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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 services but also as prominent actors in the delivery process. Moreover, family members, friends, and other unpaid caregivers provide the back- bone 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 unpre- pared 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 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 241
242 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 decliningâa 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
PATIENTS AND INFORMAL CAREGIVERS 243 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 patientâs 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 supplementsâbut does not replaceâtraditional 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 (âhealth lit- eracyâ) and the ability to use that knowledge to help manage their own care (âpatient activationâ) (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 â These concepts would not apply to older adults with significant cognitive impairments.
244 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 âitems designed for and used by individuals with the intent of eliminating, ameliorating, or com- pensating for individual functional limitationsâ (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
PATIENTS AND INFORMAL CAREGIVERS 245 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). âSmart homes,â 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).
246 RETOOLING FOR AN AGING AMERICA Product Development and Availability 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 individualâs overall independence, including the individualâs participation in the workforce and the community. The report also recommended that policy makers eliminate or modify Medicareâs re- quirement of âin-home useâ 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:â 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 individualâs 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.
PATIENTS AND INFORMAL CAREGIVERS 247 INFORMAL CAREGIVERS Informal caregivers 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 caregiversâ 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 adultsâ 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 adultsâsuch as those who were never married and have no childrenâinformal 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 â Informalcaregivers are also, at times, referred to as family caregivers. For consistency, the term âinformal caregiversâ is used throughout this report.
248 RETOOLING FOR AN AGING AMERICA derived by informal caregiversâ collective involvement and time is easily in the tens to hundreds of billions of dollars annually. Arno estimates that in- formal caregiversâ 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 âsandwich generationâ), household surveys indicate
PATIENTS AND INFORMAL CAREGIVERS 249 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
250 RETOOLING FOR AN AGING AMERICA TABLE 6-1â 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
PATIENTS AND INFORMAL CAREGIVERS 251 (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 âgo it alone.â 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 patientâs 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 patientâs history and listening to the cliniciansâ 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. Activities of Daily Living and Instrumental Activities of Daily Living Informal caregivers provide older adults with help in performing ADLsâtypically bathing, dressing, eating, toileting, and transferringâand 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-
252 RETOOLING FOR AN AGING AMERICA TABLE 6-2â Health-Related Responsibilities Assumed by Informal Caregivers Role Function Examples Companion Provide emotional Discuss ongoing life challenges, troubleshoot problems, support facilitate and participate in leisure activities Coach Encourage patient Prompt patientâs engagement in health care, encourage self-care activities lifestyle (diet, exercise) and treatment adherence Homemaker Manage household Inventory, purchase food and medications, prepare activities meals Scheduler Arrange medical Schedule tests, procedures, and services care Driver Facilitate Provide transportation to medical appointments and transportation emergency hospital visits Patient Facilitate provider Attend appointments; clarify and expand on patient extender understanding history, symptoms, concerns; introduce topics to provider Technical Facilitate patient Clarify providersâ explanations, technical terms, record interpreter understanding and remember discussions with providers Decision Make medical Select among treatment alternatives; decide among maker decisions settings of care Coordinator Coordinate care Ensure flow of information among providers across providers and settings Financial Handle financial Resolve issues relating to insurance claims, secondary manager issues coverage, co-pays, and benefit limits Health Deliver medical Administer medications, operate equipment provider care Attendant Provide task Hands-on personal care task assistance assistance Monitor Assess health Ensure that changes in health status are noted and status properly addressed SOURCE: Wolff, 2007. cent) also fulfill medically oriented tasks such as helping with wound care, injections, equipment, or medication administration (Wolff and Kasper, 2006). A study following stroke and traumatic brain injury patients and their caregivers from hospital discharge found that during the home health period, families provided three-fourths of total patient care hours (Levine et al., 2006).
PATIENTS AND INFORMAL CAREGIVERS 253 Other Support Roles Informal caregivers frequently coordinate and arrange medical appoint- ments for older adults. In fact, the time that they spend performing this function has given rise to a new line of elder care referral services, which employers have begun to offer as a way to save lost work time among em- ployees. Caregivers frequently accompany older patients to office visits, and they are often involved in treatment decisions (Deimling et al., 1990; Kapp, 1991), particularly those involving patients who are older and who carry a greater disease burden (Ende et al., 1989; Ishikawa et al., 2005). In the case of critically ill and hospitalized patients, families and friends are often kept apprised of the patientâs health status, they advocate for needed services and attention, and they provide patients with emotional support (Hickey, 1990). Family may also assume a role in coordinating patient transitions across settings of careâfor example, from hospital to home (Coleman, 2003; DesRoches et al., 2002). In addition, as providers of assistance to frail older adults with physical and cognitive disabilities, informal caregiv- ers often help to ensure the safety of the home environment. When older adults do not speak English, health care providers often ask family members or friends to interpret. In fact, it is estimated that 79 percent of hospitals frequently rely on family and friends to serve as inter- preters (Wilson-Stronks and Galvez, 2007). This practice risks misinter- pretation and the transmission of inaccurate information, especially when the translators are young children. As a result, recent state laws prevent using the family for this purpose and several organizations have developed reports and guidelines about how to implement language services in health care organizations. Still, the knowledge that family members have about the patient and their ability to articulate this knowledge allow them to advocate on the patientâs behalf and to enhance the providerâs understanding of the older adultâs social environment, health conditions, and care preferences. Simi- larly, family membersâ understanding of the providersâ treatment recom- mendations and their ongoing interactions with the patient at home and in the community can influence the patientâs behaviors, treatment adherence, and health. Impact on Outcomes There is strong evidence that informal caregivers have a profound ef- fect on long-term care processes and outcomes. Engaging families in patient care has been shown to improve outcomes in dementia (Mittelman et al., 2006; Vickrey et al., 2006) and in schizophrenia care (Glynn et al., 2006) and also to postpone institutionalization (Miller and Weissert, 2000; Yoo et
254 RETOOLING FOR AN AGING AMERICA al., 2004). Yet while there is growing recognition of the relevance of fam- ily involvement to health care delivery processes (Fisher and Weihs, 2000), there is still little knowledge about which particular attributes of family involvement are efficacious in improving health outcomes. Older adults strongly prefer independent living (Kasper et al., 2000) and are highly averse to nursing-home placement (Mattimore et al., 1997). Caregiver support may allow older people to remain in their communities in cases where it would not otherwise be possible otherwise and the impor- tance of informal caregivers in reducing the risk of nursing home entry is well documented (Miller and Weissert, 2000). In addition, the availability of family has been linked to shorter lengths of hospital stays (McClaran et al., 1996; Picone et al., 2003). The converse is also true, that is, that an absence of adequate caregiving is associated with problematic hospital discharges (Procter et al., 2001) and readmissions (Lotus Shyu et al., 2004; Schwarz and Elman, 2003). Living alone is associated with greater risk of nursing home entry, while, conversely, greater familial and caregiver support is associated with a lower likelihood (Miller and Weissert, 2000; Muramatsu et al., 2007). Individuals with few social supports are more likely to have unmet needs in personal care and household tasks (Kennedy, 2001; Lima and Allen, 2001) and are also more likely to miss medical appointments and to fail to fill prescriptions (Allen and Mor, 1997). One study found that unmarried individuals present to the hospital with a greater severity of illness than do their married peers, suggesting that the presence of a spouse leads to admis- sion at an earlier stage of illness (Gordon and Rosenthal, 1995). The availability and preparedness of informal caregivers can also influ- ence where patients receive their post-acute care following hospitalization and also the course of their recovery (Kane et al., 2000; Weinberg et al., 2007). A meta-analysis of 122 studies found that patients who received instrumental assistance were 3.6 times more likely to adhere to medical instructions and prescriptions. This was twice as effective as emotional sup- port, which was associated with 1.8 times greater likelihood of adherence (DiMatteo, 2004). The effect of family support varies, however; individuals with close and cohesive families are three times more likely to adhere to instructions than those from conflicted families. Training Along with the increasing awareness of the role that family and friends play in the provision of ongoing chronic care, there has been a growing understanding of the potential benefits of educating these informal care- givers and integrating them more fully into the health care delivery team. While it is clear that caregivers are able to provide a tremendous amount
PATIENTS AND INFORMAL CAREGIVERS 255 of support to older adults, the extent to which they are prepared for the role they assume remains unknown. For example, according to one national survey, nearly one in five informal caregivers who assisted with medication management had received no instruction from a health care professional regarding how to perform this task; for those who assisted with changing dressings or bandages, one in three had received no training (Donelan et al., 2002). As home-based medical technologies have become widely diffused, they have expanded the range of services that may be provided to technology- dependent patients in the community, including at-home parenteral nutri- tion (i.e., intravenous feeding), intravenous medication infusion, peritoneal dialysis, mechanical ventilation, and apnea monitoring. Yet there has been little attention directed toward identifying, developing, and disseminating the education and training needed to provide patients and caregivers with the skills and knowledge they need to operate sophisticated equipment and to manage complex treatment regimens (Given et al., 2001; Thielemann, 2000). Not surprisingly, studies find that informal caregivers perceive them- selves as insufficiently prepared to assist with complex home-based tech- nologies (Silver et al., 2004; Winkler et al., 2006) and medically-oriented treatments in the post-acute period (DesRoches et al., 2002; Mackenzie et al., 2007). This is also true of more basic tasks, such as lifting, turning, feeding, and helping those with Alzheimerâs disease. To improve the care that older patients receive in private settings and to support informal caregivers who are often ill-equipped to perform the necessary medical tasks, the committee recommends that more training op- portunities be made available. Recommendation 6-2:â Public, private, and community organizations should provide funding and ensure that adequate training opportunities are available in the community for informal caregivers. These initiatives may be modeled after those provided by the AOA, which has established a program to assist caregivers in making decisions and solving problems related to their roles. Other potential models include programs developed by the Centers for Medicare and Medicaid Services (CMS), the Health Resources and Services Administration (HRSA), and Geriatric Education Centers. The committee suggests that state attorneys general recognize these types of caregiver training initiatives as an option by which non-profit hospitals can satisfy their requirements for providing benefits to their local communities in exchange for tax-exempt status. A number of reviews and meta-analyses have synthesized findings from training initiatives aimed at caregivers for patients with various diseases, including stroke (Lee et al., 2007), cancer (Harding and Higginson, 2003),
256 RETOOLING FOR AN AGING AMERICA and dementia (Pinquart and Sorensen, 2006). Sorensen and colleagues iden- tified a number of different approaches to supporting caregivers, including education about ways to reduce stress, supportive interventions, psycho- therapy, patient day care, and training of the care recipient (Sorensen et al., 2002). Findings indicate that such interventions have a positive, albeit small effect for several outcomes, most notably caregiver depression, strain, and burden (Sorensen et al., 2002). There is a growing consensus that the most successful interventions are comprehensive and individually tailored, actively engage both caregivers and recipients, and provide a combination of education, skills, and coping techniques (Brodaty et al., 2003; Gallagher- Thompson and Coon, 2007). An intervention in the United Kingdom that trained the informal care- givers of hospitalized stroke patients in basic nursing and personal-care tasks achieved decreases in caregiversâ reported burden, anxiety, and de- pression (Kalra et al., 2004). And while patientsâ mortality, institutional placement, and disability outcomes remained comparable, annual health care costs for the intervention group were lower by more than Â£4000 (roughly $8,000), largely due to shorter hospital lengths of stay (Patel et al., 2004). A multi-component counseling and support group intervention for spouses of dementia patients was found to reduce caregiversâ depressive symptoms (Mittelman et al., 2004) and to delay recipientsâ nursing-home entry by more than 1 year (Mittelman et al., 2006). Lastly, the Resources for Enhancing Alzheimerâs Caregiver Health (REACH) study was an ambitious program that enrolled a diverse group of 1,222 dementia caregivers at six intervention sites (Schulz et al., 2003a). Nine active interventions were tested, and a coordinating center developed standard eligibility protocols and measurement procedures. After 6 months, the study found small but statistically significant improvements for mea- sures of caregiver burden and, in one site, caregiver depression (Gitlin et al., 2003). An extension of the study found statistically significant and clinically important improvements in measures of caregiversâ quality of life (including depression) but not in institutionalization (Belle et al., 2006). Integration with Medical Team A more explicit recognition of informal caregivers as providers and partners in health care processes could benefit both patients and caregivers in the management of the health needs of older adults in the community. One aspect of patient-centered care described by the IOM report Crossing the Quality Chasm is that providers should âfocus on accommodating fam- ily and friends on whom patients may rely, involving them as appropriate in decision making, supporting them as caregivers, making them welcome and comfortable in the care-delivery setting, and recognizing their needs
PATIENTS AND INFORMAL CAREGIVERS 257 and contributionsâ (IOM, 2001). Exactly when and how providers need to incorporate the family into health care processes is not yet well understood, but such incorporation is relevant across the full spectrum of institutional, ambulatory, and residential patient-care settings. Despite the potential benefits to older patients of enhancing commu- nication among their many care providers (formal and informal), such co- ordination has yet to receive adequate attention. Family members describe a âvortexâ of uncertainty and frustration resulting from the medical com- munityâs poor communication and unease with their presence (Kirchhoff et al., 2002; Teno et al., 2004). The Health Insurance Portability and Ac- countability Act (HIPAA) has further exacerbated this situation by limiting familiesâ access to information. In assuming specific tasks and responsibilities, informal caregivers be- come part of the health care delivery team and contribute directly to health outcomes, although this is not always recognized in the health care com- munity. For example, caregivers play a role in promoting patient adherence to medications, ensuring medication safety, and reducing the likelihood of adverse drug events. One large cohort study of Medicare beneficiaries who were treated within a multi-specialty group practice found some 20 percent of serious adverse drug events in the ambulatory setting to be potentially avoidable; they were caused by such mistakes as taking the wrong dose, continuance of medication despite instructions by the physician to dis- continue drug therapy, and continuance despite recognition of an adverse effect or drug interaction (Gurwitz et al., 2003). The authors noted that in the ambulatory setting, unlike the situation with institutional care, it is the patientâand often the patientâs family membersâwho are responsible for adherence to medical instructions. Despite this, there have been few patient safety innovations that have explicitly included the family as an ally in monitoring changes in treat- ment regimens or symptoms. Electronic personal health records could give informal caregivers improved access to patient information and provide a convenient method for them to communicate with the patientâs health care team online (Seavey, 2005). These electronic records could also provide decision support for common problems and help older adults in managing their conditions at home. The Veterans Administrationâs HealtheVet record system provides an example of this type of electronic support. The system provides veterans with access to the data in their health record, advice on steps they can take improve their health condition, and a means to self- enter structured medical information (MyhealtheVet, 2008). Establishing better linkages between the medical care team and informal caregivers is â Health Insurance Portability and Accountability Act of 1996. Public Law 191. 104th Congress. August 21, 1996.
258 RETOOLING FOR AN AGING AMERICA potentially beneficial for both older adults and caregivers. The Rosalynn Carter Institute for Caregiving has sought to do this by bringing paid and informal caregivers together to learn about caregiving issues, share ways to work together more effectively, and gain a greater understanding of each otherâs perspectives. Informal caregivers place high value on both the emo- tional support that is provided through friendships with home-care workers and also these workersâ affirmation of their caregiver efforts (Piercy and Dunkley, 2004). Medicare reimbursement changes have been proposed that would create a more integrated system in which direct-care workers would be paid to assess the caregiving needs of families, observe their caregiving skills, and teach them to perform various, duties such as ambulation and comfort care (Seavey, 2005). Additional Supports Taking on the role of informal caregiver has been found to increase the risk of elevated stress hormones (Kiecolt-Glaser et al., 2003; Vitaliano et al., 2003), make physical illness and psychological distress more likely (Emanuel et al., 2000; Pinquart and Sorensen, 2003), and raise mortality rates (Christakis and Allison, 2006). Caregivers may have to provide con- stant care day and night, may be unable to leave the recipient alone, and may even have to provide assistance despite their own physical illness or impairments; such requirements can affect the caregiver in various ways, in- cluding causing interrupted sleep, physical strain, and emotional and finan- cial difficulties (Wolff et al., 2007). Longitudinal studies of spouses find that both the assumption of the role of informal caregiver and the continuing long-term provision of high-intensity care are associated with downward trajectories in terms of depression (Burton et al., 2003; Cannuscio et al., 2002), social participation, and quality of the marital relationship (Seltzer and Li, 2000). In spite of this, many informal caregivers are able to adapt and derive personal benefits from their role (Kramer, 1997; Stuckey et al., 1996). Given the demonstrated importance of informal caregivers to older adults and to society, and given the personal costs that may accompany the role, there has been considerable interest in how it might be possible to improve informal caregiversâ experiences and outcomes. A large num- ber of caregiver interventions have been developed, with a large range of strategies, services, and target populations. Programs have been established to provide caregivers with greater education and training, strengthened partnerships with the medical community, and a number of other types of aid including respite care, web-based monitoring systems, technologies that reduce physical strain, and financial supports. Several health services interventions targeted specifically at older caregivers have proven to benefit
PATIENTS AND INFORMAL CAREGIVERS 259 both their health (Silliman et al., 1990) and their well-being (Hughes et al., 2000; Weuve et al., 2000). In recent years there has been a significant amount of legislation at the state and federal levels aimed at providing various types of aid to family caregivers. According to one accounting, between 2004 and 2006 over 100 bills to assist informal caregivers were introduced in 32 states and at the federal level, typically focusing on increased tax incentives, family and medical leave provisions, and respite care supports. Of those, 21 were passedâ16 bills in 13 states and 5 in the U.S. Congress (FCA, 2007). The National Family Caregiver Support Program (NFCSP), initiated under the Older Americans Act Amendments of 2000, is the firstâand so far onlyâfederally funded program intended specifically to assist informal caregivers of older adults. The program funds state initiatives for such things as information dissemination, organization of support groups, and the provision of individual counseling, training, respite care, and other supplemental services. The NFCSP is implemented at the state level in part- nership with area agencies on aging and local-area service providers. States have considerable discretion in the design and delivery of the program, and eligibility, service offerings, methods of compensation, and approaches to accessing services vary widely across states, and in some cases, within states (Feinberg and Newman, 2004, 2006). The program expanded the range of service offerings to family caregivers, but its modest funding ($162 million in 2007) has resulted in geographic disparities and gaps in service avail- ability (AOA, 2007). The Lifespan Respite Care Bill was passed by both branches of the Congress and signed into law by President Bush in December 2006, but it has not yet received federal appropriations. The objective of the program is to allow states to develop a network of respite care providers that will provide family caregivers with high-quality planned and emergency respite services. There have been discussions of an appropriation of $10 million for fiscal year 2008, which would be substantially more limited in scale and scope than the $289 million authorized over 5 years. Under Medicaid, the movement toward patient-directed careâin which decision-making responsibility shifts from health professionals to patientsâ is a trend that has implications for informal caregivers. State Cash and Counseling programs (see Chapter 3) give Medicaid recipients a monthly allowance to hire the providers of their choice and provide counseling and financial assistance to help them in planning and managing these respon- sibilities. Many of these state programs permit Medicaid recipients to hire â Lifespan Respite Care Act of 2006. Public Law 442. 109th Congress. December 21, 2006.
260 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 recipientsâ 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.
PATIENTS AND INFORMAL CAREGIVERS 261 To the extent that an older adult is dependent on an informal caregiverâ for example, in transitioning from hospital to homeâclinicians need to explicitly assess the caregiverâs 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 recipientâs 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 toâand, in many ways, reliant uponâinformal 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-
262 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 patientsâ 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 countriesâ 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
PATIENTS AND INFORMAL CAREGIVERS 263 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 invaluable: A new look at the economic value of family caregiving. 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 caregiver support program. http://www.aoa.gov/prof/aoaprog/caregiver/careprof/progguidance/research/NFCSP_ BROCHURE.pdf (accessed October 10, 2007). Arno, P. S. 2006. Economic value of informal caregiving: 2004. 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 caregiving: Compassion in action. Washing- ton, DC: Department of Health and Human Services (HHS) and AOA.
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