Table of Contents. Abstract of Masters Paper...2. Abstract...4. Systematic Review...5. References Tables and Figures Abstract...

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2 Table of Contents Abstract of Masters Paper...2 Systematic Review Abstract...4 Systematic Review...5 References Tables and Figures...21 Original Manuscript Abstract...28 Original Manuscript...29 References...42 Tables...46 Appendix Appendix Appendix

3 Master s Paper Abstract Alzheimer s disease and related dementias (ADRD) are growing public health problems as the population of the United States ages and we struggle to find ways to provide optimal care for people with dementia, and support for their informal caregivers. These nonprofessional caregivers often suffer from depression, neglect their own health, and feel overwhelmed as a direct result of caring for their relative with dementia. Interventions and resources are being developed with the goal of reducing the burden of disease suffered by caregivers and improving their caregiving skills. One of the goals of many of these interventions is to improve caregivers self-efficacy. Self-efficacy is one s confidence in achieving a desired result or goal, and it is an important component to caregivers ability to care for themselves and others. The purpose of this master s paper is to better understand how we can measure and improve self-efficacy in caregivers of people with dementia. As technology continues to become more assessable to individuals, videos are thought to be a promising method to help caregivers improve their self-efficacy. We performed a review of Pubmed and CINAHL databases covering January 1, 1989 to Feb 1, 2014 to better understand the effectiveness of videos in improving self-efficacy of caregivers of people with ADRD. We also did hand searches of three recent systematic reviews. Seven studies were identified, and their quality was assessed using the guidelines set forth by the Agency for Healthcare Research and Quality and the Effective Health Care Program. The seven studies showed a small benefit in using videos to improve caregiver self-efficacy, but the level of uncertainty was high due to the overall low quality of the studies and high potential for bias. Higher quality, large randomized control trials are needed to elucidate the potential benefits of using videos to improve caregiver self-efficacy. 2

4 Additionally, our review of the literature revealed few studies assessing caregiver s confidence related to medical problems and events. Therefore, we created a self-efficacy measure called the Caregiver Confidence in Symptom Management to fill this gap in the literature. The measure was implemented and evaluated during the pilot test of the Alzheimer s Medical Advisor (AlzMed) project (R01 NR014199), and included expert panel input, cognitive interviews, and psychometric evaluation including test-retest reliability. The measure showed strong face validity, but test-retest reliability showed several individual items had weak reliability. As an aggregate, however, the measure performed well. The final measure contains 25 items that ask questions about caregiver s confidence in knowing enough, taking care of, and deciding what to do about five categories of medical events. It also asks questions about understanding what to do and enacting responsive behavior. The measure will be used, evaluated, and further refined in the larger AlzMed study, which will include a more diverse sample of caregivers. 3

5 Are videos an effective way to increase self-efficacy or confidence in caregivers of people with Alzheimer's disease and related dementia? Abstract Objective: To assess the usefulness of videos as an effective tool to increase self-efficacy or confidence in caregivers of people with Alzheimer s disease and related dementia (ADRD). Methods: We performed a literature search of Pubmed and CINAHL databases covering January 1, 1989 to Feb 1, We also did hand searches of three recent systematic reviews on interventions specifically for caregivers of people with ADRD. Seven studies were identified, and their quality was assessed using the guidelines set forth by the Agency for Health Care Research and Quality and the Effective Health Care Program. Results: The overall body of evidence was weak with only one study of high quality. The studies were highly heterogeneous in study design and sample size, but several of the studies used videos in similar ways and measured similar outcomes related to self-efficacy and mental health. Even in studies where self-efficacy improved as a result of the intervention, the effect size was small despite being statistically significant. Many of the studies also suffered from a significant risk of selection bias, a lack of directness, and a lack of long term outcome data. Conclusions: Videos may be an effective tool to increase self-efficacy, but the overall clinical significance of available studies and lack of strong evidence support the conclusion that there is insufficient evidence to assess the effectiveness of this intervention tool. Higher quality studies that focus on self-efficacy and provide long term outcome data are needed. 4

6 Introduction Currently, an estimated 5.2 million Americans have Alzheimer s disease including one in nine people 65 years and older and one-third of people older than An estimated 15 million Americans provide unpaid care to a person with Alzheimer s disease and related dementia (ADRD), and many of these caregivers develop increased physical and psychological morbidity as a direct result of providing this care. 1,2 In order to improve caregiver wellbeing and reduce the burden of disease, multiple psychoeducational interventions have been developed. These interventions that use education to improve mental health and several others have had some statistically significant benefits in reducing caregiver burden and depression but inconclusive clinical significance according to a recent review by the US Preventive Services Task Force (USPSTF). 3 Despite this uncertainty, a small benefit for such a large burden of disease may justify these caregiver interventions, and researchers are constantly striving to make interventions more effective. Many researchers are utilizing technology as a potential tool to reduce caregiver burden and improve their self-efficacy. Though many caregiver interventions have an emphasis on directly reducing caregiver burden or depression, improving self-efficacy is also an effective target as it moderates caregiver burden and depression. 4,5 In addition, improving self-efficacy can not only improve psychological outcomes in caregivers, but it can improve their communication skills and their ability to provide better care to the care recipient with ADRD. 6 There are many ways in which self-efficacy can potentially be improved. Videos are a versatile educational and psychoeducational tool that can convey messages in ways that written tools cannot. In the education setting, video recording has been shown to help improve competence, enhance communication skills, and provide learning motivation. 7 In addition, 5

7 videos, especially when incorporated online, have the potential to reduce access issues experienced by rural caregivers who often must travel a great distance to participate in assistance programs and research studies. In the past two years, two major systematic reviews have been published on internet based or technology driven interventions for caregivers of people with dementia. 8,9 Both of these reviews came to the same conclusion that despite positive results, the lack of randomized controlled trials and diversity of measured outcomes made it difficult to compare studies or permit strong endorsement of these interventions. As a complement to these systematic reviews, and the one performed by the USPSTF, we examined the literature for dementia caregiver interventions with a video component and the outcome of improved self-efficacy or confidence. Our review sought to answer two questions: Are videos an effective way to increase self-efficacy or confidence in caregivers of people with ADRD? What is the quality of the literature on utilizing videos to improve self-efficacy in caregivers of people with ADRD? Methods Search Strategy We searched PubMed and CINAHL as well as references listed in the reviewed papers. In addition, hand searches of three systematic reviews 3,8,9 were conducted due to the possibility that video interventions may be embedded in larger internet or technology based studies. Major Subject headings (MeSH), thesaurus terms, and key words were all used in the electronic literature search (Table 1). We constructed search categories in four broad areas: video clips, Alzheimer s disease and related dementia, self-efficacy or confidence, and informal caregivers. 6

8 The dates of the literature search were limited to January 1, 1989 to Feb 1, 2014, the day we conducted the initial search. Because self-efficacy is one s belief to succeed in a specific situation, 10 we believed a change in behavior or ability to perform a caregiving task was a potentially important downstream result of a caregiver s change in self-efficacy. For this reason, behavior and skill were two of many key words in our initial search. Selection of Studies Articles selected for this review met the following criteria: 1) The study reported confidence or self-efficacy as an outcome of an intervention; 2) the intervention had a video component that was 3) aimed at informal (nonprofessional) caregivers; of 4) individuals with mild cognitive impairment or dementia. Studies were limited to papers written in English and original papers in peer-reviewed journals. There was no restriction on the methodology used in the articles. Since the primary caregivers of individuals in nursing homes are professionals, studies were excluded if the care recipient was no longer living at home. The video component of these interventions was limited to those with prerecorded videos. Therefore, studies were excluded if the video component focused on interactive-voice-response, synchronous telehealth interventions, fixed home-monitoring technologies, vitals monitoring, or geographic positioning and other location-monitoring. Data Abstraction and Quality Assessment Based on these inclusion and exclusion criteria, the titles and abstracts of the obtained articles were assessed. Full text copies were retrieved of articles that could not be excluded from the abstract alone and were further screened for eligibility criteria. From the remaining articles, pertinent data were abstracted and placed in pre-designed evidence table by a single reviewer (CP). Elements of this table included author, title, study design, participant demographics, video component, and main results (Table 2). These articles were also critically appraised for their internal and external validity based on the guidelines set forth by the Agency 7

9 for Health Care Research and Quality and the Effective Health Care Program. 11 Focusing on the guidelines required domains of risk of bias, consistency, directness, and precision, we assigned each article a quality score of low, moderate, high (Table 3). These scores are consistent with the strength of evidence grades and definitions recommended by the Agency for Health Care Research and Quality. 11 Additionally, clinical significance played an important role in assigning the quality scores to these studies. Elements considered in determining clinical significance included but were not limited to the presence of long-term outcomes (at least 6 months postintervention), statistical power, and effect size. Results A total of 44 titles were retrieved from our search (37 articles from Pubmed and 7 from CINAHL). Based on the inclusion and exclusion criteria, we were able to exclude 10 articles from title alone. Of the remaining 34 potentially eligible articles, 23 were excluded based on a review of their abstract leaving 11 articles for full review. Upon further review, six articles did not meet inclusion and exclusion criteria resulting in a remaining five articles A hand search of the references of these articles revealed one more pertinent study. 17 An additional hand search of three systematic reviews 3,8,9 related to interventions focusing on caregivers of people with dementia revealed another study 18 not found through our initial search. Figure 1 depicts a flowchart of the search results and reasons for exclusion. Of the seven articles included in this review, one was conducted outside of the United States 13 and four were randomized control trials. 12,16-18 The size of the studies varied with a wide range from as many as 299 participants 18 to as small as The majority of participants in these studies were highly educated white females. The longest follow up data from these studies was six months. 13,14 Though we searched for pertinent articles from the last 25 years, the oldest study that met inclusion criteria was published in the year These seven 8

10 studies were also highly heterogeneous in design and varied widely on how much of a role videos played in their intervention. Despite these differences, commonalities could be found in the video components used in these studies as they often used actors to normalize difficult situations the caregiver may face, modeled a certain skill or strategy, and/or provided education. The most common platform for the video component of these interventions was through the internet but one study 12 used a Digital Versatile Disc (DVD). Additionally, the outcomes variables of interest in these seven studies were similar with most of the studies using measures to assess psychosocial outcomes in caregivers such as depression. Critical appraisal of the articles revealed only one study 18 to be of high quality as most studies suffered from a high risk of bias and lack of directness (Table 3). The small sample sizes, lack of diversity in participants, often poor study designs, and lack of long term outcome data were a common problem in the studies in this review. Additionally, the authors often failed to create or maintain equivalence in their study groups. This led to one of several sources of potential bias seen in these studies. An overview of these studies and their quality assessment are described below. Study Description and Analysis In the study by Beauchamp et al., 18 the authors conducted a randomized control trial of 299 employed Americans, 80% white and 27% male, in an internet based multimedia intervention. The intervention group received text and video components that allowed for individualized tailoring, addressed common difficulties, strategies for coping with emotions, and testimonials on being a caregiver. The control group did not have access to this resource. Outcome variables were caregiver depression, anxiety, strain, self-efficacy, coping methods, and views on caregiving. These variables were measured at the start of the 9

11 intervention and 30 days after completion. Multivariate analysis of covariance was completed on the 97.3% of participants with compete outcome measure data. Results showed improvement in all outcomes of interest with the exception of coping methods. Though there was statistically significant improvement shown in self-efficacy (p=0.016), this represented a small effect size with questionable clinical significance. The self-efficacy scale used in this study had the minimum potential score of 7 with a maximum score of 42. Selfefficacy score means in the treatment group were 23.2 pre-intervention and 25.7 postintervention compared to the control group means of 22.7 and 23.5 respectively. The standard deviation of these means ranged from self-efficacy points. This study received a high quality grade. Of those eligible to participate in the study, 90% enrolled which increases generalizability. Additionally, the large sample size and maintenance of randomization strengthened the quality of this study. The authors used valid and reliable measures for their outcome data. The greatest weakness in this study was the one month follow up in that this is unlikely a clinically significant time frame to assess long-term benefits of an intervention. This study would be strengthened if the authors described their randomization process and were able to recruit a higher percentage of males for their study. The second study, Gallagher-Thompson et al 12 was a randomized control trial of Chinese American caregivers living in the area of San Francisco, CA. The 70 participants, 13% male, were assigned to a 12-week intervention of two different DVD based programs with the goal of reducing caregiver stress. The intervention group was assigned a skill building DVD based on cognitive behavior therapy, and the control group was given an educational DVD on dementia. Each group received periodic phone calls and data were collected on outcome variables pre and post-intervention. 10

12 The outcome variables were depression, stress associated with memory and behavior problems, caregiver self-efficacy, and program satisfaction. Using linear regression on the data from the 92% of participants who completed the study, the researchers found greater satisfaction with the skill DVD than the educational DVD. They also noted a greater decrease in stress in those in the skill DVD group. Depression remained the same. Confidence in one s role as a caregiver was measured using a four point likert scale (1=strongly disagree, 4 strongly agree). Study participants averaged a score of 2.25 in both study groups post intervention showing no difference in self-efficacy between the groups and no overall improvement in caregiving confidence. The quality rating for this study is low to moderate. The study benefited from strong randomization, a good control group, and validated measures for their outcome variables. Limitations in sample size and lack of intention to treat analysis weakened the study. Despite having a relatively high internal validity, the external validity was limited by the study participants being all Chinese Americans, highly educated, and mostly female. In Gant et al 16, this 32 person, caregiver study had a source population of men living in the Midwest United States. They were randomized to one of two distance-based interventions designed specifically to address the caregiving needs of men. The intervention groups received a video intervention which included behavioral strategies of caregiving plus a workbook and weekly telephone coaching. The control group received biweekly phone calls and an educational booklet. Outcome variables were assessed pre and post-intervention. The measures assessed self-efficacy, emotions regarding caregiving, and a balance measure where they assessed for suicidality. There was a 12.5% differential drop-out rate in this study, but the authors used intention to treat analysis of covariance. There were no reported suicidal thoughts by participants in the study. Though the authors found statistically significant 11

13 improvements in self-efficacy and emotions concerning caregiving, there was no statistical difference between the control and intervention groups in these outcomes. The authors used the three subscales of the Revised Scale for Caregiver Self-Efficacy 19 to assess self-efficacy in their study participants. The subscales are on a rating scale from 0 to 100 with the three following section related to self-efficacy: obtaining respite (OR), dealing with problem behaviors (DPB), and controlling thoughts (CT). For the educational booklet group, pre-intervention scores for self-efficacy subscales were OR 61.1, DPB 70.2, and CT Post intervention scores were OR 69.5, DPB 78.1, and CT For the Video intervention, preintervention scores for self-efficacy subscales were OR 70.7, DPB 72.9, and CT Post intervention scores were OR 72.3, DPB 81.1, CT The largest effect size was seen in the self-efficacy subscale of dealing with problem behaviors. Though the authors found statistically significant improvements in self-efficacy, there was no statistical difference between the control and intervention groups. This low quality study suffered from poor maintenance of randomization, and a small sample size. This increases selection bias, risk of confounds, and affects internal validity. The appropriate use of intention to treat analysis may have led to type 2 error due to the small sample size and drop outs. Despite using validated measures at similar times, the time frame of collecting follow up data immediately after the study makes long term conclusions over such an intervention unknown. Additionally, other problems with generalizability arise due to the frequency of phone calls in this study and the practicality of an intervention of this intensity in the general population. The fourth study, Lewis et al 15, is a single cohort study of 47 caregivers from multiple centers across the United States, 15% male and 85% white, who were assigned to an internet based psychoeducational program to improve informal caregiving of those with dementia. This 12

14 intervention consisted of four modules, and data were collected at intake and post intervention. Outcome variables of interest were changes in caregiver strategies, skills, knowledge and confidence. The authors were also interested in the assessment of their program. Using their own measures and providing no information on their validity, the authors performed t-tests on the data from the 74% of participants who completed the follow up questionnaire. There were three self-efficacy questions as part of the 5 point likert caregiver subscale in which participants responded that they agreed or strongly agreed ( % of participants) that they were more confident in their caregiving skills, communication skills, and ability to care for their relative with dementia. Overall, participants also enjoyed the program and said it was very helpful. There were some differences seen between white and non-white participants in several of the outcome variables. Because of the small sample, study design, analytical methods, use of invalidated measures, and high potential for bias, this study was of low quality. The next study, Marziali and Garcia 13 was a quasi-experimental cohort study done with 91 Canadians, 28% male, in which participants self-selected to one of two internet-based clinical support groups. The Chat group was a text-based chat group with pre-recorded dementia care educational videos while the Video group used a clinician through video conferencing. The primary goal of the intervention was to improve stress and overall health of caregivers. Measures were obtained at the beginning of the study and at 6 months follow up. The authors used intention to treat analysis of covariance both between and within groups to assess caregiver distress, physical health, social support, self-efficacy, and service utilization. At the 6 month follow up, the Chat and Video groups both showed significant improvements in self-efficacy. When compared to the Chat group, the Video group showed significantly greater improvements in self-efficacy, neuroticism, social support, and level of 13

15 stress. With regard to self-efficacy, the authors used the Revised Scale for Caregiver Selfefficacy and saw a change in self-efficacy mean from to at follow up. The quality of this study is low. Though the authors used intention to treat analysis, validated measures, and had a relatively large sample size, there is high a risk of bias. There was no randomization or table showing participant characteristics by group. Additionally, the authors never described if there were any drop outs in this study. These factors introduce a significant potential for bias and make it difficult to interpret the meaning of these findings. This study has a high risk of type 1 error which affected its quality rating. In Steffen s 17 study, the author randomized 33 participants from the St Louis, MO area, 24% men and 24% African American, into one of three eight week intervention groups for this pilot study on improving anger-management in caregivers. The caregivers were assigned to viewing an anger-management video series with weekly telephone check-ins, 90 minute class based viewing led by a facilitator, or a waitlist control condition. Measures were conducted pre and post-intervention to assess depression, self-efficacy, and level of anger. The author did analysis of covariance both within and between groups of the 85% of individuals who completed the follow up measures. Both the home-based intervention and class based intervention showed significant improvements in depression, self-efficacy, and anger. There was no significant improvement in the waitlist group. To measure self-efficacy, the authors used the manage disruptive behaviors subscale of the Revised Scale for Caregiver Self-efficacy. The home-based intervention group means changed from to from pre to post-intervention. This is the largest increase in selfefficacy in the seven studies included in this review. Additionally, the class-based intervention self-efficacy means changed from 70.9 to 80.7 and the wait-list group remained about the same changing from to

16 Overall, this was a low quality study. The authors never described their randomization process and the demographics post randomization showed significant differences in the age of individuals in each group. The study suffered from differential drop out of an already small sample, and the author did not do intention to treat analysis. There is a high risk of bias in this study and no data on long term outcomes. The dramatic change in self-efficacy in the homebased intervention group does show promising preliminary results due to the large effect size. The last study in this review, Williams et al 14, consisted of 116 caregiver participants from the Durham, NC area, 23% male and 64% white, in a video-based coping skills study. Using alternating assignment, this five week intervention consisted of a video module for caregivers on coping skills along with exercises, a workbook, and a weekly telephone call or a waitlist control group. Data were collected at 7 weeks, 3 months, and 6 months after the intervention was completed. The authors used validated measures to assess depression, anxiety, perceived stress, blood pressure, cortisol level, anger, hostility, self-efficacy, and sleep. There was an 18.1% nondifferential drop out and intention to treat analysis of covariance was performed on the outcomes. Of all the variables of interest, those in the intervention group showed significant improvement in depression, perceived stress, and blood pressure. These changes were maintained for at least 6 months. Of note, there was no statistical improvement in self-efficacy, and the authors did not provide post intervention self-efficacy means despite providing baseline self-efficacy data from their use of the Revised Scale for Caregiver Self-efficacy. This study was deemed of moderate quality due to strong analytical methods, large sample size, strong racial diversity in study participants and outcome measures from long term follow up. The study would be strengthened with a larger sample size, true randomization, and greater diversity in the education of the participants. 15

17 Discussion Concerning the main outcome of interest, self-efficacy, four of the seven studies 13,15,17,18 showed statistically significant improvements in self-efficacy after the intervention compared to the control group. Though these studies showed statistically significant improvements, there are questions regarding their clinical significance and the internal validity of the study findings. Of the four studies showing improvement in self-efficacy compared to control, two were low quality due to high risk of bias, problems with analysis, and a lack of long-term outcome data. 15,17 However, the highest quality study in this review 18 in addition to another study of low-moderate quality 13 support the conclusion that these interventions with a video component may improve self-efficacy in caregivers of people with dementia. Though a meta-analysis could not be performed for these studies due to their high heterogeneity, these seven studies suggest a small magnitude of improvement in self-efficacy with a high degree of uncertainty due to the low quality of the studies. Additionally, publication bias in this area of research is highly likely and the true effect size of these caregiver interventions may be smaller and closer to the null. These seven studies had small effect sizes and many lacked long term outcomes which negatively affected their clinical significance. Due to the poor quality of the studies and the high heterogeneity, there is insufficient evidence to assess the effectiveness of videos to improve the self-efficacy of informal caregivers of persons with ADRD. Though self-efficacy was a measure in all of these studies, improving self-efficacy or confidence was not the primary aim of any of these studies. A research study utilizing videos in which self-efficacy is the primary outcome in the selected caregivers may produce a greater effect size with long term benefits. 16

18 The main limitation to this review was having a single reviewer of the articles. Additionally, using more databases may have revealed more pertinent articles for review. Having a single reviewer has the potential to increase selection bias. To address these limitations, hand searches of the reviewed articles references and three recent systematic reviews were high yield sources to extract pertinent articles. Conclusion Results from this review are consistent with other systematic reviews 3,8,9 which concluded there was a small statistical benefit in caregiver interventions with unknown clinical significance. Higher quality studies with less heterogeneity and long term follow up are needed to assess the benefits of caregiver interventions with video components in improving selfefficacy. Additionally, researchers must be proactive in recruiting males, people of color, and participants who are less educated. The homogeneity of participants in caregiver research of people with dementia makes it difficult to generalize the findings. With more and more individuals in the world gaining access to the internet, there is hope that distance will be less of a factor in recruiting diverse populations into future research studies. It is also worth noting, if future studies find videos to be an effective tool to improve caregiver self-efficacy, data on the cost of implementing these interventions and potential harms will be needed. Ultimately, videos may be an important tool in improving caregiver outcomes such as self-efficacy. However, the current evidence reveals great uncertainty in the clinical significance of these tools for caregivers. There is insufficient evidence to assess the effectiveness of video based interventions to improve self-efficacy or confidence in caregivers of people with ADRD. 17

19 References 1. Alzheimer s Association. Alzheimer s disease facts and figures Updated Accessed 11/18, Schulz R, Martire LM. Family caregiving of persons with dementia: Prevalence, health effects, and support strategies. The American journal of geriatric psychiatry. 2004;12(3): Lin JS, O Connor E, Rossom RC, Perdue LA, Eckstrom E. Screening for cognitive impairment in older adults: A systematic review for the US preventive services task force. Ann Intern Med. 2013;159(9): Cheng S, Lam LC, Kwok T, Ng NS, Fung AW. Self-efficacy is associated with less burden and more gains from behavioral problems of alzheimer s disease in hong kong chinese caregivers. Gerontologist. 2013;53(1): Fortinsky RH, Kercher K, Burant C. Measurement and correlates of family caregiver selfefficacy for managing dementia. Aging & mental health. 2002;6(2): Semiatin AM, O Connor MK. The relationship between self-efficacy and positive aspects of caregiving in alzheimer's disease caregivers. Aging & Mental Health. 2012;16(6): Yoo MS, Yoo IY, Lee H. Nursing students' self-evaluation using a video recording of foley catheterization: Effects on students' competence, communication skills, and learning motivation. J Nurs Educ. 2010;49(7): doi: / ; /

20 8. Godwin KM, Mills WL, Anderson JA, Kunik ME. Technology-driven interventions for caregivers of persons with dementia A systematic review. Am J Alzheimers Dis Other Demen. 2013;28(3): Boots LM, de Vugt ME, van Knippenberg RJ, Kempen GI, Verhey FR. A systematic review of internet-based supportive interventions for caregivers of patients with dementia. Int J Geriatr Psychiatry doi: /gps.4016; /gps Bandura A. Self efficacy. Wiley Online Library; Owens DK, Lohr KN, Atkins D, et al. AHRQ series paper 5: Grading the strength of a body of evidence when comparing medical interventions Agency for healthcare research and quality and the effective health-care program. J Clin Epidemiol. 2010;63(5): Gallagher-Thompson D, Wang PC, Liu W, et al. Effectiveness of a psychoeducational skill training DVD program to reduce stress in chinese american dementia caregivers: Results of a preliminary study. Aging Ment Health. 2010;14(3): doi: / ; / Marziali E, Garcia LJ. Dementia caregivers' responses to 2 internet-based intervention programs. Am J Alzheimers Dis Other Demen. 2011;26(1): doi: / ; / Williams VP, Bishop-Fitzpatrick L, Lane JD, et al. Video-based coping skills to reduce health risk and improve psychological and physical well-being in alzheimer's disease family caregivers. Psychosom Med. 2010;72(9): doi: /PSY.0b013e3181fc2d09; /PSY.0b013e3181fc2d09. 19

21 15. Lewis ML, Hobday JV, Hepburn KW. Internet-based program for dementia caregivers. Am J Alzheimers Dis Other Demen. 2010;25(8): Gant JR, Steffen AM, Lauderdale SA. Comparative outcomes of two distance-based interventions for male caregivers of family members with dementia. Am J Alzheimers Dis Other Demen. 2007;22(2): doi: / Steffen AM. Anger management for dementia caregivers: A preliminary study using video and telephone interventions. Behavior Therapy. 2000;31(2): Beauchamp N, Irvine AB, Seeley J, Johnson B. Worksite-based internet multimedia program for family caregivers of persons with dementia. Gerontologist. 2005;45(6): Steffen AM, McKibbin C, Zeiss AM, Gallagher-Thompson D, Bandura A. The revised scale for caregiving self-efficacy: Reliability and validity studies. J Gerontol B Psychol Sci Soc Sci. 2002;57(1):P

22 Tables and Figures Table 1 21

23 Figure 1 Titles found using keyword searches: Pubmed (n=37) CINAHL (n=7) Excluded (n=10): Nursing home patients (n=5) Duplicate articles (n=2) Dementia not related to Alzheimer s disease (n=2) Other language (n=1) Retrieved abstract for relevance assessment (n=34) Excluded (n=23): Intervention not focused on informal caregivers (n=11) Video component not prerecorded (n=4) No measure of self-efficacy change (n=8) Retrieved article for full review (n=11) Articles added from previous systematic reviews of internet based intervention (n=1) and articles added from hand search of retrieved retrieved articles (n=1) Excluded (n=6): Intervention not focused on informal caregivers (n=2) No quantitative measure of self-efficacy (n=4) Analyzed for full review (n=7) 22

24 Table 2 Author/ Year Title Design Caregiver Participants (n, age, gender, ethnicity, education) Video Component Results Worksite-based internet Beauchamp multimedia program for et al 2005 family caregivers of persons with dementia Randomized clinical trial n=299, 46.9 years, 27% male, 80% White, 90% some college or trade school Videos modeled positive caregiving strategies. Videos included a wide range of topics and methods from skill building to testimonials. There was significant improvement in anxiety (F=4.78, p=0.030), depression (F=6.83, p=0.009), self-efficacy (F=5.87, p=0.016 and an effect size +2.5), views of caregiving (F=5.35, p=0.021) and CG strain (F=4.90, p=0.028). There was also an increase in intention to get help (F=9.76, p=0.002). CG ways of coping did not change in this intervention (F=0.01, p=0.971). Gallagher- Thompson et al 2010 Effectiveness of a psychoeducational skill training DVD program to reduce stress in Chinese American dementia caregivers: Results of a preliminary study Randomized clinical trial n=70, ~59 years, 13% male, Chinese Americans, 13.4 years of education The skill DVD was designed to show ways to effectively handle difficult behaviors often seen in people with dementia and ways to handle stressful family situations. Actors were Chinese, and bilingual versions were made. The education group received two DVDs with information on dementia. Positive affect increased more in the skill DVD group than in the education DVD (p=0.010). Stress decreased though depression remained the same (p=0.164). There was no difference in the two groups concerning overall self-efficacy as a CG (p=0.91 and an effect size of 0). However, participants enjoyed and found the skill DVD more helpful than the educational DVD (p<0.001). 23

25 Gant et al 2007 Comparative outcomes of two distance-based interventions for male caregivers of family members with dementia Randomized clinical trial n=32, 71.6 years, 100% male, not reported, 13.5 years of education A ten session video series from the Dementia Caregiving Skills Program that focused on behavioral strategies in caregiving. There were statistically significant improvements in self-efficacy and views of caregiving in both groups (F=11.28, p<0.001) but no statistical difference between the intervention and control group (F=1.08, p=0.38). Additionally, no one reported suicidal ideation. The largest effect size increase in self-efficacy was seen in the subscale of DPB (effect size of +8 from baseline). Lewis et al 2010 n=47, 55 years, Internet-based program 15% male, 85% Cohort study for dementia caregivers White, 65% college graduates Caregivers describing examples of common situations that may arise and common reactions to them. They also described savy responses to these situations and strategies caregivers could use. Participants felt more confident in their caregiving skills, ability to communicate, and ability to care for their loved one based on a likert scale. Over 85% of participants said they agreed or strongly agreed on the three self-efficacy questions on the caregiving scale. They also enjoyed the program and found it useful as % of scored on the upper end of the program subscale. White participants mean scores were 37.3 vs 41.9, p=0.042 in non-white participants in the caregiving subscale. Marziali and Garcia 2011 Dementia Caregivers' Responses to 2 Internet-Based Intervention Programs 6 dementia care educational videos were used in the chat n=91, 65.5 years, Quasiexperimental video conferencing meant to group. In the video group, 28% male, ethnicity not reported, 60% cohort study mimic a face-to-face college educated psychotherapeutic intervention. Chat and Video group showed significant improvement in self-efficacy over 6 months (F=4.3, p=0.04 and an effect size +5.5). When compared to the Chat group, the Video group showed significantly greater improvements in mental health (F=5.69, p=0.02), stress (F=5.65, p=0.02), and distress associated with managing IADLs (F=5.79, p=0.02). 24

26 Steffen 2000 Anger management for dementia caregivers: a preliminary study using video and telephone interventions n=33, 64 years, Randomized 24% men, 76% to 3 groups White, 13.4 years of education Each video segment lasted 30 minutes and used caregiving situations to show cognitive behavior strategies for anger management. CG anger interview (F=3.97, p<0.05), beck depression inventory (F=6.38, p<0.01), and self-efficacy (F=9.11, p<0.001) measures showed significant improvements from baseline in both the home-based intervention (effect size +19) and classbased intervention (Effect size +10). There was no significant improvement in waitlist group Williams et al 2010 Video-based coping skills to reduce health risk and improve psychological and physical well-being in Alzheimer's disease family caregivers Alternating assignment clinical trial n=116, 60.5 years Ten video modules lasting old, 23% male, 64% about 10 minutes in which White, >80% at they provided training on least some college various coping skills. Of all the outcomes of interest, those in the intervention group showed significant improvement in depression (F=4.19, p=0.04), perceived stress (F=4.08, p<0.05), and blood pressure (F=5.37, p=0.005) that was maintained for at least 6 months. There was no statistical improvement in self-efficacy (p>0.10), and an effect size was not reported. Caregiver = CG, Dealing with Problem Behaviors = DBP, Instrumental activities of daily living= IADL 25

27 Table 3 Author/Year Quality Rating Quality Rating Rationale Beauchamp et al 2005 Gallagher- Thompson et al 2010 Gant et al 2007 Lewis et al 2010 High low-moderate low low Of those eligible for the study, 90% participated and very few dropped out. This decreases risk of selection bias. The authors were able to maintain randomization despite an unclear randomization scheme. The large sample size and racial diversity strengthened the directness of this study, but the high education and low percentage of males weaken the external validity. The fact that the authors assessed outcomes at least several weeks after the intervention strengthened this study though longer follow up would have been beneficial. There were statistically significant changes seen in the results, but questionable clinical significance due to the small magnitude of the effect size. This limits the external validity. The study benefited from having a good control group, randomization, and using several validated measures of the outcome. What prevented this from being of high quality was that lack of ITT analysis, the small sample size, and follow up time for measuring outcomes. Measuring outcomes months after the study was conducted would significantly strengthen the certainty behind the study results. The findings of this study have limited generalizability to populations outside of those who are not Chinese American or female. Though focusing on minority groups in dementia research is an important niche this study helps to address. A statistically significant difference was seen between the groups perceived economic level even after randomization which calls into question the success of the randomization process. Additionally, there was a problem with differential drop out leading to problems with selection bias and confounds which effected the study s internal validity. This study benefitted from using appropriate analytical methods and validated measures. The very small sample size and high level of education of the study participants affect the directness and generalizability of this study. Due to the small sample with no randomization, there is a strong risk of selection bias and confounds in this study. The measures used in this study were not validated and gives this study a high risk of measurement bias and questionable precision of measuring desired outcomes. There are also some problems with generalizability and directness of this study due to the high education of the study participants, over representation of white females, and relatively young sample. 26

28 Marziali and Garcia 2011 Steffen 2000 Williams et al 2010 low low moderate The two intervention groups were not equal in intensity. Video components were not utilized by many participants in the Chat group making efficacy of this design difficult to assess. The study design did not include randomization and the authors did not present a Table 1 of demographics. There are also some problems with generalizability and directness of this study due to the high education of the study participants, lack of ethnicity details, and over representation of females. There is also no mention of drop-outs to this study which is highly likely. Marziali and Garcia s study has a high risk of selection bias and confounding though they did a good job with their analysis and had a moderate sample size. Steffen never described the randomization scheme and the fact that the groups differed on age after randomization calls into question the success of the randomization process. Additionally, the study suffered from a small sample size and differential drop out which leads to a high risk of selection bias and potential confounds. The author also failed to perform ITT analysis. There are also some problems with generalizability and directness due to high education of the study participants. The lack of long-term follow up outcomes from these participants weakens this study s validity. The alternating assignment used in this study was not true randomization and led to differences in the initial groups and contributes to potential biases. The study had good analysis and an above average sample size. There are also some problems with generalizability and directness due to the high education of the study participants and over representation of females. Factors reducing the quality of this study include a sample size of less than two hundred participants and a lack of randomization. However, the study also benefitted from use of validated outcomes and clinically relevant long term follow up data. ITT = Intention to treat 27

29 Development and Testing of the Caregiver Confidence in Symptom Management Instrument Abstract There are few valid and reliable measures that assess caregiver confidence related to persons with dementia. Most of these measures focus primarily on behavioral components, and a literature review was unable to find a measure that related to caregiver confidence responding to medical events. We sought to create a measure to address this gap in the literature. We developed the Caregiver Confidence in Symptom Management (CCSM) instrument, which assesses confidence related to knowing enough about, deciding what to do, and actually taking care of medical problems and events. In addition, the measure assesses overall confidence understanding what to do and enacting responsive behaviors to these medical events. Development included literature review, expert panel review, cognitive testing, and pilot testing on 17 caregivers. We assessed test-retest reliability and internal consistency using Pearson s r, weighted kappa analysis, and Cronbach s alpha. The initial measure had strong face validity and internal consistency, but many items of the measure were not reliable on retest. Item reduction and refinement based on psychometric testing and participant feedback led to the final 25 item CCSM measure. Further testing is warranted on a larger and more diverse study population to assess the measure s internal and external validity and sensitivity to change, as well as confirm its reliability. 28

30 Introduction Managing comorbid conditions and chronic diseases is a growing concern in the United States as our population ages and our health expenditures continue to rise. Over 80% of Medicare beneficiaries have at least one chronic condition and nearly 25% of these beneficiaries have five or more chronic conditions. 1 The burden of providing care to individuals with multiple comorbid conditions often falls on a family member, historically referred to as an informal caregiver. This burden is especially prominent in the case of informal caregivers of persons with Alzheimer s diseases and related dementias (ADRD). A 2004 study estimated that of the 3 million Americans with Alzheimer s disease living at home, of those who required care, 75% of the home care was provided by family members. 2 These caregivers often have to help with activities of daily living and also manage acute and chronic conditions. A study published in 2008 that examined over 25,000 individuals with Alzheimer s disease compared to controls without dementia found that the ADRD cohort had more comorbid conditions, higher illness burden, and a greater risk of injury. 3 This study and others have shown greater annual costs associated with increased comorbidities in dementia patients. 3,4 Despite these findings, resources to help family caregivers assess and manage new or worsening medical conditions are scarce, and of the few resources that are available, most focus exclusively on behavioral problems associated with dementia. 5 This lack of resources is often challenging, and informal caregivers they have expressed a need for more resources to fill this gap. 6 To complicate the challenges caregivers face to provide quality care to their relative, the signs and symptoms associated with comorbid conditions in people with ADRD can be difficult to recognize and manage due to the cognitive and functional decline that is characteristic of ADRD. Additionally, many caregivers find it difficult to communicate with health care 29

31 professionals concerning the medical problems and signs their relative with ADRD is having. Providers in one study expressed that their biggest challenge in helping caregivers over the phone was the inability of informal caregivers to assess vital signs and communicate relevant medical information. 7 This challenge can also be frustrating for caregivers who feel overwhelmed in their daily responsibilities and ill-prepared to address medical issues. Unfortunately, the stress and burden informal caregivers face trying to care for their relative with dementia often leads to adverse psychiatric and physical health outcomes in the caregiver. 2,8 Alzheimer s Medical Advisor Website Toolkit In order to meet some of the needs of informal caregivers, a caregiver website-based toolkit was designed for the assessment and preliminary management of new or worsening medical signs and symptoms in people with ADRD. This website toolkit is called Alzheimer s Medical Advisor. The biopsychosocial theory that describes caregivers as intermediaries between care recipients and medical providers served as the underlying theory in the toolkit design, 9 as did a systematic review of the literature that showed interventions involving caregivers in the design, which had multiple components, or were psychoeducational, were generally the most effective in improving caregiver outcomes. 10 Furthermore, interventions that focused on skill building and education were also very effective. 11,12 Best practices from these studies informed the design of the toolkit. The website includes over thirty evidence-based and professionally-developed protocols for the assessment and management of common signs or symptoms pertinent for caregivers of people with ADRD. Development of the protocols and website included a caregiver advisory group during the design process and pilot testing. 13 In addition, the toolkit includes videos on how to accurately assess vital signs, dehydration, and pain, for which the advisors also provided input. Though videos are becoming a more common component in caregiver interventions, this 30

32 video component is unique in that it does not focus on improving caregiver mental health or skills specific to dementia related problem behaviors In addition, the website contains sections including an area for caregivers to record the personal health record of the care recipient, caregiver stress information, and links to other websites related to Alzheimer s disease. Information on advance directives and more problem guide protocols are future components of the website in development at the time of the initial pilot testing. The website was developed by the Program on Aging, Disability, and Long-Term Care of the Cecil G. Sheps Center at the University of North Carolina, Horizon Productions, and the Family Support Program of Duke University. For more information on Alzheimer s Medical Advisor, visit: Assessing the Toolkit s Effectiveness To assess the effectiveness of this new toolkit, a measure was needed to evaluate change in a caregiver s self-efficacy regarding their assessment, preliminary management, and decision making associated with new and worsening medical problems. The goal of the toolkit was not to increase caregiver knowledge to the level of a medical professional, but to help caregivers feel more confident in communicating with health professionals effectively and making initial management decisions. As noted earlier, there are few studies on ways to assess caregiver self-efficacy or skill in managing medical events in care recipients, and most studies that focus on medical events are predominately concerned with dementia related behaviors. 18,19 In addition, there are no established or well validated measures to assess caregiver skill or self-efficacy in managing new or worsening medical problems. A commonly used self-efficacy measure is the Revised Scale for Caregiver Self-Efficacy. 20 This instrument has a subscale that deals with problem behaviors associated with dementia care, but consistent with the points above, it does not address other medical problems. For these reasons, we created the 31

33 Caregiver Confidence in Symptom Management (CCSM) instrument. This study describes the development and initial testing of this instrument. The pilot test of the Alzheimer s Medical Advisor toolkit provided an opportunity to validate our new instrument. Methods Instrument Development The Caregiver Confidence in Symptom Management (CCSM) instrument was developed by the lead author in collaboration with Drs. Sheryl Zimmerman and Philip Sloane. Development was largely informed by their experience creating and testing measures in diverse areas and Albert Bandura s work on self-efficacy instrument development. 25 Using self-efficacy as the main outcome of the measure, the goal of the instrument was to assess caregivers 1) knowledge about what to do, and actually take care of, specific medical events, 2) overall confidence in making decisions and dealing with categories of medical problems, and 3) overall confidence understanding and enacting responsive behaviors to these medical event. Questions were constructed on a five-point likert scale from not at all confident to extremely confident or from not at all true to extremely true. These questions asked participants to state their confidence related to their experience with new or worsening medical conditions both retrospectively and prospectively. The symptoms and signs used in assessing this measure were consistent with those described in the Alzheimer s Medical Advisor toolkit. An expert panel of individuals with experience in the substantive matter and construct design was formed in December The panel consisted of Barbara Resnick, Ellie McConnell, and Carol Whitlatch, and their input was taken into consideration in making revisions to the measure before pilot testing. The pilot version of the measure was used in telephone interviews with the study participants at 1, 3, and 5 month intervals. Each set of 32

34 interviews served the purpose of providing feedback for the Alzheimer s Medical Advisor website and further modification and psychometric testing of the CCSM. A copy of this measure, in addition to the preceding list of thirty medical events of interest, can be seen in Appendix 1. In brief, the pilot version consisted of two sections. The first section asked about knowing enough, deciding what to do, and actually taking care specific medical events (11 items for each new or worsening event reported by the participant). An example of a condition specific question is how true is it that you felt overwhelmed when your relative had pain with urination. The medical conditions of interest ranged from hearing loss and skin injuries to aggression and depression. Multiple medical problems or events were encompassed in the categorical questions (dementia-related behaviors, mood changes, mental status changes, new medical problems, and ongoing medical problems). These five overall categories (3 items each) were part of the second section of the measure. An example of a categorical item is overall, how confident are you in your ability to take care of your relative's problems associated with ongoing chronic diseases that may occur, such as diabetes or hypertension. Additionally, the second half of the measure assessed overall confidence understanding what to do and enacting responsive behaviors to these medical events (16 items). For example, how confident are you in your ability to understand what to do when your relative is dehydrated. There were a total of 42 items in the measure, and it took an average of one hour to administer over the telephone depending in large part on the number of new or worsening medical problems a participant encountered since their last interview. Cognitive Interviews To test construct validity, we developed a cognitive interviewing protocol and conducted cognitive interviews on five participants. The first five participants who had at least one new or 33

35 worsening condition at the three month follow up for the Alzheimer s Medical Advisor toolkit pilot study were selected for cognitive interviewing. The cognitive interview was designed using the Question Appraisal System-99 technique. 26 This technique is a systematic approach containing several steps that include, but are not limited to, clarifying measure instructions, assessing measure assumptions and biases, assessing the adequacy or range response, etc. Participants responded to the interview as written and provided unsolicited questions or comments. The interviewer did not provide any assistance with questions during the written interview but used unanswered questions and those with comments as items to be addressed during the cognitive interview. During the cognitive interviews, selected questions were asked of participants. They were asked to restate the question using their own words, explain how they arrived at their answer, and expound upon any difficulty they may have had answering the question. Four of the same questions were asked of all participants while two other questions were asked at random. Lastly, respondents were asked to share any other questions they might have had or felt the questionnaire did not address. Test-Retest Reliability Test-retest reliability of the CCSM instrument was conducted via telephone interviews at the five month study interval with all study participants. The entirety of the CCSM instrument was asked of the selected participants approximately two days apart and test-retest data were calculated using Pearson s r and weighted kappa analysis performed by Dr. David Reed using the Statistical Analysis System (SAS). CCSM question items were analyzed using measures of central tendency and variability. In addition, he analyzed the change in Cronbach s alpha by removing individual items and examining scale items in aggregate by question stem. To further inform item reduction and refinement, we examined the Pearson r correlations between the item scale scores at time 1 with the score of the same scale at time 2. 34

36 Item Refinement and Reduction Based on feedback from study participants in the pilot test, results from the cognitive interviews, and statistical analysis, the items of the measure were further refined and several items were removed. New sections were created for the remaining items, and they were then scored separately so that the final CCSM instrument contained two subscales. Results Study Participants Pilot study participants were recruited from the Duke Family Support Program, UNC Memory Disorders Program, and local senior centers. Study brochures and informational e- mails were sent to interested caregivers, and they were told to contact the study office directly if they were interested in participating. The eligibility criteria were as follows: 1) care recipient has been diagnosed with ADRD, 2) is not receiving hospice care, and 3) is currently living at home; caregivers must 4) be at least 21 years of age, 5) involved in the care and care decisions made for the relative, 6) see the care recipient at least once a week, and 7) use the internet on a home computer at least three times a week. Additionally, the dyad had to live within 120 miles from Chapel Hill, NC. Of the eighteen caregivers that contacted the office, all were eligible and participated in this study. Demographics of the eighteen pilot study participants and their care recipient dyads are shown in Table 1. Of note, the majority of participants were white (89%), had a college or graduate degree (89%), and female (83%) with an average age of 71. Most caregivers rated their health as very good or excellent (89%), and most stated that they lived with their care recipient (94%). Of the care recipients, the average age was 79 with the majority of these 35

37 individuals being males (67%) in excellent to very good health (61%) who had been diagnosed with ADRD 3-4 years ago (61%). Of note, no participant dropped out of the study though there is missing data from one or two participants at the five month follow up due to the participant being out of town. Cognitive Testing The complete results of the cognitive testing can be found in Appendix 2. Overall, participants reported not having any trouble answering the questions, and they felt the measure did not have items that were difficult to answer or not relevant, nor response options that prevented accurate answers. They had no recommendations on additional questions to ask concerning medical problems in their relative or about their self-efficacy. Results from the first four interviews indicated that when some participants were asked to restate a question in their own words, the concept of deciding what to do and actually take care of a medical problem was not discretely different to all participants in essence, respondents felt confident taking care of matters in accordance with their confidence in being able to decide what to do. Consequently, we explicitly asked our fifth participant if she felt these were two different concepts, and we learned she did. However, at that time, we discerned that a construct we had not been asking was also operative: having sufficient information (in addition to making a decision and carrying it out). As a result, we modified the questions to address the concepts of (1) knowing enough, (2) deciding what to do, and (3) actually taking care of, a problem or symptom as three separate concepts. At the five month interview, 17 participants were asked initially and two days later whether they considered these to be three distinct concepts. Twenty-seven unique answers were obtained, and on seven occasions (26%) they felt these were the same concepts. Additionally, we looked at correlations within participant s answers for the overall questions 36

38 related to knowing enough, deciding what to do, and actually taking care of medical problems and events, and we found statistically significant variation in their answers (p<0.05). Because of these results, it was concluded that we should continue to use these three separate concepts in the measure. Test-Retest Reliability, Item Refinement and Reduction The results of the 5 month test-retest reliability data are shown in Table 2 (Pearson s r correlations and weighted kappa for each item). The range of Pearson s r correlation values was quite wide from 0.01 to 0.98; of the 43 items, only 17 had a test-retest correlation of 0.70 or higher. Of the 11 items in the condition specific section of the measure, only three items had a Pearson s r greater than Additionally, several of the categorical questions had poor correlation values. Low correlation scores were associated with the 5 items with the categorical question stem assessing confidence related to knowing enough overall about medical events ( ). However, some sections of the measure had strong correlation values for the individual items. The 11 items that assessed confidence in understanding what to do and enacting responsive behavior had almost uniformly high values ( ). Kappa correlation values showed similar results but not in complete agreement. The kappa for the entire measure ranged from 0.17 to Overall, these data indicated concerns about the reliability of some of these items and the stability of each individual s perception of their self-efficacy. In addition, there was some concern that overall items asking about different medical categories of problems were not completely discrete categories (i.e., some medical events may easily fit into multiple categories and each caregiver may categorize them differently when answering the question) which could explain a small percentage of the poor reliability issues seen in these questions. However, this 37

39 is unlikely to have a large effect on item test-retest as within person categorization of a medical problem is unlikely to change significantly in a two day period. Consequently, a decision was made to eliminate the first section of the measure which contained all of the condition specific items (11 items in total). This decision was made due to the poor test-retest reliability, the overall length of the questionnaire, and the utility of the data (i.e., although having questions about individual medical problems was of interest, the number of different problems would complicate analyses and the implementation trial would likely be underpowered to detect potentially significant change overtime). Additionally, some of the questions regarding individual medical problems were not pertinent for all medical problems such asking about safety concerns when a participant reported hearing loss. This affected the validity and reliability of some of these questions. Though many of the items had poor test-retest reliability, they were more robust when analyzed in aggregate. To do this, we analyzed the Cronbach s alpha of the 31 remaining items grouped by question stem (Table 3). The Cronbach s alpha showed strong internal consistency reliability with all alpha values above 0.7 (range to 0.951). This analysis also showed potential changes to the aggregate scale alphas if certain items were removed (data not shown). Additionally, further analysis was performed on these aggregate scales by examining Pearson s r correlations between the item scale scores at time 1 with the score of the same scale at time 2 (Table 4). For 4 of the 5 scales, these correlations were 0.8 or higher with the weakest correlation (0.565) being the question stem asking Overall in providing care for your (relative), how true is it that you knew enough about. The strongest correlation (0.955) being the question stem asking When providing care for your relative, how confident are you in your ability to. Lastly, to test our concerns about range restrictions and potential outliers, for each respondent, the score at time 1 was subtracted from the score at time 2 (Table 5). Data from this analysis showed a slight increase in 4 of the 5 scales at time 2 compared to time 1 but 38

40 very little variation, which explains some of the discrepancies seen in the kappa analysis. This also showed that there were no significant outliers and that range restriction was having a minimal effect on data analysis. Based on these data, the measure was further reduced and refined. The CCSM measure was reduced from 43 items to 25. The final version of the measure contained fifteen items that assessed confidence related to knowing enough, deciding what to do, and actually taking care of five overall categories of medical conditions and events (i.e., dementia-related behaviors, mood changes, mental status changes, new medical problems, ongoing medical problems), using a five point likert scale. It also includes nine items assessing overall confidence understanding what to do and enacting responsive behaviors to these medical events (talk to medical provider, take vital signs, understand vital signs, manage medical problems at home, etc). Each section is scored separately, with the first section ranging from 15-75, and the second from Lastly, the measure contained one question regarding the differentiation of the concepts of knowing enough, deciding what to do, and actually taking care medical events, so that questions regarding caregiver s ability to differentiate between these concepts can be further elucidated during the implementation trial in a larger and more diverse population. Though the majority of participants in our pilot study noted they felt there was a difference between these three concepts, their high educational level make generalizability of this finding limited. The final version the measure to be used during the implementation trial can be found in Appendix 3. Discussion There are several challenges in measuring self-efficacy in caregivers of people with dementia. One challenge is that overall measures of self-efficacy often times do not discriminate 39

41 the complexity of an individual s true self-efficacy regarding a specific task. 25 For example, a single self-efficacy question asking about confidence in dealing with demented related medical problems is not specific enough to elucidate the probable wide range of self-efficacy an individual may feel regarding different dementia related medical events. Additionally, a person s confidence is not always stable even in a short period of time as our self-efficacy can vary widely depending on recent circumstances and our emotional state. Though a caregiver may normally have high self-efficacy concerning managing their relative s health, their self-efficacy may be very low immediately following a stressful day or a poor outcome in their relative. Selfefficacy is a dynamic construct and a person must consider multiple informational cues and experiences to form a judgment. 27 Another significant challenge is that individuals may have difficulty assessing their own self-efficacy with medical problems or situations that do not happen very often. As a person s familiarity with a task or situation decreases, so does their ability to predict their self-efficacy. 28,29 Lastly, another challenge is that individuals may think about their own self-efficacy or a question in a different way than the measure intended. A measure may try to differentiate two concepts that are thought of as a single idea by a caregiver and vice versa. Or a measure may try to categorize items in a different way than they are thought of by the participant. These issues with conceptualization can be problematic when developing an appropriate measure. 27 These challenges were all evident in the development of the CCSM as we tried to create a robust questionnaire that was comprehensive, short, valid, and reliable. The major strength of this study is the theoretical basis of the conceptualization, separation of three distinct areas of self-efficacy, cognitive testing, and test-retest analysis. The two major limitations to the testing of this measure were the small sample size and lack of diversity in the test population. Items found to be valid in our study population may not be 40

42 valid in other populations. Males, minorities, and those without a college degree were poorly represented in our pilot study population and efforts to include participants who meet these demographic criteria will strengthen the validity and applicability of this measure. Though having more female caregivers in a dementia study is quite common, the lack of male caregivers in this study and others represent a gap in the literature. Use of this new measure during the implementation portion of the Alzheimer s Medical Advisor study will provide more opportunities for psychometric testing including test-retest reliability and construct validity. Additional work refining this measure should include further testing of the two subscales (overall categorical confidence items and understanding what to do and enacting responsive behavior items). Furthermore, the measure should be further refined to include questions of the highest validity and reliability. Testing convergent validity, factor analysis, and other psychometric testing should be considered in future studies. Conclusion The CCSM may be a valid and effective measure to assess caregiver self-efficacy related to knowing enough, deciding what to do, and actually taking care of medical conditions and events. The strongest component of this measure was related to assessing confidence understanding what to do and enacting responsive behaviors to medical events. Though several of the individual question items of the CCSM are moderate to weak, they collectively form a relatively strong measure in regards to test-retest reliability as revealed by Cronbach s alpha. The measure also showed strong internal consistency and face validity. Further testing of the psychometric properties of this measure in a larger study population with greater diversity in demographics will further aid in the refinement and generalizability of this instrument. 41

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45 preliminary study. Aging Ment Health. 2010;14(3): doi: / ; / Beauchamp N, Irvine AB, Seeley J, Johnson B. Worksite-based internet multimedia program for family caregivers of persons with dementia. Gerontologist. 2005;45(6): Fortinsky RH, Kercher K, Burant C. Measurement and correlates of family caregiver selfefficacy for managing dementia. Aging & mental health. 2002;6(2): Farran CJ, Fogg LG, McCann JJ, Etkin C, Dong X, Barnes LL. Assessing family caregiver skill in managing behavioral symptoms of alzheimer's disease. Aging & mental health. 2011;15(4): Steffen AM, McKibbin C, Zeiss AM, Gallagher-Thompson D, Bandura A. The revised scale for caregiving self-efficacy: Reliability and validity studies. J Gerontol B Psychol Sci Soc Sci. 2002;57(1):P Zimmerman S, Walsh J, Sloane P, Duke C, Lea K. Screening for a high-quality paraprofessional workforce: The state of the field. Seniors Housing and Care Journal. 2001;9: Kaufer DI, Williams CS, Braaten AJ, Gill K, Zimmerman S, Sloane PD. Cognitive screening for dementia and mild cognitive impairment in assisted living: Comparison of 3 tests. Journal of the American Medical Directors Association. 2008;9(8): Sloane PD, Mitchell CM, Weisman G, et al. The therapeutic environment screening survey for nursing homes (TESS-NH): An observational instrument for assessing the physical environment of institutional settings for persons with dementia. J Gerontol B Psychol Sci Soc Sci. 2002;57(2):S

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47 Tables Table 1. Demographic Characteristics of Caregivers and Care Recipients (N=18) Caregiver Characteristics N (%) or Mean (Range) Relationship to care recipient Spouse 15 (83%) Daughter 3 (17%) Lives with care recipient 17 (94%) Age 71 (59-81) Female 15 (83%) College or graduate degree 16 (89%) Retired/not employed 12 (67%) Has medical training 3 (17%) Race African American 2 (11%) White 16 (89%) Health excellent/very good 16 (89%) Care Recipient Characteristics Relative diagnosed with Alzheimer's disease and related Dementia 1-2 years ago 2 (11%) 3-4 years ago 11 (61%) 5 or more years ago 5 (28%) Age 79 (59-99) Female 6 (33%) Health excellent/very good 11 (61%) Very difficult/can t do at all for: Remember recent events 6 (33%) Know day of the week 9 (50%) Remember home address 8 (44%) Speak sentences 2 (11%) Needs hand on assistance/total assistance for: Bathing 5 (27% Dressing 4 (22%) Toileting 3 (17%) Transferring 2 (11%) Continence 4 (22%) Feeding 1 (6%) 46

48 Table 2. Test-Retest Reliability of Caregiver Confidence in Symptom Management (CCSM) Items at 5 Month Follow-up (N=17) Section 1: Condition-specific items Overall, when thinking about taking care of your relative, how true is it that you knew enough about (condition) Overall, how confident were you in deciding what to do about your relative s Overall, how confident were you in actually taking care of your relative s Thinking back over the last (_ months), how true is the following statement? Pearson s r Weighted kappa You quickly recognized when your (relative) had You knew what to do when your (relative) had You were able to decide if your (relative) needed medical attention for You were, or would have been, comfortable talking with a medical provider about You were comfortable taking care of your (relative s) You felt overwhelmed when your (relative) had When assisting your (relative) with, you did something you knew could put your own health at risk If your (relative) had again, how confident are you that you d be able to take care of the condition? Section 2: Categorical Items Overall, how true is it that you knew enough about: Pearson s r Weighted kappa Dementia-related behaviors that may occur, such as agitation Mood changes that may occur, such as depression Mental status changes that may occur, such as confusion New medical problems or events that may occur, such as falls, infections, or fever Problems associated with ongoing chronic diseases that may occur, such as diabetes or hypertension Overall, how confident are you in deciding what to do concerning:

49 Dementia-related behaviors that may occur, such as agitation Mood changes that may occur, such as depression Mental status changes that may occur, such as confusion New medical problems or events that may occur, such as falls, infections, or fever Problems associated with ongoing chronic diseases that may occur, such as diabetes or hypertension Overall, how confident are you in your ability to take care of your relative s: Dementia-related behaviors that may occur, such as agitation Mood changes that may occur, such as depression Mental status changes that may occur, such as confusion New medical problems or events that may occur, such as falls, infections, or fever Problems associated with ongoing chronic diseases that may occur, such as diabetes or hypertension Section 2: Responsive Behavior Items Overall, when providing care for your (relative) how confident are you in your ability to: Pearson s r Weighted kappa Make a decision about whether or not to contact a medical provider Gather information a medical provider would want Talk to a medical provider Take vital signs Understand vital signs Assess for pain Understand what to do when your (relative) is in pain Assess for dehydration Understand what to do when your (relative) is dehydrated Manage medical problems at home Look out for your own health and safety when caring for your (relative) How true that know (relative's) normal range for Pulse Blood pressure Temperature Breathing rate Overall, how confident are you that you d know what to do if your (relative) had an abnormal vital sign? Do you see as separate concepts: knowing enough, deciding what to do, actually taking care of your relative

50 Question Stem Table 3. Cronbach's Alpha Reliability (N=17) Alpha at Time 1 Alpha at Time 2 Overall in providing care for your (relative), how true is it that you knew enough about *Overall in providing care for your (relative), how confident are you in your ability to decide what to do concerning *Overall in providing care for your (relative), how confident are you in your ability to take care of your relative s N of items When providing care for your relative, how confident are you in your ability to In terms of vital signs, how true is it to say that you know your (relative's) normal range for *N participants is 16 49

51 Table 4. Correlations between participant's answers at Time 1 and Time 2 Question Stem Pearson r Significance (2-tailed) N of Participants Overall in providing care for your (relative), how true is it that you knew enough about Overall in providing care for your (relative), how confident are you in your ability to decide what to do concerning < Overall in providing care for your (relative), how confident are you in your ability to take care of your relative s < When providing care for your relative, how confident are you in your ability to < In terms of vital signs, how true is it to say that you know your (relative's) normal range for <

52 Table 5. Average difference between scores at Time 1 and Time 2 N Minimum Maximum Mean Std. Deviation Two_B_1_diff Two_B_2_diff Two_B_3_diff Two_B_4_diff Two_B_5_diff Valid N (listwise) 16 51

53 Appendix 1 Alzheimer s Medical Advisor Pilot Test Caregiver Interview: Confidence Items Caregiver ID: Relation to Care Recipient: Interviewer ID: Interview Number: 1 = One month 3 = Three months 5 = Five months After entering the interview number and before beginning the interview, go to page 2 and circle whether it has been one, two, or three months since the last interview; also insert the date of the last interview in the line provided on page 2. Today s Date: 2 0 M M D D Y Y Y Y 52

54 Thank you for taking the time to speak with me today. I. Recent Medical Events I ll be asking about your (relative s) recent medical events, and also your use of the Alzheimer s Medical Advisor website. To begin, I d like to know whether your (relative) experienced any of the following new or worsening medical conditions over the past (month/two months/three months), meaning since we last talked with you on (date: ). 1. I ll read you a list of conditions and you can simply answer no or yes as to whether the following medical condition occurred. Note to Interviewer: Use clarifications in italics if respondent needs a definition of the condition. A Aggression (yelling, threatening, cursing, name calling, hitting, kicking, pushing, throwing things) 0 1 B Agitation (irritability; anxiety; verbal agitation such as repeating questions, complaining; fidgeting, not sitting still) 0 1 C Blood in the urine (pink or red urine) 0 1 D Breathing problems (can t take a deep breath or get enough air) 0 1 E Constipation (hard stools, straining when going to the bathroom) 0 1 F Cough 0 1 G Decreased activity (not doing anything, moving or talking slowing, weakness and tiredness) 0 1 H Depression (sadness, hopelessness, decreased pleasure in usual activities, feeling worthless, thoughts of death or suicide) 0 1 I Diarrhea (three or more unformed or watery stools in a 24 hour period) 0 1 J Falls (loss of balance, falling) 0 1 K Hallucinations or delusions (see, hear, taste, or smell something that isn t there; believe things that are clearly untrue) 0 1 L Hearing loss 0 1 M Hoarding and hiding (collecting a large amount of things; hiding things such as putting food in drawers with clothing) 0 1 N Not eating or drinking (saying no to food or drink) 0 1 O Not taking care of self (not showering or brushing teeth; not taking medicines) 0 1 P Pain with urination (pain or burning after urination, normally felt in lower part of belly) 0 1 Q Resisting care (not wanting to take a bath, get dressed, refusing medication, or being uncooperative) 0 1 R Sexual behavior (new or different from the way they behaved in the past) 0 1 S Skin injuries (cuts, bruises, scrapes, skin tears) 0 1 T Urinary incontinence (unintentional leakage of urine at undesired times) 0 1 U Urinary tract infection (bacterial infection of the urethra, bladder, or kidney) 0 1 V Voice and speaking problems (difficulty saying words because their voice is weak or hoarse or difficulty putting the right words together) 0 1 W Vomiting (throwing up) 0 1 X Wandering (pacing, trying to open locked doors, following someone, getting lost in the neighborhood) 0 1 Y Worsening confusion (changes in behavior and thinking) 0 1 Z Diabetes 0 1 AA Head Injury 0 1 BB Blood Pressure 0 1 CC Chest Pain 0 1 DD Abdominal Pain 0 1 Great! We re done with this list. If no medical conditions were noted, go to Section II-B. 2. For each condition noted, complete a separate copy of Section II-A. Enter number of Section II-A forms here: No Yes 53

55 II-A. Confidence Related to Recent Events So, now I ll ask you some more questions about the condition(s) you mentioned that your (relative) experienced in the last few months. For many of these questions, I ll ask you to provide an answer on a five point scale, and I ll explain as we go along. In many cases, you'll hear me asking about three concepts -- one about knowing enough about the condition, one about deciding what to do about the condition, and one about actually taking care of your relative. I'll be separating them because there may be a difference between knowing enough, being able to make a decision, and actually doing it. test: Enter number associated with that condition from page 2 of pilot For each condition noted, complete a separate copy of Section II-A. If no medical conditions were noted go to Section II-B. 1. Overall, when thinking about taking care of your relative, how true is it that you knew enough about (insert problem). If clarification is needed, say You felt you had as much information as you needed 1 Not at all true 2 Slightly true 3 Somewhat true 4 Moderately true 5 Extremely true 2. Overall, how confident were you in actually taking care of your relative s over the past (month/two months/three months)? Were you... 1 Not at all confident 2 Slightly confident 3 Somewhat confident 4 Moderately confident 5 Extremely confident 3. Overall, how confident were you in deciding what to do about your relative s over the past (month/two months/three months)? Were you... 1 Not at all confident 2 Slightly confident 3 Somewhat confident 4 Moderately confident 5 Extremely confident 54

56 4. Thinking back over the last (month/two months/three months), how true are the following statements, using the same scale of not at all, slightly, somewhat, moderately, or extremely? How true is it that A B C D E F G You quickly recognized when your (relative) had You knew what to do when your (relative) had You were able to decide if your (relative) needed medical attention for You were, or would have been, comfortable talking with a medical provider about your (relative s) You were comfortable taking care of your (relative s) You felt overwhelmed when your (relative) had When assisting your (relative) with, you did something you knew could put your own health or safety at risk Not at all true Slightly true Somewhat true Moderately true Extremely true 5. If your (relative) had again, how confident are you that you d be able to take care of the condition? Would you be 1 Not at all confident 2 Slightly confident 3 Somewhat confident 4 Moderately confident 5 Extremely confident 55

57 II-B. Assessment of Overall Confidence and Use of Vital Signs Now I d like to ask you questions about your overall confidence and use of vital signs. These questions do not necessarily relate to specific medical conditions that your (relative) experienced. 1. Please answer these next questions using the same scale of not at all, slightly, somewhat, moderately, or extremely confident. Overall, in providing care for your (relative), how true is it that you knew enough about (If clarification is needed, say You felt you had as much information as you needed ) A Dementia-related behaviors that may occur, such as agitation Not at all true Slightly true Somewhat true Moderately true Extremely true B Mood changes that may occur, such as depression C D Mental status changes that may occur, such as confusion New medical problems or events that may occur, such as falls, infections, or fever E Problems associated with ongoing chronic diseases that may occur, such as diabetes or hypertension 2. Overall, in providing care for your (relative), how confident are you in your ability to decide what to do concerning: A Dementia-related behaviors that may occur, such as agitation Not at all confident Slightly confident Somewhat confident Moderately confident Extremely confident B Mood changes that may occur, such as depression C D E Mental status changes that may occur, such as confusion New medical problems or events that may occur, such as falls, infections, or fever Problems associated with ongoing chronic diseases that may occur, such as diabetes or hypertension 3. Overall, in providing care for your (relative), how confident are you in your ability to take care of your relative s: A Dementia-related behaviors that may occur, such as agitation Not at all confident Slightly confident Somewhat confident Moderately confident Extremely confident B Mood changes that may occur, such as depression C D E Mental status changes that may occur, such as confusion New medical problems or events that may occur, such as falls, infections, or fever Problems associated with ongoing chronic diseases that may occur, such as diabetes or hypertension 56

58 4. Using that same scale, overall, when providing care for your (relative), how confident are you in your ability to: Not at all confident Slightly confident Somewhat confident Moderately confident Extremely confident A Make a decision about whether or not to contact a medical provider B Gather information a medical provider would want C Talk to a medical provider D Take vital signs E Understand vital signs F Assess for pain G Understand what to do when your (relative) is in pain H Assess for dehydration I Understand what to do when your (relative) is dehydrated J Manage medical problems at home K Look out for your own health and safety when caring for your (relative) 5. In terms of vital signs, how true is it to say that you know your (relative s) normal range for: Not at all Slightly Somewhat Moderately Extremely A Pulse B Blood pressure C Temperature D Respiratory rate 6. Overall, how confident are you that you d know what to do if your (relative) had an abnormal vital sign? 1 Not at all confident 2 Slightly confident 3 Somewhat confident 4 Moderately confident 5 Extremely confident *7. Now, I have a broader question. The interview asked about knowing enough, deciding what to do, and actually taking care of your relative as three separate concepts. Do you see these at three separate concepts? Can you explain your thinking? 0 If NO: Why not? 1 If YES: Why? *For test-retest reliability, add: Tomorrow, I d like to call you back to ask some of these same questions again. The reason I ll be doing that is because we ve not asked these kinds of questions in the past, and we want to be sure we worded them the right way so people understand the question the same way when we ask them more than once. *Questions 7 and test-retest reliability were added to the 5 month follow up interview* 57

59 Appendix 2 Caregiver Interview: Confidence Items Cognitive Testing Question 2. One question I asked was how confident you were in deciding what to do about your relative s. ID Can you restate this question, using your own words? 12 If my mom is not eating or drinking how confident am I in deciding what to do 16 When his behavior changes, how confident am I in deciding what to do about his aggression 17 If my mom was agitated how comfortable would I be in deciding what to do about it 20 How confident am I in deciding what to do about my husband s worsening confusion 19 How confident are you in assessing your husband s agitation You answered (insert). How did you arrive at your answer to this question? Moderately confident: I said moderately because if it was severe I am not sure I would know what to do Moderately confident: I would not have said extremely confident because sometimes I have to figure out what is triggering the aggression and it takes a while Moderately confident: I said moderately and not extremely because it depends on what she is agitated about Moderately confident: I see it or hear is, we are together a lot, I would recognize it and do something about it Moderately confident: If I can figure out what it causing the agitation I can usually think of how to remove the problem Did you have any difficulty answering this question? If yes, explain why or in what way? No No No No No 3. Another question I asked was how confident you were in actually taking care of your relative s. 12 Can I actually take care of my mom s eating and drinking problems 16 When you are alone with your husband, how confident are you that you can handle his aggression Moderately confident: I said moderately because I always feel there is room for improvement, I am not an expert in everything Moderately confident: I said moderately because he had never been physically aggressive. I also feel I spend enough time with him to understand how to calm him down No No 58

60 17 If my mom is agitated, how confident am I in dealing with it 20 How confident am I in taking care of worsening confusion in my husband 19 How capable are you in taking care of your husband s agitation Moderately confident: If she is agitated and I can find out what the problem is, I ll know how to handle it Slightly confident: I try and keep him clam or help him remember and that might not be the best way Moderately confident: Once I understand what is going on, I can deal with is and take care of it. No No No Question 4. I also asked overall, in providing care for your (relative), how confident are you in your ability deciding what to do concerning dementiarelated behaviors that may occur, such as agitation. ID Can you restate this question, using your own words? 12 Dementia is accompanied by certain behaviors, can you handle dealing with this behavior 16 When you see changes in behaviors that are atypical (different than normal) how confident are you in deciding what to do 17 How confident am I in dealing with my mother s behavior changes related to dementia 20 How confident am I in deciding what to do about behavior changes related to dementia 19 How confident are you in your ability to assess dementia related behaviors You answered (insert). How did you arrive at your answer to this question? Moderately confident: I said moderately because while I feel pretty confident there are behaviors I have not experienced Somewhat confident: It is sometimes hard for me to know what is causing the agitation Slightly confident: for me it really depends on what is causing the change in behavior and how I decide to handle it Moderately confident: I said moderately because he gets angry and it hurts my feelings Moderately confident: Again, I need to figure out what is causing the agitation and decide what to do Did you have any difficulty answering this question? If yes, explain why or in what way? No No No No No 5. I also asked overall, in providing care for your (relative), how confident 12 Do you feel you can decide what to do about mental status changes Moderately confident: I based my answer off of experience and I am pretty good at deciding what to do about this No 59

61 are you in your ability deciding what to do concerning mood and/or mental status changes that may occur, such as confusion or depression. 16 How confident are you in your ability to handle changes in mental status that may occur 17 How confident am I in dealing with what to do about mental changes that may occur with my mom 20 How do I handle changes in mental status like confusion or depression 19 How confident am I in my ability to figure out what to do about mood changes Somewhat confident: Because my husband is still rational I have not had to deal with this yet Moderately confident: I based my answer off of past experiences, if it is depression I can work with my mom Moderately confident: I based my answer off of past experiences dealing with these problems Moderately confident: I need to figure out what is triggering the change Yes, this question was only hard to answer because it doesn t happen with my husband often and it can have many reasons and be hard to identify the causes Yes, not too hard to answer but it feels like a lot of parts to this question No No Question 6. Another question I asked was how true is it that when assisting your (relative) with, you did something you knew could put your own health or safety at risk. ID Can you restate this question, using your own words? 12 As part of taking care of my mom, were there times that I put my health or safety at risk. 16 When my husband was aggressive I did something that could put my safety at risk 17 When I was trying to help my mom did I do something where she could hurt me 20 When assisting my husband I did something that I knew could put my safety at risk You answered (insert). How did you arrive at your answer to this question? Slightly true: I said slightly true because it is not something I usually think about while taking care of mom. Slightly true: He is usually not physically aggressive so it is possible that I did something that could put my safety at risk Not at all true: For my mom, she is in a wheelchair and physically not that strong. I am worried sometimes that she might run over me, but I stay out of her path Not at all true: He s not been aggressive or physically harmful Did you have any difficulty answering this question? If yes, explain why or in what way? No No No No 60

62 Overall, in providing care for your (relative), how confident are you in your ability to decide what to do concerning new medical problems or events that may occur, such as falls, infections, or fever 12 Am I confident in knowing what to do about new medical events that may occur Somewhat confident: I said somewhat because I think I could handle it, but my mom is pretty healthy physically and I have not dealt with these things yet. No Overall, how confident are you that you d know what to do if your (relative) had an abnormal vital sign? 12 How confident am I that I would know what to do if my mom had an abnormal vital sign Moderately confident: I know the correct ranges, so I feel pretty confident about this No When providing care for your (relative), how confident are you in your ability to assess for dehydration 16 Could I figure out if he was dehydrated Moderately confident: Using my own experience even though he has never been dehydrated No Question When providing care for your (relative), how confident are you in your ability to gather information a medical provider would want When providing care for your (relative), how confident are you in your ability to understand what to do when your (relative) is in pain Can you restate this question, using ID your own words? 16 Could I gather symptoms and other problems a doctor would want to know 17 Do I understand what to do when my mom is in pain You answered (insert). How did you arrive at your answer to this question? Extremely confident: I feel I can do this, so I answered extremely confident Moderately confident: I can tell when she is in pain and I know how to react No No Did you have any difficulty answering this question? How true is it that You were able to decide if your 17 Am I confident in deciding when my mom needs medical Moderately true: I know when I should call the doctor or seek medical attention No 61

63 (relative) needed medical attention for When providing care for your (relative), how confident are you in your ability to assess for pain When providing care for your (relative), how confident are you in your ability to manage medical problems at home attention for agitation 20 Can I identify when my husband is in pain 20 How can I handle his medical problems at home 9. Now, I have a broader question. The interview asked about deciding what to do and actually taking care of your relative as two separate concepts. Do you see these at two separate concepts? Can you explain your thinking? 10. Are there any other questions that you would like to talk about? These may include questions you thought were difficult to answer, not relevant, or that you did not feel the response options allowed you to accurately answer. 11. Are there any questions you wish we would have asked concerning medical problems in your relative and your confidence? Moderately confident: He can still tell me when he is in pain, this might change when he can no longer do so Extremely confident: so far I have been able to handle what has come up 19 Yes In some respects yes, making a decision if he needs to go to a daycare center and actually making him go are two different things. He may need more help but can I actually give him more help. It s really hard for me to ask for help. Note from Kimberly-I probed a little further and asked For agitation-do you see a difference between deciding what to do about your husband s agitation and actually taking care of your husband s agitation? Respondent: Yes, I see those as two different things. Sometimes I know what to do, but I can t always do it 12 No 16 No 17 No 20 No 19 No 12 No 16 No 17 No 20 No 19 No No No 62

64 Appendix 3 Alzheimer s Medical Advisor - Caregiver Confidence in Symptom Management Instrument Caregiver ID: Relation to Care Recipient: Interviewer ID: Interview Number: 1 = One month 3 = Three months 5 = Five months After entering the interview number and before beginning the interview, go to page 2 and circle whether it has been one, two, or three months since the last interview; also insert the date of the last interview in the line provided on page 2. Today s Date: 2 0 M M D D Y Y Y Y 63