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Over 4.7 million older adults in America have some form of dementia and this number is expected to increase to 13.8 million by 2050 (Herbert, Weuve, Scherr, & Evans, 2013). Approximately 15.5 million people in the United States have cared for or are currently providing care for an elder with dementia, and an estimated 10 million of these caregivers are women (Bouldin & Andresen, 2010; Kasper, Freedman, Spillman, & Wolff, 2015). Recent reports have indicated that Americans provided more than 17.9 billion hours of unpaid care to individuals with some form of dementia, which equated to a monetary value of $217.7 billion (Alzheimer's Disease Association, 2015; Hurd, Martorell, Delavande, Mullen, & Langa, 2013). Although male dementia caregivers are increasing in numbers, women continue to be the majority care providers for this population; they tend to handle the more difficult caregiving tasks (Family Caregiver Alliance, 2013), often in addition to other caregiving roles such as of parents and grandparents (Collelo, 2009).
The length and complex nature of dementia care put more stress and strain on caregivers, adversely affecting their physical, mental, social, financial, and spiritual health (Alzheimer's Disease Association, 2015; Tremont, 2011; Fisher, et al, 2011; Brodaty & Donkin 2009). The consequences of this stress, such as increase in depression, fatigue, anxiety, cardiovascular diseases, are worse in women caregivers (Pinquart, & Sörensen, 2006; Vitaliano, et al., 2004; Sörensen, & Conwell, 2011; Alzheimer's Disease Association, 2015).
Interventions to reduce stress related to caregiving burden may benefit women dementia caregivers and improve their physical and mental health. Our pilot intervention study on these caregivers suggested a significant need for intervention to reduce stress and depressive symptoms (Zauszniewski, Lekhak, Yolpant, & Morris, 2015). Pinquart and Sorensen (2006) completed a meta-analysis of 127 intervention studies conducted between 1982 and 2005 for caregivers of persons with dementia. Types of interventions included in the meta-analysis were psychoeducational, cognitive-behavioral therapy, counseling/case management, general support, respite, training of the care recipients, and multicomponent interventions (Pinquart & Sorensen, 2006).
Interventions that were more structured and intensive tended to be more effective as than those that were unstructured. Overall, most interventions had small, but significant effects in decreasing caregiver burden, symptoms of the care recipient and depressive symptoms. A meta-analysis by Parker, Mills and Abbey (2008) on interventions to assist dementia caregivers in the community concluded that psycho-educational and multi-component interventions may provide more support to community dementia caregivers. Few studies, however, have evaluated intervention feasibility and acceptability among dementia caregivers (e.g., Judge, Yarry, & Orsulic-Jeras, 2009) and none have resourcefulness training in dementia caregivers.
Because of the high prevalence of dementia caregiver stress and strain, and the fact that women are the primary caregivers in most instances, it is important to examine interventions that provide women with skills to decrease stress and extend the time they are able to provide care to their loved ones. Our previous study of women dementia caregivers indicate that there is a significant need for resourcefulness training in this population (Zauszniewski et al., 2015).
Resourcefulness consists of cognitive and behavioral skills needed to maintain and promote health (Zauszniewski, 2006). These skills can be learned formally or informally, and there is evidence of beneficial effects of resourcefulness training in grandmothers raising grandchildren (Musil, Jeanblanc, Burant, Zauszniewski & Warner, 2013), older adults in retirement communities (Zauszniewski, Eggenschwiler, Preechawong, Roberts, & Morris, 2006), caregivers of the seriously mentally ill (Zauszniewski, Bekhet & Suresky, 2008), and chronically ill elders (Zauszniewski, Bekhet, Lai, McDonald & Musil, 2007). The acceptability and feasibility of resourcefulness training has been shown in grandmother caregivers (Zauszniewski, Musil, & Au, 2013), relocated older adults (Bekhet, Zauszniewski, & Matel-Anderson, 2012), and mothers of technology-dependent children (Toly, Musil, & Zauszniewski, 2014). However, no studies have examined the acceptability and feasibility of resourcefulness training for women dementia caregivers and none have explored whether giving caregivers a choice of method for practicing RT makes a difference.
Therefore, the purpose of the study reported here was to examine the acceptability and feasibility of resourcefulness training (RT) in women caregivers of elders with dementia. Of particular interest was the examination of the acceptability and feasibility of the two commonly used practice / self-reinforcement methods used within the RT intervention: journaling and digital voice recording. We were also interested in knowing whether allowing the caregivers to choose between the two methods would make the RT more acceptable and feasible than random assignment to either journaling or recording. Finally, we explored whether the acceptability or feasibility of the RT was related to the caregiver's stress, depressive symptoms, or resourcefulness before RT.
A convenience sample of 63 women caregivers of elders with dementia was recruited from the community through posting and distribution of flyers in community health centers, churches, and local businesses (e.g., grocery stores, department stores, restaurants, coffee houses, bookstores, libraries, etc.). The study was part of a larger study of women caregivers who received a variety of interventions. To be included in the study, women caregivers had to be in the role of caregiver for at least 6 months and live in the same household as the care recipient. Approval for the study was obtained from the University Institutional Review Board.
Resourcefulness training (RT) involves two essential components: 1) learning the eight skills constituting RT, which are taught by a trained interventionist during a single 40-minute session; and 2) practicing the skills on a daily basis in order to reinforce them, which is done independently by the intervention recipient. The interventionists were graduate students in the fields of nursing or social work who were trained to conduct the RT during half-day session where they learned the resourcefulness skills and reinforcement methods, how to teach them, and how to follow-up during phone calls during the 4-week intervention period. The training session also included a component where the interventionists practiced conducting the RT with each other and with other members of the research team.
The skills that were taught during the RT included three social (help-seeking) and five personal (self-help) resourcefulness skills. The three social resourcefulness skills are: relying on family and friends, exchanging ideas with others, and seeking professionals or experts. The five personal resourcefulness skills are: organizing daily activities, positive self-talk, positive reframing, changing from usual reactions, and exploring new ideas. During the training session, the women caregivers received a laminated reference card on which the eight skills were listed, which they were to review each day before completing their daily journal or verbal recording.
After the RT skills were taught, the caregivers received further instructions based on their assignment to the random RT-journal or RT-recorder or choice of the methods. Both journaling and recording are methods that have been used for practice and self-reinforcement in previous RT research (Bekhet, et al, 2012; Toly et al, 2014; Zauszniewski, et al, 2013). Through daily reflection using either the verbal or written modality, the intervention recipient is prompted to think about the RT skills they used that day and the degree to which the skills used helped to alleviate caregiver stress as well as to plan for future use of other RT skills. Therefore, as a part of the RT, the caregivers were taught to use journaling) or recording for daily reflection on the skills they used (i.e. practiced) each day, how well they worked and what others they would plan to use in their daily caregiving.
The caregivers were asked to use the written journal or voice recorder each day for the following 4 weeks to practice the eight RT skills. The caregivers in the journal condition (either random or by choice) were asked to write 3-5 pages in a daily journal; caregivers in the recorder condition (either random or by choice) were asked to use a digital voice recorder for 5-7 minutes each day. The suggested number of pages for writing or minutes for recording was established from prior research where the RT was developed and is consistent with other studies of the RT intervention (e.g., Zauszniewski, et al, 2013). The caregivers were also told that if they became distressed while journaling or recording, they should stop. They were given contact information for places where they could receive immediate psychological support if needed.
During the 4 weeks of practice / self-reinforcement, the interventionists made weekly phone calls to remind the caregivers about journaling or recording; if days were missed, they were asked to “catch up” by summarizing that day. During these calls, the interventionists assessed caregivers' level of comfort or distress in relation to the intervention and were trained to make referrals for psychological support if needed.
To evaluate the acceptability and feasibility of the two methods for practicing / reinforcing RT, both qualitative and quantitative measures were used. Data for this analysis were collected on questionnaires that were administered before or after the RT and from the journal or recorder data obtained during the 4-week intervention period.
The characteristics of the women caregivers were assessed by a self-report demographic questionnaire which contained items about age, race/ethnicity, marital status, education, income, and number of health problems, noted from a checklist of ten leading health problems common among women: heart disease, cancer, stroke, respiratory disease, diabetes, hypertension, osteoporosis, kidney disorders, mental disorders, and HIV/AIDS (U.S. Department of Health & Human Services, 2003).
Caregivers also completed measures of stress, depressive symptoms and resourcefulness prior to RT, which were examined in relation to the number of days and number of words written or spoken (i.e. word counts) that they performed the practice / self-reinforcement component of the RT that involved either journaling or digtal voice recording. A complete description of the measures of stress, depressive symptoms, and resourcefulness appear in Table 1.
Daily journal entries and digital recordings provided qualitative data that were examined for frequency of use of resourcefulness skills and descriptions of use of the RT by the caregivers that reflected acceptability or feasibility of the intervention. The number of pages (journal) and minutes (recorder) were also used as indicators of acceptability and feasibility. The number of days and word counts were computed from the journal and recorder data to determine whether one method (journal versus recorder) was more acceptable and feasible than the other and whether choosing between the methods made a difference.
Open-ended questions to assess acceptability and feasibility were asked of the caregivers after they completed the training and the practice components. To determine acceptability, we asked the caregivers to describe the most and least interesting aspects of the RT intervention. To assess feasibility, we asked them to describe the easiest and most challenging aspects of the RT intervention.
The data analysis involved exploring differences in the acceptability and feasibility of two methods for practicing resourcefulness skills (journal versus recorder) and differences in acceptability and feasibility between assignment to a practice method (journal or recorder) versus allowing a choice between journaling and recording. T-tests were used to examine differences in the number of practice days and word counts by practice method (journal versus recorder). Oneway ANOVA was used to explore differences in the number of practice days and word counts across the four groups defined by practice method and random versus choice conditions (i.e. random journal, random recorder, choice journal, or choice recorder). Pearson's correlations were used to examine whether the number of practice days and word counts were associated with caregiver stress, depressive symptoms, or resourcefulness. Finally, content analysis was used to determine themes that emerged from the caregiver responses to the open-ended questions assessing the acceptability and feasibility of the RT intervention.
Demographic features of the 63 women caregivers who participated in this analysis are summarized in Table 2. The average woman caregiver was 57 years old and fairly healthy. More than half (51%) were married and fairly well educated, with 45% having a college degree. More than half (54%) were Caucasian; 41% were African American. Because there were 4 caregivers (6%) from whom journals (n = 2) or recordings (n = 2) were lost / not retrievable, some of our feasibility analyses included 59 women caregivers.
Prior to the RT intervention, the women caregivers completed measures of perceived stress, depressive symptoms, and resourcefulness. In the total sample (N = 59), the pre-intervention scores on perceived stress and depressive symptoms indicated that these caregivers had fairly high stress levels (M = 27.31; s.d. = 7.85) (Cohen, Kamarck, & Mermelstein, 1983; Shah, Hasan, Malik, & Sreeramareddy, 2010) and mild depressive symptoms (M = 14.46; s.d. = 9.57) (Radloff, 1977). On average, the caregivers' resourcefulness scores (M = 84.83; s.d. = 17.59) indicated a moderate level of need for learning resourcefulness skills (Zauszniewski, Au, & Musil, 2012; Zauszniewski, Lekhak, Yolpant, & Morris, 2015). There were no significant differences on stress, depressive symptoms, or resourcefulness by practice method (journal versus recorder) or by condition (random versus choice). In addition, neither the age of the caregiver or the relationship with the care recipient (i.e. daughter versus wife) were associated with the number of practice days for journaling or recording or the number of words written or spoken (i.e. word counts).
We examined differences in the number of days of journaling and recording and in the word counts obtained with each method and by random versus choice condition. In the total sample of caregivers, the average number of practice days, regardless of method or random versus choice condition, was 22.66 (s.d. = 13.67) out of the 28 optimal days. Word counts across methods averaged 3,916.36 words (s.d. = 4,930.00). Table 3 shows the means and standard deviations for days and words for the total sample (N = 59) and the four subgroups defined by practice method (journal or recorder) and by random or choice condition. Results from oneway AVOVA to examine differences in the four groups and from independent samples t-tests to uncover differences between the journaling and recording methods are also displayed.
As noted above the possible number of days for practicing RT was 28. As shown in Table 3, the number of days for caregivers in the journaling group was on average 10 days more than the number for the voice recording group and this difference was statistically significant. The difference in the word counts between the two methods was also substantial, though in the opposite direction: those in the recorder group used on average twice as many words, although this difference was not statistically significant.
Next we examined the caregivers' perceived stress, depressive symptoms, and resourcefulness in relation to the number of days of practicing the RT intervention and the word counts in their journals or recordings. We also looked for differences between those who were randomly assigned and those who were given a choice between the two practice methods. We found no significant associations between these variables and the number of practice days or word counts in the total sample of women caregivers (N = 59). There was only one significant correlation in the women caregivers randomly assigned to recording: fewer practice days correlated with greater resourcefulness (r = -.50, p = .05). Otherwise, there was no discernable pattern of associations across the two practice methods or random versus choice conditions.
To further evaluate the two methods for practicing RT and random assignment versus having a choice, we queried the women caregivers on the most and least interesting and the most and least difficult aspects of the RT intervention. Table 4 describes the themes that emerged from open-ended questions used to assess the acceptability and feasibility of the RT intervention for the women dementia caregivers by practice method and by choice versus random condition.
When asked what was most interesting or acceptable about the RT intervention, 17% (n = 10) of the total sample of women caregivers (N = 59) gave responses that were related to the data collection process or the interventionist but unrelated to the actual intervention, 3% (n = 2) said everything was interesting, and 14% (n = 8) provided no response. Almost 10% (n = 6) found performing the RT skills interesting, and 25% said the practice method itself was interesting. About 37% (n=22) of the women caregivers found most interesting the fact that they experienced positive effects of the RT intervention, including increased self-awareness, confidence, patience, tranquility, and feeling cared about/supported by others.
When asked what was least interesting about the RT intervention, 61% (n = 36) of the total sample of women caregivers said there was nothing about the intervention that was unacceptable to them. A few caregivers (5%, n = 3) provided responses that were related to the data collection process or interventionist but unrelated to the actual intervention. Almost 8% (n = 5) said the RT intervention was too time-consuming, and nearly 8% (n = 5) said the RT was not helpful to them. One caregiver who chose to use the recorder said that performing the RT skills was not of interest to her, and one other caregiver, who also chose to use the voice recorder, said that remembering to practice the RT skills was unappealing. One caregiver who was randomly assigned to the journaling method found that expressing her thoughts and feelings was wearisome. Finally, nearly 19% (n = 11) described the method for practicing the RT skills as the least interesting aspect of the intervention.
Next, when the women caregivers were asked what was the least challenging (i.e. feasible) aspect of the RT, 20% (n = 12) of the total sample (N = 59) provided no response, while 24% (n = 14) provided responses that were related to the data collection process or interventionist, but unrelated to the RT. About 24% (n = 14) said that performing the RT skills was the least challenging, while 29% (n = 17) described the practice method as least challenging. Interestingly, nearly 10% (n = 6) of the caregivers described the beneficial effects they received from the intervention, including increased self-awareness and self-confidence and feelings of inner peace.
Finally, when asked what was the most challenging aspect of RT, 20% (n = 12) of the total sample of women caregivers (N=59) said no part of the RT was difficult while almost 10% (n=6) responded about data collection process or interventionist, but not the actual intervention. One caregiver, who was randomly assigned to use the voice recorder, found all aspects of the RT intervention challenging. Another caregiver, who chose the journaling method, voiced concern about privacy, i.e., worry that family members might find her journal. Performance of the RT skills was described as challenging by 6% of the caregivers. Finding the time to practice was problematic for nearly 19% (n = 11) of the caregivers. Nine women (15%) said that collecting their thoughts before engaging in the practice session was challenging, two caregivers said that expressing their feelings during the practice method was difficult for them, and seven (almost 12%) said that managing their feelings after completing a practice session was hard. Finally, nine women caregivers (15%) said the practice method was the most challenging aspect of the intervention.
This study is the first to evaluate the acceptability and feasibility of two resourcefulness training (RT) methods (journaling and voice recording) for women caregivers of elders with dementia and looked at whether providing a choice between these two methods made a difference. The mean age of the sample was 57 years which is very close to the age of samples of dementia caregivers in other studies (Boots, Vugt, Knippenberg, Kempen, & Verhey, 2014; Moon & Adams 2013; Thomas et al, 2006). However, the ages of participants ranged from 29 to 87 years. Thus, while the intervention can be used by women of all age groups it might be useful to explore types of methods acceptable and feasible for different age groups.
Forty one percent of the caregivers were African American and 54% were Caucasian, suggesting that RT may be acceptable and feasible for women caregivers in both racial groups. Over 80% of the sample reported having more than high school level of education; however only 45% had a college degree or more, which could have played role in their participation and engagement in practice methods. This pilot study had small sample size, however, the diverse demographic distribution of the women caregivers strengthens the interpretation of the descriptive findings in read to the feasibility and acceptability of RT.
At the baseline, women caregivers had a fairly high stress level and a mild level of depressive symptoms, which did not reach the threshold for psychological distress (CESD ≥ 16). However, their resourcefulness scores indicated they had substantial need for resourcefulness training (Zauszniewski et al., 2015). Neither the stress nor depressive symptom scores were correlated significantly with number of days or word counts for either of the two practice methods (journaling or recording), providing support that depressive symptoms and stress do have significant effect on RT practice methods. Similar findings were reported in a study of grandmother caregivers (Zauszniewski, et al, 2013). Therefore, RT appears to be feasible for women caregivers of elders with dementia regardless of the presence of stress or depressive symptoms.
However, we found that for the women caregivers who were randomly assigned to use the recorder to practice resourcefulness skills, greater resourcefulness was associated with fewer days of recording, which might indicate that they did not find the recording to be useful to them (i.e. acceptable) because they were already highly resourceful. However, a similar finding did not emerge in the caregivers who used the journal. That is, greater resourcefulness was not associated with few days of journaling. In addition, no relationship between resourcefulness and practice days or word counts was reported in the RT feasibility study conducted in grandmother caregivers (Zauszniewski, et al, 2013). Thus, the significant correlation between practice days and resourcefulness in the random recorder group may have been due to chance, considering the number of correlations performed and the small sample sizes across the caregiver groups defined by practice method (journal versus recorder) and condition (choice versus random). Further examination of the acceptability and feasibility of RT in larger samples and in relation to level of resourcefulness pre-intervention is suggested.
The findings also showed that the journaling method of practice was used more consistently by the women caregivers than the recorder method but more words were expressed during recording than in journal entries. This finding is also consistent with the study of acceptability and feasibility of RT conducted with grandmothers raising grandchildren (Zauszniewski et al., 2013). However, in contrast with the grandmother caregivers, the women dementia caregivers appeared to prefer the use of the journal for practice over the digital voice recorder.
Common themes that emerged from open-ended questions regarding the acceptability and feasibility of the RT included the perceived benefit of the intervention, time commitment, use of the resourcefulness skills, need to express thoughts and feelings in writing or recording, and the practice method (journal versus recorder). While the potential benefit of RT and the use of resourcefulness skills were viewed more frequently as a value than a concern, the time commitment involved and need to express thoughts / feelings associated with skill use emerged as concerns irrespective of practice method or choice versus random condition. The method of practice was more of a concern for those who were randomly assigned to a method and valued most among caregivers who chose the journal method to practice / self-reinforce resourcefulness skills.
Interestingly, similar themes emerged from the qualitative assessment of acceptability and feasibility of the RT intervention in grandmother caregivers (Zauszniewski et al, 2013) in which the grandmothers shared similar challenges in regard to time commitment and the sharing of thoughts and feelings about their use of resourcefulness skills. However, prior to the study reported here, studies of RT have not examined whether providing a choice between use of a written journal versus a voice recorder for practicing / reinforcing resourcefulness skills would make the RT more acceptable or more feasible. The findings from this study of women dementia caregivers showed that the method of practice (journal versus recorder) was more frequently a concern for those who were randomly assigned to a method. However, it was valued most highly among the women caregivers who chose the journal method to practice / self-reinforce resourcefulness skills.
Although the quantitative and qualitative data obtained in this study suggest that both practice / reinforcement methods used during resourcefulness training (RT) may be acceptable and feasible for women caregivers of elders with dementia. Future RT trials should consider allowing participants to choose a method for practicing and reinforcing the RT skills. Because intervention acceptability and feasibility are important for testing the effectiveness of RT in future studies, alternatives to the journaling and recording methods for practicing RT skills should also be considered (i.e. group process, texting, etc.) Coupled with previous findings showing a substantial need for resourcefulness training among women dementia caregivers (Zauszniewski et al., 2015), the results from this study suggest that a next step is the establishment of intervention fidelity and effectiveness in relation to caregiver stress and health.
Dr Jaclene A. Zauszniewski, Case Western Reserve University, Bolton School of Nursing, 10900 Euclid Avenue, Cleveland, 44106-4904 United States.
Mrs Nirmala Lekhak, Case Western Reserve University, Cleveland, United States.
Dr Betty Napoleon, Case Western Reserve University, Nursing, Cleveland, United States.
Dr Diana L Morris, Case Western Reserve University, Nursing, Cleveland, United States.