By Eilon Caspi, University of Connecticut [This article first appeared in The Conversation, used with permission]
Frank Piccolo was a beloved high school chemistry teacher in Ontario, Canada, until his retirement in 1998. “His trademark was to greet all of his students at the door at the start of class to make sure everyone felt welcomed there,” wrote a former student. “He had extensive knowledge of his subject matter, passion for his craft, and empathy for his students.”
But after Frank’s retirement, he developed dementia. When his condition declined, his family moved him to a Toronto nursing home. One evening in 2012, another resident – a woman with dementia – entered Frank’s bedroom. She hit Frank repeatedly in the head and face with a wooden activity board. Staff found Frank slumped over in his wheelchair, drenched in blood. He died three months later.
The Ontario Ministry of Health and Long-Term Care investigated. It found that the woman had a history of pushing, hitting and throwing objects at staff and other residents. But the nursing home didn’t address the woman’s behavioral expressions for weeks before the attack on Piccolo, the agency determined. “There were no interventions implemented, no strategies developed,” the report stated.
As a gerontologist and dementia behavior specialist, I’ve written a book on preventing these incidents. I also co-directed, with dementia care expert Judy Berry, a documentary on the phenomenon called “Fighting for Dignity.” The film sheds light on the emotional trauma experienced by family members of residents harmed during these episodes in U.S. long-term care homes.
Reporting and stigmatizing
Resident-to-resident incidents are defined by researchers as “negative, aggressive and intrusive verbal, physical, material and sexual interactions between residents” that can cause “psychological distress and physical harm in the recipient.”
These incidents are prevalent in U.S. nursing homes. But they are largely overlooked by the Centers for Medicare and Medicaid Services, the federal agency overseeing care in approximately 15,000 nursing homes across the country. Consequently, such incidents remain untracked, understudied and largely unaddressed.
These interactions don’t just result in injuries and deaths among residents. They also leave behind devastated families who then must fight for answers and accountability from nursing homes.
Making matters worse, government reports, research studies and media coverage commonly describe these episodes with words that stigmatize people with dementia. Researchers, public officials and journalists tend to label the incidents as “abuse,” “violence” and “aggression.” They call a resident involved in an incident a “perpetrator” or an “aggressor.” News outlets described the attack on Piccolo by the woman with dementia as “aggressive” or “violent.” And when reporting on the phenomenon in Canada, the Toronto Star called it “abuse.”
Getting to the root of the real problem
Most incidents, however, do not constitute abuse. A growing body of evidence suggests the true cause of these injuries and deaths is inadequate care and neglect on the part of care homes. Specifically, there is a lack of the specialized care that people with dementia require.
Two of every three residents involved in these incidents have dementia. One study found that the rate of these episodes was nearly three times higher in dementia care homes than in other long-term care homes. A recent study also found an association between residency in a dementia care home and higher rates of injurious or fatal interactions between residents.
But for these residents, the conflicts occur mostly when their emotional, medical and other needs are not met. When they reach a breaking point in frustration related to the unmet need, they may push or hit another resident. My research in the U.S. and Canada has shown that “push-fall” episodes constitute nearly half of fatal incidents.
Another U.S. study found that as residents’ cognitive functioning declined, they faced a greater likelihood of injury in these incidents. Those with advanced dementia were more susceptible to inadvertently “getting in harm’s way,” by saying or doing things that trigger angry reactions in other residents.
The Centers for Disease Control and Prevention has stated that what it calls “aggression” between residents is not abuse. Instead, the CDC noted that these episodes may result when care homes fail to prevent them by taking adequate action. And a study on fatal incidents in U.S. nursing homes has shown that many residents were “deemed to lack cognitive capacity to be held accountable for their actions.” https://www.youtube.com/embed/gk5iEo-s_6M?wmode=transparent&start=0 An undercover yearlong investigation into nursing homes in Ontario, Canada, revealed shocking instances of abuse and neglect by staff members.
How incidents often occur
In one study, researchers examined situational triggers among residents with cognitive impairments. The strongest triggers involved personal space and possessions. Examples include taking or touching a resident’s belongings or food, or unwanted entries into their bedroom or bathroom. The most prevalent triggering event was someone being too close to a resident’s body.
That study also found that crowded spaces and interpersonal stressors, such as two residents claiming the same dining room seat, could lead to these episodes. My own work and a different Canadian study came to similar conclusions.
Other research shows that when residents are bored or lack meaningful activity, they become involved in harmful interactions. Evenings and weekends can be particularly dangerous, with fewer organized activities and fewer staff members and managers present. Conflicts between roommates are also common and harmful.
A growing body of research suggests that most incidents between residents are preventable. A major risk factor, for example, is lack of adequate supervision, which often occurs when staff are assigned to caring for too many residents with dementia. One U.S. study found that higher caseloads among nurses’ aides were associated with higher incident rates.
And with poor staffing levels in up to half of U.S. nursing homes, staff members do not witness many incidents. In fact, one study found that staff members missed the majority of unwanted bedroom entries by residents with severe dementia.
Residents with dementia are not to blame
In most of these situations, the person with dementia does not intend to injure or kill another resident. Individuals with dementia live with a serious cognitive disability. And they often must do it while being forced to share small living spaces with many other residents.
Their behavioral expressions are often attempts to cope with frustrating and frightening situations in their social and physical environments. They are typically the result of unmet human needs paired with cognitive processing limitations.
Understanding the role of dementia is important. But seeing a resident’s brain disease as the main cause of incidents is inaccurate and unhelpful. That view ignores external factors that can lead to these incidents but are outside of the residents’ control.
Frank’s wife, Theresa, didn’t blame the woman who injured her husband or the staff. She blamed the for-profit company operating the nursing home. Despite its revenue of $2 billion in the year before the incident, it failed in its “duty to protect” Piccolo. “They did not keep my husband safe as they are required to do,” she said.
Eilon Caspi, Assistant Research Professor of Health, Intervention, and Policy, University of Connecticut
This article is republished from The Conversation under a Creative Commons license. Read the original article.