Introduction
Approximately 50 million individuals worldwide are currently living with dementia (World Health Organization, 2017). Compared with the general population, older adults with dementia in hospitals experience poorer nutrition and functional ability, an increased risk of delirium, longer hospital stays, and higher risks for mortality and falls (Mukadam & Sampson, 2010; Rudolph et al., 2010; Sampson, Blanchard, Jones, Tookman, & King, 2009; Sampson et al., 2014; Zhu et al., 2015). Staff in acute care settings, however, do not provide high-quality care for older adults with dementia due to the focus on managing acute illnesses and inadequate staff training (Dewing & Dijk, 2016; Turner, Eccles, Elvish, Simpson, & Keady, 2017).
As dementia progresses, the likelihood of persons with dementia experiencing responsive behaviors increases. Responsive behaviors are defined as words, movements, or actions that persons with dementia use to have their needs known, and the term emerged from persons with dementia (Murray Alzheimer Research and Education Program, 2017). Examples of responsive behaviors include grabbing onto others, wandering, yelling, hitting, kicking, restlessness, repetitive sentences/questions, making noises, and sexually inappropriate behaviors (Alzheimer’s Society of Canada, 2017; Draper, Finkel, & Tune, 2015). We chose to use the term responsive behaviors compared with other well-known terms such as Behavioural and Psychological Symptoms of Dementia (BPSD) as responsive behaviors are more reflective of the constructivist paradigm underlying Thorne’s (2016) interpretive descriptive approach used in this study. Responsive behaviors acknowledge the multiple layers that exist underneath a behavior and the various behaviors that can be used by persons with dementia to respond to a situation or environment. Responsive behaviors have been identified by persons with dementia as the preferred term and is widely adopted (Dupuis, Wiersma, & Loiselle, 2012). This term also reflects person-centered language, and this type of language is one of the recommendations of the Alzheimer’s Society of Canada (2012) to maintain the dignity of persons with dementia. The term BPSD appears to be more in keeping with a clinical diagnostic language or a medicalized term. The terms challenging and aggressive behaviors have negative connotations and suggest that a problem is caused by an individual (Alzheimer’s Society of Canada, 2012).
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Approximately 70% to 90% of persons with dementia will be affected by responsive behaviors over the course of their disease (Freeman & Joska, 2012). When older adults with dementia receive care in hospital, 75% of this population will experience responsive behaviors at least once (Sampson et al., 2014). The hospital environment may trigger responsive behaviors among older adults with dementia (Sampson et al., 2014) and lead to feelings of distress, insecurity, anxiety, and fear (Baille, Cox, & Merritt, 2012; Hynninen, Saarnio, & Elo, 2016). Hospitalization heightens the sensitivity of clients with dementia to responsive behaviors due to being in an environment with numerous triggers (e.g., noise and poor lighting) and receiving care from staff who have limited knowledge of their preferences (Schindel Martin et al., 2016).
Responsive behaviors are symptoms of dementia that are perceived by health-care professionals to be one of the most difficult aspects of dementia care to address in acute care settings. With the growing number of older adults with dementia in acute care settings, health-care professionals are not able to meet the needs of this population due to a lack of understanding of dementia and ability to address responsive behaviors (Turner et al., 2017). Nurses may be the most impacted by responsive behaviors in acute care settings as they spend more time in providing direct care than other health-care professionals (Westbrook, Duffield, Li, & Creswick, 2011). Nurses are expected to excel in providing dementia care despite inadequate staffing and few educational training opportunities (Coffey et al., 2014). Due to lack of skills and knowledge in caring for clients with responsive behaviors of dementia, nurses report being hit, bitten, or physically injured (Marx et al., 2014). Nurses perceive that almost 50% of negative physical and verbal experiences occur during the delivery of care for clients with dementia in hospitals (Speroni, Fitch, Dawson, Dugan, & Atherton, 2014). Experiencing responsive behaviors in the workplace affects job satisfaction, leads to burnout, and causes nurses to contemplate changing professions (Public Services Health and Safety Association, 2007).
There are a number of educational programs for health-care professionals to help them better support individuals with responsive behaviors such as Montessori/DementiAbility (DementiAbility Enterprises, 2016), Gentle Persuasive Approaches (GPA; Schindel Martin et al., 2016), and P.I.E.C.E.S. education (Behavioural Supports Ontario [BSO] Education and Training Committee, 2012). P.I.E.C.E.S. is a 2-day educational workshop for health-care professionals delivering care for persons with complex mental health behaviors such as responsive behaviors of dementia (Hamilton, Harris, Le Clair, & Collins, 2010). P.I.E.C.E.S. constitutes an acronym that considers the following factors as instrumental in the quality of life of older adults: Physical, Intellectual, Emotional, Capacities, Environment, and Social (McAiney et al., 2007).
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Some studies have explored the experiences of health-care professionals with responsive behaviors; however, these studies generalize the experience of all providers without considering the unique role that nurses play in delivering care for older adults with responsive behaviors (Houghton, Murphy, Brooker, & Casey, 2016; Hynninen, Saarnio, & Isola, 2014). Previous studies have explored the experiences of providers caring for persons with dementia in specific acute care settings (e.g., surgical settings, emergency departments, and psychogeriatric units; Cunningham & McWilliam, 2006; Edvardsson & Nordvall, 2008; Hynninen et al., 2014), but none have focused specifically on acute medical units (i.e., general internal medicine). Some studies were focused on general hospital settings and did not differentiate their findings based on type of units (Digby, Lee, & Williams, 2016; Houghton et al., 2016; Moonga & Likupe, 2016; Turner et al., 2017). It is important to recognize the uniqueness of acute medical units as these areas provide services to a large clientele of persons with dementia (Sampson et al., 2009, 2014).
Little is also known about the Canadian nursing experiences in delivering care for older adults with dementia experiencing responsive behaviors in acute care settings although many nurses are caring for this population. Canadian nurses were caring for about 90,000 older adults with dementia in hospital in 2016, and about 38% of older adults with dementia were hospitalized on more than one occasion (Canadian Institute for Health Information, 2018a). Canada is a unique population with a large amount of ethnic and cultural diversity, and this is an important consideration for nurses when implementing holistic dementia care. Canada is renowned for universal health-care and has been found to be one of the highest spenders on health from a global perspective where spending has now reached $200 billion annually (Canadian Institute for Health Information, 2018b). Health-care spending has been aimed toward dementia care through the recent passing of the National Strategy for Alzheimer’s Disease and Other Dementias Act (2017), but little is known about whether Canadian nurses feel that they are being supported in care delivery for older adults with dementia in hospital.
The present study aims to address the gaps in research by providing a Canadian perspective on nursing experiences in the delivery of care for older adults with dementia experiencing responsive behaviors in acute care settings. This understanding is important because it has potential to guide nursing practice and education in effectively addressing responsive behaviors in hospital settings. The research questions of this study were as follows: (a) What are the nursing experiences of care delivery for older adults living with dementia who express responsive behaviors in acute medical settings, and (b) what are the recommendations of nurses to improve dementia care in acute care settings?
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