Elder Abuse: What We Don't Know Will Hurt Us

Article excerpt

Elder justice is a long unrecognized human and civil rights issue that raises fundamental questions about how we value life and view suffering in old age. It's also an issue where real federal leadership and a modest investment of resources- by Congress, the Administration and private funders- could have a profound impact. But to date, we have seen scarce federal leadership or investment by any major entity.

Elder abuse can be physical, sexual and psychological; it can take the form of neglect by unpaid and paid caregivers or be financial exploitation. The problem cuts across all demographic and geographic borders and occurs in many settings. The 5.4 million Americans with dementia and people older than 85- the fastest growing segment of the population-are at greatest risk.

Dearth of Research and Dollars

Experts agree that what we know about elder abuse lags some 40 years behind our knowledge of child abuse and 20 years behind what we know about domestic violence. Emerging research indicates that people who fall prey to elder abuse number about one in every 10 people ages 60 and older, and 47 percent of people with dementia. For every one case we see, another 23.5 go undetected.

We don't know why elder abuse occurs, how best to screen for it, how to identify and address perpetrators, what programs and practices are most effective in addressing it, how much it costs or how to detect or prevent it. We don't even know what defines a successful outcome.

These knowledge gaps are rooted in our sparse investment in elder justice research and data collection. In 2009, the National Institute on Aging, part of the National Institutes of Health, spent just $1.1 million (l/1000th of its budget) on elder abuse research; according to 2011 U.S. GAO figures, the Centers for Disease Control and Prevention spent $50,000, or 0.0008 percent of its $6 billion-peryear 2009 budget. The National Institute of Justice, the Department of Justice's (DOJ) research arm, contributed $450,000 of its own funds, plus other DOJ funds totaling $1.2 million. The total- $2.35 million federal dollars for elder abuse research- is a tiny fraction of that spent for analogous research.

Given this shallow pool of knowledge, we urgently need more research. But such research raises thorny questions: Can human subjects with diminished capacity provide consent? What if proxy decision-makers are suspected abusers? Should researchers who suspect abuse make reports, intervene or discontinue their studies? Researchers and institutional review boards struggle with such questions, often delaying or impeding research. To address these challenges and facilitate research, Section 2023 of the Elder Justice Act (EJA) requires the office of Health and Human Services (HHS) to promulgate guidelines for these issues. To date, it has not done so. (It has, however, recently initiated a broader review of human subjects issues, presenting an opportunity to address challenges to elder abuse research.)

Perhaps most troubling is that there is virtually no intervention research to tell us what works. Targeting this gap is among the field's most pressing needs. Thus EJA Section 2044 requires recipients of EJA funds to evaluate results so they begin generating intervention data. The HHS research guidance pursuant to Section 2023 could promote sound methodology and strategic implementation in those evaluations.

Real progress also requires collecting uniform national data. …