Introduction

Elder mistreatment encompasses activities that include abuse, neglect, and exploitation of older adults. Although we know that it is a common and disturbing phenomenon, there is much we don’t know. For example, there is a lack of agreement on terms: is it elder abuse or mistreatment of older adults? Do we call those who have been abused/mistreated victims or survivors? Do we call those who do the abuse stressed caregivers or perpetrators? One of the challenges for clinicians when confronted with this topic is in understanding the myriad of terms, types, contexts, systems, and people involved in this pervasive problem.

Elder mistreatment includes physical, sexual, or psychological abuse, as well as neglect, abandonment, and financial exploitation. It occurs in the context of a relationship in which there is an expectation of trust. Thus there are many categories of abusers: family members, paid caregivers, service providers, and others. A landmark report from the National Academies entitled Elder Mistreatment: Abuse, Neglect, and Exploitation in an Aging America was published in 2003.[1] This report stressed the importance of developing operational definitions in the context of research and we clearly need to do the same in the context of clinical practice. A good working definition is provided by the United States Department of Health and Human Services: “any knowing, intentional, or negligent act by a caregiver or any other person that causes harm or a serious risk of harm to a vulnerable adult.”[2]

The breadth and depth of elder abuse

The statistics on elder abuse are sobering. Two national studies showed high rates of abuse in community-dwelling elders (i.e., they did not live in residential or licensed facilities). Acierno et al. conducted a national study of 5,777 community-residing adults aged 60 and older who had the capacity to consent and participate in a telephone interview. They found that 11.4% of respondents had experienced emotional, physical, or sexual abuse or potential neglect in the past year.[3] Prevalence rates within each category of abuse were 4.6% for emotional abuse, 1.6% for physical abuse, 0.6% for sexual abuse, 5.1% for potential neglect, and 5.2% for current financial abuse by a family member. The study’s authors found that low social support significantly increased the risk for nearly all types of reported mistreatment.

Another national study, by Laumann and colleagues, looked at more than 3,000 community-dwelling elders between the ages of 57 and 85 years who had the capacity to give consent.[4] The instruments were administered by in-home interviewers or paper surveys that the participants filled out on their own. Although no formal cognitive testing was done, those who were deemed too impaired to give consent were excluded from the study. The past year prevalence rates of abuse were as follows: 9% verbal mistreatment, 3.5% financial mistreatment, and 0.2% physical mistreatment by a family member.

Studies that have specifically looked at abuse in minority communities also show alarmingly high rates of abuse and neglect. A study of Latino adults (n = 198) aged 66 and older living in low-income communities in the Los Angeles area found that 40.4% had experienced at least one type of abuse or neglect within the preceding year, with 21% reporting multiple types.[5] Door-to-door interviews were conducted by promotores, and all of the participants had capacity to provide their own consent. Of the respondents, 25% reported psychological abuse, 10.7% physical abuse, 9% sexual abuse, 16.7% financial exploitation, and 11.7% caregiver neglect. According to Dong and colleagues, elder mistreatment was found in 15.0% of community-dwelling US Chinese older adults (n = 3,159) aged 60 and above in the Greater Chicago area.[6] Positive correlates included poorer overall health status, poorer quality of life, worsening health status over the past year, higher levels of education, and fewer children.

It is also of note that underreporting is a significant problem. The New York State Elder Abuse Prevalence Study found that the actual rate of abuse was nearly 24 times greater than the number reported to agencies such as Adult Protective Services.[7] Physicians are among the least likely people to make a report, even though we are mandated reporters in most states. A report based on analysis of a 2004 survey of Adult Protective Services agencies revealed that only 1.4% of abuse reports were from physicians.[8]

Why are older adults vulnerable to becoming victims?

There is good reason to consider elder abuse as its own special category in the spectrum of family violence. The normal and common changes that accompany aging create a new and special vulnerability to becoming victimized. These changes also mask and mimic markers of elder abuse, thus creating a conundrum: many injuries can be explained by innocent causes. For example, older adults bruise more easily due to thinning epidermis, capillary fragility and less subcutaneous fat. An older adult might also be on medications such as aspirin or warfarin which inhibit the coagulation pathway. It is then unsurprising when an elder appears in the office with bruising on the forearms or shins. However, one should ask questions if there are bruises in locations such as the upper arm, head, neck, or torso.[9] A simple “What caused you to have a bruise on your shoulder?” is a worthwhile question. Although people tend not to remember the cause of bruises in common locations, the clinician should expect to hear a reasonable explanation to understand why a bruise appeared in an unusual location. If the answer does not make sense, perhaps because it does not correspond with the location of the bruise, a further question such as “Has anyone hit you or treated you roughly?” should be asked.

Mrs. T comes into your office for a follow-up on her hypertension, atrial fibrillation, and diabetes (the HbA1c from two days prior was 8.9; her office blood pressure is 178/82 and heart rate is 80/min). She is on enalapril/hydrochlorothiazide, warfarin, and metformin. You, her primary health care provider, have known her for eight years, and in the past few months her previously well-controlled blood pressure and diabetes have been difficult to control. Today she has bruises on her left cheek, just in front of her ear, and on the right upper shoulder/base of the neck. You ask her how she got the bruises and she said, “I fell when I got up to go the bathroom in the middle of the night. You know me … I bruise so easily! Next time I’ll pay more attention and make sure I put a light on.” You ask a follow-up question: “Mrs. T, I’m concerned because it’s unusual to get a bruise on your head and neck from a fall such as this. I know there’s been a lot of stress at home. Is anyone hurting you?” She breaks down in tears, explaining that her son moved in about six months ago and has been taking her money, first with her hesitating permission and now with impunity. More recently he has been physically threatening and two days ago, when he was inebriated, he grabbed her shoulder and hit her on the side of her face.

Had the clinician accepted her initial answer and not asked a follow-up question, the abuse would have likely continued and escalated. In fact, there are many examples of abuse that have been ongoing for months or years that, with the benefit of hindsight, reveal missed opportunities for intervention by medical providers.

Mrs. P is a 76-year-old woman with moderately advanced Parkinson’s disease, poor vision, and diabetes. Her 51-year-old son lives with her because he was recently laid off and agreed to take on the role of caregiver as she needs an increasing amount of help with instrumental activities of daily living and activities of daily living. She had several falls in a six-month period and was noted to have bruises in many locations on her trunk and face. She was seen several times by her primary care doctor who accepted the idea that people with Parkinson’s disease are likely to fall and never questioned her about the falls or her injuries. At the time of her hip fracture, it was learned that her son had been shoving her in anger and occasionally punching her if she asked for help at an inopportune time. This had been going on for the past eight months. She never told her doctor because “he never asked me.”

Dementia and abuse

Cognitive changes create a special vulnerability to becoming victimized. We know that people with dementia are at significantly higher risk of being abused, yet we also understand that caregivers are often in difficult and demanding situations.[10, 11] For the person with dementia, however, abuse is abuse. The cause or motivation matters little.

Mr. J is an 86-year-old man with mild-to-moderate Alzheimer’s disease. As it became unsafe for him to continue living independently, he was welcomed into the home of his son and daughter-in-law and their three children, aged 14–19 years. He had always been a fastidious person, but after the first few months of the move was often disheveled and unconcerned. When the family encouraged him to bathe, he would get angry and yell at them. They yelled back. When they tried to help him get undressed and put on clean clothes, he would resist their efforts and sometimes hit them. They hit him back.

This is a scenario that many of us have seen and understand. Despite our empathy and appreciation for what the family is trying to do with the best of intentions, this is still elder abuse. As we have learned from colleagues in domestic violence, it can be easy to blame the victim and thus miss our opportunity to protect and intervene. The fact that an older adult may be “difficult” or “hard to take care of” or “demanding” does not excuse an abusive act. It does, however, allow us to understand the dynamics and provide appropriate support for both the elder and the family. Asking questions at an early stage of this scenario could have allowed a clinician to identify the stress and anger that was brewing for the family.

There are some characteristics known to be associated with abuse of people with dementia. Recognizing these characteristics can help the clinician identify high-risk situations and prevent abuse or at least intervene at an early stage. People with dementia who have agitated, combative, resistive behaviors are more likely to be physically abused. Caregivers with mental health problems such as depression, anxiety, or substance abuse disorders are more likely to abuse. Those who have a higher perceived burden associated with their caregiving activity are also more likely to be abusive. The context in which the relationship exists is also important. For example, those who are socially isolated and/or have poor social support are more likely to be in an abusive relationship.

Mrs. U’s three adult children (two daughters, one son) had been observing her memory problems for about a year. They had escalating concerns and brought her to the office for an assessment. In the past few months, she had two minor car accidents, gotten lost when walking in her neighborhood, and put a paper plate on top of the gas stove to heat a meal, which started a kitchen fire that was quickly extinguished by her visiting son. A thorough examination by an interdisciplinary team resulted in a diagnosis of probable Alzheimer’s disease. At the time of the family conference, the psychologist and physician assistant explained the diagnosis to the family and discussed prognosis and the need for more assistance. Concerns regarding her behaviors, which included agitation especially when trying to convince/help her get into clean clothes, and a volatile temper, were discussed. The family explained that they had discussed some of these issues and had an idea: one of the daughters volunteered to move in with mom. She didn’t work, was unmarried, and had no children. Further inquiry about this 42-year-old daughter revealed that she has bipolar disorder, which has been adequately treated for a few months. She has a long history of cyclical problems related to going on and off her medications. Knowing that the equation of a daughter with poorly controlled bipolar illness plus a demented mother with agitation could add up to an abusive situation, the team explained that it would be best to work on an alternate plan. The social worker provided counseling and assistance with the alternatives, and a high-risk-for-abuse situation was avoided.

Two studies, one in the United Kingdom and one in the United States, on abuse of community-dwelling dyads of people with dementia and their caregivers showed remarkably similar results. In interviews of 220 caregivers of people with dementia in the United Kingdom, Cooper et al. found that 52% reported some type of abusive behavior had ever occurred.[10] When asked specifically about the preceding 3 months, 34% reported abusive behavior toward the person with dementia. In the United States, Wiglesworth et al. studied a convenience sample of community-living adults (n = 129) aged 50 and older with a diagnosis of Alzheimer’s disease or a related dementia and an adult caregiver willing to participate in the research.[11] Home interviews were conducted with caregiver-care recipient dyads and an expert panel made a determination about mistreatment of the care recipient. The study authors found that 47.3% had been mistreated and of these respondents, 88.5% experienced psychological abuse, 19.7% physical abuse, and 9.5% neglect. The caregiver’s anxiety, depressive symptoms, social contacts, perceived burden, emotional status, and role limitations due to emotional problems were associated with different kinds and combinations of mistreatment types. The care recipient’s psychological aggression and physical assault behaviors were also associated with mistreatment. Importantly, the study authors also concluded that caregivers of patients with dementia would admit to mistreatment when asked. This last finding is of particular relevance to clinicians and shows us that caregivers can and should be asked about being abusive to the person with dementia.

The fact that a primary care clinician often has a longstanding relationship with the family makes it even more important for clinicians to routinely ask caregivers about abuse. Ask in a way that is empathetic, straightforward, and clear: “I see that this is a very difficult situation for you. Many people in your shoes feel overwhelmed and end up doing things they wouldn’t normally do. Have you ever hit your mother, or are you worried that you might?”