Course:SOWK551/2021/Barriers and remedies of communicating with older adults with Alzheimer’s disease in residential care setting
Short Summary
Literature review of communication barriers with people with Alzheimer's disease in residential care settings and how different professions in residential care homes and family caregivers can address this issue.
Author: Anonymous
Date: April 6, 2023
Background
There is a growing number of older adults with dementia in Canada, and the most common type of it is Alzheimer’s disease. In 2020, approximately 597,000 people were living with Alzheimer’s disease in Canada, while its number is projected to be 955, 900 in 2030 (Alzheimer’s Society of Canada, n.d.). Other than the diagnosis of dementia, some of them also become less independent in their daily activities of living due to body recession, paving the way for admission into residential care settings. Owing to the gradual cognitive decline, older adults with Alzheimer’s disease also experience progressive difficulties in communication, affecting the quality of care they received (Egan et al., 2010; Eggenberger et al., 2013). This literature review highlights the communication barriers experienced by the frontline staff in residential care settings and the family caregivers of people with Alzheimer’s disease. It also explores several strategies that can remedy the situation and how they relate to social work practice.
Communication barriers of people with Alzheimer's disease in residential care settings
Staff in residential care homes
First, the obstacles to communication between frontline workers and residents with Alzheimer’s disease can be attributed to the declined ability of residents in receiving verbal information. McGilton et al. (2017) suggested that care home residents with Alzheimer’s disease have difficulties understanding explanations and following instructions related to their care activities. Due to their diminishing cognitive ability, they will easily forget what others have requested them, or they do not understand the full meaning behind others’ requests, which leads to their behaviors of repeated questioning (de Medeiros et al., 2011). In addition to that, their ability to receive information is further exacerbated owing to their sensory losses such as visual and hearing functions, which further hindered the efficacy of communication with care home staff (McGilton et al., 2017).
Apart from the declined ability to comprehend verbal information, research revealed residents with Alzheimer’s also find it challenging to express their daily personal needs to staff at care homes (Hughes et al., 2008; Egan et al., 2010; McGilton et al., 2017). Egan et al. (2010) suggested these residents have difficulties in object naming and discourse production in which they can only include little information in a simple sentence. They also cannot fully express what type of care they needed, nor the medical symptoms they experienced at the moment (Hughes et al., 2008; McGilton et al., 2017). Hence, it will be challenging for staff at the care home to deliver a need-based care plan to them. In addition, they often have fluctuated emotions easily and behave aggressively, hostilely, or stubbornly to others (Vasse et al., 2010). For instance, they will scream loudly to express their discomfort towards some dissatisfied arrangements in the care home (Bourbonnais & Ducharme, 2008).
Based on the above communication barriers and disruptive behaviors of residents with Alzheimer’s disease, staff at the care home reported they lacked the confidence to handle these situations, especially when residents were angry and agitated for no apparent reason (Hughes et al., 2008). Therefore, it is suggested frontline staff training should be tailor-made to tackle the obstacles to communicating with residents with Alzheimer’s disease (Eggenberger et al., 2013).
Family members of residents with Alzheimer’s disease
Before the care home admission of their loved ones, family members have already experienced communication barriers with them at home. In addition to the physical and cognitive decline experienced by people with Alzheimer’s, Saunders et al. (2011) suggested the communication barriers that family members have encountered at home is also a contributing factor to their early institutionalization. Although having their loved ones admitted to long-term care homes may seem to be an endpoint of care, many family caregivers believed it is just a transition in their caregiving experience (Hemingway et al., 2016). While family members still want to continue their caregiver journey in a different role, they struggle how to overcome the escalated communication obstacles with their loved ones due to their further deteriorated language ability after institutionalization (McCallion et al., 1999). For instance, their loved ones will forget them, ask questions repeatedly, or behave in an aggressive and agitated manner. As a result, it will be challenging and frustrating for family caregivers to engage in meaningful conversation with them, which may lead to a reduced number of visits (McCallion et al., 1999). Therefore, care homes need to provide guidance to family caregivers and encourage them to provide continuous support to residents with Alzheimer’s disease.
Current remedies to improve communication with people with Alzheimer's disease in residential care settings: training programs for frontline workers and family members
Providing training programs is the most prevalent solution to improve communication with people with Alzheimer’s disease. This section outlines the essential components that should be included in the training programs provided to frontline workers and family members, as well as suggests two models that were empirically researched to enhance communication with this population.
Essential components and principles in training
At a knowledge level, Eggenberger et al. (2013, p.352) postulated seven strategies to communicate with people with Alzheimer’s disease in residential care settings, which include (1) verbal skills, (2) non-verbal and emotional skills, (3) attitudes towards people with dementia, (4) behavioral management skills, (5) usage of tools, (6) self-individual experiences, and (7) theoretical knowledge. It is suggested training programs should not only include the theoretical knowledge of dementia, but they should also focus on skills-building, especially for non-verbal communication (Eggenberger et al., 2013). For instance, it is suggested that trainers should teach frontline workers the skills to utilize some visual cues to assist seniors to express their thoughts and feelings (Eggenberger et al., 2013). Moreover, they highlighted the importance of self-reflective practice in which frontline workers are encouraged to critically reflect on their successful and ineffective personal communication strategies (Eggenberger et al., 2013).
While the strategies suggested by Eggenberger et al. (2013) can be included as a crucial component of the training content, McGilton et al. (2009) also introduced some core principles (i.e., educational training, practice, support) to improve the quality of training for both frontline workers and family caregivers. Unlike attending a unilateral lecture about the theoretical knowledge of Alzheimer’s disease, McGilton et al. (2009) suggested the training programs should be didactic so that participants can practice their skills with others. They also suggested the training programs should be learner-focused which more follow-up supervision sessions are necessary to review the frontline staff’s performance after attending training programs and provide individual support to foster continuous learning (McGilton et al., 2009).
Empirical models that enhance communication with this population
- (a) Resident-centered communication intervention (RCCI)
RCCI is an intervention model designed by McGilton et al. (2017) in a single group pre versus posttest study to understand its effectiveness to improve the quality of communication between frontline workers and residents with dementia in a care home. It consists of three components: individualized communication plans, a dementia care workshop, and a care provider support system (McGilton et al., 2017). To develop individualized communication plans with a resident, frontline workers need to first understand the vision, hearing, cognition, and functional communication of that resident; they also need to observe how that resident communicates with others and what are the behaviors and habits of that individual (McGilton et al., 2017). After that, based on their observation, frontline workers need to consider how to avoid communication issues with that resident (McGilton et al., 2017). For the second component of RCCI, staff members need to attend a dementia care workshop that provides strategies to promote effective communication with those residents (McGilton et al., 2017). The content of the workshop included information regarding the communication barriers with seniors with different stages of dementia, role plays to apply the strategies taught in classes, and recommendations provided by speech-language pathologists to improve their communication plans developed previously (McGilton et al., 2017). The last component of RCCI is a system established for frontline workers to receive supportive supervisions from an advanced practice nurse weekly to implement their communication plans with their designated residents and improve their communication skills progressively (McGilton et al., 2017). Not only RCCI was effective to improve communication between staff and residents with Alzheimer’s disease and the quality of life of residents in care homes, but it also echoed the “education training, practice, support” principle articulated previously (McGilton et al., 2017; McGilton et al., 2009). However, the internal validity of the study was not well justified to support the effectiveness of RCCI since no control group was included in the research design (McGilton et al., 2017).
- (b) Family Visit Education Program (FVEP)
FVEP is an intervention model developed by McCallion et al. (1999) in a study with a randomized control trial design to evaluate its effectiveness to reduce the communication challenges between residents with dementia and their family members. FVEP is a tailor-made model to improve the idiosyncratic barriers encountered by family members when they are interacting with their loved ones during visits (McCallion et al., 1999). It consists of four 1.5-hour group sessions and three 1-hour family conferences alternatingly in eight weeks (McCallion et al., 1999). In group sessions, the trainers will impart information related to the behavioral changes of people in different dementia stages and teach family members some strategies to communicate with their loved ones (McCallion et al., 1999). In family conferences, family members will try to apply the strategies they learned in group sessions while the trainers will provide individualized suggestions to improve the ineffective communication strategies they observed in the session (McCallion et al., 1999). The results of the study suggested FVEP was effective to improve the verbal and non-verbal communication between residents with dementia and their families and enhanced the effective structuring of family visits (McCallion et al., 1999). However, the study was conducted nearly three decades ago, so the communication barriers encountered by family members might be different due to the rise of technology. For instance, residents in care homes nowadays may find it challenging to use video-conference tools to communicate with their family members, which affects the quality of communication especially during the pandemic. Therefore, future research is needed to suggest the efficacy of FVEP in enhancing communication with this population.
This section provides some general knowledge and principles on training programs for frontline workers and family members to improve communication with people with Alzheimer’s disease, and how these components have improved the efficacy of training programs in some research despite limitations were found in the studies.
Implications to social work practice
There is currently little evidence suggesting the roles of social workers in mitigating the communication challenges with people with Alzheimer’s disease in residential care settings. However, by understanding the barriers to communicating with this population and learning how current empirical training modalities address these challenges, it is believed that social workers can take an important role in fostering a collaborative relationship between family members and frontline workers as well as cultivating a supportive relationship between residents in residential homes.
First, social workers can foster a collaborative partnership between frontline workers and family members by encouraging mutual respect for each other. Hemingway et al. (2016) revealed the tension between the two parties is often associated with a different understanding of Alzheimer’s disease, where some behaviors that seem to be novel to family members is indeed normal to staff. Apart from increasing the number of educational workshops for family caregivers, social workers should also educate their colleagues on how to clarify their misconceptions about the disease in a friendly manner, as well as teach them to communicate with their loved ones patiently and non-judgmentally. Moreover, social workers should also educate their colleagues to respect the experiential knowledge obtained by the family members during the caregiving period when the resident was not institutionalized (Hemingway et al., 2016). Although sometimes frontline workers may be doubtful about the caregiving or communication strategies suggested by the family members since it does not fit with the theoretical knowledge which they have learned in training programs, it is important to recognize this practice wisdom is gathered by family members with a long history of caregiving experiences (Hemingway et al., 2016). If frontline workers learn to respect and treasure the family members’ wisdom on caregiving, not only it helps to foster a collaborative relationship between them, but it also helps staff to understand the needs of residents with Alzheimer’s beyond a biomedical lens and embrace the knowledge from different perspectives.
Second, social workers can cultivate a mutual-aid atmosphere that encourages residents to support their communication needs with each other in care homes. A study revealed although residents with dementia were experiencing cognitive decline and the loss of autonomy, they were still generative and retained a desire to make contributions to others (Doyle et al., 2015). As residents have different levels of dementia in the care home, social workers can invite those with higher language ability to assist other residents when they encounter difficulties communicating with staff or other residents in daily interactions. When these altruistic behaviors are observed, social workers can show appreciation to them as positive reinforcement and encourage other residents to support each other. If residents are willing to help their counterparts to express their needs, not only it improves communication between staff and residents, but it also enhances the cohesiveness between residents and reduces the level of social isolation. It also demonstrates how social workers can adopt an ecological approach to navigate their client’s systems to reduce communication barriers.
Conclusion
This literature review summarizes the communication barriers between people with Alzheimer’s disease, their family members, as well as frontline workers in a residential care setting. Training programs for frontline workers and family members are critically analyzed, including some critical components and principles of training as well as two empirically researched models. Limitations of the studies are also discussed. To remedy the issue mentioned, it is suggested social workers should encourage frontline staff and family members to work in partnership and promote a mutual-aid network between residents in care homes. Not only it demonstrates how to conceptualize the needs of residents with Alzheimer’s disease beyond a biomedical lens, but it also illustrates how to adopt a systems approach as an intervention for this issue. Future research is suggested to understand the strengths and limitations of deploying technology in enhancing communication with this population.
References
Alzheimer’s Society of Canada (n.d.). Dementia numbers in Canada. Alzheimer’s Society of Canada. https://alzheimer.ca/en/about-dementia/what-dementia/dementia-numbers-canada
Bourbonnais, A., & Ducharme, F. (2008). Screaming in elderly persons with dementia: a critical review of the literature.Dementia (London, England), 7(2), 205-225. https://doi.org/10.1177/1471301208091156
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