Long-term care residents living with dementia labeled as “aggressive” when they engage in distressing and harmful “resident-to-resident incidents” are in reality expressing real human needs and frustrations that are not being met by understaffed, undertrained, and inadequately supervised direct care staff members.
A review of research on resident-to-resident incidents in nursing homes supports this argument and indicates that a vast majority of residents with dementia are not inherently “aggressive’ ‘abusive,’ ‘violent’ or “dangerous.” (See the Need-driven Dementia-compromised Behavior Model by Whall & Kolanowski, 2004, and studies by Rosen and colleagues 2008; Sifford, 2010; Pillemer and colleagues, 2012; Snellgrove, Beck, Green, & McSweeney, 2013).
Blaming incidents between residents on dementia runs the risk of stigmatizing this already stigmatized population. It will also create a slippery slope leading to misuse and excessive use of largely ineffective and potentially harmful psychotropic medications. The majority of residents with dementia do not engage in physically “aggressive” or “abusive” behavioral expressions towards others (Volicer, 2008; Moniz-Cook & Clarke, 2013; Somboontanont and colleagues, 2004; Williams and colleagues, 2003; Williams and colleagues, 2009). Indeed, previous research studies have shown that only a small portion of people living in nursing homes and other facilities and those with dementia account for a large portion of resident-to-resident incidents. (Malone, Thompson, & Goodwin, 1993; Almvik, Woods, & Rasmussen, 2007; Bharucha and colleagues, 2008). Labeling a person with dementia as “aggressive” or “abusive” implies that the behavioral expression is intentionally initiated to harm or injure another resident when the majority of individuals with dementia (especially those in mid-to-late stages) do not initiate these behavioral expressions without provocation (Volicer & Hurley, 2003).
Unfortunately, such provocations do occur and harmful resident-to-resident incidents are a prevalent but largely overlooked phenomenon, as shown by a large-scale study in 10 nursing homes in New York state (Lachs and colleagues, 2016). In addition, a Star Tribune Special Report found that “more than 4,000 complaints of resident-to-resident abuse went uninvestigated by the Minnesota Department of Health” during Fiscal Year 2016 (Serres, 2017). Another groundbreaking Harvard study (by Shinoda-Tagawa and colleagues in 2004) found that these incidents led to a substantial number of injuries among nursing home residents in a single year in Massachusetts. In addition, numerous reports in the media indicate that these incidents can result in tragic deaths of residents (Caspi, 2016).
For example, Dwayne E. Walls was a Korean War Veteran, an accomplished investigative journalist, and an editor at The Charlotte Observer. Focusing his work on marginalized populations and issues of social justice, he won numerous journalism awards throughout his career. Later in his life, he developed Alzheimer’s disease and when his wife, Judy, could no longer care for him at home, she moved him to a nursing home in South Carolina. One evening, Dwayne walked into another resident’s bedroom and climbed into his bed. Moments later, the 88-year-old resident whose bed was invaded (he also had dementia) walked into the bedroom, saw him there, and beat him repeatedly with his cane. Dwayne was found severely injured, bleeding, and unconscious in a fetal position on the floor with the man still beating him. Dwayne’s condition deteriorated and he died a week later (Bartelme, 2009).
The Centers for Disease Control and Prevention (CDC) recently recognized the seriousness of this phenomenon: “The amount of attention given to phenomena such as resident-to-resident aggression has increased over the last decade…its occurrence produces injuries and wounds identical to those resulting from abuse and may result when institutions fail to take action to prevent or manage aggression or take actions that are not sufficient to assure resident health and safety” (Hall and colleagues, 2016).
Given the projected growth in the number of people with dementia in the U.S. (from the currently estimated 5.7 million to nearly 14 million by 2050), distressing and harmful incidents between residents are expected to rise in the coming years (Raia, 2006). Despite growing concerns among consumer advocacy organizations, the phenomenon is, surprisingly, not being tracked by the two largest federally mandated clinical and regulatory oversight systems in nursing homes. The Federally mandated process for comprehensive clinical assessment in Medicare or Medicaid certified nursing homes (Minimum Data Set 3.0) does not contain a single question about this phenomenon (Caspi, 2013), and the Centers for Medicare and Medicaid Services (CMS) does not have a unique state survey deficiency citation (F-Tag) for these incidents (Caspi, 2017). Rather, these incidents are frequently issued and practically buried under the broad regulatory groupings of “abuse,” “neglect,” and “accident.” The lack of centralized tracking of these harmful incidents limits important opportunities to prevent them. In the words of David Wright, director, Survey and Certification Group, CMS, “What are we accomplishing if we find the same deficiencies every year? We should not be the historians of bad things that happen in nursing homes. We need to be preventive of bad things from happening… We need more analysis (Wright & Tritz, 2016).
Nursing homes and assisted living residences have strong disincentives to report incidents such as these to their state survey agencies and law enforcement. Reporting can lead to adverse publicity and increased liability. It has, indeed, been difficult to study the more serious forms of these incidents. As a gerontologist, I have had to rely on nontraditional data sources and analytic methods. In a recent exploratory study, published in the Journal of Elder Abuse & Neglect, I examined the circumstances surrounding the death of 105 elders as a result of resident-to-resident incidents in long-term care homes (Caspi, 2018; Link to abstract: https://www.ncbi.nlm.nih.gov/pubmed/29851550) using data from over 150 newspaper articles and dozens of death review records. To my knowledge, it is the first study in the U.S. and Canada on these fatal incidents. To see the main findings of the study in a poster, click here.
Common contributing factors to residents’ engagement in these fatal episodes included invasion into personal space, unwanted entries into one’s bedroom, taking personal belongings from other residents, reaching a breaking point after verbal or behavioral expressions perceived as frustrating, and conflicts between roommates about preferred ways of using the shared bedroom. The majority of these circumstances could no doubt be considered as situational frustrations and unmet human needs.
In my work and research on this phenomenon for over a decade, I have found a clear need for systemic change in recognizing and addressing these incidents, including an urgent need for a staff training program aimed at reducing these incidents (Teresi and colleagues, 2013). As importantly, leading agencies such as CMS and CDC Division of Violence Prevention must develop a national strategy for prevention of these distressing, injurious, and fatal incidents (Caspi, 2015). In addition, the first investigation of this phenomenon by the U.S. Office of Inspector General and U.S. Government Accountability Office is sorely needed (previous investigations on other issues in nursing homes by these agencies such as the misuse of antipsychotic medications have proven instrumental for bringing changes in policy and practice).
A strong commitment by the aforementioned agencies and other stakeholders such as AARP, the Alzheimer’s Association, Argentum (formerly Assisted Living Federation of America), and the Department of Veterans Affairs to addressing this prevalent, harmful but largely hidden phenomenon will increase the likelihood that vulnerable and frail residents – many of whom with dementia – will remain safe. It is their human and Federal right to live in a safe care environment.
Family members who have lost their loved ones as a result of these incidents frequently ask that serious measures will be taken to ensure that these incidents will not occur to other residents. Selected examples of such measures include, among others, sufficient staffing levels at all times, a staff training program in person-directed care practices for individuals living with dementia and serious mental illness (including recognition, prevention, and de-escalation of these incidents in these populations), a robust meaningful engagement program (throughout the day and evening with personally tailored breaks), systematic use of a Behavioral Expressions Log (that enables to identify patterns, unmet human needs, and situational frustrations and triggers of these expressions; the basis for prevention), elder-friendly and dementia-friendly small-scale physical environments that increase (not limit) staff ability to supervise residents effectively and respond to early warning signs of distress in real time, and provision of private bedrooms as a standard practice (bedrooms are residents’ last frontier of privacy). Most importantly, full commitment to the proactive implementation of person-directed approaches such as Dr. Al Power’s Experiential Pathway to Well-Being Model as part of a deep transformation of the care practices and organizational operations will likely reduce the incidence of these distressing and harmful episodes to the minimum possible.
In the words of a son of an 87-year-old resident with Alzheimer’s disease who died after being pushed by another resident, “We want to see a solution. We don’t want the death of our father to be in vain. I want to see something done so this doesn’t happen again.”
References
Almvik, R., Woods, P., & Rasmussen, K. (2007). Assessing risk for imminent violence in the elderly: The Brøset Violence Checklist. International Journal of Geriatric Psychiatry, 22(9), 862–867.
Bartelme, T. (2009). Alzheimer’s and violence. The Post and Courier, May 16, 2009.
Caspi, E. (2013). MDS 3.0: A giant step forward, but what about items on resident-to-resident aggression? Journal of the American Medical Directors Association, 14(8), 624–625.
Bharucha, A. J., Vasilescu, M., Dew, M. A., Begley, A., Stevens, S., Degenholtz, H., & Wactlar, H. (2008). Prevalence of behavioral symptoms: Comparison of the minimum data set assessments with research instruments. Journal of the American Medical Directors Association, 9(4), 244–250.
Caspi, E. (2016). Deaths as a result of resident-to-resident altercations in dementia in long-term care homes: A need for research, policy, and prevention. Journal of the American Medical Directors Association, 17(1), 7-11.
Caspi, E. (2017). A federal survey deficiency citation is needed for resident-to-resident aggression in U.S. nursing homes. Journal of Elder Abuse & Neglect, 29(4), 193–212.
Caspi, E. (2016). Deaths as a result of resident-to-resident altercations in dementia in long-term care homes: A need for research, policy, and prevention. Journal of the American Medical Directors Association, 17(1), 7-11.
Caspi, E. (2018). The circumstances surrounding the death of 105 elders as a result of resident-to-resident incidents in dementia in long-term care homes. Journal of Elder Abuse & Neglect, Online Ahead of Print, May 31, 2018. Link to abstract: https://www.ncbi.nlm.nih.gov/pubmed/29851550
Caspi, E. (2015). Policy Recommendation: The National Center for Prevention of Resident-to-Resident Aggression in Dementia. Journal of the American Medical Directors Association, 16, 527-534.
Hall, J., Karch, D. L., & Crosby, A. (2016). Elder abuse surveillance: Uniform definitions and recommended core data elements. Version 1.0. Atlanta, Georgia: Centers for Disease Control and Prevention.
Lachs, M. S., Teresi, A. T., Ramirez, M., Van Haitsma, K., Silver, S., Eimicke, J. P., Pillemer, K. A. (2016). The prevalence of resident-to-resident elder mistreatment in nursing homes. Annals of Internal Medicine, 165(4), 229–236.
Malone, M. L., Thompson, L., & Goodwin, J. S. (1993). Aggressive behaviors among the institutionalized elderly. Journal of the American Geriatrics Society, 41(8), 853–856.
Moniz-Cook, E., & Clarke, C. (2013). Dementia care: Coping with aggressive behavior. Nursing & Residential Care, 13(2), 86–90.
Pillemer K, Chen EK, Van Haitsma KS, et al. (2012). Resident-to-resident aggression in nursing homes: results from a qualitative event reconstruction study. The Gerontologist, 52(1), 24-33.
Pillemer, K. (2018, June 26). Ending nursing home violence between residents: Prevention, intervention, and advocacy. Webinar presented on June 26, 2018 at the National Long-Term Care Ombudsman Resource Center.
Raia, P. (2006). Avoid resident-to-resident violence in nursing homes. Alzheimer’s Association MA Chapter Newsletter, 24(1), 21–22.
Rosen, T. Lachs, M.S., Bharucha, A.J., Stevens, S.M., Teresi, J.A., Nebres, F., Pillemer, K. (2008). Resident-to-resident aggression in long-term care facilities: Insights from focus groups of nursing home residents and staff. Journal of the American Geriatrics Society, 56(8), 1394-1408.
Serres, C. (2017). When an abuser lives next door. Part 3 in Star Tribune 5-Part Special Report entitled Left to Suffer (Nov 14, 2017). Link: http://www.startribune.com/surging-resident-on-resident-violence-rarely-investigated/450625693/
Shinoda-Tagawa, T., Leonard, R., Pontikas, J., McDonough, J. E., Allen, D., & Dreyer, P. I. (2004). Resident-to-resident violent incidents in nursing homes. Journal of the American Medical Association, 291(5), 591–598.
Sifford-Snellgrove KS, Beck C, Green A, McSweeney JC. (2012). Victim or initiator? Certified nursing assistants’ perceptions of resident characteristics that contribute to resident-to-resident violence in nursing homes. Research in Gerontological Nursing, 5(1), 55-63.
Sifford, K.S. (2010). Caregiver perceptions of unmet needs that lead to resident-to-resident violence involving residents with dementia in nursing homes. Doctoral dissertation, University of Arkansas for Medical Sciences.
Somboontanont, W., Sloane, P. D., Holditch-Davis, D., Hougue, C. C., & Mitchell, C. M. (2004). Assaultive behavior in Alzheimer’s disease: Identifying immediate antecedents during bathing. Journal of Gerontological Nursing, 30(9), 22–29.
Teresi, J. A., Ramirez, M., Ellis, J., Silver, S., Boratgis, G., Kong, J., . . . Lachs, M. (2013). A staff intervention targeting resident-to-resident elder mistreatment (R-REM) in long-term care increased staff knowledge, recognition, and reporting: Results from a cluster randomized trial. International Journal of Nursing Studies, 50, 644–656.
Volicer, L. (2008). Is aggression a common symptom of dementia? Journal of the American Medical Directors Association, 9(7), 532. [Letter to the Editor].
Volicer, L., & Hurley, A. C. (2003). Management of behavioral symptoms in progressive degenerative dementias. The Journals of Gerontology Series A, Biological Sciences and Medical Sciences, 58(9), M837–M845.
Whall, A.L. & Kolanowski, A.M. (2004). The need-driven dementia-compromised behavior model: A framework for understanding the behavioral symptoms of dementia. Aging & Mental Health, 8(2), 106-108.
Williams, K., Kemper, S., & Hummert, M. L. (2003). Improving nursing home communication: An intervention to reduce elderspeak. The Gerontologist, 43, 242–247.
Williams, K. N., Herman, R., Gajewski, B., & Wilson, K. (2009). Elderspeak communication: Impact on dementia care. American Journal of Alzheimer’s Disease & Other Dementias, 24 (1), 11–20.
Wright, D., & Tritz, K. (2016, November 4). Something old, something new: The revised federal nursing home regulations. Plenary session at the 40th Annual Conference of the National Consumer Voice for Quality Long-Term Care, Arlington, Virginia.
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Hello! I’m an AGNG 320 student at the Erickson School of Aging. I agree with this post, I think that the labeling of older adults with dementia as “abusive” or “aggressive” places the blame on them when they are often just reacting to an unmet need. In our class, we learned about the experiential model vs the biomedical model with regard to dementia. The experiential model focuses on the idea that a person with dementia is a unique individual with unique needs and abilities, and that care should focus on each individual’s personal needs and maintaining their autonomy. The biomedical model focuses more on simply managing an undesired behavior for the ease of care staff, such as overuse of antipsychotic drugs. The experiential model sees dementia as a change in a person’s perceptions, as opposed to simply a deterioration. Viewing the care of patients with dementia through the experiential model emphasizes that they are people, not burdens on caregivers. Language is important when discussing incidents like the ones you’ve described, such as the use of “aggressive” to paint the patients in a negative light and deflect fault from the staff. It is better to discuss such things as expressions of unmet needs rather than as behavioral problems or abuse, and then focus on how to meet these needs.
I thought this post was very interesting and I can relate to it a lot after having experience working in a nursing home myself as a CNA. It is very challenging to constantly watch residents and keep them satisfied when you have to care for multiple residents at a time, especially residents with dementia because you’re not always sure what they want. I’ve witnessed some resident to resident abuse because one of them invaded their room or did something they didn’t like. We have to pay very close attention to those that like to roam or don’t know what to do because they can cause trouble without even knowing it. We need to watch this so we can prevent any physical abuse before it starts. It’s a lot easier when the nursing home is fully staffed with people that care and know what they’re doing. I definitely agree that we need to work harder to prevent deaths of residents from physical abusive resident to resident contact.
Hello I am an AGNG 320 student at the Erickson School of Aging and I can’t help but agree with your post! Dementia was one of the topics we discussed in my class and we had to pretend we were a manager in a dementia unit and assess the rise in altercations in the unit. When completing this assignment I was able to look at so many possible factors of the rise in aggression in the patients with dementia like the environment, physical discomfort that can lead to irritation, etc. That being said I completely agree in that many times people often associate aggression with dementia and therefore it becomes an added stigma to what you said an “already stigmatized population”. I never knew that the number of deaths was so high due to resident-to-resident incidents in long-term care homes. It is very sad to see and I agree with this post and stand along with many other people that there needs to be a change, whether it is training staff better, or implementing more person-directed approaches.
This is just my personal belief. You can “study and observe” and promote theory until you are blue in the face. Until you have lived 24/7 for 8 years with a person with dementia you will not come close to what goes on with a dementia patient and their caregivers. I have learned much under these circumstances with both my mother and my husband and I find many times you are barking up the wrong tree.
Jan, can you please explain what you mean by “barking up the wrong tree?”
Thanks.
Sorry for the delay in the response Susan . I am not sure I can articulate my thoughts on this in a comment section but I will say this. The underlying problem lies in the the failure to recognize that both our mainstream attitude toward,not only those with dementia, but the elderly in general and the system we have put in place to house those who either are not wanted by or cannot be cared for by family. We have set up money based corporate homes dictated by rules and laws (protectionism run amuck) and scratch our heads when it isn’t working as planned. Dementia patients are prior humans whom have lost their privacy, dignity, sense of self,and most of all independence. They come with previous personalities both good AND bad, foods they love,personal comforts they have known and memories we can’t see so we assume they are not there. We then either institutionalize them into a life of nothing they have known or leave them,usually by the end, with one family member to care for them. Now we have two socially ostracized fellow human beings and we wonder what went wrong. Con’t in next comment…..
I could write paragraphs of specifics and of how sometimes….often times we hear they can’t help it. Sometimes and somethings they cannot help or control but many times they can learn to control but because they have been stripped of all personal needs,wants and responsibility in the name of being “cared for” they begin acting out as a spoiled child would. More watching and accounting for their every single move probably is the only thing that will work with our current model of how as a nation we treat our elderly.
With 10,000 baby boomers retiring a day I seriously doubt there are enough eyes and hands and counselors theories to oversee them and therefore the current model is not sustainable and has never really worked. Treat people with dementia and their caregivers as humans and not people to be dealt with in a less than human fashion would be a new and welcome beginning. Keep them as a part of society and not hidden away behind closed doors be it the home or the institution. Just my opinion but it comes with some pretty hands on experience.
YES!YES! My dad suffers from dementia and is a home. My mom passed a few months ago very unexpectedly. She moved into the AL part of the home just to be near him. She was totally independent; still driving, etc. The stress I’m sure is what killed her. It’s SO depressing. And it’s one of the “better” places?! I NEVER want to be in one of these places. WE MUST DO BETTER…your explanations are absolutely on point….Sending you much light!