Sponsorships opportunities for projects done at Dementia Behavior Consulting and The International Center for Prevention of Distressing and Harmful Resident-to-Resident Interactions in Dementia in Long-Term Care Homes
1. Steve Orfield (Orfield Labs Inc, Minneapolis, MN)
2. Theresa Piccolo, Toronto, Canada
During the past 4 years, my company and the Center engaged in various projects and initiatives related to prevention of the prevalent, concerning, but under-recognized public health problem of distressing and harmful resident-to-resident interactions in dementia in long-term care homes.
Selected examples include:
Dozens of presentations at the local, state, national, international professional and scientific conferences (American Society on Aging and Gerontological Society on Aging) as well as at the United Nations, Alzheimer’s Associations, Veterans Administration’s Community Living Cenetrs, among other forums. Many presentations were also delivered to practitioners (such as nurses, social workers, recreation therapists, psychologists, and psychiatrists).
Publications in peer-reveiwed journals
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. [Editorial] [Review of 40 deaths of older residents as a result of physically harmful interactions with other residents]
Caspi, E. (2015). Aggressive behaviors between residents with dementia in an assisted living residence. Dementia: The International Journal of Social Research and Practice, 14(4), 528-546. [Research article]
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. [Letter to the Editor]
Caspi, E. (2013). Time for change: Persons with dementia and “behavioral expressions,” not “behavior symptoms.” Journal of the American Medical Directors Association, 14(10), 768-769. [Letter to the Editor]
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. [Letter to the Editor]
This, including the first book dedicated soley to prevention of this form of behavioral expressions:
Caspi, E. (in press). Fighting for Dignity: Prevention of Distressing and Harmful Resident-to-Resident Interactions in Dementia in Long-Term Care Homes. Health Professions Press. [Expected release: Early 2017]
Dissemination of useful knowledge on the 1st archival blog dediated soley to prevention of distressing and harmful resident-to-resident interactions in dementia (launched April 2012). Over 1,100 free posts are included on the blog to date.
Participation in the first full-day meeting aimed at building consensus on research agenda related to distressing and harmful resident-to-resident interactions in long-term care homes (Led by Prof. Lynn McDonald at the University of Toronto; citation of the peer-reviewed article reporting on this first of its kind event in North America is available upon request).
Submission of a proposal to the Alzheimer’s Association (CT Chapter) for funding to develop an evidence-based staff training program on psychosocial strategies for prevention of distressing and harmful resident-to-resident interactions in dementia in long-term care homes.
Preparation and submission of an HSR&D pilot research grant application to conduct a study on distressing and harmful Veteran-to-Veteran interactions in dementia in Community Living Centers (formerly called VA nursing homes). The application recevied a fair-to-good score but unfortunately revisions and resubmission were not possible due to end of funding of my 2-year VA postdoctoral fellowship. The application might be availbale to qualified VA organization and/or researchers interested in pursuing and collaborating on revisions and resubmisison of the application.
Review and feedback to various leading organizations on reports related to prevention of various forms of behavioral expressions in long-term care residents with dementia in general and resident-to-resident negative interactions in particular.
Review of manuscripts for publication in peer-reviewed journals (such as Age & Ageing; Research on Aging; Journal of Applied Gerontology; Dementia; American Journal of Alzheimer’s Disease & Other Dementias; and Journal of Aging & Social Policy).
Various efforts to inform and educate states departments of heath and other regulatory, certification, and surveying agencies about this prevalent, concerning but underrecognized public health problem and the evidence-based ways in which it could be addressed.
Advocacy work based on my research study that informed efforts to change regulations of dementia-specific assisted living residences in Massachusetts.
Efforts to raise awareness to the phenomenon of distressing and harmful resident-to-resident interactions in dementia with the U.S. Office Inspector General and request to conduct an examination of this public health problem (such as falls, physical injuries, and deaths). This, as was done in the past by the U.S. Inspector General on issues such as abuse and neglect of elders in nursing homes, inappropriate use of psychotroic medications, and adverse events in this care setting.
Interviews and collaborations with major media outlest such as The Star Tribune, The Washington Post, and CNN medical.
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 40 deaths as a result of negative interactions between residents has shown that the majority of the fatal episodes were not witnessed by direct care partners. See citation above.
REQUEST FOR SPONSORSHIPS
In the last year the International Center for Prevention of Distressing and Harmful Resident-to-Resident Interactions in Dementia in Long-Term Care Homes continued to work on various pressing issues despite not having any external funding to do the work. The Center has reached a point where it might not be able to continue this line of work due to lack of funding.
If you found the described above initiatives and my other projects useful, I will appreciate it if you, your colleagues or other organizations and foundations you know of would consider the possibility of sponsoring my Center’s future planned projects in order to continue this important line of work.
If you or your colleagues are interested in considering the possibility of sponsoring one of more future projects aimed at improving the quality of care provided to people with dementia in general or preventing distressing and harmful resident-to-resident interactions in dementia, please contact me at:
I will be glad to share with you details about why your support is critical to realizing the planned projects and initiatives.
LIST OF PLANNED ACTIVITIES FOR WHICH I AM SEEKING SPONSORSHIP (the list will be updated over time):
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.
Continue tracking down, documenting, and disseminating newspaper articles and other reports on injurious and fatal resident-to-resident interactions in dementia in long-term care homes.
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.
Development of evidence-based direct care partners training program on prevention of DHRRI in dementia. Such as based on my 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 “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.
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.
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 databases 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 what proportion of 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).
Examine whether and if so 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 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 and adding variables to the MDS 3.0 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 above. 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 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 to leading organizations dedicated to caring for elders and people with dementia (such as Pioneer Network, Administration for Community Living, Ombudsman program, Alzheimer’s Association, The National Consumer Voice for Quality Long-Term Care, CMS, CDC, the U.S. Inspector General, state regulatory agencies, APS, Law Enforcement, Institute of Medicine, Assisted Living Federation of America) as well as policy makers and legislators.
Write and publish peer-reviewed articles on topics such as:
New report on deaths of residents due to DHRRI in dementia in long-term care homes (i.e. beyond the 40 fatal episodes reported in my January 2016 Editorial in JAMDA). Since the publication, I identified at least 12 additional fatal incidents in the context of dementia in long-term care homes.
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.
Rigor versus relevance in structured observational strategies in research on behavioral expressions in people with dementia in long-term care homes.
Does the Alzheimer’s Association has Alzheimer’s Disease? Shifting back to the historic roots and focusing primarily on a person-directed “low-tech” paradigm (as opposed to bio-medical “high-tech” one).
Publish 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 scheduled for 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 is sponsored by Orfield Labs Inc. (Steve Orfield), Minneapolis, MN.
Please let me know if you have any questions,
Thanks for your consideration,
Eilon Caspi B.S.W. M.A. 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: Early 2017.
Understand, Raise Awareness, Act!