The Triple Challenge of Recruiting Older Adults With Dementia and High Medical Acuity in Skilled Nursing Facilities

Older adults with dementia are at high risk for delirium, a state of increased confusion characterized by an acute and fluctuating decline in cognitive functioning (Inouye, 2006). The vast majority of people with dementia experience delirium during acute illnesses, and studies report that 24% to 76% die within 1 year of the index episode (Cole, McCusker, Dendukuri, & Han, 2003; McCusker, Cole, Dendukuri, Han, & Belzile, 2003). The World Health Organization estimates that there are over 35 million people worldwide who have dementia, and with the aging of the global population, this number will grow to more than 100 million by 2050 (World Health Organization & Alzheimer’s Disease International, 2012). The greatest increase is expected among developing countries. Based on these projections, we can expect a worldwide increase in the number of people with delirium superimposed on dementia (DSD). Delirium often persists long past the acute phase of an illness (Kiely et al., 2003) and results in an accelerated trajectory of cognitive and physical decline, prolonged rehabilitation, premature nursing home placement, and increased cost of care (Fong et al., 2009; Pitkala, Laurila, Strandberg, & Tilvis, 2005). Currently there are no strong evidence-based treatments for delirium. Professional organizations such as the European Delirium Association and the American Delirium Society advocate for research that will help resolve delirium during rehabilitation so that positive health outcomes are achieved (American Delirium Society, 2013; European Delirium Association, 2013). Despite widespread skepticism, older adults with dementia can achieve positive functional outcomes and discharge destination following intensive inpatient or outpatient rehabilitation (Young, Xiong, & Pruzek, 2011; Yu, Evans, & Sullivan-Marx, 2005). There is little evidence, however, to guide recommendations for specific interventions that optimize outcomes for this vulnerable population (Muir & Yohannes, 2009). The post-acute care period is a critical transitional crossroad for people with DSD, and while the need for high-quality research that guides the care of these individuals is urgent, successful recruitment of individuals with both acute illness and neurological problems into clinical trials is known to be difficult (Newberry et al., 2010). Cognitive impairments due to delirium and dementia, the stress associated with illness and recent hospitalization, and the specter of permanent institutionalization make screening and enrollment into a research study overwhelming to many potential participants. High-quality research depends on the recruitment of an adequate sample. There is little research on best strategies for recruiting in skilled nursing facilities (SNFs), long-term care settings where skilled nursing care, rehabilitative services, and other related health services are provided (Medicare, 2013). SNFs are settings where many older adults with DSD receive short-term rehabilitation services following hospitalization (Auster & Janda, 2009). Given the growing number of older adults with dementia who require rehabilitation, investigators need to understand and respond to recruitment challenges in order for their research to make a significant impact on long-term health outcomes, quality of life, and cost containment (Buntin, 2007). Excellent articles on issues that affect the ability of investigators to recruit older adults with dementia in long-term care settings have been published (Mentes & Tripp-Reimer, 2002; Mody et al., 2008). We found no articles with a focus on the multiple challenges of recruiting older adults with DSD in SNFs, or research studies testing specific recruitment techniques in this population. This article will begin to fill that gap by offering solutions to what we have experienced as a confluence of three major challenges in our current clinical trial: recruiting older adults with dementia who are experiencing high medical acuity in SNFs. We begin by briefly describing our clinical trial and then focus specifically on issues relevant to the external environment, the internal environment, and the research participants and their families that have the potential to affect recruitment in SNFs. Some of these issues are unique to the United States, while others are common to most healthcare systems.