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The Societal Challenges of Elder Mistreatment The Aging Population, Alzheimer’s and Other Dementias: Law & Public Policy University of Iowa College of Law March 1, 2012 Robert B. Wallace, MD, MSc University of Iowa College of Public Health Why “Mistreatment,” Not “Abuse?” • Abuse has the connotation of overt violence, but most mistreatment is not physical violence • Complexity of social behavior in the home or institution is more likely to have bi-directional elements • “Abuse” is more likely to be used in legal language; not all mistreatment is a crime Counting “Cases” Requires Definitions: The Phenomena of Elder Mistreatment Physical abuse – Physical force that may result in bodily injury, pain or impairment (includes: hitting, slapping, grabbing) Sexual abuse – Non-consensual contact of any kind with an older person Emotional and psychological abuse – Infliction of anguish, pain or distress Financial exploitation – Illegal/improper use of funds, property or assets Neglect and Self--Neglect – Refusal or failure to fulfill obligations or duties to an elder Three Components of Elder Mistreatment Trust relationship Intent and motivation Harm in some form Some Definitional Issues Assessing intent/ motivation of mistreatment and neglect The complexity of social behavior in trust relationships The (varying) role of legal and administrative definitions Is refusing to provide for someone else a personal crime or a social welfare issue? Iatrogenic events: e.g., inadequate care; restraint or psychotropic medication use; adverse events of appropriate treatment A Focus on the “Self-Neglect” Issue Have the capacities of the victim and caregivers been assessed? The role of disability, cognitive impairment and mental illness Economic means and resources Social access to information/ education Access to helping and clinical services Some Larger Contexts of Elder Mistreatment • All interpersonal violence • Domestic violence • Violence against disabled persons • Management of abusive psychiatric behaviors • Criminal behavior • Social welfare and unmet needs in society • Codes of professional conduct in health and social professionals • Funding and fiscal accessibility in health care • Retirement and pension policies The Spectrum of Domestic Violence Possible Examples of EM In the Institutional Setting? Forcing a resistant elder to wash her hair twice a week? Using chemical restraints (drugs) to improve patient safety? Not honoring holidays of all faiths in a long-term care facility? A capable family member who ignores an elder in a long-term care facility? Not providing a chapel in a long-term care facility? An Example: A Legal Issue Resulting from Elder Abuse Law Under-treatment of pain in clinical setting Abuse or malpractice? – Multiple settings (home care, hospice, nursing homes, hospitals) – Circumventing usual litigation pathways – Lack of training in pain medicine – Reticence to use pain medicine to the fullest The Complexities of Financial Exploitation (J Elder Abuse Neglect 23:304) A Quarter Century of (Little) Epidemiology of Elder Mistreatment: 1975-2000 Not clearly defined: Suspected 1-10% annual prevalence Are rates incidence or prevalence? No national surveys of older persons Relative occurrence of: abuse/ neglect/ exploitation unclear Mode of data collection: social service/ protective agency > clinical > small populations Data Sources for the Study of Elder Mistreatment 1. Formal professional reports: a. Justice system & police (abuse, rape, murder) b. Forensic pathology reports c. Adult Protective Services d. Health professional screening and reporting e. Institutional reports (nursing homes; assisted living) Data Sources for the Epidemiological Study of Elder Mistreatment 2. Screening in clinical (emergency departments, out-patient facilities) 3. Surveys of professionals/ professional records; Emergency rooms; ambulatory care; hospitals; long term care 4. Household surveys (1 or multi-stage): a. Potential victims b. Potential perpetrators c. Biomarkers without questionnaires 5. Citizen reporting Staff Reports of Elder Mistreatment in Iowa (JAMDA DOI: 10.1016/j.jamda.2008.09.005) Work of McCool, Jogerst, et al. Two nursing homes: Questionnaire to 335 staff About 50% participation rate Have you seen/suspected adult abuse? Type of abuse Nursing/admin % Physical abuse 21.4 Sexual abuse 0.0 Emotional abuse 32.1 Financial exploitation 28.6 Other staff % 10.0 0.0 5.0 0.0 Family Members’ Reports of Abuse in Michigan Nursing Homes (J Elder Abuse & Neglect 21:105) A Plea for Citizen Reporting and of Abuse and Its Prevention Step 1: Evaluate the Situation Step 2: Report Abuse Step 3: Understand the Law Step 4: Help Prevent Abuse A Plea for Citizen Reporting of Abuse and Its Prevention -- American Humane Association Step 1: Evaluate the Situation Step 2: Report Animal Abuse Step 3: Understand the Law Step 4: Help Prevent Animal Abuse National Social Health and Aging Program: US National Survey of Mistreatment (JGSS 63B:S248) Validated items: In the past 12 months…. 1. Is there someone who insults you or puts you down? (verbal mistreatment) 2. Is there anyone who has taken your money or your belongings without your okay, or prevented you from getting them even when you ask? (financial mistr.) 3. Is there anyone who hits, kicks, slaps or throws things at you? (physical mistreatment) ……Then asked the relation of the perpetrator National Social Health and Aging Program: US National Survey of Mistreatment (JGSS 63B:S248) First UK Prevalence Survey of Mistreatment (J Elder Abuse & Neglect 21:1) First UK Prevalence Survey of Mistreatment: Annual Prevalence (J Elder Abuse & Neglect 21:1) Consequences of Elder Abuse Physical Health Morbidity (skin wounds; fractures, etc.) Death Dysfunction and disability Psychological Health Depression; fear; guilt; shame; distrust; learned helplessness; withdrawal; post-traumatic stress syndrome Economic Status Loss of resources, possessions Mortality Associated with APS-Identified EM in a Defined Population [Lachs, JAMA 280:428] Risk Factors for Elder Abuse - I Victim dependency/ vulnerability – Poor health; disability/functional impairment; poor personal defenses; poverty; possibly dementing illnesses (resp. to behav.) Gender--women Abuser dependency/deviance – Alcohol and drug abuse; mental illness; poor employment record Social isolation – Abuse undetected; lack of social support to buffer stress Living arrangements – Shared living arrangements; greater opportunity for tension and conflict; long term care facilities Risk Factors for Elder Abuse – II The Disturbing Role of Childhood Experiences Childhood Sexual and Physical Abuse: Risk for Victimization in Adulthood [Lancet 358:450] -Unwanted sexual intercourse < 16 years: -Rape < 16 years -Severe beatings by parents or carers: RR = 3.5 RR = 2.6 RR = 3.6 Childhood Abuse and Attempted Suicide [JAMA 286:3089] -Emotional abuse -Sexual abuse -Battered mother -Mentally ill household member -Parents separated/divorced RR = 5.0 RR = 2.8 RR = 2.6 RR = 3.3 RR = 1.9 Risk/ Vulnerability Model of Self Neglect (J Am Geriatr Soc 56:S271) A Gene Effect on Early Childhood Abuse and Adult Behavior [Science 297:851] “Indicators” of Elder Abuse [The Gerontologist 38:471-480] Abusive Caregiver Characteristics: Alcohol and substance abuse; Mental health problems: depression/ personality disorder; behavioral problems; care-giving reluctance, inexperience Generally poor interpersonal relationships; poor premorbid relations; current marital, family conflict; lack of empathy, understanding of care needs and issues; financially dependent on care The Clinical Recognition of EM: Possible Risk Factors 1. Frequent primary care or ER visits 2. Frequent or unexplained falls 3. Injuries inconsistent with explanations given 4. Evidence of neglect: malnutrition, dehydration, hypotherm. 5. Overmedication: poisoning, stupor 6. Undue physical restraint 7. Inappropriate clothing 8. Inadequate aids and devices 9. Lack of money, possessions; social isolation The Role of Forensic Science: A Midwestern Program Ten-Year Experience Cases over 60 including homicide and neglect Homicide (avg age 72.1) Neglect (avg age 79.7) Gunshot Beating Stabbing Asphyxia 42% 37 19 10 [J. Forensic Sci. 49:122] Pneumonia Sepsis Dehydration Heart disease Fall Undetermined 50% 23 9 9 4 4 The Role of Forensic Science: A Midwestern Program Ten-Year Experience - II “Homicide” cases (N =52) “Neglect” cases (N = 22) Perpetrators Residence Spouse Other family Acquaintance Undeterm. 15% 10 10 73 With family Non-fam. caretaker Alone; non-fam. caretaker Nursing home Unknown 32% 14 9 18 27 Findings from Autopsies of Patients Over 65 Years with Antemortem EM [Legal Medicine 5:7] 15 Causes of Death in a Japanese Prefecture -Subdural hemorrhage(4) -Starvation -Hypothermia -Suffication (4) -Drowning -Arson -Strangulation -Traumatic brain inj. -Traumatic pneumothorax Perpetrators -Sons (7) -Grandson -Son-in-law -Son and Daugh.-in-law -Grandson (2) -Neighbor -Unk. -Others Some Potential “Biomarkers” of Abuse/Neglect Blood biomarkers--examples for consideration: myoglobin; acute phase reactants Patterns of fractures; morphology Morphology and distribution of bruising Quick tests of malnutrition and dehydration Forensic testing—similar to assault and rape investigations Items to Assess Elder Abuse in Epidemiological Surveys [J Appl Gerontol 5:153] - I 1. Has anyone tried to hurt or harm you? 2. Have you been forced to do things you don’t want to do? Please give an example. 3. Have you been threatened with being placed in a nursing home? 4. Has anyone stolen from you or taken your possessions without permission? 5. Has anyone sworn at you or threatened you? Items to Assess Elder Abuse in Epidemiological Surveys [J Appl Gerontol 5:153] - II 6. Has anyone confined you at home against your will? 7. Has anyone refused to provide you with food or with your medications 8. Has anyone beaten or assaulted you? 9. Have you ever signed any documents that you didn’t understand? 10. Are you afraid of anyone in your home? “Brief Self-Report Screening Instrument” [Australian Longitudinal Study on Women’s Health, 2000] 1. Are you afraid of anyone in your family? 2. Has anyone close to you tried to hurt you or harm you recently? 3. Has anyone close to you called you names or put you down or made you feel bad recently? 4. Does someone in your family make you stay in bed or tell you you’re sick when you aren’t? 5. Has anyone forced you to do things you don’t want to do? 6. Has anyone taken things that belong to you without your okay? Some Potential Problems with EM Screening and Diagnostic Instruments in Surveys Items do not assess social/ family context of events Checklist response range excludes many real life situations Perpetrator information often incomplete Not responding to evidence-based practice guidelines Legal, Administrative Challenges to Effective Elder Mistreatment Services Divulging confidential information (e.g., caregiver support session; HIPAA) Different laws in various jurisdictions Inadequate responses/ resources by existing Adult Protective Services Disagreement on the fundamental mistreatment nature in various situations Remedies may make victim’s situation worse Fear of degrading existing elder services An Approach to Management of Confirmed EM [Adapted from Lachs & Pillemer Lancet 364:1263] Confirmed Case Patient Unwilling or Unable to Accept Services Patient Willing to Accept Services Context-specific Intervention -Educate -Implement -Referral Patient Lacks Capacity -Go to official agency -Financial asst. -Conservatorship/ guardianship -Special committee -Courts Patient has Capacity -Educate patient -Provide emergency numbers -Develop safety plan -Develop follow-up plan Examples of Approaches to Managing EM [Adapted from Lachs & Pillemer Lancet 364:1263] Potentially related to caregiver stress: -Respite care -Adult day care -Carer education -Family carers recruit. -Carer psychother. -Reduce carer soc. isol. Longitudinal spousal violence -Marital counseling -Support groups -Shelters -Protection orders -Victim advocacy Policy Approaches to Elder Mistreatment Mandatory Reporting Laws Improve Adult Protective Services: Investigation, assessment, care planning, case monitoring Better Educate Other Care Providers: Social service agencies; hospitals; long-term care insts. Law Enforcement-Criminal Justice System Victim assistance; perpetrator prosecution Comprehensive Community Services Multidisciplinary teams; community coalitions Des Moines Register 26Feb12 Can Primary Elder Mistreatment Be Prevented? Depends on programs and political and administrative will: • Better educating professionals • Increasing community awareness • Educate all older people and the those at risk • Isolate and punish offenders where possible • Protect vulnerable elders better? Very few actual trials of prevention programs