal caregivers, the supportive programs that exist are generally small, poorly funded, and fragmented across the federal, state, and local levels. The sections below highlight the three areas in which caregivers frequently request additional support: train- ing, respite, and financial assistance. Training Informal caregivers are often required to perform a number of func- tions for which they may feel inadequately prepared. As described previ- ously, this can include basic tasks such as lifting and turning, medical tasks such as administering medications and injections, and the use of technolo- gies such as mechanical ventilation. Instruction in how to perform these types of tasks would not only improve patient care, but it would also reduce the stress and burden placed on caregivers. Medicare does not currently include any provisions to help informal caregivers get the education and training they need to competently assist beneficiaries in the post-discharge period. Direct-care workers might be able to perform this function, for instance, but they do not currently receive reimbursement for it. Some have proposed establishing a national training center that would identify and disseminate best practices, provide training, and evaluate approaches to improving caregiver competence. Such an effort would combine the available research with current practices in caregiver assessment and education.

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 PATIENTS AND INFORMAL CAREGIVERS To the extent that an older adult is dependent on an informal caregiver— for example, in transitioning from hospital to home—clinicians need to explicitly assess the caregiver’s abilities, needs, and competence to perform the required tasks. Thus developing methodologically rigorous caregiver as- sessment tools is a necessary first step toward the routine use of these tools in clinical practice and, eventually, toward developing effective programs to prepare caregivers for their roles. Respite Respite is among the most common requests of informal caregivers (Jenson and Jacobzone, 2000), and ensuring that it becomes more widely available is one of the goals of the National Family Caregiver Support Program and Lifespan Respite Care Bill. At present, support services for informal caregivers, including respite care, are delivered mainly by state and local agencies. This approach has the advantage that it makes it easier to customize services to accommodate various characteristics of geographic and cultural subgroups, but the resulting variation creates complexity in the system overall (Feinberg and Newman, 2006; Stone and Keigher, 1994). Policy makers have considered establishing a defined, national respite care benefit program for informal caregivers. A number of decisions would have to be made about the design of such a national program, including the size and the structure of the benefits (e.g., service voucher versus cash allowance, and whether the benefit needs to be uniform or needs to vary according to the severity of the recipient’s disability) and the particulars of the eligibility criteria (e.g., whether the benefit needs to be means-tested and whether it needs to be restricted to certain categories of caregivers). Although the specific provisions vary widely, a number of other countries have adopted formal respite-care programs for informal caregivers, either as part of comprehensive long-term care reform (e.g., Germany and Japan) or as freestanding caregiver programs (e.g., Canada and Australia) (Jenson and Jacobzone, 2000). As the predominant health insurance program of older Americans, Medicare is relevant to—and, in many ways, reliant upon—informal care- givers. Yet aside from covering respite care through the hospice benefit, the Medicare program does not currently consider informal caregivers in formal policy. Financial Assistance Providing financial assistance to family members acting as caregivers could have a negative effect on employment and may also have financial ramifications for the caregivers themselves. Studies indicate that some fam-

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 RETOOLING FOR AN AGING AMERICA ily members acting as caregivers quit their jobs or take time off work, are forced to take out loans or mortgages, or make other life changes in order to be able to provide assistance (Covinsky et al., 2001; Emanuel et al., 2000). In one study of severely ill patients of all ages, 31 percent of fami- lies reported that most of their family savings were lost; smaller numbers of families reported having to move to a less expensive home (6 percent), delay medical care (6 percent), or alter educational plans for another family member (4 percent) because of the cost of patients’ illness (Covinsky et al., 1994). Adult daughter caregivers have been shown to reduce their own la- bor participation or leave the workforce entirely (Ettner, 1995; Johnson and Lo Sasso, 2006). And the opportunity costs related to caregiving, including foregone earnings, retirement savings, and employer-sponsored benefits, may actually exceed the direct costs, such as the time spent in direct care, out-of-pocket expenses, and costs associated with adverse health effects (Moore et al., 2001). The existence of these opportunity costs makes it even more important to come up with effective policies to promote financial, retirement, and health care security for informal caregivers who leave the workforce to care for an older adult. Among the strategies that have been considered are tax incentives (including credits, deductions, or exemptions), cash allowances, and provisions that allow an accumulation of Social Security credits for caregivers. Employer-based approaches have focused, among other things, on restructuring the workplace to facilitate greater flexibility, the provision of family and medical leave, access to supportive services such as adult day care, and the availability of tax-deductible dependent-care assistance programs. And given the high costs and difficulty that individuals face in getting health insurance outside of the workplace, some have suggested providing caregivers with government-assured access to coverage through measures such as broadening Medicare eligibility to include informal care- givers for older adults. There are limited data with which to assess the relative merits of these options. One report examined how several countries’ informal caregiver programs affected women and found that caregiver allowances as typically implemented did not approach a labor market wage (Jenson and Jacobzone, 2000). Instead of focusing on short-term strategies such as tax credits or allowances, that report advocated greater emphasis on longer-term compen- satory strategies such as pension rights. Several states offer tax incentives for family caregiving (Stone and Keigher, 1994), which may be structured in a variety of ways. As some tax incentives may benefit higher-income families (Keefe and Fancey, 1999; Stone and Keigher, 1994), the establish- ment of any federal policy requires careful deliberation. While the evidence is far from definitive, the limited empirical data indicate that the magnitude of relief afforded to informal caregivers through existing programs and

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 PATIENTS AND INFORMAL CAREGIVERS policies is largely symbolic rather than meaningful (Jenson and Jacobzone, 2000). Research in this area is critically important and is a task that could be undertaken by a national center spanning multiple disciplines and federal agencies. As described in Chapter 3, the committee recommends that the Con- gress and private foundations increase support for research that promotes the effective use of the workforce to care for older persons. One important topic that needs to be investigated through research is the effect of financial incentives on informal caregiving. CONCLUSION Patients and informal caregivers play a substantial, but often underap- preciated, role in the health care delivery process. Their roles will be even more substantial in the future, given the rising incidence of chronic disease, which requires greater self-monitoring on the part of patients, and the rap- idly increasing number of older Americans, which will place greater respon- sibilities on family and friends to provide care assistance. Informal, unpaid caregiving is an essential component of an optimal health care workforce for an aging population. However, the trend toward fewer informal caregiv- ers at a time when the number of older persons is expanding underscores the importance of identifying effective strategies to support informal care- givers, such as offering them increased training opportunities. It will also be important to develop and distribute technologies that promote greater independent functioning among older adults and reduce their reliance on the direct-care workforce and on informal caregivers. REFERENCES AARP. 2007. Valuing the inaluable: A new look at the economic alue of family caregiing. Washington, DC: AARP. Agree, E. M. 1999. The influence of personal care and assistive devices on the measurement of disability. Social Science and Medicine 48(4):427-443. Allen, S. M., and V. Mor. 1997. The prevalence and consequences of unmet need. Contrasts between older and younger adults with disability. Medical Care 35(11):1132-1148. AOA (Administration on Aging). 2007. The national family caregier support program. http://www.aoa.gov/prof/aoaprog/caregiver/careprof/progguidance/research/NFCSP_ BROCHURE.pdf (accessed October 10, 2007). Arno, P. S. 2006. Economic alue of informal caregiing: 00. Presented at the Care Coor- dination & the Caregiver Forum, Bethesda, MD. January 25-27. ASPE and AOA (The Office of the Assistant Secretary for Planning and Evaluation and the Administration on Aging). 1998. Informal caregiing: Compassion in action. Washing- ton, DC: Department of Health and Human Services (HHS) and AOA.

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