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In Their Own Words: Family Members of Older Adults Who Died After Being Injured

Board Member Eilon Caspi Shares Insight on Resident-to-Resident Incidents in Long-Term Care Homes

By Eilon Caspi, ChangingAging Blogger

View full article here

Throughout the past 15 years, I’ve focused in my work and applied research on improving understanding and the prevention of the common phenomenon of distressing and harmful resident-to-resident interactions in nursing homes and assisted living residences. One early study has found that 294 residents were physically injured during these incidents in nursing homes in Massachusetts in a single year. This means that thousands of nursing home residents may suffer physical injuries during these incidents across the country each year.

I’ve conducted the first U.S. study on this phenomenon in secure dementia care homes of an assisted living residence, the first study in North America on fatal incidents, wrote the first award-winning book on the prevention of these incidents in the context of dementia (Health Professions Press), and co-directed the first documentary film Fighting for Dignity on injurious and deadly incidents (Terra Nova Films; the film has been reviewed in The Gerontologist).

I gave dozens of presentations and webinars on the phenomenon at the local, state, national, and international scientific and professional conferences and forums such as, the National Consumer Voice for Quality Long-Term Care, The Veterans Administration, the American Society on Aging, the Gerontological Society of America, Alzheimer’s Society of Canada, the U.S. Alzheimer’s Association, Long-Term Care Ombudsman programs, State Survey Agencies, and the United Nations.

I’ve also reported on the fact that the Centers for Medicare and Medicaid Services (CMS) does not fully and adequately track this phenomenon in the agency’s F-Tag Coding System despite Government Accountability Office report urging it to do so.

The phenomenon is also not being tracked in the Minimum Data Set 3.0, which is the largest federally-mandated clinical dataset in U.S. nursing homes; a dataset often used in large-scale studies that shed light on risk and protective factors underlying concerning phenomena in nursing homes. The phenomenon is also not being centrally tracked in the assisted living sector despite research indicating that it may be prevalent in this fast-growing, largely for-profit, but weakly regulated care setting.

Left untracked, this phenomenon remains invisible, important opportunities for learning and prevention are lost, and no action is taken at the national policy level to address it.

I have made the case for the need to shift away from blaming older adults living with dementia as the ones responsible for these incidents and encouraged a more holistic and balanced narrative – one that recognizes the phenomenon as stemming largely from inadequate care and neglect of residents’ emotional and other care needs, intersecting with their cognitive processing disabilities. Full recognition of structural conditions driving the development of these episodes is warranted.

In addition, media organizations were recently called to refrain from the common use of labeling and stigmatizing language (such as “aggression,” “abuse,” and “violence”) when reporting on injurious and deadly resident-to-resident incidents in the context of dementia in long-term care homes.

Given the gross lack of attention to this phenomenon, my Editorial has called for research, policy, and prevention. I have also identified the need for a national center dedicated to addressing it.

Despite my ongoing efforts, I have not been successful in encouraging CMS to launch a sorely needed data-driven national campaign to address this phenomenon and keep residents safe.

Most recently, I learned about two deeply traumatic and tragic but preventable deaths.

The first was of an 81-year-old person with Alzheimer’s disease who died after his roommate who had “severe cognitive impairment” put pillow stuffing in his mouth in a nursing home in Rhode Island. The second death was of an older woman with dementia who died after another resident hit her with wire hangers in an assisted living residences in Arizona.

The experiences of families of residents harmed during these incidents have rarely been examined in research. One study has found that families’ experience of this phenomenon is largely normalized in long-term care homes. This finding is consistent with research showing that the phenomenon is “so commonplace that care leaders perceive it as normal and had no strategy for handling it.” It is also consistent with statements made by the Geriatric Long-Term Care Review Committee, which has regularly reviewed these fatal incidents (under Ontario’s Coroner’s Act) for over 30 years.

In the words of professor Gloria Gutman, Simon Fraser University, Vancouver, Canada:

Up to now, the issue has been one of indifference, that these are old people and they’re going to die anyways. Somehow in a collective setting like a nursing home, the abnormal becomes normalized.”

One study reported that resident-to-resident incidents increased the odds of neglect in Michigan nursing homes while another study found that the phenomenon is associated with staff abuse of residents.

To my knowledge, the voice of family members of older adults who died after being injured during these incidents has not been systematically examined to date. To make first steps in bridging this gap, I’ve compiled statements made by 40 families who lost their loved ones as a result of these incidents in United States, Canada, Australia, New Zealand, England, and Scotland.

My examination of these statements sheds a light on the shock, trauma, devastation, frustration, and anger experienced by these families. It also highlights their wish that lessons will be learned from each incident so that no other resident and family will have to go through these horrific experiences.

In the words of a son whose father with Alzheimer’s disease died four days after being pushed by another resident with dementia:

We want to see a solution. We don’t want the death of our father to be in vein.

We want to see something done so this doesn’t happen again.”

To put a human face on these fatal incidents, each family’s statement is accompanied by a photo of their older relative who passed away and/or their grieving family members.

My hope is that learning about these families’ experiences will encourage meaningful practice, research, and policy action to address this phenomenon and enable vulnerable residents to realize their right to live in safe long-term care homes.


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