Nearly half of all people living in long-term care (LTC) homes have Alzheimer’s disease or other dementias (Alzheimer Society of Canada, 2010). It is thus imperative that staff are confident in caring for these individuals. Effective educational interventions that allow participants to enhance their understanding of the dementia experience are needed to accomplish this goal. The research team organized a book chat at an Ontario LTC facility to evaluate its influence on individual staff perceptions and attitudes as it relates to the care of individuals with dementia. Lisa Genova’s novel, Still Alice (2009), which depicts the struggles of a successful intellect as she faces early onset Alzheimer’s disease, was chosen for the book chat intervention. The novel is written from Alice’s perspective as she slowly declines in her health and the dementia progresses.
Currently, 45.3% of residents in LTC have dementia, and this number continues to rise (Alzheimer Society of Canada, 2010). The nature of dementia makes it challenging to care for this population in LTC. For instance, individuals with dementia tend to be more medically and cognitively complex (Alzheimer Society of Canada, 2010). Responsive behaviors, such as wandering, agitation, aggression, resistance to care, and caregiver dependency in the later stages of dementia, are other obstacles faced by staff (Todd & Watts, 2005).
These challenges can lead to negative effects on LTC staff. To illustrate, facilities that care for individuals with dementia tend to have difficulty recruiting and retaining staff (Pitfield, Shahriyarmolki, & Livingston, 2010). Brodaty, Draper, and Low (2003) found that high levels of stress in nursing home staff were associated with working with more cognitively impaired residents. Furthermore, staff working in LTC experience lower job satisfaction, high absenteeism rates, and high injury rates (Canadian Institute for Health Information [CIHI], 2007; Sharkey, 2008).
LTC staff knowledge of dementia positively affects quality of care and improves their attitudes in caring for this population (Kada, Nygaard, Mukesh, & Geitung, 2009). In terms of staff attitudes, it has been shown that staff who care for residents with dementia perceive residents in more negative ways than positive (Brodaty et al., 2003; Kada et al., 2009). Kada et al. (2009) showed that nurses with specialized training, such as in geriatrics, psychiatry, or dementia care, had a more positive attitude and a greater feeling of hope than those without any special training. Understanding the experience of dementia—what it is like to live with the disease—through specialized training may enhance staff’s attitudes and perceptions toward these individuals, and thus improve the quality of care they provide.
A creative way to educate LTC staff and improve staff attitudes and perceptions about dementia care is the use of book clubs. Book clubs often include guided reflection as a method to promote personal learning (Johns, 1996). Johns (1996) states that it is important to reflect on experience to develop higher order cognitive skills, such as critical enquiry, and that reflection is a way of “realizing” caring, and a route toward more effective practice. Carr and Kemmis (1986) argue that reflective activity is seen to be central to the process of self-appraisal and could be viewed as an essential component in the education of health care professionals. Although the most popular techniques for reflection in nursing are the use of diaries or journals (Platzer, Snelling, & Blake, 1997), book clubs offer a way to provide guided reflection in a group format.
Positive outcomes related to using book clubs and guided reflection have been reported, such as providing a unique opportunity for staff to develop personally and professionally (Butell, O’Donovan, & Taylor, 2004). A study by Plake (2010) on pharmacy students’ experiences in a book club showed that having discussions on books on chronic illness helped students understand the patient experience. This was also shown in a book chat held by Anderson (2004) that demonstrated an expansion of students’ perceptions of self and their world. Greenawald and Adams (2008) contend that book clubs are associated with a number of positive effects, including: a new and more holistic understanding of clients, enhanced knowledge of self, increased awareness of others, greater ability to be self-directed in knowledge enhancement, and facilitation of alternative learning styles. Johnson and Jackson (2005) demonstrated that using literature and self-reflection in relation to that literature assists nurses in increasing their knowledge about suffering and loss. Book chats also invite participants to conduct an examination of their own lives in hopes of being able to provide better care to others (Jackson, 2004).
In addition, a book club may be useful for staff who care for individuals with dementia as it provides the structure to finish the book and allows participants to have a conversation that aims to enhance knowledge and attitudes about dementia care (Arends, Frick, Smith, & Treinkman, 2007). Furthermore, a book club can help foster team development as staff connect over a common experience (Arends et al., 2007). Hence, the following research question was addressed in this study: How does a book chat influence LTC staff perceptions of, and attitudes toward, the care of individuals with dementia?
This study was part of a larger research project called the Quality Palliative Care in LTC (QPC-LTC) project whose aim is to improve the quality of life of people dying in LTC homes (Palliative Alliance, 2013). The QPC-LTC project had an additional goal of assisting LTC homes to create environments and specialized services for their residents and leveraging community partnership to support palliative care delivery in the LTC home. The QPC-LTC team decided to pilot a book chat addressing Alzheimer’s disease because the chat was co-hosted by the local Alzheimer Society and it was thought that this shared venture would encourage an ongoing partnership. Several other interventions have also been piloted in the setting of this study. This article outlines only one of the interventions from the larger study, the book chat intervention. In this study, a qualitative descriptive design was used.
Ethics board review and approval was obtained from the local university as well as the LTC home itself. Informed consent was obtained from all participants.
Book Chat Intervention
The book chat was conducted in partnership with the local Alzheimer Society chapter (see the Appendix in the online version of this article for Tips for Planning a Still Alice Book Chat). Approximately 6 weeks before the book chat, a dozen copies of the novel were given to the LTC home to circulate amongst the staff. This amount of time was found to be ideal to allow staff and interested individuals to have access to the novel as well as the time to read the book. The 2.5-hour book chat was led by two moderators and guided by the Still Alice discussion questions located at the back of the novel. Three project staff as well as one representative from the local Alzheimer Society also participated in the discussion. Participants were asked to share their stories in caring for those with dementia and how their experiences related to the novel.
The book chat was held at a southern Ontario LTC home (200 beds) that serves as a study site for the QPC-LTC Alliance project. Book chat participants were recruited in a number of ways. First, posters were placed around the home 2 weeks prior to the book chat date to advertise the event. Second, research staff informed LTC staff about the book chat at staff meetings and by word-of-mouth while they were in the LTC home. All staff participated in the book chat on a voluntary basis. In fact, most of the participants came in on their day off to partake in the event. All participants read the book prior to the book chat. One book chat was held with a total of 11 participants.
Data were collected using a qualitative questionnaire. The questionnaire administered to the book chat participants contained two open-ended questions to assess the book’s impact on participants’ perceptions and attitudes toward dementia, which were as follows:
How have your perceptions of caring for someone with dementia at the end-of-life changed?
How has your empathy and understanding of people with dementia changed after reading the book Still Alice?
For the qualitative data obtained from the book chat participants, two authors (N.L., C.S.) initially read all of the respondents’ answers. Next, both authors independently took detailed marginal notes using line-byline open coding (Patton, 2002; Sandelowski, 2000). Discrepancies were reviewed by the two authors and discussed until consensus was reached on a coding framework. Once all data were coded, overall themes were labeled. These themes were endorsed by a number of participants as opposed to only one or two.
A number of strategies were used to promote rigor in the analysis. First, investigator triangulation was used to minimize any idiosyncratic biases. Two of the investigators (N.L., C.S.) independently analyzed data and met regularly throughout the analysis phase to discuss progress and findings. All of the questionnaires were separately coded by at least two individuals. The research team met to review progress in an iterative process to ensure that the data were being interpreted in a nonbiased manner.
Second, overall themes of the open-ended questions were circulated to the participants via e-mail. This summary of the themes was shared with participants using a one-page document to ensure that the findings were valid. During the member checking or “recycling interpretation” process, participants were asked to e-mail comments to the research coordinator relating to data interpretation to improve credibility of the findings (Crabtree & Miller, 1999). Specifically, participants were asked to provide feedback about the study investigators’ interpretation of the findings and to add comments if they believed more clarification was needed or if this summary did not accurately reflect their opinions. Three study participants responded via e-mail and agreed with the identified themes. No responses were received from the remaining study participants.
Characteristics of the Sample
All of the book chat participants were women and held a variety of positions in the LTC home from frontline staff to administrative roles (Table). The majority of participants (36%) were personal support workers (PSWs). The average number of years worked in LTC for all participants was 8.5 (SD = 5.16 years). Eighty-two percent of participants had previous specialized training in dementia care such as gentle persuasive approaches, PIECES training, and U-First training (Advanced Gerontological Education, 2014; Alzheimer Society of Ontario, 2011; PIECES Collaboration Office, n.d.). Sixty-four percent of participants were older than 46.
Characteristics of The Study Sample (N = 11)
Results of Open-Ended Questions
In general, participants reported positive comments about the book chat on Still Alice and how it influenced their attitudes and perceptions toward dementia. Specifically, they stated that the book chat (a) improved their understanding of challenges faced by individuals with dementia, (b) improved their understanding of family involvement while caring for someone with dementia, (c) improved their knowledge and skills about caring for someone with dementia, (d) contributed to a greater appreciation for personhood in their practice, and (e) increased their empathy for caring for residents with dementia and their family members.
For example, participants described how the novel allowed them to obtain a better understanding of the challenges faced by residents with dementia. Moreover, the first-hand glimpse of Alice’s struggles in the novel gave participants the opportunity to follow Alice’s emotional journey:
I have a better idea of how the person with dementia is feeling. How frustrating the person must feel.
The first person perspective was useful, especially how Alice’s perspective changed throughout the book.
Participants also commented on how Still Alice provided concrete examples of obstacles that individuals diagnosed with dementia must face on a daily basis. Illustrations of these real-life challenges were said to influence participants’ perceptions of the disease:
The examples that were shown in the book (e.g., a mat at the front door looked like a hole) were very helpful and changed my perceptions.
Another recurring theme was the participants’ perceptions of family involvement in relation to dementia care, as the novel depicted various ways in which members of Alice’s family coped with the diagnosis. In Still Alice, some family members withdrew from Alice, whereas others became more involved with her care. Participants commented that the novel increased their understanding of family situations:
I have learned to be less judgmental of the family situation.
In addition to changes in perceptions and attitudes, participants described how this in turn influenced their practice when providing care to residents with dementia. Participants described a gain in knowledge from reading Still Alice. Participants believed they had a better understanding of the disease process, as well as the personal experience, which translated into improvements in their care practice:
More insight into the mind and knowledge of the fears has helped me in my practice.
Participants stated how their new knowledge gained from the book chat gave them greater confidence in managing residents with dementia:
Reading this book gives you the tools to take care of people with dementia.
I feel I have a stronger background to respond the way I feel I should respond.
Some participants elaborated on how the novel influenced their practice by providing specific techniques they planned to use in their future care of residents with dementia:
I learned slower is faster with people with dementia.
We as caregivers need to go in with patience and understanding.
Furthermore, participants achieved a greater appreciation for the concept of personhood, and how these values can be incorporated into daily practice. Participants stated that in their future practice, they will try to understand every aspect of the individual to better understand decisions made surrounding care preferences and to improve care services.
I try hard to get to know the person, not the dementia. It has made me look at the family and life before.
Treating people with dementia as a whole person—it also helps you understand the decisions that the family members make.
Finally, several participants commented on how Still Alice increased their empathy when caring for residents with dementia. Participants believed they were better able to recognize and understand emotions experienced by individuals with dementia, such as fear and frustration (previously evidenced in the first and fifth quotes). Moreover, some participants imagined themselves as members of Alice’s family, demonstrating the ability of participants to place themselves in the shoes of a family member whose loved one is experiencing dementia and trying to understand their experience:
It makes you think it can happen to a loved one.
The findings of this study shed light on the influence of a book chat intervention on the perceptions and attitudes of staff with regard to dementia. These results are important, as they offer LTC homes alternative methods of effectively educating staff on dementia care. It also addresses issues of perceptions and personhood, which generally are not the subject of education in LTC homes. The use of guided reflection, which is a common aspect of book chats, was key to promoting positive outcomes of the book chat in that it engaged staff in critical enquiry to question and challenge some of their attitudes and perceptions about dementia care (Johns, 1996).
For example, participants commented on how the book helped them understand what it is like to have dementia. It showed the participants the importance of using empathy, the significance of personhood, and the value of being respectful. For the resident, a slow decline into dementia is frustrating and debilitating. Health care providers often witness this as agitation and resistance to care (McGilton, Sidani, Boscart, Guruge, & Brown, 2012).
This newfound understanding may be able to lead to changes in staff care behaviors that can help calm the resident, resulting in a better care environment. A study by McGilton et al. (2012) showed that when staff used relational behavior, they were able to interact more positively with residents. Conversely, staff who did not use relational behavior had residents who were more resistant to care (McGilton et al., 2012). Book chat participants noted in the survey answers the need for patience and understanding when caring for residents with dementia, and many indicated that they will incorporate this into their care practices.
The open-ended questions also revealed that the book chat helped the participants understand the importance of engaging in person-centered care to provide the best care possible. A study by Edvardsson, Fetherstonhaugh, and Nay (2010) found that staff, family, and residents described person-centered care as knowing the person, welcoming family, providing meaningful activities, being in a personalized environment, and experiencing flexibility and continuity. Book chat participants reflected on some of these same areas, stating how it is important to “get to know the person not the dementia,” and “caregivers need to go in with patience and understanding.”
Participants believed that the book chat positively influenced their perceptions of family involvement in relation to dementia care. Our findings demonstrated heightened awareness of the judgments staff make about family members. The book chat helped the participants understand that every family member copes differently with his or her loved one’s dementia, and that it is important not to judge family members but instead talk with them about their loved one and understand their perspective. Changing staff’s perceptions of and approach to interacting with families can help improve staff-family relationships. In an Australian study, improving staff-family relationships was shown to reduce conflict, improve work environment, relieve work pressure on staff, and decrease negativity and frustration among staff and family members (Bramble, Moyle, & McAllister, 2009). By increasing knowledge and understanding, there is a potential to develop a more positive environment and better, evidence-based dementia care (Bramble et al., 2009).
It is also noteworthy that the book chat increased participants’ confidence in providing dementia care according to analysis of the open-ended responses. Hughes, Bagley, Reilly, Burns, and Challis (2008) found that although nursing home staff had a reasonable knowledge of dementia, staff had lower confidence in managing difficult behaviors. In-service training is currently one of the main training methods used in LTC. In-service training involves didactic learning and has been shown to be largely unsuccessful (Hyer & Ragan, 2003). Knowles’ (1950) widely accepted adult learning theory states that adults prefer self-directed learning. He also asserts that adults learn more effectively through experiential techniques, such as discussion or problem-solving, than through passive listening (Knowles, 1950).
The literature documents other training techniques that have been successfully used to increase staff education on dementia using Knowles’ principles of adult learning. For instance, O’Connor, Abbott, and Recoche (2012) used drama to teach important messages surrounding palliative care. Another study used a person-centered approach, specifically using storytelling to further appreciate the concept of personhood (Clarke, Hanson, & Ross, 2003). Holding a book chat, which incorporates principles of adult learning, can be seen as a more effective training strategy in LTC that serves to increase staff confidence in managing residents with dementia.
Book chats are relatively low-cost events, with the largest cost attributable to purchasing the novels to distribute to staff. If held over the lunch hour, like traditional “lunch and learns,” the feasibility of holding such a discussion could be improved. Another key player in the planning of the book chat was a representative from the local Alzheimer Society. Her experience in preparing similar events and first-hand knowledge of the obstacles faced by individuals with Alzheimer’s disease proved to be invaluable.
Implications for Nursing Practice
These study findings have implications to gerontological nursing practice. As previously mentioned, the literature demonstrates that staff with more negative attitudes toward dementia have less work satisfaction and increased job turnover. Consequently, these study findings are relevant to gerontological nursing practice because with the current shortage of RN staff in LTC, staff training aimed to address attitudes toward dementia could be seen as a way to retain nurses by increasing their work satisfaction (Sharkey, 2008). Moreover, nurses, with their high-level of training and their vast role in LTC including coordinating resident care, interacting with families, and managing the interprofessional team, would be ideal facilitators for leading the book chat discussion. Their insight into the various aspects of dementia care in LTC would also enable them to serve as an educator if staff, family, or residents wished to partake in such an event.
A limitation of this study was accessibility to participants, resulting in a small sample. Generalizability of the study findings is limited by participants volunteering to partake in the book chat. A greater buy-in from administrative staff would encourage staff attendance. Other limitations include the pilot of the book chat in only one LTC home, the use of a two-question survey, and that the longer-term effect of this intervention was not assessed. In addition, given that participants were asked to read the novel prior to the book chat, it is possible that individuals with a lower level of fluency, and therefore a lower level of education, did not attend the event, biasing the results. Although book chats appear to be beneficial for some staff, they may not be helpful for all. Consequently, other creative means of helping staff better appreciate the experience of dementia need to be used. Despite these limitations, the above findings represent interesting pilot data. Future research using a more rigorous methodology is required to assess the relationship between reading the novel, the impact of the book chat itself, and its effect on staff attitudes and perceptions toward dementia.
The findings from this study contribute to our understanding of staff attitudes and perceptions toward dementia care in LTC. Reading and holding a book chat is a creative approach to allow staff the opportunity to reflect on the care given to residents with dementia. Participants believed that the novel taught valuable lessons, such as understanding what it is like to have dementia and to be nonjudgmental toward family members involved in their loved one’s care. Participants also stated they had a greater understanding of the importance of using empathy and the value of personhood with regard to caring for residents with dementia. A book chat creates an environment to discuss, learn, and share experiences. By creating innovative learning opportunities, knowledge about dementia care can potentially greatly benefit staff, family, and residents.
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Appendix: Tips for Planning a Still Alice Book Chat
Step 1: Contact your local Alzheimer’s Society to see if someone is available to facilitate a Still Alice book chat
Community partners can be very helpful in supporting educational events. The Alzheimer’s Society has expertise in dementia and can support learners with additional materials and inform participants of other educational opportunities.
Step 2: Find Still Alice books or a way for potential participants to access the book
It is important to have access or to provide staff with a list of ways they can access books. Your long-term care (LTC) home may want to purchase books and have them available through the recreation department. You may also want to: contact your local library to see if they have copies or see if a local bookstore will donate some copies to your home. Amazon.com® as well as other online bookstores have used copies available for a few dollars per book.
Step 3: Plan a timeline for the event
Timelines are important to make this event successful. Consider the following components and timeframes when creating your own timeline.
Contact your local Alzheimer’s Society to determine if they are able to be involved with the book chat and when they are available (3 weeks)
Create a timeline that takes into consideration the other activities and training sessions taking place in the LTC home (1 week)
Advertise the training, for example, place flyers around the LTC home, or send an e-mail to all staff (3 weeks)
Provide participantswith information on how to access the book and give participants enough time to read the book (6 weeks)
Hold the book chat (1 or 2 dates and times)
Continue the discussion (ongoing after the chat)
Step 4: Create internal advertisements for the event
Ensure to include: date, time, location, who is invited, and facilitator. To recruit participants, consider holding the event over the lunch hour to replace traditional “lunch and learns.” Administrative buy-in is essential for good attendance.
Step 5: Keep the discussing going
Due to the work schedule in LTC homes, all staff may not be able to attend the book chat. Consider activities that will encourage staff to continue to talk about the book. Have staff “leaders” talk about the event in various interprofessional team meetings (e.g., staff meetings, palliative care team meetings).
- Genova, L. (2009). Still Alice. New York, NY: Pocket Books.
Characteristics of The Study Sample (N = 11)
| <25||1 (9)|
| 25 to 35||2 (18)|
| 36 to 45||1 (9)|
| 46 to 55||3 (27)|
| >55||2 (18)|
| Unknown||2 (18)|
| PSW||4 (36)|
| RPN||1 (9)|
| RN||1 (9)|
| Administrator||1 (9)|
| Life enrichment||1 (9)|
| Social worker||1 (9)|
| Other||2 (18)|
|Experience in LTC (years)|
| ≤5||2 (18)|
| 6 to 10||7 (64)|
| 11 to 20||1 (9)|
| >20||1 (9)|
|Previous dementia training||9 (82)|
| Full-time||4 (36)|
| Part-time||4 (36)|
| NA||2 (18)|
| Unknown||1 (9)|