The Relationship Between Dementia and Elder Abuse
by Andrew C. Coyne, Ph.D.| Geriatric Times |  |
July/August 2001 | |
Vol. II | |
Issue 4 |
The rapid growth of our nation's older adult population, coupled with heightened awareness of the demands of caregiving for older adults, has focused research and public policy interest on the abuse and neglect of this population (Lachs et al., 1997; Pillemer and Finkelhor, 1988; Tueth, 2000). While to a large extent elder abuse remains a hidden problem, a variety of studies have identified risk factors for abuse of the aged by family members and other caregivers (Dyer et al., 2000; Lachs et al., 1997; Pillemer and Suitor, 1992). Such factors include excessive physical and psychological demands associated with caregiving; advanced age, poor health, physical frailty and impaired activities of daily living (ADL) on the part of the care recipient; alcohol and other substance abuse by caregivers; the caregiver and care recipient living together; caregiver psychopathology; and a family history of abusive behavior. In addition, a number of investigators have found that mental health factors such as depression and dementia increase the risk of abuse within a caregiving relationship (Coyne et al., 1993; Dyer et al., 2000; Paveza et al., 1992).
Abuse, which may be broadly defined to include physical, psychological, sexual and financial maltreatment, may be the result of the actions of others (e.g., caregivers) or may result from neglect by others or by self (Dyer et al., 2000). Prevalence estimates vary widely, ranging from 1% to 12% (Tueth, 2000), although differing estimates may largely be a function of both the definition of abuse employed in a study and the methodology used to measure it.
Dementia as a Risk Factor
Estimates of the prevalence of abuse of older adults suffering from dementia range from 5.4% in a study by Paveza et al. (1992) to 11.9% in a study by Coyne et al. (1993). They far exceed the 1% to 4% prevalence rates typically cited for all elderly adults, cognitively intact as well as demented (Lachs et al., 1997). Several phenomena may be associated with this observation. First, as has been noted by Lachs and colleagues (1997), the impaired decision-making/executive function abilities of elderly adults with dementia may prevent them from caring for themselves or advocating for their own needs. According to Lachs et al., who studied a cohort of elderly adults over a nine-year period, those individuals who display progressive declines in ADL and cognitive functioning over time -- core characteristics of an illness such as Alzheimer's disease (AD) -- are at particular risk.
Behavioral disturbances (Teri et al., 1992), common to many demented elderly, may also play a role in the association between elder abuse and dementia. For example, Paveza et al. (1992) studied violent behavior (including hitting, kicking, biting, punching and making threats) in a sample of 184 patients with AD and their primary caregivers. Among the patient-caregiver dyads studied, 15.8% patient-to-caregiver violence; 5.4% caregiver-to-patient violence; and 3.8% mutually violent behaviors were noted.
In a related study, Hamel et al. (1990) interviewed 208 patient/caregiver dyads, assessing cognitive status of patients, frequency of behavioral problems of patients, extent of caregiver burden and occurrence of patient aggression. Care-givers reported that 57.2% of patients exhibited some form of aggressive behavior. Triggers for such behavior tend to involve the relatively common scenario of a caregiver directing the patient to do something. The extent of cognitive impairment was not found to be a good predictor of aggression, although a premorbid history of displaying aggression was.
In yet another investigation, Pillemer and Suitor (1992) examined the prevalence of violence and violent feelings within a sample of 236 primary caregivers for patients with dementia. Results indicated that 19.5% of caregivers surveyed feared becoming violent while providing care, and 5.9% actually engaged in violent behavior during the course of caregiving. Furthermore, caregivers who feared becoming violent were more likely than those who did not to have had violence directed at them by the care recipient and were more likely to be caring for a family member with disruptive behavior.
Similar data regarding links between dementia and elder abuse were provided by Coyne et al. (1993), who distributed a mail-based questionnaire to 1,000 consecutive callers of a statewide telephone help line dealing with dementia. The 30-item questionnaire was designed to gather information about patient and caregiver demographic characteristics, caregiver burden and depression, and the occurrence of physically abusive behaviors (including pinching, shoving, biting, kicking and striking).
Of 342 caregivers who completed and returned questionnaires, 11.9% indicated that on at least one occasion since becoming a caregiver, they pinched, shoved, bit, kicked or struck their cognitively impaired family member. Furthermore, 33.1% of respondents indicated that the patient in their care directed physical abuse toward them at least once during the course of caregiving.
Both caregivers who reported directing abuse toward care recipients and caregivers who reported being on the receiving end of abuse were found to have been providing more hours of care per day, were caring for more functionally impaired individuals, exhibited higher levels of burden and were more likely to be depressed than those who did not report abusing care recipients or who had not been abused by care recipients.
The observation that aggressive, combative or violent behaviors may accompany AD or other dementias and are especially problematic for family members and professional caregivers alike is not new. As suggested by studies such as those just reviewed, however, there appears to be somewhat of a reciprocal nature of abusive behavior involving dementia patients and their caregivers -- abuse that seems to involve both caregiver-to-patient and patient-to-caregiver aggression. Furthermore, a lack of understanding on the part of caregivers and health care professionals as to how best to manage aggressivity (either behaviorally or pharmacologically) in patients may provoke, rather than limit, such reactions and increase the likelihood of abuse.
A related issue is premorbid histories of family violence. Abuse prior to the onset of dementia appears to be associated with a greater likelihood of abusiveness between caregivers and care recipients once dementia occurs. Although such a cycle of abuse (Steinmetz, 1988) is difficult to break, interventions such as supportive counseling and individual or family psychotherapy for caregivers, respite or in-home care services for patients, and alternative living situations for all parties concerned may be helpful (Burkhart, 1990).
Although interrelationships involving abuse and caregiver burden and depression appear to exist, it remains to be specified whether high levels of burden and depression among caregivers lead to physical abuse or whether the opposite is true and the occurrence of abusive behavior serves to increase burden and depression.
If burden and depression do indeed predispose caregivers to become abusive, then interventions directed toward reducing burden and treating depression should serve to limit abuse. Conversely, if an abusive relationship leads to depression and higher burden in adults providing care, then preventing abuse should improve the mental health of caregivers as well as the quality of life of patients. Additional research is required to determine the nature and direction of the relationships involving these important variables.
Implications for Public Policy
As noted by Wolf and Li (1999), all states have either statutes or legislation that provides for protection of adults unable to advocate for themselves. Such protective service programs typically cover all adults over the age of 18, with aid for elderly adults either incorporated into existing laws or addressed in separate statutes regarding elder abuse. Nationwide, there is a good deal of variation in the scope and focus of these programs, with many differences in purpose, coverage, implementation, confidentiality provisions, reporting procedures and mandated service components.
The inclusion of neglect, self-abuse and self-neglect under the provisions of abuse laws has given rise to confusion as to what constitutes abuse. No matter how defined, however, reporting suspected cases of abuse is mandatory in many states, although variation exists in terms of which professional groups must report abuse and to whom reports are made (e.g., human service agencies, law enforcement agencies). The majority of laws enacted categorize abuse of an adult as either a misdemeanor or a felony. Substantiated reports of abuse are typically referred for prosecution under statutes involving assault or domestic violence. Failure to report abuse also may entail penalties in many states.
Very few elder abuse laws provide for public information or education, although most professionals in the field feel that such efforts are essential to promote awareness of what constitutes abuse, how and where to report it, and what programs and services are available to combat it (Daniels et al., 1989). There are many professionals who feel that the mandate to report suspected cases of abuse can jeopardize their relationship with a client. Physicians, social workers and other health care professionals are concerned that the response from the designated agency may be too punitive. Once brought into play, laws and statutes can lead to a loss of trust on the part of the caregiver, thus destroying the opportunity to work cooperatively with them. There may be a related concern among health care professionals that a mandatory intervention may result in the premature removal of a patient from their home and precipitate a complete cutoff from the caregiver. Such an outcome may not be desirable for either the older individual or the caregiver.
In sum, while the goal of health care and social services professionals is to limit the occurrence of or potential for abuse associated with age-related disability and loss -- both cognitive and other -- the reality is that individuals cannot be protected solely by the enactment of a law or by setting up protective service agencies. One way we can help to make older adults less vulnerable is by providing them with the concrete services necessary to improve the quality of their lives and by providing their caregivers with the support and services required to extend their ability to cope with what can be very difficult burdens. Further research is also needed to refine our understanding of dementia as a risk factor for abuse and to determine how best to help family members cope with the demands of caring for a cognitively impaired relative without resorting to abusive behavior. Finally, continued advocacy is required to ensure that public policy remains focused on the needs of older adults, adults with dementia and adults in danger of abuse.
Dr. Coyne is associate professor of psychiatry in the division of geriatric psychiatry at Robert Wood Johnson Medical School and director of accreditation and standards at University Behavioral Healthcare, both at the University of Medicine and Dentistry of New Jersey.
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