Journal of Gerontological Nursing

Feature Article 

Providing Delirium Education for Family Caregivers of Older Adults

Shannon E. Keyser, MSc, RN; Diane Buchanan, PhD, RN; Dana Edge, PhD, RN

Abstract

Using the Knowledge to Action Process, an education session was developed to teach families of older adults about delirium. Seven sessions were held with 16 eligible participants. A significant increase in delirium knowledge was found following education, and many participants believed others should receive similar education. At follow up, most participants were able to recall information related to risk factors and signs of delirium. Families of older adults form a common communication link for their relatives between health care providers across settings; providing education to family caregivers may in part provide a solution to the problem of delirium.

Abstract

Using the Knowledge to Action Process, an education session was developed to teach families of older adults about delirium. Seven sessions were held with 16 eligible participants. A significant increase in delirium knowledge was found following education, and many participants believed others should receive similar education. At follow up, most participants were able to recall information related to risk factors and signs of delirium. Families of older adults form a common communication link for their relatives between health care providers across settings; providing education to family caregivers may in part provide a solution to the problem of delirium.

Delirium is characterized by acute onset, inattention, disorganized thinking, and an altered level of consciousness (Inouye et al., 1990). In older adults, delirium has been associated with increased risk of death, institutionalization, and hospital admission, and has even been linked to the development of dementia (Andrew, Freter, & Rockwood, 2006; Inouye, Rushing, Foreman, Palmer, & Pompei, 1998; Rockwood et al., 1999; Vilalta-Franch, Llinas-Regla, López-Pousa, & Garre-Olmo, 2009). Additionally, research has shown that caregivers of a person with delirium can also be adversely affected. Two studies have shown that caregivers frequently experienced high levels of distress when their family member became delirious (Breitbart, Gibson, & Tremblay, 2002; Morita, Hirai, Sakaguchi, Tsuneto, & Shima, 2004). The purpose of this study was to examine whether a knowledge translation product for families of community-dwelling older adults would increase knowledge related to prevention and identification of delirium.

Background

Prevalence rates of delirium in long-term care are estimated at up to 57.9% (Cacchione, Culp, Dyck, & Laing, 2003; Culp et al., 1997; Fries, Mehr, Schneider, Foley, & Burke, 1993; Laurila, Pitkala, Strandberg, &, Tilvis, 2004; Sandberg, Gustafson, Brannstrom, & Bucht, 1998; Voyer, Richard, Doucet, Danjou, & Carmichael, 2008). In the community, studies have shown that delirium is also prevalent in those with dementia; in this population, prevalence rates range between 10% and 21.6% (Fick, Kolanowski, Waller, & Inouye, 2005; Folstein, Bassett, Romanoski & Nestadt, 1991; Lerner, Hedera, Koss, Stuckey, & Friedland, 1997; Rahkonen et al., 2001; Vilalta-Franch et al., 2009).

In all settings, family members of older adults are likely to be in an optimal position to identify changes in behavior from baseline, thus playing an important role in detection of delirium. Two studies were found in the literature whereby interventions were undertaken to educate families of older adults about delirium (Gagnon et al., 2002; Rosenbloom-Brunton, Henneman, & Inouye, 2010). Gagnon et al. (2002) were able to show that families of older adults are not aware of the nature of delirium or how to identify it. Through an educational intervention, the participants’ knowledge was increased (Gagnon et al., 2002). Rosenbloom-Brunton et al. (2010) found that it is feasible to engage families in the prevention of delirium in an acute care setting. Delirium is prevalent in all health care settings, especially among those with dementia. However, both studies took place in hospital settings; to date, no studies have been completed in the community setting. Whether or not an educational intervention for families of older adults would be effective in increasing knowledge about prevention and identification of delirium in the community setting is unknown.

One way to prepare family members to aid in the prevention and detection of delirium is to provide them with best practice knowledge regarding the symptoms of delirium, as well as factors related to onset. Knowledge translation tools (or products) include short, easy-to-read laminated materials, toolkits, brochures, or educational sessions that translate best practice knowledge so health professionals and others are able to apply this knowledge in their everyday work and lives. The Knowledge to Action Process created by Graham et al. (2006) is a conceptual framework that clarifies knowledge translation. Education of family members based on the Knowledge to Action Process could be beneficial in the prevention and identification of delirium.

Research Questions

To help fill the gap in the current research, this pilot study set out to answer the following questions:

  • What type of knowledge translation product related to delirium would best suit the needs of family members of older adults?
  • How can the knowledge translation product best be disseminated to family members?
  • Is the resulting knowledge translation product effective in increasing family members’ knowledge related to prevention and identification of delirium?

Method

This pilot study had three phases: focus groups, educational sessions, and follow-up interviews. The methods and results for the first phase have been published elsewhere (Keyser, Buchanan, & Edge, 2011). The Figure provides an overview of the three phases.

Overview of the study.

Figure. Overview of the study.

Ethical Considerations

Ethics approval was received from the University’s Research Ethics Board. Informed consent was obtained from the participants before enrollment in each study phase. There was no known harm that could come to the participants from participation in this study. To ensure confidentiality, any recorded conversations and their transcriptions were stored on a secure computer and only accessible by the principal investigator (PI, S.E.K.).

Phase 2

Research Design. For this phase of the study, multiple education sessions, developed from focus groups in Phase 1, were held with families of community-dwelling older adults. It was the goal of this study to recruit 20 or more participants. A questionnaire and a pretest-posttest were used to assess change in knowledge, as well as to evaluate the education sessions.

Sampling Procedure. Participants in this phase were recruited through various convenience sampling methods. Most participants were recruited at regularly occurring meetings at an organization in Kingston, Ontario and by word of mouth.

Inclusion criteria were: the participant must be an adult (18 or older) and must be in frequent contact with the older adult either through visiting or speaking to him or her one or more times per week. Additionally, the older adult had to be 65 or older. Paid health care workers hired to provide care were excluded. To control for any background knowledge among participants who were also health care professionals, these individuals’ knowledge scores would be analyzed separately to determine whether there was a difference when compared with participants in other occupations.

Participants. Six education sessions were held from October 2009 to April 2010 with 25 total people attending the sessions. Three people were excluded from data analysis as they did not have an older family member but still wanted to attend the session; 2 participants refused to complete either the pre- or posttest; and 4 participants did not return the education evaluation questionnaire following the session. This left a total of 16 participant responses for the questionnaire thematic analysis.

Education Session Package. Each participant was given a package of documents to supplement the education provided. The package included consent forms, a knowledge pre- and posttest, a questionnaire, a reference card, and two pamphlets related to the material presented. With permission, multiple resources from the Vancouver Island Health Authority (2009, 2011) were used for this phase, as they contained the most relevant information for the purposes of this study and were targeted toward a lay audience.

Education Session. The education session contained information related to prevention and identification of delirium, as well as what to do if a family member becomes delirious. Each education session was delivered in a similar manner by the PI using a session guide and was scheduled to last 1 hour. The knowledge pretest was administered immediately prior to the start of the session, and the posttest was administered immediately following the session and included the questionnaire. An envelope and postage was provided for participants who wished to return the questionnaire by mail.

Data Analysis. There were 11 complete knowledge pretest-posttest pairs. Scores from the knowledge test were compared using the Wilcoxon signed-rank test at an alpha level of 0.05. Since the sample was small, the PI completed the calculations by hand. Information from the questionnaire was analyzed thematically by the PI to evaluate the education session.

Phase 3

Research Design. For Phase 3 of the study, semi-structured telephone or e-mail interviews were conducted with participants to further evaluate the education session.

Sampling Procedure. In Phase 2, all participants were asked to provide contact information if they were willing to complete a follow-up interview 4 to 6 weeks after the education session. Participants were contacted by the PI 4 weeks following the session. If the participant was not reachable at that time, the PI tried again each week for up to 6 weeks after the session or until contact was made.

Participants. A total of 6 participants consented to be contacted by telephone and 7 by e-mail. Of these, 5 were successfully contacted by telephone; none of the participants returned the e-mail questionnaire.

Interviews. Each telephone interview was conducted using an interview guide created by the authors and was digitally audiorecorded. Topics covered included knowledge of delirium, strengths and weaknesses of the education session, usefulness of the materials given to participants, and whether they thought other family members should receive a similar session about delirium. Interviews lasted approximately 10 to 20 minutes.

Data Analysis. Each interview was transcribed verbatim and analyzed thematically by the PI to further evaluate the education session.

Results

Phase 2

In this phase of the study, participants were asked to complete a knowledge test before and after the education session, as well as an evaluation questionnaire. All participants who completed the questionnaire also completed at least one of the knowledge tests. All of these results are presented below.

Participants. None of the participants had an occupational background in health care. Five of them had also participated in the focus groups from Phase 1. Ten participants lived with their older family member; of the other participants’ older family members, 4 lived in nursing homes, 1 lived in a retirement home, and 1 lived alone in his or her own home. All of the participants who did not live with their older family member were in contact with him or her at least once per week.

Knowledge Test. Each participant’s score on the multiple choice test was summed for a potential score ranging from 0 to 5. A higher score suggested greater knowledge of delirium. A total of 11 participants completed the knowledge pre- and posttests. Five participants completed only the pretest and were dropped from the analysis. The median score on the pretest was 2; the median score on the posttest was 3. Using the Wilcoxon signed-rank test, this difference was found to be statistically significant when W = 0, p < 0.05.

Evaluation Questionnaire: Retained Knowledge. Sixteen participants completed the education evaluation questionnaire following the session. Three answers stood out when participants were asked to name the most important thing they had learned:

  • Four participants stated that delirium had a rapid onset.
  • Four participants described various risk factors for delirium; for example, “Knowing the list of things that could put them at risk (or at the very least compromise their abilities) ex. Meds—such as Gravol® [dimenhydrinate], pain meds, sleeping pills.—hydration, sleep, hearing, vision, stress, blood sugar, infections etc.”
  • Three participants said they now knew what they needed to do if their family member became delirious.

Evaluation Questionnaire: Strengths/Weaknesses of Session. When participants were asked what else they would like to learn about delirium, most said they wanted to learn more about the causes of delirium. The same number of people stated the session was very informative as it was. When asked if there are any additional handouts they thought would be useful, 3 participants said they did not think they required any additional material. Two said they would like to have additional materials related to more specific causes and prevention techniques. For example, one participant requested a “list of meds that may be problematic and the reasons why they are of concern.”

Evaluation Questionnaire: Self-Efficacy. A total of 8 participants believed that if their older family member became delirious they would be able to recognize it. One participant stated, “Yes, I feel the checklist is very helpful and I will know what situations I need to be more alert, e.g., operation, stress etc.” Three participants were unsure if they would recognize delirium: “I’m not sure as I am in the early stages of Alzheimer’s with my husband and there is so much to learn.”

Evaluation Questionnaire: Value of Session. Ten participants believed it would be important for other families of older adults to learn about delirium. Three stated it would be important so that they would have a better understanding of what was happening to someone who was experiencing delirium. Two participants thought it would be helpful so families could differentiate delirium from dementia. One person stated, “There can be a lot of confusion especially when the dementia is involved.” Three participants thought it would be important for families to know how to identify delirium “because the symptoms too easily be dismissed or mistaken [sic] for something else.”

Phase 3

Follow-up interviews were completed with each participant who consented to be contacted in Phase 2. All participants were contacted between 4 and 6 weeks after the education session they attended.

Retained Knowledge. Overall, participants had retained some of what they had learned from the education session. Four participants were able to recall information related to risk factors for delirium, as well as signs of delirium. When asked about risk factors for delirium, one participant stated that “infections, medications side effects, worsening of illness, dehydration, malnutrition…um grief and stress” could put someone at risk for delirium.

Strengths/Weaknesses of the Session. In the interviews, participants described a variety of strengths and weaknesses of the education session. Three participants stated there was nothing else they would have liked to learn about delirium. One person had made delirium prevention practices part of the routine for the older family member. Four participants thought the reference card was a good tool. One participant stated that, “I think it [the reference card] is good because… if you are aware of someone having it, you could just grab that off the fridge door.” Four participants were unsure of any additional material they would have liked to receive. Three participants stated that having longer education sessions would be an area for improvement. One participant stated:

I think the only thing was, and this happens to us [participants] all the time, for most sessions, is we get going in a discussion or people have questions and we get feel like cut off or you get cut off…. It’s really healthy when the group starts to say, hey this happened and this happened, because it makes it more meaningful.

Two additional participants said it would be an improvement to have more discussion and time for questions. One participant in Phase 2 suggested that PowerPoint® may have been a helpful tool to use during the session. When participants were asked their opinion on this in Phase 3, three of them did not know what PowerPoint was. After an explanation was given, 3 participants thought it might be helpful.

Self-Efficacy. Participants were asked if they thought they would be able to determine whether someone had delirium. Two participants thought they would be able to recognize delirium. The other 3 thought they would be able to recognize delirium in someone with whom they were close but they were not certain of this. One participant stated:

If I knew how they normally are, had a comparison, yes…. I might suspect if I didn’t know and I saw some extreme behaviors I might suspect it and then suggest, but if I knew the person it would probably be quite, um, obvious.

Value of Session. Participants were asked whether they had used any of the materials they were given. Two participants had not used any of the materials, and 2 had filed them away for future reference. Since the education sessions, no participants had witnessed delirium in anyone they knew. When participants were asked if other caregivers should receive delirium education, all of them said yes. Two participants thought it would be helpful for family to learn the difference between delirium and dementia. One participant stated, “Well, maybe they wouldn’t be hasty to say, well oh she’s got Alzheimer’s and they’ll sort of watch and get them to the doctor.”

Summary

In Phase 1 of this study, useful data were gathered from focus groups to build an education session to meet the needs of this population. In Phases 2 and 3, the session was conducted and evaluated. Overall, the education session was well liked by participants. Important feedback was received from participants to improve the education session.

Discussion

In the following sections, the discussion addresses each phase of the study and examines the findings as they relate to the Knowledge to Action Process and the literature.

Phase 2

Recruitment for the education session was the greatest barrier to this study. Originally, the goal was to recruit 20 participants. Although 25 people attended, only 16 people agreed to participate and qualified for the final analysis. In addition, due to time constraints during the education sessions, it was not possible to allot time for participants to complete the questionnaires at the end of the session. This led to many participants not returning the questionnaire or knowledge test.

There are many potential barriers to recruiting families who provide care for an older family member. Participants in the current study listed some barriers, especially related to the issue of time. Families caring for an older adult are busy, and if they do not understand the applicability of the research to their unique situation, they may choose not to participate. The general lack of knowledge of delirium in families of older adults may, in part, explain why recruitment was an issue for this study.

Results from Phase 2 showed that half of the participants believed they would be able to identify delirium in a family member. In the Phase 3 interviews, the proportion of participants who were certain of their abilities decreased. Whether or not confidence truly does decrease over time would need to be determined in a larger study, especially considering the attrition rate between Phases 2 and 3 of this study and the small sample overall. However, this is still a considerable finding, especially since baseline information gathered from the Phase 1 focus groups suggested there was a lack of understanding of delirium. Additionally, Gagnon et al. (2002) also found that the participants who had received their intervention had a greater perceived competence related to delirium.

The results from the knowledge test show there was a significant increase in the scores from pre- to posttest. However, due to the small sample and lack of a validated knowledge test for this population, whether this increase can be attributed to an actual increase in delirium knowledge cannot be determined. Another limitation of a pre-test-posttest design in an educational intervention is that the pretest may sensitize participants to the intervention and change the way they would have responded to the intervention if there had not been a pretest (Stommel & Wills, 2004). If there were a separate control group, this effect could be controlled. The use of an additional group to control for this effect would have required more time for recruitment and a larger sample.

Most participants believed that other families should be educated about delirium. Similarly, Gagnon et al. (2002) found that participants who received an educational intervention stated more often than those who did not receive any education that all caregivers should receive a similar intervention related to delirium. This suggests that families from both of these studies valued the education they received about delirium. For education sessions such as this one to work in the future, it is essential that families believe delirium education is important.

Another point that participants raised was that the session was not long enough, and consequently, there was not enough time for discussion and sharing of experiences. Participants may have benefitted from additional discussion about the reality and severity of delirium.

Phase 3

In the third phase of this study, only 5 participants were successfully contacted for follow up, thus limiting the generalizability of the results. Four of the five participants were able to describe delirium, which suggests they had retained some of what they had learned in the weeks following the session. It was interesting to note that one participant had made delirium prevention part of routine care for the older family member. It would have been interesting to know if any other participants from Phase 2 had done this as well. Allowing a longer time for follow up and increased participant retention may have produced additional useful results. For example, none of the participants had interacted with anyone with delirium since the education session. With a longer follow up, they may have encountered delirium while caring for their family member and would have been able to describe whether the intervention had prepared them for this.

Knowledge to Action Process

In this study, the focus was on the action cycle of the Knowledge to Action Process. In the first phase of the action cycle, a problem needs to be identified. Through the use of focus groups in Phase 1, it was determined that families of community-dwelling older adults lacked an understanding of delirium. The focus group was also used to gain insight into how to tailor the intervention to families of older adults and assess barriers to implementation of an education session.

For Phase 2 of the study, existing educational resources were gathered and appraised for their level of appropriateness for a lay population, and the best available resources were chosen. A review of the literature was completed to ensure families would be educated using up-to-date information on prevention and identification of delirium. This gathering and synthesis of the available research and resources would represent the identification, review, and selection of knowledge stage from the action cycle of the Knowledge to Action Process. Information given to the participants was adapted to their needs and cultural context, which is an important stage of the action cycle. Finally, questionnaire responses were used to further tailor the intervention to the needs of future participants. The knowledge test was used to determine whether participants had acquired knowledge following the intervention.

The purpose of the third phase of this study was to receive additional feedback to tailor the intervention to future participants, monitor knowledge use, and evaluate outcomes. It is important to ensure that participants perceive there is benefit to adopting knowledge translation products (Berwick, 2003). The participants in this study thought it would be important for other caregivers to learn about delirium, suggesting they valued the education. To further evaluate this session, it would have been beneficial to understand whether or not participants applied what they had learned and why they chose to or not. Additionally, further research will be needed to determine whether knowledge use is sustainable.

Implications for Practice

Educating nurses about delirium is a vital step in the future education of families related to delirium. Nurses in all settings often provide health education to families of older adults. Organizations have recognized the need for the integration of delirium education, including the Registered Nurses Association of Ontario (RNAO) and the Canadian Coalition for Seniors’ Mental Health (CCSMH). The CCSMH (2006) released national guidelines pertaining to the assessment and treatment of delirium in the older population. The CCSMH has suggested that health care teams include families who are caring for a person with delirium and that families be provided with education concerning this topic. It is this alliance between health care providers and families that would improve care of older adults with delirium. In addition, the RNAO (2010) has a best practice guideline titled Screening for Delirium, Dementia and Depression in Older Adults. Both of these publications are excellent tools for nurses to begin enhancing their knowledge of delirium. It is important for the guidelines in these documents to be incorporated into nursing practice through the use of knowledge translation in order to improve prevention and identification of delirium in all practice settings.

As nurses, we must use the resources available to us, but we must also remember not to overlook the insight and skills that families of older adults can contribute to client care. It is likely that nurses will find themselves in situations where they are not familiar with their client, and for a diagnosis of delirium to be made confidently, it is essential to have as much information as possible related to baseline behavior and cognition. In any practice setting, families of older adults have the potential to contribute to nurses’ understanding of the client for whom they are providing care. If nurses can establish a partnership with the clients’ families, this will facilitate recognition of delirium in these clients.

As mentioned above, the educational materials used in this study were derived primarily from the Vancouver Island Health Authority. Its website offers delirium resources for clinicians, as well as resources suitable for a lay audience. It also offers a wide variety of resources, including pamphlets and reference and assessment tools. Additionally, other organizations, such as the RNAO and Hamilton Health Sciences, offer resources for both clinicians and lay people. It is important that we, as nurses, make an effort to incorporate client education related to delirium into our practice, with the help of the educational tools available.

Implications for Future Research

To our knowledge, this study is the first to design a delirium education product for families of community-dwelling older adults. Despite the small sample, valuable lessons can be learned for future work. Future studies could work to improve the education session developed in this study, as it is important for this type of product to be disseminated. To increase sample size, it may be beneficial to partner with organizations that already work with families of older adults to connect with their membership. Sessions should be made longer to facilitate discussion among participants, as learning through the sharing of experiences will make delirium seem more relevant to the families and hopefully solidify what they had learned. Greater numbers of participants will be needed to determine whether an education session such as this is enough to increase families’ delirium knowledge. Also, it would be beneficial to conduct a longitudinal study to determine whether educating families about delirium decreases rates of delirium and/or increases identification of delirium.

Conclusion

Families of older adults form the common communication link for their relatives between health care providers across all settings. They possess invaluable knowledge related to the baseline behaviors of their loved ones and are in an ideal position to identify changes in these behaviors that could be a result of delirium. Increasing prevention and identification of delirium will be even more necessary in the coming years, with the growing population of older adults. Providing education to family caregivers may help provide a solution to this problem.

References

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Keypoints

Keyser, S.E., Buchanan, D. & Edge, D. (2012). Providing Delirium Education for Family Caregivers of Older Adults. Journal of Gerontological Nursing, 38(8), 24–31.

  1. Using the Knowledge to Action Process, an education session was developed to teach families of older adults about delirium.

  2. There was a significant increase in delirium knowledge among participants following the education session, and many participants believed others should receive similar education.

  3. At follow up, most participants were able to recall information related to risk factors and signs of delirium.

Authors

Ms. Keyser is Supervisor, Inner City Health, Carefor Health and Community Services, Ottawa, and Dr. Buchanan and Dr. Edge are Associate Professors, Queen’s University, School of Nursing, Kingston, Ontario, Canada. This research was completed while Ms. Keyser was attending Queen’s University.

The authors have disclosed no potential conflicts of interest, financial or otherwise.

Address correspondence to Shannon E. Keyser, MSc, RN, Supervisor, Inner City Health, Carefor Health and Community Services, 760 Belfast Road, Ottawa, Ontario, Canada K1G 6M8; e-mail: shannon-keyser@hotmail.com.

Received: May 03, 2011
Accepted: February 13, 2012
Posted Online: July 15, 2012

10.3928/00989134-20120703-03

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