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Families Caring for an Aging America (2016)

Chapter: 1 Introduction

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Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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1

Introduction

ABSTRACT: This introductory chapter describes the background for the study, the scope of the inquiry, and the committee’s methods and vision for the future. It also reviews current federal programs that provide direct support to family caregivers. The committee’s charge was to develop recommendations to support the nation’s family caregivers so that they can effectively advocate and care for older adults without harm to themselves. The report examines what is known about the characteristics of caregivers and the older adults they care for, the evolving role of caregivers and the impact of caregiving on their health and well-being, the economic impact of caregiving especially on those caregivers who are employed, the evidence on the effectiveness of existing caregiver programs and interventions, and the challenges that caregivers face in health care and long-term care systems.

Millions of Americans are providing care and support to an older parent, spouse, friend, or neighbor who needs help because of a limitation in their physical, mental, or cognitive functioning. For decades, demographers, gerontologists, health researchers and providers, economists, and other experts have raised concerns about the rapid aging of our population and its implications for the health care system, Social Security, and local, state, and federal resources (Brody, 1966; IOM, 1991, 2008, 2012; MedPAC, 2015; NRC, 1988, 1994, 2003, 2012). Billions of public dollars are being invested in much needed research and development to find ways to improve

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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the value and quality of the U.S. health care system (CMS, 2016a,b). Far less attention has been given to family caregivers who provide the lion’s share of long-term services and supports (LTSS)1 to our older adult population. Many are unaware that, today, family caregivers are also expected to provide complex health care services once only delivered by licensed health care personnel in a hospital or other institutional setting.

In 2014, 13 private foundations, the U.S. Department of Veterans Affairs (VA), and an anonymous donor came together to ask the National Academies of Sciences, Engineering, and Medicine to develop a report with recommendations for family caregiving of older adults (see Box 1-1). The committee’s charge is presented in Box 1-2. This study has three principal objectives: (1) to assess the prevalence and nature of family caregiving of older adults as well as the impact of caregiving on caregivers’ health, employment, and overall well-being; (2) to examine available evidence on the effectiveness of programs, supports, and other services designed

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1 Long-term services and supports (LTSS), sometimes referred to as long-term care, include the array of paid and unpaid personal care, health care, and social services generally provided over a sustained period of time. Services can include personal care (such as bathing or dressing), help with medication management, paying bills, transportation, meal preparation, and health maintenance tasks. Services can be provided in a variety of settings such as nursing homes, residential care facilities, and individual homes.

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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to support family caregivers; and (3) to assess and recommend policies to address the needs of family caregivers and to minimize the barriers that they encounter in trying to meet the needs of older adults.

The Committee on Family Caregiving for Older Adults was appointed in October 2014 to conduct the study and prepare this report. The committee included 21 individuals with research or clinical experience related to family caregiving of older adults in home- and community-based settings; physicians’ offices; clinics; hospitals; VA facilities; and senior residential, assisted living, and skilled nursing facilities.2 The committee members had specific expertise in gerontology, geriatric psychiatry, social work, home- and community-based services, psychology, anthropology, diversity and health disparity issues, nursing and medicine, health services research, health policy, economics and finance, employee benefits and workplace

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2 Due to personal circumstances, three members of the committee withdrew from the study before its completion.

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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programs, elder law, and the design and effectiveness of interventions to improve outcomes for caregivers and older adults. The committee also included a retired physician and health policy expert in his 80s. Brief biographies of committee members and the study staff are provided in Appendix B.

CONTEXT FOR THIS REPORT

The committee’s charge raises questions about the boundaries among the responsibilities of individuals, families, and government. By its very nature, family caregiving of older adults is both a personal and private issue as well as a public and societal concern. From the individual perspective, one’s involvement in caregiving for his or her elders is, in part, a matter of personal, spousal, or filial responsibility. Yet, for generations, the American public has also assumed collective responsibility in helping to protect the well-being of the nation’s older adults through government programs such as Social Security, Medicare, Medicaid, the Area Agencies on Aging (AAAs), and others. The committee recognizes that the role of the individual versus that of society overall is often a matter of public debate.

Who Is a Family Caregiver?

The committee agreed that the term “family caregiver” should be used to reflect the diverse nature of older adults’ family and helping relationships. Some family caregivers do not have a family kinship or legally defined relationship with the care recipient, but are instead partners, neighbors, or friends. Many older adults receive care from more than one family caregiver, and some caregivers may help more than one older adult.

The circumstances of individual caregivers and the caregiver context are extremely variable. Family caregivers may live with, nearby, or far away from the person receiving care. Regardless, the family caregiver’s involvement is determined primarily by a personal relationship rather than by financial remuneration. The care they provide may be episodic, daily, occasional, or of short or long duration. The caregiver may help with simple household tasks; self-care activities such as getting in and out of bed, bathing, dressing, eating, or toileting; or provide complex medical care tasks, such as managing medications and giving injections. The older adult may have dementia and, thus, require a caregiver’s constant supervision. Or, the caregiver may be responsible for all of these activities.

In developing policy regarding family caregiving of older adults, it is important to recognize that not all older adults need a family caregiver and not all family caregivers need support or services. As Chapter 2 will describe, the committee focused on the overall population of caregivers of

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

older adults who receive help because of a physical, mental, cognitive, and/or functional limitation. The committee also focused on the “high-need” subgroup of caregivers who help an older adult who either has dementia or who needs help with at least two self-care activities (i.e., bathing, dressing, eating, toileting, or getting in and out of bed) or both.

This report uses the terms “family caregiver” and “caregiver” interchangeably to refer to these two groups. It does not use the terms “informal” or “unpaid” although they are often used in the economics and medical literature to differentiate family caregivers from “formal” caregivers—paid direct care workers (such as home care aides) or health and social service professionals. “Informal” does not capture the complexity of what family caregivers do or their connection to the older adults they are helping.

The term “care recipient” is used to refer to the older adults for whom they care. The committee focused on older adults, defined as the 65 and older age group, because of the sponsors’ specific interests, the dramatic aging of the older U.S. population, and the available data that often draw from datasets describing older Medicare beneficiaries.

Providing care to an older family member is a normative developmental experience that presents universal challenges and opportunities. Some caregiving demands and responses to these demands in late life cut across all families regardless of socioeconomic class, gender, race, ethnicity, national origin, language, sexual orientation, gender identity, rural versus urban residence, etc. For example, normative stressors experienced by older adults such as increased physical dependence and bereavement signal a need for physical and emotional support among all older adults. Diversity may influence the breadth and nature of exposure to stress events and demands, responses to stressors, access to resources and supports, and values and beliefs about help-seeking. Throughout the report, the committee addresses issues of diversity in the caregiving context, and where scientific evidence is specifically available, results are discussed.

Many Faces of Caregiving

The nation’s population is becoming one in which no racial or ethnic group is a majority.

This report takes a broad view of diversity that goes beyond multicultural caregiving to include socioeconomic status, rural residence, sexual orientation, gender, and other factors that are relevant to caregiving policies, services, and programs. Among lesbian, gay, bisexual, and transgender (LGBT) and ethnic minority caregivers, for example, caregiving tasks and decision making are more likely to be shared by multiple family members or with members of the extended family or non-kin (Apesoa-Varano et al., 2015). Services and programs will be more effective in engaging and sup-

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

porting family caregivers if they incorporate a family’s values, taking care to avoid terms that are likely to be misunderstood or convey stigma. Words matter. Commonly used terms such as “caregiver,” “caregiver burden,” or “dementia” do not readily translate into other languages and may have negative connotations. For example, among Latinos, the term “caregiver burden” may be misinterpreted as suggesting that caring for one’s loved one is an inconvenience rather than a filial, marital, or intimate partner obligation. In fact, the term actually denotes freight or cargo associated with transporting goods. Regardless of language or cultural background, many family caregivers in the United States do not relate to the term “caregiver” or describe the help they provide as “caregiving”; instead, they view their interactions as part of their familial roles and expectations justified by longstanding spousal or kin relations.

Background on Federal Involvement in Family Caregiving

Historically, the Medicare and Medicaid programs—like other third-party payers—have focused on beneficiaries with only limited, if any, attention to their caregivers. Thus, their impact on family caregivers is indirect (Doty and Spillman, 2015). Regardless, the benefits of Medicare and Medicaid for caregivers are significant when they enable older adults to obtain needed health care and LTSS.

For the most part, Medicare and Medicaid do not fund caregiver services and supports. Medicaid-funded, home- and community-based services (HCBS) are an important exception. Under 1915(i) Medicaid waivers, states have the option to cover respite care, and caregiver education and training. State Medicaid programs may also offer self-directed service programs (e.g., Cash and Counseling) that allow eligible older adults to use their Medicaid home care benefits to pay a family caregiver for LTSS under certain circumstances. Use of the programs has been limited however.

The Centers for Medicare & Medicaid Services (CMS) is beginning to address other areas that may help support caregivers. The agency, for example, is piloting new models of care delivery designed to integrate health care and LTSS for high-need, low-income older adults. However, best practices for involving family caregivers and their specific needs have yet to be defined (CMS, 2016c; Grabowski et al., 2015). CMS is also testing potential performance-based incentives using quality measures to improve quality and value (CMS, 2016c). The agency has issued a draft plan for developing clinician quality measures that will, for the first time, include a focus on family caregivers (CMS, 2015; NQF, 2016). Presumably, this will lead to inclusion of family caregivers in older adults’ home care plans as well. However, the role of family caregivers of older adults has not yet received substantive attention in these initiatives.

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

Federal Programs That Provide Direct Support to Family Caregivers of Older Adults

While CMS has focused on the beneficiary, direct services for caregivers have been developed by other U.S. Department of Health and Human Services (HHS) agencies including the Administration for Community Living (ACL) and the Health Resources and Services Administration (HRSA), as well as the VA and the U.S. Department of Labor (DOL). Federal programs that focus directly on caregivers of older adults are described below and in Tables 1-1 and 1-2.

Administration for Community Living

National Family Caregiver Support Program (NFCSP) In 2000, Congress explicitly recognized the importance of family caregivers by creating NFCSP under the Older Americans Act—the first and only federal program to specifically address the needs of family caregivers of older individuals and also grandparents (and other relatives) raising grandchildren. With its establishment 16 years ago, family caregivers are now recognized as consumers of information and supportive services in their own right (Feinberg and Newman, 2006). Before NFCSP, only seven states had funded programs with the family caregiver as the explicit client and recipient of services (Feinberg, 2004). With its creation, programs could be created in every state, and existing programs could be expanded.

NFCSP is run by the Administration on Aging, a unit of ACL, an agency of HHS3 and the primary federal agency charged with supporting family caregivers. NFCSP requires State Units on Aging (SUAs) to work in partnership with AAAs and local service providers to provide five required services (see Box 1-3): information; assistance in gaining access to services; individual counseling, education, and support groups; respite; and supplemental services, on a limited basis. Most of the other ACL caregiver support programs, described in Table 1-1, are administered at the state level. States often expand the programs by broadening eligibility criteria or raising the caps on benefits (e.g., for respite care services), and, in many states, caregiving task forces, coalitions, and other organizations supplement the federal programs (Ramchand et al., 2014).4 These organizations

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3 In 2012, the Secretary of the U.S. Department of Health and Human Services (HHS) merged its agencies—the Administration on Aging, the Administration on Intellectual and Developmental Disabilities, and the HHS Office on Disability—under the umbrella of a new Administration for Community Living (http://www.acl.gov).

4 For details on state caregiving programs, see The State of the States in Family Caregiving: A 50-State Study at: https://www.caregiver.org/caregiving-across-states-50-state-profiles-2014 (accessed August 22, 2016).

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

TABLE 1-1 Administration for Community Living Programs That Support Caregivers of Older Adults

Program Description Funding (FY 2015) Older Adult Target Population Use by Caregivers of Older Adults
National Family Caregiver Support Program (NFCSP)
  • Requires state units on aging to partner with the AAAs and local providers to provide five services: information; assistance in gaining access to services; individual counseling, education, caregiver (CG) training, and support groups; respite services; and some supplemental services
$145.5 million
  • CGs of older adults (age 60+);
  • CGs of individuals of any age with ADRD
  • >1.3 million CG units (i.e., counseling, respite, information, access assistance)
  • 115,585 CGs received counseling, training, or support groups
  • >64,000 CGs received respite
National Eldercare Locator
  • Assists CGs in identifying community resources
$2 million
  • Older adults and their CGs
  • 754,430 individuals
National Alzheimer’s Call Center
  • Provides information, referrals, and counseling via a grantee (currently Alzheimer’s Association)
$0.9 million
  • People with ADRD; their CGs and family members
  • 319,216 calls
Aging and Disability Resource Centers
  • Grants to states to provide information to CGs and improve access to LTSS
$6.1 million
  • CGs of older adults and persons with disabilities
  • 86,871 CGs age 60+
Native American Caregiver Support Initiative
  • Grants to tribal organization to provide CGs with respite, training, information and outreach, counseling, and support groups
$6 million
  • American Indian, Alaskan Native, and Native Hawaiian CGs of older adults with a chronic disability or illness
  • 92,259 CGs
Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×
Alzheimer’s Disease Supportive Services Program
  • Grants to states for home- and community-based service systems for persons with dementia and their CGs, including information, counseling and assistance, screening, service coordination, and referral and access to evidence-based LTSS
$4.8 million
  • CGs of individuals with ADRD
  • 14,656 CGs
Alzheimer’s Disease Initiative Specialized Support Services
  • Grants to states, tribal entities, and localities to improve LTSS and CG training and consultations on behavioral symptom management
$10.5 million
  • CGs of individuals with ADRD or I/DD
  • Not available (new program)
Lifespan Respite Care Program
  • Grants to states to provide respite care
$2.3 million
  • All CGs

NOTES: NFCSP also serves caregivers (age 55+) of children and younger adults with disabilities. Unless noted otherwise, data are for the most recent 12-month period available. AAA = Area Agency on Aging; ADRD = Alzheimer’s disease and related dementias; I/DD = intellectual/developmental disabilities; LTSS = long-term services and supports.

SOURCES: ACL, 2016a,b; Alzheimer’s Association, 2015; Barretto et al., 2014; Colello, 2007; Doty and Spillman, 2015; Draper, 2010; Gould et al., 2014; Napili and Colello, 2013; National Association of Area Agencies on Aging, 2014.

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

TABLE 1-2 U.S. Department of Veterans Affairs Programs and Services for Caregivers

Program Description Target Population Utilization
U.S. Department of Veterans Affairs (VA) Caregiver Support Program
  • Provides training and education, support, and coordination for caregivers (CGs)
  • Total FY 2015 budget of $478 million for all caregiving programs including, but not limited to, those below
  • CGs of veterans
See below
  • Caregiver education and training
  • Building better caregivers
  • 4,742 CGs received training (27 percent were CGs of older veterans) (2012 to 2015)
  • 8,505 CGs completed the course (15 percent were CGs of older veterans)
  • Self-management/self-care courses (solving problems, managing stress, identifying resources)
  • Caregiver Support Line
  • Toll-free phone line staffed by licensed social workers
  • Provides information, referral, and support
  • Designed to serve as a single entry point for veterans’ CGs’ access to resources and referrals
  • CGs of veterans
  • 57,118 calls; more than 228,000 calls (2011 to 2015)
  • 7,859 referrals to Caregiver Support Coordinators
  • More than 3,200 telephone education group participants
Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×
  • Facilitates national monthly telephone education calls
  • CGs of veterans
  • Caregiver Support Coordinators (CSCs)
  • Designated social workers, nurses, and psychologists who provide support, referral to local resources, and care coordination
  • Coordinators act as intermediaries between CGs and VA staff
  • Every VAMC is required to have one full-time CSC
  • CGs of veterans at VA medical centers (VAMCs)
  • Not available
  • Peer Support for Caregivers
  • Trained volunteer peer mentors are assigned to CGs to provide guidance to resources and decrease feelings of isolation
  • CGs of veterans
  • More than 300 CGs trained (2012 to 2015)
  • Resources for Enhancing Alzheimer’s Caregiver Health (REACH)
  • Skills-building intervention designed to provide support, education, and skills building to individual CGs
  • CGs of veterans with Alzheimer’s disease or related dementias, spinal cord injury or disorder, PTSD, ALS, MS
  • 1,208 VA clinical staff (social workers, counselors, psychologists, and nurses) received REACH training (2011 to 2015)
Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×
Program Description Target Population Utilization
  • CGs receive 4+ one-on-one sessions focusing on problem solving, stress and coping techniques, and strategies for managing everyday problems
  • Telephone support groups for caregivers
  • Skills-building intervention designed to provide support, education, and training for CGs via telephone-based support groups
  • Topics include techniques for problem solving, behavioral management, stress reduction, and coping
  • CGs of veterans with Alzheimer’s disease or related dementias, spinal cord injury or disorder, PTSD, ALS, and MS
  • 150 VA clinical staff (social workers, counselors, psychologists, nurses) received training (2012 to 2015)
VA Geriatrics and Extended Care
  • Adult Day Health Care (ADHC)
  • Day programs for social interaction, support, and recreation; may be provided by the VA or a community provider closer to veteran’s residence
  • Older veterans who need assistance with activities of daily living, isolated, or whose CGs need respite
  • VA provided and/or purchased ADHC for 16,604 unique veterans
  • Homemaker and Home Health Aide Program
  • Provides homemaker or home health aides to come to the home
  • Veterans who need skilled services, case management, and help with self-care
  • 101,843 veterans
Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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  • Respite Care
  • Respite services provided at veterans’ homes, nursing homes, or adult day care programs
  • 30-day maximum per year
  • Veterans with functional impairments
  • 20 percent of CGs of older veterans (65+) report using VA respite services in the previous year
  • Home Hospice Care
  • Hospice services, including grief counseling for CGs
  • Older veterans who have a terminal condition
  • 8,278 veterans received hospice services paid for by the VA, but provided by community providers

NOTES: Services may be provided in a VA facility or under contract by a community provider. Hospice services are limited to veterans who have less than 6 months to live and are not seeking curative treatment. Unless noted otherwise, utilization data are for the most recent 12-month period available (fiscal year). ALS = amyotrophic lateral sclerosis; I/DD = intellectual/developmental disabilities; MS = multiple sclerosis; PTSD = post-traumatic stress disorder.

SOURCES: Dupke et al., 2016; VA, 2015a,b, 2016a,b,c; Wright et al., 2015.

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

may work with state agencies through contracts or grants to implement the state caregiving programs.

Caregivers are eligible for NFCSP services if they are caring for someone age 60 or older. Caregivers age 60 and older are eligible regardless of the care recipients’ age. The annual appropriation for the program has remained at around $150 million despite the marked growth in the older adult population (Doty and Spillman, 2015). Funds are allotted to the states based on the number of state residents age 70 and older, and states are required to match at least 25 percent of the federal contribution. Most states and territories use an intrastate funding formula to disseminate funds to local AAAs (Link, 2015/2016).

In fiscal year 2015, with a total budget of $145.6 million, NFCSP served more than 900,000 individual caregivers of older adults.5 Of these, 115,585 received counseling or training, and more than 64,000 caregivers received respite care; the remainder was provided information about available services and supports or assistance with accessing services (see Table 1-1). The extent of public awareness of the availability of these

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5 Personal communication, G. Link, Aging Services Program Specialist, Administration for Community Living (e-mail March 3, 2016).

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

services is not known. The number of family caregivers who might benefit from NFCSP services is likely to far exceed the current capacity of the program.

ACL is currently conducting the first national evaluation of NFCSP’s implementation at the state and local levels; its impact on family caregivers and care recipients; and its integration with and impact on long-term-care policies and home- and community-based service systems (Barretto et al., 2014; Link, 2015/2016).6 The implementation evaluation found that NFCSP is the only specific source of caregiver support provided by AAAs in three-quarters of the service areas (Lewin Group and ACL, 2016). In addition, it substantially increased the number of caregivers served in the 15 states that had created caregiver programs before the advent of NFCSP. The ACL evaluation of caregiver outcomes is underway and is expected to be completed in 2017.

Other ACL Programs That Support Caregivers of Older Adults

As Table 1-1 indicates, ACL also administers seven smaller state-based caregiver programs with budgets ranging from just below $1 million, for the National Alzheimer’s Call Center, to more than $10 million for the recently created Alzheimer’s Disease Initiative Specialized Support Services for caregivers of individuals with Alzheimer’s disease and related disorders or intellectual and developmental disorders.

Established in 2006, the Lifespan Respite Program supports efforts at the state and local levels to help family caregivers by improving the quality of and access to respite, the temporary relief of caregiving duties. As of 2015, the program has provided agencies in 33 states and the District of Columbia with grants of up to $200,000 to initiate or improve access to respite services and training of respite care providers. Although the program is relatively small, respite is one of the most important caregiver supports (see Chapter 5 for more details).

In 2016, ACL announced a research collaborative, the Family Support Research and Training Center (FSRTC), to synthesize and generate knowledge about the needs of families caring for children and adults with disabilities (FSRTC, 2016). Although FSRTC does not serve family caregivers directly, the initiative is noteworthy because of its emphasis on engaging family caregivers in the research process. Current plans are for families to be involved in developing the center’s research priorities. The research center is based at the University of Illinois, Chicago. Participating organizations include the National Council on Aging, The Lurie Institute for

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6 The evaluation was delayed for years because of budget constraints (Doty and Spillman, 2015).

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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Disability Policy at Brandeis University, The National Resource Center for Participant-Directed Services at Boston College, and the Research Training Center (RTC) on Community Living at the University of Minnesota.

U.S. Department of Veterans Affairs (VA)

Caregiver Support Program The VA provides a wide range of services to caregivers of veterans, both young and old (see Table 1-2). The mission of the Caregiver Support Program is to promote the health and well-being of veterans’ caregivers through education, resources, support, and services (Kabat, 2015). The total budget for the VA Caregiver Support Program was $478 million in FY 2015. The share of the funding that reached caregivers of older veterans is not known, but is likely to be substantial. Several VA caregiver programs specifically target caregivers of older veterans with Alzheimer’s disease or related dementias, spinal cord injury or disease, post-traumatic stress disorder (PTSD), amyotrophic lateral sclerosis (ALS), and multiple sclerosis (MS).

Geriatrics and extended care The VA has provided home-based primary care and other targeted services for older veterans for decades (O’Shaughnessy, 2013). These services include clinical services as well as an array of important caregiver supports, including adult day health care, homemaker/home health aide services, respite care, and hospice care (see Table 1-2). One in five (or 20 percent of) caregivers of veterans older than age 65 reported using VA respite services in FY 2015.

U.S. Department of Labor (DOL)

The Family and Medical Leave Act (FMLA) was enacted in 1993 to require employers to provide unpaid, job-protected leave to workers in certain settings to attend to their own health needs, to bond with a new child, or to care for a parent, spouse, or child with a serious health condition.

FMLA only applies to governmental agencies and private employers with more than 50 employees. DOL is charged with monitoring and ensuring that employers comply with the Act. By 2013, most private employers were in compliance (Lipson, 2015).

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

Health Resources and Services Administration (HRSA)

Geriatric Workforce Enhancement Program (GWEP)7 This program focuses on improving competencies in geriatrics among not only health professionals, but also family caregivers and direct care workers. Although GWEP awards most of its funding to training primary care and direct service personnel, its awardees are also tasked with educating and training older adults and caregivers. Since the start of the program in July 2015 through March 2016, GWEP awardees have trained approximately 13,384 paid and family caregivers on a variety of topics. The top five training topics are

  1. basics of Alzheimer’s disease and related dementias;
  2. evidence-based programs for family caregivers;
  3. promoting self-care by the caregivers;
  4. community resources to support caregivers; and
  5. managing dementia.8

Over the course of the 3-year grants, HRSA expects that 52,352 paid and family caregivers will participate in a training program.

Federal Tax Benefits

The Internal Revenue Code currently provides a limited tax deduction for the medical and LTSS expenses of a dependent, non-spouse who resides with the taxpayer and whom the taxpayer provides more than 50 percent of their support. The deductible medical and LTSS costs are those that exceed 10 percent of the taxpayer’s adjusted gross income or 7.5 percent9 if the taxpayer is age 65 or older (IRS, 2014). The taxpayer qualifies by his or her level of financial support and not by meeting any criteria for being a caregiver, so the deduction does not apply to all caregivers, such as spousal or long-distance caregivers (IRS, 2014). Another tax benefit available at the option of employers is the federal Dependent Care Assistance Plan, which allows individuals to exclude up to $5,000 of expenses incurred in caregiving from their taxable income (IRS, 2016). However, only persons whose employers have set up a dependent care assistance benefit for their

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7 In 2015, HRSA merged several programs—Comprehensive Geriatric Education Program; Geriatrics Education Centers; Geriatric Training for Physicians, Dentists, and Behavioral/Mental Health Professionals; and Geriatric Academic Career Awards—into this one competitive program (HHS, 2016).

8 Personal communication, Joan Weiss, Senior Advisor, Division of Medicine and Dentistry, HRSA (e-mail March 28, 2016).

9 In 2017, deductible costs for taxpayers age 65 or older will be subject to the same threshold as younger persons (i.e., those medical and LTSS costs that exceed 10 percent of adjustable gross income) (IRS, 2015).

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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employees may take advantage of the deduction, and only 39 percent of civilian workers had access to such an account in 2013 (BLS, 2015).

A VISION FOR THE FUTURE

The committee agreed early on to adopt and build on the basic principles described in the Institute of Medicine report Crossing the Quality Chasm: A New Health System for the 21st Century (IOM, 2001). A focus on the individual experience of care requires attention to six dimensions of health care quality: safety, effectiveness, patient-centeredness, timeliness, efficiency, and equity (IOM, 2001). However, these principles alone do not explicitly address the critical role of family members and close friends in meeting the health care and LTSS needs of the older adult population or the challenges that family caregivers face.

The committee’s assessment confirms how essential family caregivers are to both health care and LTSS for older Americans. But there are other important reasons to call for a system-wide reorientation that takes into account both the individual and the family. As noted earlier, there is a growing gap between the numbers of older people in need of support and the numbers of potential family caregivers. In just 10 years (2026), the leading edge of the baby boomers will enter their 80s, placing new demands on both the health care and LTSS systems. Despite this reality, there is a significant disconnect between providers’ continued reliance on family caregivers, their exclusion of family caregivers from care planning, and their lack of attention to providing meaningful caregiver supportive services. Ignoring family caregivers’ presence leaves them unprepared for the tasks they may be expected to perform, carrying significant economic and personal costs, and with their own health needs unassessed and unaddressed. It may also diminish the quality of care for the care recipient.

The committee concludes that family caregiving has become a critical issue of public policy, linked to important social, health, and economic goals and essential to the growing needs of a population whose demographics foretell a new reality. The committee also concludes that the time has come for public acknowledgment of caregiving families—to make caregiving an integral part of the nation’s collective responsibility for caring for its older adults. Family caregivers are the mainstay of support for older people with a chronic, disabling, or serious health condition. But in today’s world, family caregivers cannot be expected to provide an array of complex care and support on their own. Family caregivers need greater recognition, information, and support to both help them care for older relatives or friends, and to maintain their own health, financial security, and well-being. If their needs are not recognized and addressed, family caregivers risk burnout

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

from the prolonged distress and physical demands of caregiving, and the nation will bear the costs.

To that end, the committee calls for a transformation in the policies and practices affecting the role of families in the support and care of older adults. The emphasis on person-centered care needs to evolve into a focus on person- and family-centered care. The markers of a transformed system will result in a society in which family caregivers:

  • Have their own health and well-being considered:
    • Health, well-being, and experiences of family caregivers are assessed and addressed.
  • Have rights and protections:
    • Where family caregivers of older people have rights and protections in health care, LTSS, and in the workplace.
    • Where family caregivers have the right to up-to-date health information and support they need, when they need it.
  • Have their preferences, needs, and strengths recognized and supported:
    • Where the uniqueness and diversity of families are properly recognized, and their caregiving preferences, needs, and strengths provide the foundation for care planning and services.
    • Where providers serving older people and their caregivers have the technical and communication skills and competencies to provide high-quality (best practice), culturally appropriate, person- and family-centered services.
  • Are supported as caregiving changes and evolves:
    • Where federal and state governments monitor progress toward this vision and adapt policy in response to changing demographic, social, technological, and economic circumstances.

METHODS OF THE STUDY

The committee deliberated over six in-person meetings and numerous teleconferences between November 2014 and March 2016. Two in-person meetings included public workshops featuring invited speakers on relevant related topics. The first workshop focused on caregiver experiences, their interactions with the health care and LTSS systems, and relevant legal issues. The second workshop examined the implications of demographic trends on family caregiving, meeting the needs of diverse caregiver populations broadly defined to include race and ethnicity as well as rural and lesbian, gay, bisexual, and transgender (LGBT) caregiving, and a husband’s experiences in caring for his wife with dementia. Appendix C contains

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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the workshop agendas. The webcasts of these events are available on the Academies’ website.10

Several committee workgroups were formed to review and assess the quality of the available evidence and to draft summary materials for the full committee’s review. The workgroups conducted in-depth reviews of the epidemiology of caregiving; the tasks that caregivers undertake and how caregiving affects their mental and physical health; the economic impact of caregiving (overall and in the workplace); the effectiveness of programs for supporting caregivers; and caregivers’ interactions with the health care and LTSS systems.

The data workgroup oversaw a commissioned analysis of the National Health and Aging Trends Study (NHATS) and its companion survey, the National Study of Caregiving (NSOC). NHATS is a longitudinal survey, funded by the National Institute on Aging, that is specifically designed to document how functioning in life changes with age (Freedman et al., 2011). It draws from a nationally representative sample of Medicare beneficiaries, age 65 and older, who live independently or in a senior community, assisted living facility, nursing home, or other organized setting (Freedman et al., 2013; Kasper and Freedman, 2014; Kasper et al., 2014). NSOC is a survey of the caregivers named by the NHATS respondents (except those living in nursing homes). The purpose of the commissioned study was to estimate the average number of years someone currently age 20 will spend during his or her lifetime as a caregiver of an older adult. The full analysis appears in Appendix D.

The committee also used the NHATS and NSOC public use files to develop tables and figures describing the characteristics of older adults who need help with living because of a health or functional limitation, the characteristics of their family caregivers, and caregivers’ reports of their experiences. These tables and figures appear in Chapters 2 through 4 and are labeled to reflect the source of the data. Appendix E describes the committee’s methodology for generating these tables and figures. Additional information on the public use files is available at http://www.nhats.org. Published findings from other surveys are presented throughout the report.

In its NHATS analyses, the committee distinguishes between the survey’s sample of older adults who need any type of assistance because of health or functioning reasons and “high-need” older adults. In these analyses, the term “high-need” is used for individuals who have probable dementia or who need help with at least two of the following activities: bathing, dressing, eating, toileting, or getting in and out of bed. These differences are important when considering potential policies and programs.

___________________

10 See http://www.nationalacademies.org/hmd/Activities/Aging/FamilyCaregivingforOlderAdults.aspx (accessed August 22, 2016).

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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For example, LTSS may target family caregivers who provide intensive care in the home or in an assisted living facility while employment-based policies may focus on employed caregivers who may or may not be providing intensive levels of care.

Challenges in Studying Family Caregiving

The depth and breadth of issues involved in family caregiving are especially complex because caregiving touches so much of life—family composition and relationships; work; gender; race, culture, and ethnicity; the health care system; LTSS; income and education; location; and many other aspects of life in contemporary America. All these factors, in turn, affect the family caregivers and the older adults for whom they are caring. Moreover, none of these societal factors are static, making it difficult for programs and research to stay current.

So much of what is known about family caregivers of older adults is derived from population-based surveys. Unfortunately, no survey, including NHATS and NSOC, has a large enough sample to assess the needs and experiences of older adults or their caregivers by all of the varied subgroups of interest across dimensions of race and ethnicity, rural residence, or sexual orientation.

The vocabulary of caregiving is also challenging. Many fundamental terms in the caregiving literature lack consistent definition. This includes not only the term “family caregiver,” as noted earlier, but also the types of supports that older adults need and the activities caregivers are engaged in, the services that caregivers need, and the effects of caregiving on caregivers themselves (e.g., depression or burden). Different terms are also used to describe family caregivers who are engaged in the most intensive and time-consuming tasks or who are supporting care recipients with significant, long-term impairments.

Outside the Scope of the Study

Family caregivers are essential to the well-being of many types of people with significant care needs, whether young or old. Their needs may be acute, progressively serious, and/or lifelong. Children with chronic illness and disability are typically cared for by young adult parents; adult children with developmental disabilities or mental illness are often cared for by their middle-aged and older parents; and returning veterans with physical and cognitive disability are cared for by their spouses or other family members. The reader should note that while this report focuses on care recipients age 65 and older, many of the conclusions and recommendations presented in

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

this report apply to all family caregivers regardless of the care recipient’s age.

ORIENTATION TO THE ORGANIZATION OF THIS REPORT

Chapter Objectives

This introductory chapter has described the background, scope, methods, and committee vision for this report.

Chapter 2, Older Adults Who Need Caregiving and the Family Caregivers Who Help Them, reviews what is known about the number and characteristics of older adults who need help because of health or functional limitations and the family caregivers who help them. It also describes the demographic and other societal trends that will affect the nation’s capacity to care for older adults in the future.

Chapter 3, Family Caregiving Roles and Impacts, examines the multiple and evolving roles of caregivers of older adults as well as the impact of assuming these roles on caregivers’ health and well-being (both positive and negative). It describes caregiver tasks, the dynamic nature of caregiving over time, the increasing complexity and scope of caregiver responsibilities, and issues involved in surrogate decision making.

Chapter 4, Economic Impact of Family Caregiving, examines the economic impact of unpaid caregiving on family caregivers of older adults who need help because of health or functional limitations and explores which caregivers are at greatest risk of severe consequences. Workplace and government policies and programs designed to support caregivers and/or mitigate these effects are also discussed.

Chapter 5, Programs and Supports for Family Caregivers of Older Adults, reviews the evidence on the effectiveness of interventions designed to support family caregivers of older adults, including educational and skills training, environmental modifications, care management, counseling, and multicomponent models. It also examines why promising interventions have not been disseminated and adopted in everyday settings.

Chapter 6, Family Caregivers’ Interactions with Health Care and Long-Term Services and Supports, examines caregivers’ experiences in health care and social services settings as they try to fulfill their roles and responsibilities described in the previous chapters. It reviews the challenges that caregivers encounter in helping older adults obtain needed services and outlines opportunities for advancing quality care and better recognition of and support for family caregivers.

Chapter 7, Recommendations to Support Family Caregivers of Older Adults, presents the committee’s conclusions and recommendations drawing from and summarizing the evidence presented in the previous chapters.

Suggested Citation:"1 Introduction." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

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Family caregiving affects millions of Americans every day, in all walks of life. At least 17.7 million individuals in the United States are caregivers of an older adult with a health or functional limitation. The nation’s family caregivers provide the lion’s share of long-term care for our older adult population. They are also central to older adults’ access to and receipt of health care and community-based social services. Yet the need to recognize and support caregivers is among the least appreciated challenges facing the aging U.S. population.

Families Caring for an Aging America examines the prevalence and nature of family caregiving of older adults and the available evidence on the effectiveness of programs, supports, and other interventions designed to support family caregivers. This report also assesses and recommends policies to address the needs of family caregivers and to minimize the barriers that they encounter in trying to meet the needs of older adults.

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