Hidden Shame – Abuse of Older Adults

Posted: July 16, 2014 by tinamaschi in Uncategorized

Hidden Shame

By Julia Portale

 Background and Scope of the Problem

            According to the National Commission on Aging, nearly five million older adults in America are abused every year, with a resulting $2.6 billion dollar loss of assets suffered by victims of financial abuse (http://www.ncoa.org). Even mild cognitive impairment, common among older adults, has been shown to impair financial abilities such as conceptual knowledge, bills and bank statement management and overall capacity (Griffith, Belue, Sicola, Krzywanski, Zamrini, Harrell, & Marson, 2003). Changes in technology including online banking and bill paying may exacerbate the challenges of maintaining financial control and stability among those with cognitive impairment. As trusted health advisors, many people with cognitive challenges turn to their primary care providers for guidance on financial matters, health practitioners who lack the time and expertise to advise patients on these matters (Widera, Steenpass, Marson, & Sudore, 2011). The problem of financial abuse is even greater for African Americans, with 23% reporting financial exploitation and 24.4% reporting psychological mistreatment after age 60 compared to 8.4% and 13.2% for other groups respectively, as measured in a telephone survey (Beach, Schultz, Castle, & Rosen, 2010).

            This abuse comes at a time of vulnerability for people who have survived the journey of life and find themselves physically, mentally or emotionally dependent on others for personal safety and survival. The majority of this abuse comes at the hands of family members (http://www.apa.org/pi/aging/resources/guides/elder-abuse.aspx), people that elders not only rely upon but may have raised, loved and still love deeply. Similar to domestic violence, it can be extremely challenging for these people to advocate for themselves. Faced with a future of increased physical and/or cognitive decline, it does not become easier over time to turn relatives or caregivers over to protective services whose staff caseloads are often overflowing. In some cases caregivers themselves are older – whether they are older children of very old parents or one spouse caring for another. Stress puts caregivers themselves at higher risk of death (Shulz & Beach, 1999) and, over time, can lead to neglect and unintended abuse. Not surprisingly, elder abuse is associated with higher rates of hospitalization (Dong & Simon, 2013). A nine-year observational cohort study (Lachs, Williams, O’Brien, Hurst & Horwitz, 1997) identified age, race, poverty, functional disability, and cognitive impairment as risk factors for reported elder abuse. A recent study (Wiglesworth, Mosqueda, Mulnard, Liao, Gibbs & Fitzgerald, 2010) found that 47% of those with dementia were mistreated. With the aging of the population, these numbers are expected to increase, resulting not only in increased suffering by individuals and families, but increased financial strain borne by society paying the higher health care costs of abused elders and providing financial subsidy to those who would have otherwise cared for themselves but have been robbed of their assets and are no longer able to do so.

            With the number of people over 60 expected to double in the next ten years to 1.2 billion, and abuse rates comparable across many cultures (www.inpea.net), this humanitarian and forensic challenge is not reserved for the United State alone. It is a problem of epidemic proportion and social workers, aligned with the medical and legal profession in the communities where they practice, have an obligation to advocate for changes to alleviate this insidious form of human suffering.

 Case Example

            Ned is an 86 year old, single man with moderate financial means. He has lost most of his friends over the years, lives alone in a small apartment and is socially isolated. He has one niece who lives in the area. When Ned fell recently and broke his hip, his niece and her husband invited him to come home to their apartment to recuperate. Although Ned qualified for medical home care and home health aide support in his own home, he opted to stay with his relatives during his recuperation. Ned’s niece lived in a modest apartment and converted a small closet into a sleeping space for Ned. It was a challenge to move in and out of the closet after his recent surgery and so he mostly stayed in bed. After a couple of weeks, Ned’s niece and her husband asked him to contribute to the family food bill and he began subsidizing their monthly income. Ned was referred to protective services by his physician during a post-surgical check up. When protective services followed up with a site visit, Ned admitted that he was being taken advantage of by his relatives. Protective services offered him shelter at a nearby facility where he could receive medical attention as well as distance from his family (an option not available to many in similar situations). Ned considered this option but chose to stay with his family in his closet room until his health was better and he could move back to his apartment. He continued to live with his family, increasing the amount of money he contributed to the household over time, thereby increasing their reliance on his income and his reliance on them for his livelihood. This example, adapted from a real case, demonstrates the challenge faced by elders, health care providers, and protective services when someone is being taken advantage of but has a limited social and family network and comes to rely upon the abusers and, in some cases, the abusers end up relying on the abused for financial resources.

Theory/Perspective

Using a social justice systems approach is a useful theoretical construct for addressing Ned’s case (and other cases of elder abuse as well). Social justice systems allow social workers to collaborate with individuals and families within systems. As in Ned’s case, he is interacting with the medical and criminal justice systems (protective services) which become touch points for intervention and supports the practice of collaboration involving social and legal interventions consistent with assisting individuals in families to improve function and combatting unjust social conditions (Maschi , Bradley & Ward, 2009). In Ned’s case, the medical system becomes the touch point where he could be approached with regular supportive frequency to enable him to legitimately “escape” his home environment for treatment. If this medical practice had incorporated mental health into its process, there might have been an opportunity to address the situation in ways that did not require the legal system to intervene. Working with Ned, mental health practitioners might have been able to support Ned and his family with strengths-based planning to transition to a healthier environment with needed social supports, psycho-education and planning with both Ned and his family, and connection to other services that might have led him to choose a different path than staying in the closet. The legal system in this case – and most cases if there is even an intervention – was both helpful and scary to Ned. While he acknowledged he was being mistreated, the choice Ned was given required him to make an abrupt tradeoff between a known environment of mistreatment and an unknown environment and an uncertain future. As with other types of domestic violence, this is a challenging decision often resulting in a decision to remain in the unhealthy environment. This is often the case with older adults in abusive situations. They cannot envision an alternative, they are with family – for better or worse – and by the very nature of surviving many decades on the planet, they are resilient. Enabling a social justice systems approach to function effectively with individuals and families requires mental health workers to be integrally involved in helping people advocate for themselves and navigate the tricky waters of social, emotional, and economic connections. It is an approach that holds promise for empowering individuals through casework and changing society with reform that supports older people through the various systems through which they inevitably travel.

The theory itself is a useful construct for helping social workers frame how the field of mental health can intersect with other systems where clients participate. Because the social justice systems approach views the law itself as key to the intervention, there are acknowledged limitations (anti-therapeutic consequences) of the engaging the legal system when abusers and individuals’ interests are intertwined. The theory’s key drawback with this population is the challenge of engaging elders and their families as they rarely want to interact with the legal system and do not want to bring shame to or distance themselves from their families.

 Human Rights

            Two relevant United Nations documents that provide guidance and direction for addressing this population are the Universal Declaration of Human Rights (UDHR) and the World Health Organization’s comprehensive mental health action plan (2013-2020) which was adopted by the World Health Assembly by 135 Member States, 60 global academic centers, and 76 NGOs.

            The UDHR is the fundamental document providing guidance on the issue of elder abuse. Articles 3 which states “Everyone has the right to life, liberty and security of person” and Article 5 which states “No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment” are human rights principles that apply to abuse of vulnerable populations including older people. Interestingly, Article 2 does not specify age as a category entitled to the rights in the Declaration. It mentions race, color, sex, language religion, political opinion, national origin, property, birth, or other status. One can assume that age in encompassed in birth or other status, but it is not specifically called out – perhaps another sign of how hidden our elders are, and were when the Declaration was written.

            The comprehensive mental health action plan, while drafted by the WHO, is endorsed by the UN and provides important guidance for this population. It sets directions for mental health including a central role for community based care and emphasis on human rights, moving away from a pure medical model to include income generation, education, housing, social services, and social determinants of mental health. It emphasizes empowerment of people with mental disabilities and prevention of suicide. All of these issues are fundamental to protecting elders’ human rights and dignity. While this document makes specifies the rights of those with mental disabilities, it doesn’t specify cognitive decline although is assumed to be included. Empowering people with cognitive issues to advocate for their rights is an important component of helping older adults and their caregivers of all kinds understand how best to provide safe and meaningful life in one’s final chapters.

            The two documents, when combined, provide important guideposts for preventing elder abuse. Emphasizing the moral imperative to ensure that humans are not subjected to cruel and inhumane treatment and ensuring the right to basic human necessities can improve the likelihood that people are protected from potential abusers. These documents also support intervention from the legal, medical, and mental health communities to help people leave situations where their fundamental rights are violated and instead are provided support for healthier living situations.

 Federal and State Policies

            The Elder Justice Act (EJA) was signed into law as part of the Affordable Care Act in 2010. It is the only existing comprehensive national legislation on elder abuse. It provides authority for approximately 600 million dollars to coordinate federal, state, local, and private agency efforts to combat elder abuse; national funding for Adult Protective Services, grants to prevent elder abuse, establishment of national forensic centers, supports ombudsman programs and training, and enhanced long-term care staffing. This is a major piece of legislation that had been in development for close to 10 years.   There are two major drawbacks of the legislation – one is that it does not fully recognize the need to involve the criminal and civil justice system in some elder abuse cases (Stiegel, 2010) and, more importantly, no funding has been appropriated by Congress to support the law. One if its requirements is the establishment of an Elder Justice Coordinating Council which is in effect and does meet to coordinate policy-making and advocacy work in this area including the just released Elder Justice Roadmap (2014). This roadmap is an important piece of work that advocates for multi-disciplinary action, cultivation of political constituency, developing infrastructure to promote coordinated efforts, strengthening long-term care, establishment of resource centers, using Medicare and Medicaid policy to prevent and mitigate elder abuse.

            A key state law in Connecticut is the expansion of mandatory reporting of elder abuse enacted in 2012 (2012-R-0437). Mandated reporters now include physicians, interns, nurses, nursing home staff, patient advocates, medical examiners, dentists, optometrists, chiropractors, podiatrists, social workers, clergymen, policy officers, pharmacists, psychologists, and physical therapists. Mandated reporters who fail to report can face fines and imprisonment depending on the type of failure. The challenge with this law is that there is no associated training on how to identify abuse. These are either very trusted individuals or those who don’t know victims well at all, and many of these professionals don’t feel qualified to report someone, especially if that person denies the abuse. Imagine a primary care physician Dr. Jones, who has treated Mrs. Smith for 40 years and who is nearing retirement himself. He has seen cognitive decline, some self-neglect, and maybe Mrs. Smith’s husband is verbally or physically abusive to her but he can’t quite tell because both of them have some cognitive decline and deny any abuse. Dr. Jones lets it go for awhile and the deterioration is slow. At what point does he call protective services? The patient is dependent on her husband and vice versa, neither has anywhere else to go, they have lived together for 50 years, both show signs of cognitive decline, and both deny any abuse. Without specific training, it will be very challenging for these professionals to know how to follow this law. Given the legal caseloads in the courts, it is unlikely that cases will come to prosecution unless they are extreme and have received publicity. By the time a court case winds its way through the legal system the victim and/or abuser may have passed away.

            Both of these laws/policies are important but obviously the federal legislation is virtually meaningless without funding and the state legislation is challenging without sufficient education for mandated reporters. Continued vigilance with state legislators to support mandated reporting through continuing education requirements and working with the Elder Justice Coordinating Council through lobbying and advocacy with representatives and advocacy groups are opportunities to continue creating visibility for these important issues. National and local advocacy groups already exist in this area so collaborating with these organizations to bring more visibility and media coverage of the issues of elder abuse is an important way to advocate for this population.

 Prevention or Intervention Response

The Robert Wood Johnson Foundation (RWJF) provided five years of funding to establish the Center for Elder Abuse Prevention (CEAP) in Fairfield, Connecticut in 2007. While its initial grant funding has ended, its parent organization Jewish Senior Services, has continued to fund the program from its operations (http://jhe.org/services/advocacy-education/elder-abuse-prevention). The CEAP provides prevention services in the form of community education to promote elder abuse awareness as a prevention strategy and advocates at the local, state and federal level to promote implementation of best practices in prevention, reporting, and intervention. The organization provides a shelter for older adults suffering from abuse and collaborates with domestic violence organizations to ensure that older adults seeking shelter at traditional domestic violence shelters have an alternative when their medical and/or emotional needs cannot be met in a more traditional shelter setting.

            This program is listed as an evidence-based program on the Administration on Aging’s National Center on Elder Abuse website (http://www.ncea.aoa.gov) and does collect data on how many people have been educated, what programs were developed and delivered, and what advocacy efforts were conducted. It quantifies the number of referrals the staff make, number of shelter cases, and community members educated.          

     The program director speaks at national meetings with legislators and is asked to provide guidance for state legislators when they are drafting legislation or holding hearings on elder abuse. It is hard to quantify effects beyond these metrics. How many people saw something and said something as a result, how many elders were able to recognize they were in abusive situations, how many family members decided that maybe it was wrong to ask for that money from a vulnerable elder? These are important answers to uncover but it is very challenging to quantify what didn’t happen as a result of a prevention program at this scale.    

     The role of advocacy is fundamental to this program and has successfully resulted in best practices and coalitions of various constituencies to combat elder abuse as evidenced by the annual meeting that showcases best practices in other states (e.g., conservatorships in New Jersey) and is well attended by law enforcement, the legal community, and service providers. The ratings from these conferences are consistently high, with people reporting that it is useful in their work to protect elders from abuse both in content and networking opportunities.                                                                                    One recommendation on how this program could improve its effectiveness would be to initiate a collaboration with an academic institution to identify, research, report, and promote study outcomes on a key elder abuse issue of interest to the general public. This study could generate actionable outcomes that can be used to help potential victims identify the signs of vulnerability and help potential perpetrators see their behaviors as unacceptable. One example would be to look at people who have lost a spouse which puts them at emotional, social, and financial risk, and then work to educate the public on areas of risk so those who are recently widowed can be taught to protect themselves, and family members can be educated in ways that demonstrate it is unacceptable to take advantage of someone in a vulnerable state.              

     Another recommendation is to create a coalition with domestic violence providers to combine advocacy forces where there is common ground. This is challenging because many domestic violence prevention advocates are singularly focused on younger women as their population of interest and often need education themselves to see there is common ground among vulnerable people being abused in domestic environments. If this could be achieved, the collaboration could bring more media visibility, the main vehicle for widespread education on important issues in this country, and shared resources to increase both efforts’ overall impact.

            List of resources to address elder abuse issues and advocacy for prevention and intervention:

National Center for Elder Abuse Prevention:

http://www.ncea.aoa.gov/Stop_Abuse/EBP/Database/Index.aspx?state_id=CT

National Adult Protective Services Association:

http://www.napsa-now.org/policy-advocacy/eja-implementation/

National Legal Resource Center (Administration on Aging):

http://www.nlrc.aoa.gov/Legal_Issues/Elder_Abuse/Elder_Justice_Act.aspx

National Center on Aging (videos, advocacy campaigns, etc.):

http://www.ncoa.org/public-policy-action/elder-justice/

Description and requirements of Elder Justice Act:

http://gerontology.usc.edu/news-resources/news/what-is-the-elder-justice-act/

Advocacy Group with ways to become involved – blogs, toolkits, letters to Congress:

http://www.elderjusticecoalition.com/

National Center on Elder Abuse/Administration on Aging – new roadmap:

http://www.who.int/mental_health/action_plan_2013/en/

Center for Elder Abuse Prevention:

http://jhe.org/services/advocacy-education/elder-abuse-prevention/

American Psychological Association:

http://www.apa.org/pi/aging/resources/guides/elder-abuse.aspx

Hidden Shame

References

Beach, S.R., Schultz, R., Castle, N.G., & Rosen, J. (2010). Financial exploitation and

     psychological mistreatment among older adults. Differences between African

     Americans and non-African Americans in a population-based survey. The Gerontologist

     (50), 744-757.

Dong, X.Q., & Simon, M.A. (2013). Elder abuse as a risk factor for hospitalization in older

     persons. Journal of the American Medical Association Internal Medicine (173), 911-917.

Elder Justice Act (EJA), (2010). Elder Justice Act of 2009. Retrieved July 10, 2014, from

                  http://www.ncea.aoa.gov/…ELDER_JUSTICE_ACT_2010.pdf.

Elder Justice Roadmap Project (2014). Retrieved July 10, 2014, from

                  http://ncea.acl.gov/Library/Gov_Report/index.aspx.

Griffith, H.R., Belue, K., Sicola, A., Krzywanski, S., Zamrini, E., Harrell, L., & Marson, D.C.

     (2003). Impaired financial abilities in mild cognitive impairment: A direct assessment

     approach. Neurology (60), 449-457.

Lachs, M.S., Williams, C.S., O’Brien, S., Hurst, L., & Horwitz, R. (1997). Risk factors for

     reported elder abuse and neglect: A nine-year observational cohort study. The

   Gerontologist (37), 469-474.

Mandatory Reporting of Elder Abuse. (2012-R-0437). Retrieved July 10, 2014

                  http://www.cga.ct.gov/2012/rpt/2012-R-0437.htm.

Maschi, T., Bradley, C., & Ward, K. (Eds.) (2009). Forensic social work: Psychosocial and legal

                  issues across diverse practice settings. New York: Springer Publishing Company.

Sato, M., Zhao, L. & Stuart, B. (2008). Racial and ethnic disparities in the treatment of dementia

   among Medicare beneficiaries. Journals of Gerontology, Series B, Psychological Services

   and Social Sciences, (63), S328-S333.

Schulz, R., & Beach, S. (1999). Caregiving as a risk factor for mortality: The caregiver health

     effects study. Journal of the American Medical Association, (282), 2215-2219.

Stiegel, Lori A. (2010). Elder abuse prevention: Elder Justice Act becomes law, but victory is

     only partial. BIFOCAL (31), (1-2).

United Nations. Universal Declaration of Human Rights. Retrieved July 10, 2014 from

                  http://www.ohchr.org/EN/UDHR/Documents/UDHR_Translations/eng.pdf.

Widera, E., Steenpass, V., Marson, D., & Sudore, R. (2011). Finances in the Older Patient with

     Cognitive Impairment. “He Didn’t Want Me To Take Over.” Journal of the American

     Medical Association (305), 698-706.

Wiglesworth, A., Mosqueda, L., Mulnard, R., Liao, S., Gibbs, L., & Fitzgerald, W. (2010).

     Screening for abuse and neglect of people with dementia. Journal of the American

     Geriatrics Society (58), 493-500.

World Health Organization. Mental Health Action Plan (2013-2020). Retrieved July 10, 2014

                  from http://www.who.int/mental_health/action_plan_2013/en/.

Slide Presentation: Hidden Shame

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