Recognizing Elder Mistreatment

1. Recognizing Elder Mistreatment Debra L. Bynum, MD Division of Geriatric Medicine University of North Carolina at Chapel Hill With Support from the Donald W. Reynolds Foundation May 2007

2. Learning Objectives • Describe the types of elder mistreatment. • Relate the factors that put older adults at risk for mistreatment. • Screen for elder mistreatment. • Know how to report suspected elder mistreatment.

3. Goals • Identify incidences of elder mistreatment. • Protect older adults from mistreatment. • Give health care providers information to deal more effectively with elder mistreatment.

4. Cases Definition Prevalence and Risk Factors Screening Identifying Indicators of Mistreatment Focus Points from Cases Financial Exploitation Caregiver Neglect Determination of Capacity Self-Neglect Mistreatment in Institutions Reporting Resources Outline

5. Case 1 • An 86-year-old man with renal insufficiency, diabetes, vascular disease, peripheral neuropathy was readmitted with recurrent nausea, vomiting, abdominal pain, dehydration and renal failure. • His son is concerned that patient’s new wife, 35 years younger, is neglecting her husband and is “in it for the money” • At baseline, the patient was oriented, appropriate and felt to have capacity to make decisions regarding living situation and medical care. • Could this be arsenic poisoning?

6. Case 1 The more pertinent questions: • Is this elder mistreatment? • What would you do?

7. Case 2 • An 83-year-old woman is admitted with DVT; she is disheveled and smells of urine and feces. • The worried daughter calls. APS had previously been to the house and found it filthy, filled with cats and 20 years worth of magazines. She has had a long history of medical noncompliance and has “fired” multiple home health nurses and physicians. • She has always been a quiet, secluded, and suspicious person. • What would you do? • How does the determination of her capacity influence the outcome of this case?

8. Case 3 • A 95-year-old man is admitted from a skilled nursing facility with dehydration, hypernatremia (Na 178), confusion, and a large decubitus ulcer. • His family is concerned that he has had several weeks of declining intake and feel he is being neglected • What are some markers of neglect? • Is this reportable? To whom? • What resources are available to the family?

9. Case 4 • A 75-year-old woman with severe dementia is brought to the ED by police after being found in the street, wandering and confused. • She lives in HER house with her grandson. She previously had home health, but they refused to continue coming (?drug dealing at the house?) The grandson often leaves her alone, and the house is in disrepair with recent discontinuation of electrical services. • Should the grandson continue to have power of attorney? • Is this elder mistreatment?

10. Elder Mistreatment: Background • “Granny Battering” was first described in BMJ 1975. • There has been increased awareness over last 20 years following interest in child and partner abuse. • Differing definitions, poor detection, under-reporting make exact extent unknown. • It is estimated that 5 - 10% of elderly are abused yearly (probably an underestimate).

11. Definition Elder mistreatment refers to intentional actions that cause harm or create a serious risk of harm (whether or not harm is intended) to a vulnerable elder by a caregiver or other persons who stand in a trust relationship to the elder or failure by a caregiver to satisfy the elder’s basic needs or protect the elder from harm. Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America (2003). National Research Council

12. Abuse Physical Emotional/psychological Sexual Isolation Restraints Financial Violation of rights (personal liberty, personal property, privacy, voting, speech) Neglect Inadequate provision of physical needs, hygiene, supervision, medical services Self-Neglect DomesticViolence Elder Mistreatment

13. What Are the Numbers? No one knows… • Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America : “Between one and two million Americans age 65 or older have been injured, exploited, or otherwise mistreated by someone on whom they depend for care or protection.” • Only 1 of every 5 to 14 cases is known. Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America (2002) Committee on National Statistics (CNSTAT) - http://www.nap.edu/openbook/0309084342/html/ National Incidence and Prevalence Study (NIPS) (1998) http://www.aoa.gov/eldfam/Elder_Rights/Elder_Abuse/Elder_Abuse.asp

14. The Numbers • Most studies exclude financial and self-neglect. • Self-neglect accounts for majority of APS referrals! • National Elder Abuse Incidence Study • Noninstitutional • Reports to APS • Neglect most common (55% cases) • Caregiver neglect: 13%

15. The Numbers in North Carolina? • The best data available refer to disabled adults. • NC’s Department of Health and Human Services reports data from counties’ Departments of Social Services: 2000–2001. • 9,142 disabled adults were served. • 52% (4,754) were between the ages of 60–84 and 19% (1,737) were 85 years old and older. • Mistreatment wasconfirmed in 36% (3,291). • The need for protective services was substantiated for 23% (2,103). http://www.dhhs.state.nc.us/aging/adultsvcs/apsr2002.pdf

16. Risk Factors • Older age • Lack of access to resources • Low income • Social isolation • Low level of education • Functional debility • Substance abuse (by older person or caregiver) • Psychological disorders • History of family violence • Caregiver burnout and frustration • Cognitive impairment

17. High Risk • Cognitive impairment with high physical needs • Difficult behavior with dementia • Social isolation

18. Who are the Abusers? • Adult children are most often the abusers. Spouses and other family members also mistreat older adults. Almost 90% of abusers arefamily members. • Paid caregivers who come into the home are less likely to mistreat or be abusers than family members. • Older adults may be mistreated in assisted living facilities, rest homes, and skilled nursing facilities Elder Abuse Awareness Kit, http://www.elderabusecenter.org/pdf/basics/speakers.pdf

19. Cycle of Abuse • Increasing recognition of cycle of domestic and family violence and abuse • Increasing partner/domestic abuse in older persons • Issues of neglect of elders who were at one time the abusers of their current caretakers (adult children or spouses)

20. Barriers to Reporting • Cognitive impairment • Fear of violence/retaliation • Embarrassment • Fear of placement worse than fear of abuse

21. Barriers to Reporting • Friends/family may not be sure of what is happening or trained to know what is suspicious • “Not my business…” • Do not want to cause trouble • Fear retaliation • Believe that their actions will not make things better

22. What Questions to Ask? • Do you feel safe at home? • How do you and _____ get along? • Is ______ taking good care of you? • Do you have frequent disagreements? • What happens when you disagree? • Are you yelled at? • Has anyone ever scolded or threatened you? • Are you afraid of anyone at home? • Have you gone without food or medicine? • Have you ever had your glasses or hearing aid taken from you? • Has anyone ever hurt you? Slapped, punched or kicked you? • Has anyone ever touched you without your permission? • Has anyone every made you do things you did not want to do? • Has anyone taken things away from you without asking? • Are you made to stay in your room?

23. Screening Instruments • Team from McMaster University identified 90 articles that discussed risk factors. • 18 included screening tool, only 6 provided data on reliability and validity. • First 3 done in the late 1980s. The last 3 carried out as part of one Canadian study of risk factors in the late 1990s. Fulmer & O'Malley, 1987; Hamilton, 1989; Hwalek & Sengstock, 1986; Reis & Nahmiash, 1995a; Reis & Nahmiash, 1995b; and Reis & Nahmiash, 1998, Shott et al., 1999.

24. Hwalek-Sengstock Elder Abuse Screening Test (H-S/EAST) • 6 questions discriminated effectively (Neale et al., 1991): • Has anyone close to you tried to hurt or harm you recently? • Do you feel uncomfortable with anyone in your family? • Does anyone tell you that you give them too much trouble? • Has anyone forced you to do things that you didn't want to do? • Do you feel that nobody wants you around? • Who makes decisions about your life... like how you should live or where you should live?

25. Women’s Health Survey • 15-item H-S/EAST screening tool adjusted, reliability/validity analyzed in sample of older Australian women (n=12,340) • 6-item scale: • Are you afraid of anyone in your family? • Has anyone close to you tried to hurt or harm you ? • Has anyone close to you called you names or put you down or made you feel bad recently? • Does someone in your family make you stay in bed or tell you you're sick when you know you aren't? • Has anyone forced you to do things you didn't want to? • Has anyone taken things that belong to you without your OK?

26. Should We Screen? • Controversial Report from US Preventive Services Task Force • Insufficient evidence to recommend for or against routine screening • Lack of data does not mean lack of benefit. • Does not address issue of asking questions in suspected cases

27. Potential Indicators of Mistreatment

28. Traumatic alopecia Poor oral hygiene Welts, bite marks, burns Decubitus ulcers Suspicious bruising (finger marks on arms or legs) Fractures Fecal impaction Weight loss Dehydration Hypernatremia Poor hygiene Physical Abuse or Neglect

29. Dehydration and Hypernatremia • Hypernatremic dehydration in nursing home patients is an indicator of neglect.

30. Sexual Abuse • Physical signs, e.g., bruises, pain, or itching on genital area or breasts • Sexually transmitted disease diagnosis • Change in older adult's behavior or mood that is unexplained • Fear of physical exam of genital area

31. Emotional or Psychological Abuse • Withdrawal • Unexplained change in mood • Refusal of caregiver to leave

32. Older adult unaware of income or financial matters Important papers and credit cards missing Bills not paid Funds not spent on older adult’s needs New will Unusual banking activity Adding caregiver’s name to account Older adult signing on caregiver’s loan Checks made to “cash” frequently Signature not that of older adult Activity older adult doesn’t understand or know about Frequent expensive gifts from older adult to caregiver Financial Abuse

33. Financial Abuse • Elder has funds, property, house that are being used • Older adult may have fear of being “placed” in nursing home • Often most challenging to “prove”

34. Mistreatment in Institutions • Great potential for abuse and neglect in assisted living and skilled nursing facilities. • Study of 600 facilities: 40% surveyed reported committing at least one psychologically abusive act within the past year; 10% admitted to act of physical abuse. • Markers of potential neglect: decubitus ulcers, wandering out of facility, dehydration, weight loss, poor oral care.

35. Back to the Cases: Case 1 • An 86-year-old man with renal insufficiency, diabetes, vascular disease, peripheral neuropathy was readmitted with recurrent nausea, vomiting, abdominal pain, dehydration and renal failure. • His son is concerned that patient’s new wife, 35 years younger, is neglecting her husband and is “in it for the money” • At baseline, the patient was oriented, appropriate and felt to have capacity to make decisions regarding living situation and medical care.

36. Case 1 • Difficult question of possible mistreatment • Potential neglect • Potential financial exploitation • Issue of capacity on part of the patient • Protection vs autonomy

37. Case 2 • An 83-year-old woman is admitted with DVT; she is disheveled and smells of urine and feces. • The worried daughter calls. APS had previously been to the house and found it filthy, filled with cats and 20 years worth of magazines. She has had a long history of medical noncompliance and has “fired” multiple home health nurses and physicians. • She has always been a quiet, secluded, and suspicious person.

38. Case 2: Self-Neglect • Capacity vs autonomy and self-determination • Capacity: • Specific to each decision • Consistency • Understanding consequences and ability to express this • Express reasoning behind decision • Does not have to match common values • Cultural competency and understanding • Competency: legal term • Lack of competency necessitates assignment of guardian

39. Self-Neglect • Diogenes Syndrome • Severe self-neglect • Normal cognition, normal MMSE • Theories • Extreme/continuation of lifelong “personality” trait or disorder? • Frontal lobe process leading to poor judgment

40. More on Diogenes Syndrome • Characteristics: • Hoarding, collecting • Social withdrawal and isolation • Refusal of support • Often judged to have “capacity” given normal orientation and cognitive testing • Do they “lack of capacity to care for self?” • Most challenging cases for APS

41. Diogenes Syndrome and Self-Neglect • Why do these fall through the cracks? • APS relies on elder being “disabled”, meaning lacking capacity or competency, in order to get involved. • If elder is not cognitively impaired, at what point can they be considered harmful to themselves?

42. Case 3 • A 95-year-old man is admitted from a skilled nursing facility with dehydration, hypernatremia (Na 178), confusion, and a large decubitus ulcer. • His family is concerned that he has had several weeks of declining intake and feel he is being neglected.

43. Case 3: The Nursing Home • Increased awareness of neglect and abuse in skilled nursing facilities. • Families can look up records of facilities. • Things to look for: decubitus ulcers, dehydration, mouth care, use of restraints. • Not all ulcers and cases of dehydration are due to neglect. • Role of the ombudsman • Report to DFS

44. Case 4… • A 75-year-old woman with severe dementia is brought to the ED by police after being found in the street, wandering and confused. • She lives in HER house with her grandson. She previously had home health, but they refused to continue coming (?drug dealing at the house?) The grandson often leaves her alone, and the house is in disrepair with recent discontinuation of electrical services.

45. Case 4: Exploitation and Neglect • The most difficult to prove • If guardian is suspected to be abusing/neglecting elder, process to suspend their power of attorney • Physicians and caretakers must certify lack of capacity for competency hearing; then new guardian would be assigned (family member or person assigned by APS).

46. What to Do…

47. If You Suspect Mistreatment • Document what the older adult says. Use direct quotes. • Record any statements made by others to explain or support the older adult's statements. • Determine and record the older adult's cognitive status, mood, and capacity to make decisions. • Photograph visual evidence after getting written permission to do so.

48. If You Suspect…Report If you believe an older, disabled adult is being mistreated, report to the local county Department of Social Services (DSS) Adult Protective Services (APS). • Contact information is available online at http://www.dhhs.state.nc.us/dss/local/index.htm A printed directory is available. • County DSS are required to evaluate reported allegations of the need for Adult Protective Services within 72 hours. • DSS must “confirm” and “substantiate” reports before protective services are given.

49. The Law in North Carolina • State laws govern the mistreatment of adults; some states have specific statutes that address older adults. • North Carolina's law does not specify protection to “older” adults. It protects the “disabled adult.” • North Carolina Statute Article 6, 108A-99-111 is the Protection of the Abused, Neglected, or Exploited Disabled Adult Act. You can find this law at: http://www.ncleg.net/EnactedLegislation/Statutes/HTML/ByArticle/Chapter_108A/Article_6.html

50. NC Law: Current and Future • APS intervention currently only for “disabled adults” • Archaic definition of “disabled”; • Reliance upon lack of “capacity”, usually as a result of dementia • Work on changing law to ALL vulnerable elders • Recognition that elders who may be “competent” can still be vulnerable with reliance on caregiver • Pilot project summer 2007 for APS