© Geriatric Times. All rights reserved.
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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