Elder Justice Roundtable: Research

Setting the Research Agenda to Improve the Forensic Science of Elder Abuse and Neglect

Presenter:
Sidney Stahl, Ph.D., Chief, healthcare Organizations and Social Institutions, National Institute on Aging, National Institutes of Health

First Responder:
Rosalie S. Wolf, Ph.D., Executive Director, Institute on Aging, University of Massachusetts Memorial healthcare

Dr. Sidney Stahl, chief, healthcare Organizations and Social Institutions at the National Institute on Aging (NIA), delivered "a plea for some sort of national research agenda, multiagency research agenda on elder abuse and neglect, based on the desperate need for targeted research in various kinds of areas." The lack of the most basic scientific research in the field, Dr. Stahl noted, prevents service providers and others from knowing the real scope of the problem and whether their interventions are working. NIA and the National Academy of Sciences recently announced a 10-month study on elder abuse and neglect to help create such a national agenda for research, and Dr. Stahl outlined his own seven-point agenda.

  1. Prevalence and risk factors. There is no nationally based probabilistic study on either abuse or neglect, and without a reasonable prevalence estimate, it is impossible to determine with any certainty the risk factors.
  2. Accurate measurements. There needs to be a single metric that is useful and culturally sensitive across various disciplines to measure prevalence.
  3. Natural history of abuse and neglect. Is elder abuse a learned response to stressors occurring within the family? Is frailty a precursor or result of elder abuse and neglect? The answers to these questions will dictate the kinds of interventions used.
  4. Lack of diagnostic specificity. While depression is common for the elderly, it also may be an appropriate response to an abusive and neglectful situation. There needs to be a clearer medical causation established through research.
  5. Lack of scientifically verified prevention interventions. At present, there are only two studies on abuse and neglect that meet the criteria for scientific adequacy of the National Academy of Sciences. Clearly, more are needed.
  6. Issue of self-neglect. There is a need to determine the economic and social cost-effectiveness of community services versus nursing homes in self-neglect situations.
  7. Institutional abuse and neglect. What are the characteristics of nursing home workers and the environment that lead to abuse and neglect in institutions?

Dr. Rosalie Wolf, executive director of the University of Massachusetts Memorial healthcare Institute on Aging, echoed Dr. Stahl's assessment of the paucity of research in the field, particularly as it relates to intra- and interpersonal dynamics and the contextual and societal factors that lead to abuse, as well as the consequences of such abuse. Some of the challenges she cited in conducting research on elder abuse and neglect include methodology, logistics, and design. Dr. Wolf stressed the need for collaborative partnerships between researchers and service providers in order for any research project to be successful.

Such partnerships can be difficult to forge and sustain, as evidenced by feedback obtained from a Centers for Disease Control-funded program that focused on research in prevention of violence against women. Service providers involved in this program reported that researchers were remote and arrogant, paid insufficient attention to the effect of the research on victims, and failed to solicit input from the practitioners. In order for any research to achieve its aims, there must be a mutually trusting relationship between the researchers and service providers, based upon communication and an acknowledgment of the fundamental differences between practitioners and researchers.

The participants discussed several issues surrounding research on elder abuse and neglect as related to the victims. Research involving human subjects is always a challenge for a number of reasons. Many researchers are uncomfortable dealing with people's pain and suffering. The lack of access to victims was also cited. The greatest challenge in undertaking research of this type is getting approval from institutional review boards (IRBs). Many participants complained that the process was cumbersome and lengthy and, often, placed many restrictions on research, such as mandatory reporting of abuse. Others cited the difficulty in obtaining informed consent, particularly from potential subjects with dementia. To overcome these obstacles, there is a need for greater cross-disciplinary collaborations so that medical, scientific, and legal issues can be addressed at every stage of the process. One example of a procedure that has dealt successfully with these issues was developed for research on human subjects. In that case, a certificate of confidentiality requires researchers to file a report if a human subject is in imminent danger but does not require the precise interview information to be disclosed, thus protecting the researchers from liability and the victim's privacy. Ultimately, many participants suggested that the IRBs, although a difficult process, were necessary mechanisms to protect both parties.

Lack of funding also was cited as a reason for the dearth of research in elder abuse and neglect. From the little data available, the frequency of elder abuse and neglect is far from clear: thus, a pilot research project would need a large sample size and would need to be conducted over at least 3 years. Participants estimated the cost of such a study at $2.5 million. Collaborative funding among agencies, such as the Department of Justice and National Institutes of Health, was suggested as the only way to generate the magnitude of funds needed.

Dr. Karl Pillemer, a professor at Cornell University's Department of Human Development, suggested that current and prospective programs must include an evaluation component to assess their efficacy as a condition of receiving funding. Most participants concurred that including a validated evaluative component in ongoing and future projects was a good idea but were concerned that conditioning funding on an evaluative component might be counterproductive.

Participants expressed the need to do something to care for elders being abused and neglected right now, but were very concerned that, without research and scientific evaluations, interventions might be doing more harm than good. For example, Dr. Pillemer cited a study that found that abused or neglected elders in contact with adult protective services (APS) are disproportionately institutionalized and die more frequently.

In addition to the lack of funding, there are few geriatric researchers interested in this issue. Accreditation for geriatric fellowships recently has been changed to 1 year, from 2 or 3 years, which makes it impossible to include a research component. Additionally, many medical schools steer students into more "glamorous" (and well-funded) areas of research. Thus, there was consensus that it was critical to interest students early in elder abuse and neglect.

Perhaps the most important reason cited for the scarcity of research was the lack of a constituency for this issue. Unlike violence against women, which feminists have taken up as an issue, and child abuse, championed by pediatricians and child advocates, elder abuse and neglect has not received a similar public and political response. The participants agreed that progress will follow the research, that research will follow the funding, that elder abuse and neglect must be placed on the national agenda before such funding will materialize, and that prosecutions and public awareness efforts were key to raising the national awareness.

The participants did provide some strategies to work around these obstacles. It was suggested that researchers should apply for funds from smaller foundations to piece together pilot data. The data could form the basis of a research agenda that would attract the larger institutions. Examining healthcare costs and outcomes in relationship to elder abuse and neglect could also provide important information to justify the need for research to foundations and others.

Participants suggested that what little data does exist, from local APS agencies, for example, should be compiled on a national level to provide a more accurate picture of the problem. Before this can be accomplished, however, a national reporting standard needs to be developed and implemented so data can be compared. Also, participants cited the need for descriptive studies, rather than large-scale statistical reviews. Some studies of this type already are under way and can provide the basis for developing hypotheses for larger research projects.

Date Created: October 18, 2000