Sponsorships opportunities for projects led by Dementia Behavior Consulting LLC and The International Center for Prevention of Distressing and Harmful Resident-to-Resident Interactions in Dementia in Long-Term Care Homes
Theresa Piccolo, Toronto, Canada
1. Steve Orfield (Orfield Labs Inc, Minneapolis, MN)
2. Theresa Piccolo, Toronto, Canada
During the past 10 years, I engaged in various projects and initiatives related to prevention of the prevalent, concerning but underrecognized public health problem of distressing and harmful resident-to-resident interactions in dementia in long-term care homes (among many other projects aimed at promoting the quality of care, safety, and dignity of people living with dementia).
You can read a summary of my activities here:
REQUEST FOR SPONSORSHIPS
Dementia Behavior Consulting LLC and its International Center for Prevention of Distressing and Harmful Resident-to-Resident Interactions in Dementia in Long-Term Care Homes (i.e. “The Center”) continue to work tirelessly on various pressing issues aimed at addressing this prevalent but mostly hidden phenomenon. The Center needs ongoing funding to continue and expand this important life-saving line of work.
I will greatly appreciate it if you, your colleagues or other organizations and foundations you know of would be willing to discuss with me the possibility of sponsoring some of the Center’s planned projects in order to bring us closer to realizing the ultimate goal of keeping vulnerable and frail elder residents with and without dementia safe and free from psychological harm.
If you or your colleagues are interested in considering the possibility of sponsoring one or more future projects, please contact me at:
I will be more than glad to share with you details about what makes it so that your support is so critical to carrying out the planned projects and initiatives.
LIST OF PLANNED ACTIVITIES FOR WHICH DEMENTIA BEHAVIOR CONSULTING LLC IS SEEKING SPONSORSHIP:
Develop an online support group for family members of residents who were injured or died as a result of resident-to-resident incidents in dementia in long-term care homes. The group could assist these individuals with emotional support, education about this phenomenon, and it could also assist tremendously in advocating for changes in legislation, policies, practices, and prevention of these incidents (many family members who lost their loved ones due to these incidents are devastated, feel lonely, and are not empowered to bring changes in addressing these incidents and informing efforts to keep other residents safe.
Create an Instagram page displaying the pictures and short descriptions of elder residents who died as a result of resident-to-resident incidents in dementia in long-term car homes. This will assist tremendously in moving beyond statistics and written publications by putting a human face on this prevalent, serious, but mostly hidden public health problem.
Develop the first full-length documentary on the prevalent, concerning but unrecognized public health problem of distressing and harmful resident-to-resident interactions (DHRRI) in dementia in long-term care homes. One possibility is to interview 10-20 family members who lost their loved ones due to fatal episodes of DHRRI in the context of dementia. While we have films and public campaigns on prevention of bullying and violence among children and youth, to my knowledge, no such documentary film exits about the common psychological and physical harm causes to elders with dementia during DHRRI in long-term care homes. I am looking for talented and accomplished producers who will be willing to explore the possibility of collaborating with me and my colleagues on this first-of-its-kind and sorely needed initiative. I believe that by touching the conscious of the general public it will be possible to bring fundamental change in addressing this mostly hidden public health problem and keep vulnerable elder residents with dementia (and courageous direct care partners who regularly try to protect them…) safe and free from psychological harm. Judy Berry, founder and former CEO of Lakeview Ranch MN, currently president of Dementia Specialist Consulting, is one key collaborator on this sorely needed initiative. Another is the filmmaker Julius Keya, Brilliant Image Productions, LLC.
Development of assistive technology to strengthen direct care partners’ ability to supervise residents effectively. For example, a collaboration with Steve Orfield (Orfield Labs, Minneapolis) to develop a device that will generate a signal to direct care partners in real time before and during negative interactions between residents. One pilot study by Bharucha et al. (2008) in the public spaces of a dementia care home has shown that close to 40% of episodes of physical negative interactions between residents were not witnessed by direct care partners. In addition, my review of 100 deaths as a result of these incidents has shown that the majority of the fatal episodes were not witnessed by direct care partners (45 out of 73 incidents (62%) took place inside bedrooms and 45 out of 73 incidents (62%) were reported as not witnessed by care staff members).
Continue tracking, documenting, and disseminating newspaper articles and other reports on injurious and fatal resident-to-resident interactions in dementia in long-term care homes. As of July 20, 2017, I tracked down and reviewed 100 deaths of elders as a result of resident-to-resident incidents in dementia in long-term care homes. A presentation on these incidents is ready; a manuscript for publication in a peer-reviewed journal is under development.
Continued delivery of presentations on prevention of DHRRI in dementia in long-term care homes (such as nursing homes, assisted living residences) and adult day health centers as well as at professional and scientific conferences.
Further development and evaluation of my direct care partners training program on prevention of DHRRI in dementia. This, based on my exiting 3-hour staff training program and upcoming evidence-based book dedicated to prevention of this behavioral phenomenon (to my knowledge, the 1st book dedicated specifically to this type of behavioral expressions).
Development and production of educational DVDs on prevention of various forms of behaviors expressions in people with dementia such as prevention of DHRRI in dementia in long-term care homes (also called by others Resident-to-Resident “Abuse” “Violence” “Aggression” or “Elder Mistreatment).
Conduct and collaborate on research studies on DHRRI in nursing homes and assisted living residences and participant-to-participant negative interactions in adult day health centers serving people with dementia.
Examples of analyses and research studies include:
Examine the link between Ageism and episodes of DHRRI in elders with dementia as well as the link between misconceptions and stigmas about people living with dementia and these episodes. Gloria Gutman, a professor at Simon Fraser University’s gerontology research centre “wonders whether ageism is at the root of why so little has been done to study and learn from resident-on-resident aggression” (Source: Newspaper article by Kim Pemberton, Vancouver Sun, January 17, 2016).
Analysis of Statement of Deficiencies and Plan for Corrections (CMS Form 2567) reports on all resident-to-resident incidents in CMS-certified nursing homes in the past 3 years in all 50 states. I submitted a Freedom of Information Act (FOIA) Request to CMS on July 19, 2017 to gain access to these reports.
Gain access and analyze Death Certificates pertaining to fatal resident-to-resident incidents in long-term care homes. Examine the quality, accuracy, and completeness of these death certificates and the extent to which they meet national (CDC) and international (WHO ICD-10) guidelines for filling out these certificates. My review of 100 deaths due to these incidents in dementia suggests that a significant number of these incidents are not noted on death certificates as contributing factors or direct causes of these deaths. Oftentimes, one may see a natural cause and/or pneumonia as the official cause of death with no mention of the severely injurious incident that led to the decline in the target resident’s function, mobility, health, and other complications that eventually contributed to her/his death.
Conduct a survey and analysis of policies, procedures, and practices Coroner and Medical Examiner offices across the country in the context of resident-to-resident incidents in long-term care homes. Chronic and persisting gaps in system have been recognized for several decades.
Conduct qualitative analysis of Nursing Home Inspect (ProPublica) data on episodes of DHRRI in dementia (based on State Inspectors Reports at the local, state, and national level as reported on CMS’s Nursing Home Compare website).
Gain access and conduct analysis of a large dataset on episodes of DHRRI from across Canada.
Conduct analysis of medico-legal records and databases (such Coroner and Medical Examiner records) containing essential information about the circumstances surrounding fatal resident-to-resident interactions in dementia and serious mental illness in long-term care homes. Examples include the National Violent Death Reporting System (U.S. Centers for Disease Control and Prevention), Canadian Coroners and Medical Examiner Database (Canada), and the National Coronial Information System (Australia).
Conduct analysis of a large dataset on falls in long-term care homes to determine the extent to which the reported falls occurred during episodes of DHRRI in general and in the context of dementia. Previous research in Canada using video recordings of 227 falls among 130 older residents in the common spaces of two long-term care homes has shown that 20 of the falls (9%) took place during DHRRI (Rabinovitch et al. 2013). Also, in my review of 100 fatal resident-to-resident incidents in dementia, 40% were push/beat-fall incidents.
Examine what makes it so that thus far Canada’s media and journalists appear to be more open and committed to raising awareness to the harmful behavioral phenomenon of DHRRI in long-term care homes than the U.S. This appears to be the case at least based on an initial search and review of hundreds of newspaper articles published in North America in the last 20 years and in light of the fact that the U.S. population is about 10 times larger than the Canadian population.
Other planned activities include:
Develop a pre-admission dementia-specific behavioral expressions screening tool (for various forms of behavioral expressions in general and DHRRI-specific).
Engage in advocacy work aimed at ensuring humane staffing levels in long-term care homes (nursing homes and assisted living residences). Inadequate staffing levels are frequently cited as contributing factors for harmful RRI in dementia in long-term care homes. Not having sufficient number of well-trained staff members at all times limits staff ability to supervise residents with dementia and serious mental illness effectively and represents a major missed opportunity for prevention. A recent excellent commentary (review of dozens of research studies) by Prof. Charlene Harrington reports that “half of U.S. nursing homes have low staffing and at least a quarter have dangerously low staffing.” The commentary concludes, “Compelling evidence supports the need for higher minimum nurse staffing standards, adjusted for acuity.” Citation: Harrington et al. (2016). The need for higher minimum staffing standards in U.S. nursing homes. Health Services Insights, 9, 13-19.
Develop Suspicious Death Protocol to be used in long-term care homes such as nursing homes and assisted living residences. A significant number of fatal episodes of physical resident-to-resident interactions are reported as “death of natural cause” when a physical altercation between resident was the initial cause and/or contributing factor for the target resident’s injury and subsequent decline and death.
Collaborate with CMS (Survey & Certification Group and Clinical Standards Group) on initiatives aimed at addressing this public health problem.
Collaborate with CDC Injury Prevention Center on developing a research program and practically useful educational resources for addressing this public health problem.
Advocate for crafting, pilot testing, and adding questions to the MDS 3.0 (Behavior E Section) that for the first time will enable to identify the targets of behavioral expressions labeled as “aggressive” (i.e. whether they are directed at direct care partners or other residents). See my Letter to the Editor of JAMDA:
Caspi, E. (2013). M.D.S. 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.
This will enable to conduct sorely needed large scale studies that will shed light on risk factors and protective factors. I already developed a draft of this new variable in the MDS 3.0 and it is available for review, refinement, and testing – prior to incorporation into the MDS 3.0.
Stay current with new policies, practices, and research studies on DHRRI in dementia in long-term care homes.
Continue to maintain my blog which is the first dedicated to prevention of DHRRI in dementia in long-term care homes (launched in April 2012). In addition, write up dozens of blog posts for earlier posts and future ones.
Continue to write letters and have conversations with leading organizations dedicated to supporting and caring for elders and people with dementia (such as Administration for Community Living, Ombudsman program, Alzheimer’s Association, The National Consumer Voice for Quality Long-Term Care, CMS (Survey and Certification Group), CDC (Division for Injury Prevention), the U.S. Inspector General, state regulatory agencies, APS, Law Enforcement, Institute of Medicine, Assisted Living Federation of America, Justice in Aging) as well as policy makers and legislators.
Write and publish peer-reviewed articles on topics such as:
The circumstances surrounding the death of 100 elders as a result of resident-to-residnet incidents in dementia in long-term care homes. To my knowledge, this will be the most comprehensive review of these fatal incidents. Insights gleaned from this review are anticipated to have tremendous impact in raising awareness to this phenomenon and informing efforts to prevent it and keep residents safe.
Willful Intent.” Examine and publish an article on the seemingly major gap in Federal regulations pertaining to Long-Term Care Reportability for Abuse under F225. Specifically, it appears as though in situations where a “resident-to-resident altercation has been alleged,” reports are not required if the exhibiting resident did not “act willfully” in the altercation. The instruction is: “Did the resident act willfully in the altercation?” According to the federal regulations, “Willful means that the individual intended the action itself that he/she knew or should have known could cause physical harm, pain, or mental anguish. Even though a resident may have a cognitive impairment, he/she could still commit a willful act.” The problem with this instruction in the Federal regulations is that most residents with dementia in the mid-to-late stages of the disease do not usually intend to harm or injure another resident. The result of this seemingly misinformed federal requirement is that a large number of incidents that should be classified as “abuse” are not making their way into this reporting category. As a result, many of these reports may either not be investigated or they may be classified instead as “Neglect” or another classification of maltreatment is being used. Without specific and unique designation of the original incident as distressing and/or harmful resident-to-resident interactions (DHRRI), it is not possible to disentangle DHRRI incidents from those caused by other types of staff neglect. This gap has tremendous negative implications. For example, it prevents us from being able to conduct an analysis of incidents of DHRRI both under the “Abuse” category and “Neglect” category. That being said, as noted above, most incidents of DHRRI in the context of dementia (especially in the mid-to-late stages of the disease) should not be considered “abuse” per se because in most situations the person with dementia does not intend to harm or injure another resident (though the outcome of the behavioral expression oftentimes can be serious and devastation as demonstrated in numerous incidents that have led to physical injuries and deaths of elder residents). This entire issue needs to be examined thoroughly and changes are urgently needed to ensure that we are not missing out on a large number of incidents of DHRRI in the context of dementia. In other words, if it is not reported, it does not exist. If it doesn’t exist, we are not in a position to improve understanding of these incidents and develop policies and psychosocial interventions to address them and keep residents safe.
Manuscript under development. Rigor versus relevance in structured observational strategies in research on behavioral expressions in people with dementia in long-term care homes.
Publish a peer-reviewed article based on my M.A. Thesis: Illness representations and their relationship with burden of care among 100 primary family caregivers of community-residing persons with dementia.
The primary goal of the International Center for Prevention of Distressing and Harmful Resident-to-Resident Interactions in Dementia in Long-Term Care Homes is to ensure that older residents with dementia (and direct care partners) will remain free from psychological and physical harm commonly caused by these behavioral expressions.
As importantly, skilled prevention and de-escalation of DHRRI in dementia will increase the likelihood that direct care partners who often courageously attempt to protect residents from other residents will also remain safe and free from psychological harm.
Your support is essential to achieving this goal!
Full credit to individuals and organizations/foundations sponsoring projects led by The International Center for Prevention of Distressing and Harmful Resident-to-Resident Interactions in Dementia will be given on a special blog post called “List of Sponsors 2016” (except for those donors who prefer to remain anonymous) and in other ways that would be suitable to sponsors.
Acknowledgment of each sponsor will also appear on any product developed in all designated projects (examples include training programs, presentations, reports, & articles in peer-reviewed journals).
Caspi, E. (2016). Fighting for Dignity: Prevention of Distressing and Harmful Resident-to-Resident Interactions in Dementia in Long-Term Care Homes. Presentation delivered on 10.12.16 as In-Service Annual Training for 165 Surveyors and Supervisors of the Minnesota Department of Health (such as Health Regulation Division, Licensing and Certification, Office of Health Complaints, Home Care & Assisted Living Program). The Long-Term Care Ombudsman staff are also invited to attend. The presentation was sponsored by Orfield Labs Inc. (Steve Orfield), Minneapolis, MN.
Please let me know if you have any questions,
Thanks for your consideration,
Eilon Caspi Ph.D.
Gerontologist & Dementia Behavior Specialist
Founder & Director, Dementia Behavior Consulting, LLC
Blog: The International Center for Prevention of Distressing and Harmful Resident-to-Resident Interactions in Dementia in Long-Term Care Homes:
Author of the upcoming book: Fighting for Dignity: Prevention of Distressing and Harmful Resident-to-Resident Interactions in Dementia in Long-Term Care Homes. Health Professions Press. Expected release: 2018.
Understand, Raise Awareness, Act!