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Improving EMS Dementia Literacy
EMS providers routinely encounter patients suffering from dementia in the out-of-hospital setting. The University of North Texas Health Science Center, University of Texas at Arlington, Alzheimer’s Association, and MedStar Mobile Healthcare partnered on a project to help EMS providers more effectively identify and treat patients who may be suffering from dementia.
Dementia has become a global health burden. The number of patients with dementia is growing rapidly worldwide and will almost double every 20 years, reaching 131.5 million in 2050.1 The CDC and Alzheimer’s Association Healthy Brain Initiative identified five priority areas to maintain or improve cognitive health in response to these statistics.2 One area, “Educate and Empower the Nation,” detailed the need to disseminate the latest science and help people understand the link between risk and protective factors for cognitive health.
To achieve these goals, communication about dementia must be health-literate: Almost 90% of Americans may lack the knowledge and skills needed to manage their health and prevent disease.3
Australian experts Lee-Fay Low and Kaarin Anstey have defined dementia literacy as the “knowledge and beliefs regarding dementia that aid recognition, management, or prevention,” stating that “dementia literacy [health literacy surrounding dementia] plays a vital role in effective care risk assessment and communication.”4 Misinformation and poor knowledge about dementia can lead to delayed diagnosis, worsening symptoms, and delayed treatment.5 In fact, lack of knowledge can lead not only to unmet needs for people living with dementia but also for their adult caregivers.6
Many people living with dementia experience other chronic medical conditions, such as diabetes, hypertension, and congestive heart failure.7 In addition, dementia may manifest behavioral symptoms such as memory loss, confusion, aggression, and agitation. Despite many of these symptoms being treatable in the community, multimorbidities that include dementia increase calls to emergency and medical services to obtain care.7,8 These situations present multiple challenges for EMS providers and can result in adverse outcomes for patients. The purpose of this study was to develop training to empower EMS providers and, in turn, dementia caregivers with adequate dementia literacy and resources to become truly competent in managing these situations using a risk communication and referral model.9
Data Sources and Measures
Phase 1: Provider Assessment and Training
The Alzheimer’s Association of Tarrant County conducted open-ended interviews with key MedStar providers in December 2019. Qualitative data from the interviews was reviewed for key themes related to knowledge about dementia. Themes identified included a need for dementia literacy and health literacy skills with education on related referral resources.
In early 2020 the Alzheimer’s Association and research team, as a part of this study, developed and delivered three one-hour trainings for MedStar Mobile Integrated Healthcare providers at the MedStar offices in Fort Worth, Tex. Specific topics included the basics of understanding and approaching Alzheimer’s and dementia; direct communication with EMS providers and dementia patients (improving health-literate practices); and use of the AD8 dementia screening tool to detect early signs of dementia for context of difficult behaviors and referral to resources.
The goals of the trainings included asking questions designed to help identify people using the 9-1-1 system who may have diagnosed or undiagnosed dementia; providing more robust support and resources to these people and their families; reducing unnecessary dependence and costs from people living with dementia and their caregivers on the 9-1-1 system; and connecting patients back to their primary care providers for additional evaluation, diagnosis, and care management.
Phase 2: Implementation
To operationalize the training in practice, on-scene screening questions for dementia embedded in the EMR included:
- Has their doctor ever told the patient or caregiver that the patient has memory problems, dementia, or Alzheimer’s?
- Did you as the 9-1-1 provider observe anything regarding memory problems or the patient repeating themselves?
- Did the caregiver or family member report anything regarding memory problems or the patient repeating themselves?
- Did you as the 9-1-1 provider suspect the patient to be exhibiting symptoms at any stage for memory problems, dementia, or Alzheimer’s?
Screening Criteria
Screening referrals from MedStar EMS included patient encounters via both scheduled and unscheduled MIH home visits and those being enrolled in a study already in progress assessing patients at risk for elder abuse. This partnership bridged referrals of patients who tested positive on the s-MoCA (short-form Montreal Cognitive Assessment), another cognitive-impairment screening tool.
In addition to training, practice changes included embedding screening questions in the 9-1-1 EMR and AD8 dementia screening for MIH providers. The MedStar EMR was also programmed to filter for only patients 65 or older to receive the screenings. Filters for other dementia-related criteria were also put in place (Table 1).
Results
The dementia training was provided to 18 participants who yielded a 94% survey-completion rate. The health literacy and communication training garnered 14 participants with a 100% survey-completion rate.
Post-surveys showed the majority of trained EMS providers reported (100% agreed or strongly agreed) they understood more about Alzheimer’s and dementia; were more confident in providing services to people living with dementia and their caregivers; and were more aware of resources for people living with dementia and their caregivers.
The AD8 dementia screening tool training included 12 participants who attended seven small group sessions with a 100% survey-completion rate. Post-surveys showed the majority of trained EMS providers reported (91%–100% agreed or strongly agreed) they learned the signs of dementia; learned how to administer the AD8; understood when to administer the AD8; understood how AD8 scoring differentiates normal aging from mild dementia; would apply this knowledge in their work; and would recommend the trainings.
After practice change, 21 AD8 screenings conducted by MIH providers resulted in five referrals over a four-month period—a 500% increase. EMS providers made more than 30 referrals while educating caregivers on additional resources for support. The project revealed a pathway to future interventions to improve the quality of life for patients and caregivers through early dementia detection and resource referral.
Total calls for the pilot period for overall patients 65 or older were 2,852. The study period yielded 2,583 patients screened by 9-1-1 responders for dementia via embedded questions in the EMR. Those calls identified 247 patients (9.6%) exhibiting signs of dementia using screening questions and 242 (9.4%) using dementia screening criteria. Calls indicating both revealed 98 patients who showed both clinical signs and dementia screening criteria.
For the MIH providers, use of the s-MoCA test in partnership with the elder abuse and neglect study garnered referrals to the Alzheimer’s Association and other community partners. The pilot period for this data collection identified 115 persons who tested positive on the screening, resulting in 26 referrals to the Alzheimer’s Association.
Discussion
EMS providers are in a unique position to assess and refer patients who may be suffering from dementia and Alzheimer’s disease. Although the issue is constantly in the headlines, new strategies and modalities in dementia diagnostics, therapeutics, and prevention can overwhelm even the most dementia-savvy person. These complex concepts increase rather than decrease the complexity of health communication in dementia care.10
Health literacy plays an integral role in both the patient’s and caregiver’s ability to understand medical information, utilize medical resources, and make shared decisions surrounding health care, including when to call EMS. The capacity to understand and act on health information may be further compromised in older adults with cognitive decline and caregivers with low health literacy, especially in cases of other disease factors and multiple medications.11
This intervention showed that operationalizing EMS providers who have frequent encounters with this at-risk population can help identify those who might need assistance. Utilizing screenings and asking simple questions helped identify those showing signs of cognitive decline, which can help facilitate early diagnosis, abate or reduce worsening symptoms, and obtain earlier treatment through education and referral.
Conclusion
Outcomes of this project indicate bringing awareness to the need for health-literate and culturally competent education and support of first responders and subsequently dementia caregivers can yield referrals and delivery of timely dementia interventions. EMS providers are receptive to trainings to identify dementia, communicate with dementia patients, and refer caregivers to services. EMS providers reported satisfaction with trainings about dementia.
The authors wish to acknowledge David Dormady, NRP, LP; David Salguero, LP; Audrey Kwik; and Kayla Demiar, BS, for their assistance with this article.
References
1. Prince M, Bryce R, Albanese E, et al. The global prevalence of dementia: a systematic review and metaanalysis. Alzheimer’s Dement, 2013 Jan; 9(1): 63–75.
2. Centers for Disease Control and Prevention, Alzheimer’s Association. The Healthy Brain Initiative: A National Public Health Road Map to Maintaining Cognitive Health. Centers for Disease Control and Prevention. 2007.
3. Patient Safety Network. Health Literacy. Agency for Healthcare Research and Quality. Sep 7, 2019.
4. Low LF, Anstey KJ. Dementia literacy: recognition and beliefs on dementia of the Australian public. Alzheimer’s Dement, 2009; 5(1): 43–9.
5. Loi SM, Lautenschlager NT. Dementia literacy in older adults. Asia Pacific Psychiatry, 2015; 7(3): 292–7.
6. Black BS, Johnston D, Rabins PV, et al. Unmet needs of community-residing persons with dementia and their informal caregivers: findings from the maximizing independence at home study. J Am Geriatr Soc, 2013; 61(12): 2,087–95.
7. Alzheimer’s Association. 2018 Alzheimer’s Disease Facts and Figures.
8. Voss S, Black S, Brandling J, et al. Home or hospital for people with dementia and one or more other multimorbidities: What is the potential to reduce avoidable emergency admissions? The HOMEWARD Project Protocol. BMJ Open, 2017; 7: e016651.
9. Sun F, Gao X, Brown H, Winfree Jr. LT. Police officer competence in handling Alzheimer’s cases: The roles of AD knowledge, beliefs, and exposure. Dementia (London), 2019 Feb; 18(2): 674–84.
10. Stevenson M, McDowell ME, Taylor BJ. Concepts for communication about risk in dementia care: A review of the literature. Dementia (London), 2018 Apr; 17(3): 359–90.
11. Kapasi A, DeCarli C, Schneider JA. Impact of multiple pathologies on the threshold for clinically overt dementia. Acta Neuropathologica, 2017; 134(2): 171–186.
Teresa Wagner, DrPH, MS, CPH, RD/LD, CPPS, CHWI, DipACLM, CHWC, is an assistant professor at the University of North Texas Health Science Center and an expert in health literacy. Her health literacy work with SaferCare Texas worked to frame the big picture in developing the dementia literacy tools and training.
Erin Carlson, DrPH, MPH, is an associate clinical professor at the University of Texas at Arlington and provided research methods expertise. Along with her MPH student Kayla Demiar, she worked on training survey design, analysis, and program evaluation.
Daniel Ebbett, BS, LP, was a paramedic at MedStar Mobile Healthcare in Fort Worth, Tex. at the time of the project and served as the data miner, analysis, and evaluation lead. He is now data manager for the North Central Texas Trauma Regional Advisory Council in Arlington, Tex.
Laura McEntire, LCSW, ACSW, is health systems director at the Alzheimer’s Association and championed the tools for embedding in the EMR for EMS providers. Her expertise in dementia-related care issues helped bridge the gaps in EMS provider knowledge, community needs, and community resources.
