Abstract
Elder abuse, sometime called elder mistreatment or elder maltreatment, includes psychological, physical, and sexual abuse, neglect (caregiver neglect and self-neglect), and financial exploitation. Evidence suggests that 1 out of 10 older adult experiences some form of elder abuse, and only 1 of out 25 cases are actually reported to social services agencies. At the same time, elder abuse is associated with significant morbidity and premature mortality. Despite these findings, there is a great paucity in research, practice, and policy dealing with the pervasive issues of elder abuse. Through my experiences as a American Political Sciences Association Congressional Policy Fellow/Health and Aging Policy Fellow working with Administration on Community Living (ACL) (Previously known at Administration on Aging (AoA)) for the last two years, I will describe the major functions of the ACL; and highlight on two major pieces of federal legislation: The Older Americans Act (OAA) and the Elder Justice Act (EJA). Moreover, I will highlight major research gaps and future policy relevant research directions for the field of elder abuse.
Keywords: elder abuse, health policy, national health and aging policy fellow
INTRODUCTION
Elder abuse, sometime called elder mistreatment or elder maltreatment, includes psychological, physical, and sexual abuse, neglect (caregiver neglect and self-neglect), and financial exploitation (1;2). Recent estimates show that at least 1 in 10 older adults suffer some form of elder abuse, and many in repeated forms (3;4). At the same time, only a small fraction of elder abuse is reported to the Adult Protective Services (APS). Evidence suggests that elder abuse is associated with emergency room visits, hospitalization, and nursing home placement and premature mortality (5–11). Despite these findings, there is a great paucity in research, practice, and policy dealing with the pervasive issues of elder abuse.
In March 2011, the Senate Special Committee on Aging held a hearing on elder abuse titled, “Justice for All: Ending Elder Abuse, Neglect and Exploitation.” Based on the Government Accountability Office (GAO) report, victims and experts highlighted the lack of research, education, training, and prevention strategies (3). It is estimated that national elder-abuse-related spending in 2009 included $1.1 million by NIH, $50,000 by the CDC, $5.9 million by the Administration on Community Living (ACL), $0.75 million by the Department of Justice Civic Division, and $1.2 million by the National Institute of Justice; the Office of Victims of Crimes and the Office on Violence Against Women spent $520,000 and $4.9 million respectively. In 2009, these federal agencies spent a total of $11.9 million for all activities related to elder abuse, which is dwarfed by the annual funding for violence against women programs ($649 million). Despite the services by these seven federal agencies, it appears that many older adults continue to experience abuse, neglect and exploitation. On June 14th 2012, World Elder Abuse Awareness day was held in the White House and president Obama proclaimed its importance and the needs to advance the field of elder abuse.(12)
Through my experiences as an American Political Sciences Association Congressional Policy Fellow/Health and Aging Policy Fellow, I will describe the purpose, authorizing statute and key functions of the ACL; and highlight the relevant federal policies and programs for elder abuse prevention, detection, and intervention with emphasis on two major pieces of federal legislations: The Older Americans Act (OAA) and the Elder Justice Act (EJA). Furthermore, I will highlight major research gaps and future policy relevant research directions for the field of elder abuse.
Administration on Community Living (ACL): Previously Administration on Aging (AoA)
The Older American’s Act (OAA) was passed in 1965, along with passage of Medicare and Medicaid, and was signed by President Lyndon B. Johnson. Although older individuals may receive services under many other Federal programs, today the OAA is considered the major vehicle for the organization and delivery of social and nutrition services to this group and their caregivers. The OAA created the ACL which consists of 56 State Units on Aging, 629 Area Agencies on Aging, 244 Tribal and Native organizations, 20,000 service providers, and thousands of volunteers. The mission of ACL is to develop a comprehensive, coordinated and cost-effective system of home and community-based services that helps elderly individuals maintain their health and independence in their homes and communities. In order to serve a growing senior population, ACL envisions ensuring the continuation of a vibrant aging services network at State, Territory, local and Tribal levels through funding of lower-cost, non-medical services and supports that provide the means by which many more seniors can maintain their independence.
ACL currently administers program under four authorizing statutes. The OAA is a federal legislation which is approved by the congress every 5 years. Throughout the different reauthorization process since its inception, there have been modifications incorporated into each bill. The OAA authorizes grants to states for community planning programs, as well as for research, demonstration, and training projects in the field of aging. The OAA also authorizes grants to Area Agencies on Aging for local needs identification. In addition, ACL administers the Alzheimer’s Disease Demonstration Grants to States program aimed to deliver supportive services, translate evidence-based models, and advance state initiatives toward coordinated systems of home and community-based care. Moreover, ACL receives Health Care Fraud and Abuse Control funding as authorized by the Health Insurance Portability and Accountability Act (HIPPA). Furthermore, ACL administers the Lifespan Respite Care Program created by the Congress in 2006 under Title XXIX of the Public Health Service Act. Lastly, ACL administers the Elder Justice Act (EJA), which was passed (yet to be fully appropriated) as a part of the Affordable Health Care Act.
THE OLDER AMERICANS ACT
The OAA includes four specific components (Titles II, III, IV, and VII) that have significant relevance to elder abuse. In Title II, OAA authorizes ACL to delegate a person responsible for elder abuse prevention and services in: 1) developing objectives, priorities, and long-term plans for elder justice activities; 2) supporting state elder abuse prevention activities; and 3) supporting research, data collection, and information dissemination. In addition, OAA requires the ACL to establish and operate National Ombudsman Resource Center under the supervision of the Director of the Office of Long-Term Care (LTC) Ombudsman Programs. Title II authorizes ACL to establish and operate the National Center on Elder Abuse to gather research evidence and provide information on elder abuse, to provide technical assistance and training, and to conduct research and demonstration projects.
Title III of the OAA requires states to submit to ACL a state plan for grant eligibility. If a specific state desires services for the prevention of elder abuse, the plan must contain assurances that Area Agency on Aging programs would be consistent with relevant state laws and synchronize closely with existing state APS-related activities. In addition, this provision requires the ACL to provide grant funding to states for supportive services that may include services for legal assistance and counseling, LTC ombudsman, prevention of elder abuse, and victim assistance and crime prevention programs.
In Title IV, OAA authorizes the ACL to provide grant funding for projects in local communities relating to elder abuse; outreach programs to assist elder abuse victims; extension of access to violence programs across lifespan; and promotion of research on barriers to provide coordinated and effective services to elder abuse victims. In addition, it requires ACL to provide grant funding to provide national legal assistance support system for State Units on Aging and Area Agencies on Aging, as well as to support demonstration projects to expand or improve the delivery of legal assistance to older individuals. Title IV requires the ACL to offer grant support to eligible entities to establish and operate Resource Centers on Native American Elders that focus on elder abuse. Furthermore, Title IV requires ACL to provide grant funding to conduct demonstration and to evaluate multidisciplinary projects between the state LTC Ombudsman Program, legal assistance agencies, and state protection and advocacy systems for individuals with developmental disabilities and individuals with mental illnesses.
In Title VII, OAA authorizes the ACL to provide funding to state agencies to establish an Office of the State LTC Ombudsman and State LTC Ombudsman program in order to identify, investigate, and resolve complaints from residents of LTC facilities. In addition, it requires ACL to provide grant funding to state agencies to develop and enhance programs to address elder abuse and to conduct community outreach and education, coordination of state and local services, training of relevant professionals and caregiver workforce, and promotion of state statutes to prevent elder abuse. Moreover, it mandates the state agencies to establish a State Legal Assistance Developer to coordinate components of legal services, assist legal service providers, promote financial management services for older adults, assist older adults in understanding their legal rights and choices, and improve the quality and quantity of legal services provided. Furthermore, it mandates ACL to provide grant funding to implement vulnerable elder rights protection activities for Native American groups and elder fatality and serious injury review teams. Lastly, it requires ACL to award grants to promote and expand state comprehensive elder justice systems, provide access to information, coordinate multi-disciplinary efforts to reduce duplications and gaps in services in the existing systems, and standardize the collection of data relating to elder abuse.
ELDER JUSTICE ACT
The Elder Justice Act (EJA) was passed as a part of the Affordable Healthcare Act and for the first time, the EJA authorizes federal response to the issues of elder abuse through training, services and demonstration programs. ACL is responsible for the implementation of the EJA as well as formation of the Elder Justice Coordinating Council and the National Advisory Board. More specifically, the Elder Justice Coordinating Council will be required to issue reports to describe the activities, accomplishments, and challenges faced as well as to provide legislative recommendations to congressional committees. The National Advisory Board has already solicited nomination to the National Advisory Board which will be required to submit reports and recommendations regarding elder justice activities.
The EJA will also be responsible for issuing human subjects protections guidelines to assist researchers and establishing elder abuse forensic centers. The EJA will provide grants and incentives for long-term care staffing and electronic medical records technology grants programs and will collect and disseminate annual data related to elder abuse from adult protective services. The EJA will also be responsible for sponsoring and supporting trainings, services, reporting and the evaluation of elder justice programs in community and long-term care settings. Regrettably, compared to the previous EJA from the 109th Congress, key elements were dropped in the current bill which include but not limited to: the national data collection effort, the consumer clearinghouse, and grant programs for prevention, detection, assessment, and treatment of, intervention in, investigation of, and prosecution of elder abuse.
The EJA has authorized $777 million funding over four years, and immediate appropriation is particularly important, as the APS will garner significant funding to bolster their direct services to victims. Recently, a survey in 30 states reported that 60% of APS programs have faced budget cuts on average 14%, while 2/3 of the APS reported an average increase of 24% in elder abuse reports. A recent letter from the Leadership Council of Aging Organizations (13) strongly urged the Senate and House Subcommittee on Labor, Health and Human Services and Education (HELP) to fully appropriate the EJA..
Future Research Directions
Population Research
Nationally representative longitudinal studies are needed to examine the incidence of elder abuse subtypes in different settings. While the elder abuse prevalence estimates have improved, it is unlikely to be sufficient to approximate elder abuse incidence from recalling abusive acts within a specific period. Improved incident estimates and correlations between different subtypes of elder abuse are needed from longitudinal data. Studies need to focus specifically on the risk/protective factors associated with the incident cases, as well as specific estimates of the strength of these relationships.
Longitudinal studies are needed elucidate cognitive decline and dementia subtypes on the risk for incident elder abuse. In addition, it is important to elucidate the specific cognitive domains and behavioral manifestations associated with dementia in the relations to incident elder abuse. For physical function, studies are needed to quantify the causal mechanisms between self-reported physical function and directly observed physical performance testing and the risk for incident elder abuse. In addition, research is needed to consider incident physical disability and transition between disability states with respect to the risk for elder abuse and the impact of elder abuse on physical disability and its trajectories.
For psychological factors, it is critical to explore the impact of psychological decline on the risk for elder abuse, as well as the impact of elder abuse on psychological distress and trajectories. Comprehensive assessment of psychological factors is needed on the constructs of depression, anxiety, perceived stress, hopelessness, suicidal ideation, and other clinical psychiatric constructs. For social relations, research is needed to examine the temporal relations between social network, social support, loneliness, and social participation in relations to elder abuse. Social network analyses will be important tools to elucidate the network size, density, and quality in relation to the risk for elder abuse. Equally important, these research questions need to specifically consider the effect size of these relationships and to take into account a wide range of potential confounders and mediators in relation to the specific hypotheses testing.
Systematic research is also needed to understand the potential perpetrators’ characteristics, relations, settings, and contexts with respect to elder abuse victims. Traditionally, it has been very difficult for researchers to enroll and survey the potential perpetrator(s) for scientific research. In addition, perpetrators for elder abuse may or may not live in the same household and/or geographic areas as elder abuse victims. Sometimes when abusive acts occur, there is no way to identify or track the potential perpetrator(s), especially in the case of financial exploitation and grey-line boundaries between caregiver neglect and self-neglect. The fields of child abuse and domestic violence have demonstrated feasibilities of conducting research on potential perpetrator(s), and we need to continue pushing for innovative methods to understand the potential perpetrators’ perspectives. This information will have direct relevance on the design and conduct of prevention and intervention studies.
Research is needed to understand the morbidity and mortality associated with specific subtypes of elder abuse. In addition, research is needed to examine the impact on elder abuse subtypes on the utilization of health care services in terms of outpatient physical encounters, emergency department visits, hospitalizations, mental and behavioral services, home health services, skilled nursing facility admissions, and long-term care. Research is needed to explore the risk, rate, and intensity of these health services utilizations with respect to elder abuse. Rigorous economic analyses are needed to examine the costs associated with elder abuse and specific subtypes. As many cost-benefit analyses are biased toward older adults, innovative strategies are needed to capture the wide range of personal, community, financial, and societal costs of elder abuse.
Unification and Standardization of State APS Database
Currently, most states have different APS reporting and data collection systems, which create enormous barriers to understanding the issues of elder abuse at the national level. In order to gain deeper and systematic understanding of the existing APS systems, unification and standardization of APS databases are critically needed. Despite the data collection variations in individual states, in part due to differing statutory responsibilities, the core common elements are needed to be uniformly collected across all states. In addition, this approach would provide invaluable information about the short-term and long-term outcomes of the APS investigations as well as elder abuse recidivism. It will be important to follow these APS cases over time with respect to specific encounters with health care, social services, legal, and criminal justice systems. Especially relevant to ACL, it would be an enormous scientific value, if the APS data could be linked with other OAA authorizing services (ie, nutrition programs, ombudsman programs and etc). Furthermore, unified national APS data collection could be invaluable to: evaluate the needs, process, and outcomes of APS programs and interventions at the individual client’s level; evaluate the current models of Multidisciplinary Team; evaluate the effectiveness of current training programs; and explore the context of the barriers for APS staff in their daily work.
Research is needed to identify the perspectives, needs, barriers and context of elder abuse directly from the elder abuse victims who may have contact with APS, social services, legal or clinical settings. Qualitative studies and/or mixed methods studies are also needed to provide more comprehensive understanding of elder abuse issues. However, identifying, reaching, and consenting elder abuse victims could be difficult, especially regarding human subject protection and confidentiality issues. Multidisciplinary collaborations are needed to involve APS, clinicians, social workers, legal professionals, institutional research board, and other relevant disciplines.
Interventions
Recent reviews of literature suggest there is a great paucity in our knowledge about the evidence-based prevention and interventions strategies to assist the victims of elder abuse (14). Although multidisciplinary team approaches and multi-component interventions appear to be the best approach, more systematic studies are needed. Rigorously designed intervention studies and measures of relevant outcomes to elder abuse are needed. In addition, prevention strategies are critically needed. Systematic examinations of the longitudinal risk/protective factors as well as effect size are needed to devise targeted prevention studies. Given the extent of the different types of elder abuse and variation in risk/protective factors and perpetrator characteristics, intervention and prevention studies should begin to focus within the specific dyads which may be at particularly high risk for elder abuse. Types of prevention for potential perpetrator(s) could include anger management, coping strategies, skill training, and counseling. Prevention and intervention studies must consider the cost-effectiveness as well as the potential for scalability at the city, state, or national levels.
Cultural Issues
With the increasingly diverse U.S. and global aging population, we must set national priorities to better understand the cultural issues related to elder abuse in different racial/ethnic populations (15). Recent studies have expanded our knowledge about elder abuse in African American, Latino, Korean, Indian, and Chinese populations. However, vast gaps still exist. Quantitative and qualitative studies are needed to better define the concept and cultural variations in the construct and definition of elder abuse and its subtypes. In addition, cultural explorations are needed to identify the barriers to reporting elder abuse with the specific socio-cultural contexts. Moreover, studies are needed to understand the prevalence, incidence, risk/protective factors, and consequences associated with elder abuse and its subtypes in these populations. Furthermore, research is needed to explore the issues of cultural norms and cultural expectations in relation to the perception, determinants, and impact of elder abuse in different racial/ethnic communities.
Significant challenges exist in the preparation and conduct of aging research in minority communities, especially regarding culturally sensitive issues such as elder abuse. The Community Based Participatory Research (CBPR) approach could be a potential model to explore the issues of elder abuse in these communities. CBPR necessitates equal partnership between academic institutions with community organizations and key stakeholders to examine the relevant issues. This partnership requires reciprocal transfer of expertise and needs to build infrastructure towards sustainability. Recent elder abuse research in the Chicago Chinese community has demonstrated success and has enhanced infrastructure and networks for community engaged research and community-academic partnerships. CBPR could be a novel model for conducting systematic and culturally appropriate research in minority populations. Interdisciplinary efforts are needed to promote elder abuse awareness in a culturally appropriate way at the community, state, and national levels (16).
Needs for Increased Funding and Investigators
Compared to the field of child abuse and domestic violence, funding for elder abuse is extremely low. It is important for NIH intramural and extramural programs to consider elder abuse as a strategic priority in the coming years. It is equally important for NIH, AHRQ, NSF, and other relevant public and private funding agencies to consider dedicated RFAs to attract researchers from other fields. This is especially important, as there is no research expert currently sitting on any of the standing Center for Scientific Review (CSR) panels. Without the presence of knowledgeable NIH grant reviewers, the field of elder abuse is in great jeopardy.
We need to continue expanding the research workforce to conduct sound scientific research to advance the field of elder abuse. There are multiple barriers for investigators to carve out a career path dedicated to elder abuse. Lack of protected time, lack of existing data, human subject issues, access to elder abuse victims, lack of NIH-dedicated mechanisms are often cited as barriers. Junior investigators could continue applying for the traditional K-mechanisms as well as other career development pathways (e.g., Paul Beeson Award, Doris Duke Award, RWJ Awards, etc.). Following the model for child abuse and domestic violence, the NIH could institute novel career development mechanisms to build interdisciplinary research careers in elder abuse.
Policy Initiatives
Despite the continued national efforts to fully appropriate the Elder Justice Act, three other relevant pending legislations could significantly impact the field of elder abuse. First, the Violence Against Women Act (VAWA) is pending reauthorization. Despite interest in the prevention and treatment of violence against older women, it constitutes a very small fraction of the legislation. Second, the Elder Abuse Victims Act (EAVA) is currently being drafted. This legislation will provide unprecedented services and protection to the victims of elder abuse at the national level. Third, the Older Americans Act (OAA) is up for reauthorization in the coming year. Among many components of the OAA, protection of older adult and elder justice related activities are a critical component that must be sustained and expanded. Comprehensive advocacy, research and policy efforts are needed to advance the field of elder abuse within these legislations at the local community, city, state, and federal levels
CONCLUSION
Through the experiences of a Health and Aging Policy Fellow, this paper highlights the major function of ACL and two federal legislations specifically dealing with elder abuse. The EJA represents the first federal legislation dedicated to combating elder abuse and its full appropriation is critically needed. Nationally representative longitudinal research is needed to better define the incident, risk/protective factors, and consequences of elder abuse in diverse racial/ethnic populations. Systematic education and training are critically needed across all relevant fields. Comprehensive efforts are needed to continue attracting scientific investigators in multiple disciplines. While there remain vast gaps in the field of elder abuse, unified and coordinated effort at the national level must continue in order to preserve and protect human rights of a vulnerable and diverse aging population (16).
Table 1.
Major Federal Legislation on the Issues of Elder Abuse
| Older American Act | Title II: Administration on Aging |
| Title III: Grants for State and Community Program on Aging | |
| Title IV: Activities of Health, Independence, and Longevity | |
| Title VII: Vulnerable Elder Rights Protection Activities | |
| Elder Justice Act | All Titles |
| Public Health Service Act | Section 393: Interpersonal violence within family and among acquaintance |
| Section 399p: Grants to foster public health responses to domestic violence, dating violence, sexual assault, and stalking | |
| Section 758: Interdisciplinary training and education on domestic violence and other types of violence and abuse | |
| Social Security Act | Title XI: General Provision, Peer Review, and Administrative Simplification: Reporting to law enforcement of crimes in long-term care facilities |
| Title XVIII: Medicare requirement for skilled nursing facilities | |
| Title XIX: Medicaid requirement for nursing facilities and home and community care for functionally disabled elderly individuals | |
| Title XX: Block grants to states for social services and elder justice | |
| Violence Against Women Act | Enhancing training and services to end violence against and abuse of women later in life |
Table 2.
Major Research Directions for the Field of Elder Abuse
| Population Research | Incidence of elder abuse subtypes in different setting |
| Longitudinal study of risk/protective factors | |
| Potential perpetrator characteristic, relationship, settings and context of elder abuse | |
| Consequences of elder abuse | |
| Leverage Existing Longitudinal Studies | Chicago Health and Aging Project, Health and Retirement Study, National Social Health Aging Project, etc |
| Dataset linkage with adult protective service (APS) data | |
| Adult Protective Services | Unification across states with core elements of data collection |
| Unification of definitions for elder abuse | |
| APS outcome and its effectiveness | |
| Access to elder abuse victims to conduct quantitative, qualitative or mixed methods research | |
| Intervention Studies | On both victims and perpetrators |
| Cultural Issues | Linguistic/cultural complexicities |
| Use of community-based participatory research methods |
Acknowledgments
The authors wish to thank the front line workers combating the issues of elder abuse and neglect and protecting this extremely vulnerable population.
Sponsor’s Role: NONE
Footnotes
Author Contributions: Dr. Dong was responsible for the conception and design and was involved in the drafting of the manuscript, critical revision of the manuscript and statistical analysis of the manuscript.
Conflict of Interest
Dr. Dong is supported by the APSA Congressional Policy Fellowship/Health and Aging Policy Fellowship and National Institute of Health grants (R01MD006173, R01AG042318, R01CA163830, R21AG038815 & R01 AG11101), ARRA (RC4 AG039085), Paul B. Beeson Award in Aging (K23 AG030944), The Starr Foundation, John A. Hartford Foundation and The Atlantic Philanthropies. Dr. Dong reports no conflict of interest and declares no financial interest.
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