In 2002, the Indiana Alzheimer’s Association convened a Working Group of consumers, long- term care professionals, and state agencies to complete a study of aggressive and potentially harmful behavior among long-term care residents pursuant to Senate Concurrent Resolution 18.

A summary of findings presented by the Group to the Governor’s Task Force on Alzheimer’s Disease and Related Senile Dementia follows:

Data is limited on the incidence and degree of harm caused by resident aggression. Indiana may wish to participate in more detailed studies if they are undertaken and funded by the federal government or private sources.

While the Working Group initially focused on aggressive behavior among nursing home residents toward other residents – as charged – it found in literature and practice at least equal concern about aggressive behavior of residents toward staff and family members in a variety of settings including home care, assisted living, adult daycare, and so on.

The problem of aggressive behavior concerns not only family members of victims, but also family members caring for aggressive loved ones, direct care staff, and administrators subject to liability and occupational health and safety (OSHA) issues.

Moreover, while the Working Group initially focused on aggressive behavior among nursing home residents with Alzheimer’s disease and other forms of dementia — as charged — it eventually recognized that aggressive behavior is a problem among a larger pool of nursing home residents, including residents with mental illness, co-occurring mental illness and dementia, physical health problems such as urinary tract infections, pain, and a history of violent or criminal behavior.

Indeed the aggressive Evansville nursing home resident that prompted this study had a violent criminal history as well as alcohol-related dementia.

Consequently when estimating the scope of the problem, the Working Group included information on behaviors as well as diagnoses of dementia. Demographic trends imply that these problems will grow over time as the Indiana population ages. Dementia is more prevalent with age.

The Indiana State Department of Health (ISDH) conducts annual surveys of the 600+ Indiana long-term care facilities and investigates complaints from the public. ISDH reports that:

  • During the most recent six-month period (12-1-01 to 5-16-02) ISDH received 11 complaints from the public of resident-to-resident abuse; if annualized this would equal about 22 complaints of resident-to-resident abuse per year.
  • During the same six-month period long-term care facilities reported to ISDH 571 incidents of resident-to-resident abuse (of about 5,000 incidents reported by long term care facilities); if annualized this would equal about 1,142 incidents (of about 10,000 incidents reported by facilities per year).

The Office of Medicaid Policy and Planning (OMPP) provided very useful data from the Minimum Data Set (MDS), an assessment tool used by long-term care facilities pursuant to federal guidelines.

It shows that aggressive behavior is an important problem but it is not widespread. While 29% of the nursing home population displayed one or more behavioral symptoms (wandering, verbal abuse, physical abuse, inappropriate/disruptive behavior, or resisting care), only 5% (n=2,134) displayed physically aggressive behavior and a lesser proportion displayed physically abusive behavior that was difficult to change (3%)(n=1,276).

Studies in other states indicate that an even smaller portion actually cause harm to others.

MDS data indicate that only a portion of physically aggressive residents are cognitively impaired (60-94% depending on the degree of cognitive impairment counted) and only a portion of these have Alzheimer’s disease.

Studies indicate that aggressive behavior is associated with a variety of factors, including but not limited to dementia:

Factors related to residents include:

  • Previous history of violence/criminal record
  • Untreated pain or other discomfort
  • Medical conditions, such as urinary tract infections
  • Depression, other mental illness, co-occurring disorders
  • Males
  • Mid to late stage Alzheimer’s disease
  • Other forms of dementia not related to Alzheimer’s, such as head injury and alcoholism (younger and stronger residents with other dementias sometimes are placed in special care units for behavior management)
  • Provocation by other residents and caregivers, often during assistance with Activities of Daily Living (ADLs)

Factors related to facilities and the overall delivery system include:

  • Insufficient training on dementia and behavior management for professionals caring for geriatric population (physicians, nurses, aides, etc); insufficient use of behavior management techniques (environmental changes, acceptance)
  • Inadequate use and training in proper use of medications
  • Inadequate supply of caregivers specially trained in geriatrics, ranging from aides to nurses to social workers to physicians; not enough staff
  • Beyond dementia, large numbers of nursing home residents with mental health needs contributing to aggressive behavior
  • Insufficient early assessment and treatment of behavioral and mental health conditions, especially for residents excluded from pre admission screening & resident review (PASRR) due to the federal dementia exclusion
  • Lack of awareness of reimbursement options available in Indiana for mental health services
  • Shortage of geriatric mental health professionals in nursing homes, in private practice, and in community mental health centers
  • Lack of highly specialized “Facilities of Last Resort” for treating behavioral disorders
  • Limitations in reimbursement and regulation of dementia care in special care units
  • Limitations in criminal justice and adult protective service systems

Although several states have implemented models that could be considered in Indiana, generally resident aggression has not been studied in depth or addressed systematically throughout the U.S. National advisors indicated that Indiana may be in the forefront in tackling this issue.

Many of the factors contributing to aggressive behavior can be addressed in order to prevent and minimize aggression. The Indiana Working Group recommends strategies including the following:

  • Make greater use of behavior management techniques to minimize the majority of behavioral symptoms, including physical aggression
  • Provide more training for caregivers (ranging from aides to physicians) in use of behavior management techniques
  • Provide more training in proper treatment protocols including drug treatment
  • Ensure that appropriate medications/protocols are included on the preferred drug list under development by the Drug Utilization Review Board
  • Increase the supply of health professionals with geriatric training, including aides, LPNs, RNs, nurse practitioners, advanced practice nurses, social workers, mental health practitioners, and physicians.
  • Refer human resource needs to the Governor’s Commission on Caregivers for the Continuum, a group already working on human resource issues.
  • Ensure early assessment and treatment of mental health conditions, notably co- occurring dementia and depression; help facilities locate mental health providers.
  • Educate families and providers about the availability of Medicaid, Medicare and other reimbursement for delivering mental health services to long term care residents
  • Expand the pool of mental health professionals, especially those cross trained to provide geriatric services
  • Encourage community mental health centers to provide geriatric services; market centers that currently offer such services
  • Bring care on site rather than move or transfer patients
  • Involve regulators, such as the Indiana State Department of Health, in collaborating on solutions, with ongoing training on dementia, behavior management, documentation needs, treatment/drug protocols, mental health screening, etc.
  • Create several highly specialized nursing “facilities of last resort” to treat the most difficult behaviors (less than 1,000 people) and to provide technical assistance to other care providers.
  • Consider findings from a previous FSSA study acknowledging the need for additional reimbursement of special care units under certain conditions; consider a similar study for all residents with behavior symptoms, with and without dementia.
  • Consider other criminal justice and adult protective services system changes to address violent behavior among elderly persons supervised and not supervised by the courts.

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