Abstract
This study sought to determine the perceived benefits of the Residential Care Transition Module (RCTM), a novel multi-component, psychoeducational/psychosocial, telehealth intervention for caregivers of cognitively impaired relatives living in residential long-term care (RLTC). Few support programs exist for these caregivers. Determining the intervention’s mechanisms of benefit will provide actionable clinical and research information regarding which key features aspects RLTC and public health agencies should offer their families. We conducted semi-structured interviews with 30 purposively selected participants randomly assigned to receive the RCTM. Additionally, an open-ended survey question solicited feedback at 4 (n = 90), 8 (n = 79), and 12 months (n = 77). Available qualitative data were analyzed for thematic content. Participants endorsed 9 mechanisms of benefit. Six mechanisms were related to RCTM content: education dementia progression and dementia behavior management, personalized resource provision, strategies for communication and engagement with the care recipient (CR) and others, management of multiple roles, and relaxation exercises. Three mechanisms were related to coaching: emotional support, knowledgeability, and being a neutral third party. Common benefits attributed to RCTM included improvement in mood, caregiving confidence, and communication and interactions with CR and others. Using qualitative data and analyses, we discovered the most valued aspects of the RCTM intervention. These mechanisms of benefit have not been described in the literature. Notably, we were unable to detect mechanisms of benefit in a separate analysis utilizing quantitative data. Findings emphasize the importance of including qualitative measures in intervention research and selecting quantitative measures that reflect the intervention’s real effects, if any.
Dementia care research suggests that outcome measures do not completely reflect the perspectives and needs of people living with dementia and their caregivers. Gathering qualitative data allows for the incorporation of participants’ experiences that were not captured in traditional outcome measures which leads to a better understanding of dementia care interventions.
Understanding the mechanisms of benefit of an intervention is essential for dissemination and future implementation. This manuscript describes in detail how the Residential Care Transition Module intervention “works” for participants which has not been described in the literature before.
This manuscript demonstrates another instance where qualitative and quantitative data do not align in dementia care research. It suggests that by using person-centered goals and evaluating change in goal behavior, the effectiveness of tailored interventions may be more accurately determined.
Introduction
One of the many challenging aspects of providing unpaid care to individuals living with Alzheimer’s disease and related dementias (ADRD) is its often lengthy trajectory. 1 Throughout the course of dementia, a number of key care transitions (changes in disease course, provider, or setting of care; see Callahan et al) 2 may occur, complicating the care experience for family caregivers.3 -5 The transition of admitting a relative to a residential long-term care (RLTC) setting, such as a nursing home or assisted living memory care unit, has been associated with numerous challenges for families, ranging from guilt to navigating staff-resident relationships. 6 As part of a larger randomized controlled evaluation of a psychosocial and psychoeducational intervention for family caregivers of relatives living with dementia in RLTC, we utilized qualitative data to elucidate whether and how/why caregivers deemed the intervention useful and effective.
Dementia Caregiving and Institutionalization
Prior research has indicated that although direct personal care provision is reduced following a relative’s entry to a RLTC setting, family members often engage in other tasks such as communicating with RLTC staff to ensure quality care is provided.7 -9 Studies suggest that if a relative’s health condition worsens, the amount of time families spent caring may increase.10,11 Other studies found that family involvement and visits are associated with improved resident outcomes, and that such empirical associations are moderated by quality communication with RLTC staff.6,12 -17 Although some studies18,19 have found that family caregiver burden and depression are reduced significantly following a cognitively impaired relative’s move to RLTC, other studies (particularly qualitative efforts) have indicated that families experience complex emotions, such as guilt.6,20
In response to the potential challenges of institutionalization, several interventions have been developed and tested to support family caregivers in this transition. Such approaches have targeted various mechanisms, including enhancing the family-staff relationship, family roles/meaning post-RLTC admission, and inclusion of families in decision-making in RLTC settings.21 -24 Although these intervention strategies have yielded modest benefits, evaluations sometimes lack rigor and, moreover, insight into why such interventions prove beneficial remains limited.
While there are a number of meta-analyses and systematic reviews examining the efficacy of non-pharmacological interventions to support unpaid dementia caregivers,25 -27 methodology varies, and dementia care intervention literature suffers from a lack of experimental rigor, sample limitations, limited follow-up, measurement concerns, and nonspecific reporting of intervention type.25 -29
Perhaps a more critical consideration in dementia care science is whether there is an appropriate/effective understanding of the mechanisms of benefit of non-pharmacological interventions: in other words, do we actually know why or how a given intervention is effective for dementia caregivers, or perhaps as critically, why not? If mechanisms of an intervention’s benefit are unclear, attempts to translate the intervention for dissemination and implementation in broader clinical, community, and cultural contexts becomes more difficult.30 -32
Capturing Participant Voices
Many dementia care interventions are tailored to the needs of participants, but existing, validated quantitative measures (eg, burden, depressive symptoms) may not capture the full experiences nor expectations of intervention recipients. 33 Among dementia care interventions that collect qualitative data during or following quantitative data collection, a disconnect is sometimes apparent: inconsistent statistical or clinical differences are found using empirical outcome measures while anecdotal data indicate that participants perceive considerable utility and benefit. One methodological approach to better understand this discrepancy is the incorporation of systematic, open-ended, longitudinal qualitative data within traditional, quantitative evaluation designs (eg, randomized controlled trials). For example, in “embedded” mixed methods designs, 34 open-ended information about the feasibility, acceptability, utility, and perceived benefits of an intervention received by participants in a treatment group may offer insights into the reasons why a given program may be potentially effective. Moreover, if the collection of qualitative data within a randomized controlled design highlights points of divergence between quantitative outcomes and qualitative themes/findings, such results may point to the need for critical refinement in what measures would best reflect the benefits of an intervention and its mechanism(s) of action. 35
In addition to advancing the science of empirical measurement of dementia care intervention efficacy/effectiveness,29,36 relying on inductive, constructivist methodologies that allow recipients to voice their preferences, expectations, and perceived benefits of interventions may further highlight how researchers can effectively capture changes that more faithfully reflect dementia caregivers’ experience.
The purpose of this study was to implement longitudinal qualitative methods (open-ended surveys, post-intervention semi-structured interviews) within a randomized controlled evaluation to understand how and why a multi-component intervention for caregivers of cognitively impaired relatives living in RLTC (eg, nursing homes, memory care units, or assisted living units was perceived as beneficial, useful, and effective by participants. 37 The Residential Care Transition Module (RCTM) was a 6-session telehealth, psychoeducational and psychosocial intervention delivered by Transition Coaches (TC) over 4 months with the option for continued, ad hoc consultation for the remainder of a 12-month study period. The intervention provided personalized content with a focus on self-care, caregiving skill-building, and stress management. See Table 1 for details about the RCTM modules and delivery format. The RCTM was hypothesized to provide psychosocial support to alleviate stressors and negative health outcomes following a relative’s admission to RLTC. Empirical measurement suggested several indicators that seemed to moderate the efficacy of the intervention on measures of self-efficacy and similar domains; however, in general, the RCTM did not exert direct, statistically significant effects on a wide range of caregiver outcomes (eg, competence, depression, adjustment to RTLC). 38 Utilizing the qualitative data allowed researchers to more fully examine how caregivers perceived the utility and benefits of the RCTM beyond the empirical measures. The overarching question guiding this qualitative analysis: Why was the RCTM perceived as useful and effective (or not useful and ineffective) among dementia caregivers who received the intervention over a 12-month period?
Residential Care Transition Module Intervention Foci.
Note. Prior to beginning the modules, all participants completed an exploratory session with their coach to gain insight about their unique caregiving experience. Modules were delivered in an order tailored to participant’s needs.
Methods
For a detailed description of the RCTM study protocol, see Gaugler et al. 37 The study was approved by the University of Minnesota Institutional Review Board (1511S80406).
Recruitment and Design
Eligibility criteria required participants to self-identify as the primary unpaid caregiver (most involved in visiting and providing assistance) to a CR with a diagnosis of AD/ADRD residing in any RLTC community in the United States. Caregivers were required to be English-speaking and at least 21 years old. Individuals involved in one-to-one psychosocial consultation specifically for caregiving or those who had changed dosage of psychotropic medications within the past 3 months were excluded from participation. Participants were recruited via newspaper and social media advertisements, University of Minnesota research websites, the principal investigator’s University of Minnesota Caregiver Registry, and RLTC settings who shared recruitment materials with caregivers.
Of 475 family caregivers contacted about the study, 209 were excluded due to ineligibility or lost to follow-up, and 26 were non-primary caregivers who enrolled with their primary caregiver. 37 Participants signed an electronic or mailed consent form. Following the completion of a baseline survey, all 240 participants were randomly assigned to a treatment or control group on a 1:1 schedule. Participants received follow-up surveys four, eight, and 12 months after baseline via mail, phone, or online, and were incentivized $25 for each survey completed. After each follow-up survey, treatment group participants were sent a separate Treatment Review Checklist (TRC) measure.
Intervention
The RCTM is a 6-session semi-structured intervention tailored to the caregiver’s needs. The first 3 sessions are weekly and the final 3 are monthly. Sessions occurred via phone or video conferencing. The RCTM offered training, skills, and counseling to achieve effective communication, solve problems, and enhance interactions with the CR, other family members, and staff.37,39 Author JG created the RCTM with a clinical expert with expertise in family systems based on the Coleman Care Transitions and New York University Caregiver Interventions (NYUCI).40,41 The RCTM was pilot tested (see Gaugler et al). 42 Program content and features are included in Table 1.
Treatment Review Checklists
The TRC included 21 closed-ended items regarding intervention utility, acceptability, and fidelity. Each item was scored on a 5-point Likert scale (1 = strongly disagree, 3 = neutral, 5 = strongly agree). An open-ended question, “Please add any other ways that the individual or family counseling has been helpful to you, or any other comments that you have about the Residential Care Transition Module,” produced qualitative feedback on the intervention. The TRC was developed by the PI based on elements that emerged from the NYUCI. 41
Semi-Structured Interviews
Author EA and one staff conducted the interviews via telephone using a 14-question semi-structured interview guide. The pilot tested guide, developed by the PI, was based on the NYUCI (see Appendix A).41,42 Questions probed the potential benefits and drawbacks of the RCTM: for example, if RCTM affected stress, well-being, and burden levels and if receipt of the RCTM influenced participants’ interactions with their CRs, staff, or other family.
Of 120 treatment group participants (excluding 5 who declined an interview upon original consent), 30 were asked and agreed to complete interviews from early 2018 to mid-2021. A sample of size of 30 interviews is considered adequate for our semi-structured interview selection approach, particularly when utilizing purposive sampling.43,44 These interviews were designed to assess how and why the RCTM did or did not result in emotional and psychological benefits for participants. Interviews were typically completed within 3 months of the receipt of 12-month surveys (2 were conducted between 4-6 months of final survey completion). Interviewees were compensated $25 for their time.
Participants were purposively selected for the semi-structured interviews throughout the duration of the study based on TRC scores. Those who indicated either relatively high or moderate/low overall perceived benefit and utility of the program (average TRC closed-ended item scores across four, eight, and 12-month surveys) were selected. Only 6 participants had average TRC scores lower than 3 (one declined the interview at consent; another 2 were deemed not a good fit based on consistent difficulty with session scheduling and/or survey return). Thus, criteria were modified to include an interview sample with average TRC scores of 4 to 5 representing satisfaction and scores below 4 representing those less satisfied with the RCTM. Gender, relationship to the CR (ie, spouse/non-spouse, including adult children, siblings, nieces/nephews, and neighbors), and time since RLTC placement (less than or greater than 3 months) were also applied as strata to further select a varied sample of participants.
Data Analysis
Interview audio recordings were professionally transcribed and organized in NVivo 12. 45 Braun and Clarke’s 6 steps of thematic content analysis were applied to conduct a reflexive thematic analysis of the transcripts. 46 Biweekly team meetings facilitated analysis. Efforts were made to establish rigor and trustworthiness by developing the codebook with all team members, double coding interviews, and peer debriefing. We aimed to analyze and present the findings in a way that best represents the interviewees’ experiences, as explained in their own words throughout the manuscript. Initially, team members familiarized themselves with the interview content by reading through multiple transcripts and generating initial codes. Codes were categorized, creating preliminary themes and sub-themes. An iterative process was used to create a codebook, which was frequently reviewed and refined by the analytic team and used to compare themes, connections, and explanations. Data saturation was reached when after reviewing interviews the team could not find new content not already included in the codebook. Using the finalized codebook, 2 team members independently coded each interview transcript and open-ended TRC questions; 6 team members coded qualitative content in total. The codes were then combined into larger groups to develop the overall themes. Neither transcripts nor results of analysis were returned to participants for feedback. The percent agreement for TRC open-ended responses was 76% at 4 months, 77% at 8 months, and 81% at 12 months, and the kappa for the interviews was 0.45.
Results
Interviews
Thirty semi-structured interviews were conducted. All interviewees were White (98% of the treatment group was White), 66% were women, and their average age was 64 (SD = 11.4). Interviews lasted 30 min on average (SD = 12.7; range 15-70 min). Characteristics of interviewees are included in Table 2.
Characteristics of Treatment Review Checklist Open-Ended Question Respondents and Interviewees.
TRC: Treatment Review Checklist.
Non-adult children participants: 4 months n = 5 (5.6%); 8 months n = 6 (7.6%); 12 months n = 6 (7.8%).
Adult children (n = 16); daughter-in-law (n = 1).
The 30 interviewees’ TRC average scores and ranges: 4 months mean = 4.22 (range = 1.71-5); 8 months mean = 4.32 (range = 1.95-5); 12 months mean = 4.24 (range = 1.48-5).
Treatment Review Checklist Open-Ended Item
Most treatment participants completed the open response item at all time points (4-months n = 90; 8-months n = 79; 12-months n = 77). Most respondents were women (range: 83-89% depending on the time point). Approximately 25% to 30% of respondents were spouses. See Table 2 for details on characteristics of TRC respondents.
Thematic Analysis
Themes from the interviews and TRC comments are presented below; names are pseudonyms. As summarized in Table 3, two higher level themes were determined: I. Mechanisms of benefit (aspects of RCTM participants said made the most difference to them) and II. Outcomes attributed to the intervention (improvements or changes participants noted from RCTM). Subthemes are delineated under these themes.
Subthemes of Mechanisms of Benefit and Outcomes Themes.
1. Mechanisms of benefit
There were 9 RCTM mechanisms participants identified as beneficial. Broadly, these mechanisms of benefit provided information and strategies, as well as coach support. Each of the mechanisms of benefit influenced participant outcomes.
A. Information and strategies
1. Dementia education. Participants frequently commented on the value of learning about dementia, such as how dementia affects the brain, behaviors, and emotions. Erika (daughter, age: 45, <3 months, interview) expressed how she gained an understanding of her father’s experience, providing: “A better understanding of why behaviors would come up and what he might have been feeling in those times.”
Participants appreciated learning strategies to effectively respond to their relatives’ behavior and emotions. Sue (wife, age: 83, <3 months, interview) highlighted that: “Having someone that can explain from a medical perspective like some of the actual physical changes going on in his brain . . . and offer suggestions on how to deal with behaviors; those are things I don’t think I could have found on my own.”
Participants also appreciated that they were advised on, and could plan for, issues that may occur in the future. They valued discussions of how care may change as the disease progresses. Joan (daughter, age: 48, <3 months, interview) explained that discussing “what is happening with Mom and then what this disease might look like in the future helped me to be confident that I can still relate to Mom as a daughter with wherever Mom is in that disease.” Participants shared how learning more about the CRs’ dementia increased their understanding of their own reactions, decreased their stress, helped them make better decisions and plan for the future, and provide better care for their CRs.
2. Communication strategies. Participants indicated that the intervention included a range of approaches for supporting communicating with their CR, facility staff, and other family members. For instance, Rose (daughter, age: 59, >3 months, interview) shared how the communication technique she learned during the intervention helped her become more patient and treat her mother with dignity: “Rather than asking ‘Do you remember this or that?’ being able to just bring up in a story ‘So-and-so is doing’ and repeating that over and over although you get tired of it. Recognizing that she doesn’t remember it.” Maggie (daughter, age: 64, <3 months, TRC 4 months) shared how she used the RCTM to communicate better with her family, indicating that referencing the RCTM “has been a good conversation opener in discussions with my siblings.” Additionally, conflict resolution was cited by participants as a communication skill that enhanced their ability to share concerns and successfully advocate for their CR with staff and family. Caregivers who received the RCTM underscored how communication skills improved their interactions with others.
3. Provision of outside resources. Participants valued the ability of TCs to provide information and resources to respond to concerns not directly addressed by the RCTM modules. The TCs located and shared resources specific to each individual’s needs, like books or grief support groups, and empowered participants to use available resources. Will (son, age: 55, >3 months, interview) detailed: “What I found encouraging was to just know the breadth and the depth of support that’s out there.” Additionally, TCs shared information about healthcare services. Maggie (daughter, age: 64, <3 months, interview) reflected on discussions about transitioning her mother to hospice care: “Overall, it was a positive thing. I think she encouraged me to bring it up a little bit too early. . . as it turned out she was right, maybe the timing was just a little ahead of before we were ready for it.”
4. Promotion of activities and engagement with care recipient. Participants appreciated the importance RCTM placed on embracing the unique histories of the CRs. Rose (daughter, age: 59, >3 months, interview) described “Just having something that I knew that she enjoyed in the past and using that as a way of sparking conversations. . . allowing her to enjoy something in the moment so that it gave us something to focus on.” Similarly, Ivan (husband, age: 72, <3 months, interview) found new ways to engage with his wife by incorporating his wife’s passion for music into his visits. Many participants emphasized how helpful they found brainstorming ideas for personalized activities and ways to engage with their CRs more successfully.
5. Management of responsibilities. Participants grappled with how to manage a diverse slate of responsibilities along with their caregiving role. They felt pressured to take care of their CR, their families, jobs, homes, social lives, and their own emotional well-being and physical health. Pam (daughter, age: 57, >3 months, TRC 4 months) wrote: “[RCTM] also afforded me the opportunity to share my life’s challenges outside of being a caregiver and how those play into my feelings and decision-making ability.”
6. Relaxation techniques. Several participants voiced their appreciation of the relaxation strategies included in the program. Rose (daughter, age: 59, >3 months, interview) explained:
I started practicing [relaxation techniques] every day just because I wanted it to be that well-ingrained so that I would be able to just shift right into that mode when I felt like I was getting upset with Mom or any other situation and felt over my head. That really helped me a lot, because then I was able to pull myself back out of that fight-or-flight kind of mode and just relax.
They felt that these strategies helped manage their stress reactions and used them to improve interactions with their CR and enhance care provision.
B. Support from transition coach
Participants identified 3 mechanisms of benefit specific to RCTM coaching.
7. Emotional support and reassurance. Above other valued aspects of coaching, participants emphasized the positive impact of emotional support and reassurance. Care provision focuses on the CR, not the caregiver. Participants appreciated that the TC was predominantly concerned with caregiver well-being. Maggie (daughter, age: 64, >3 months, interview) shared this sentiment: “Like somebody in my corner as opposed to, my mother being center stage.” Sue (wife, age: 83, <3 months, interview) shared that the TC “validated the way I was feeling, that it was something that wasn’t my fault if I felt that way.”
8. Knowledgeability. Participants valued the TC’s knowledge of dementia and the RLTC transition. Erika (daughter, age: 45, <3 months, interview) shared, “Instead of feeling lost and not knowing who to ask or what to do, I had someone I could ask who was resourceful and knowledgeable.” Brad (husband, age: 67, >3 months, interview) spoke to the comfort, “Having one more source of help, one more place to go to question, or to look for an answer without having to initiate it all on your own.” Participants appreciated that their TCs were a reliable source of information.
9. Neutral third party. Many participants discussed various benefits associated with talking to an objective third party (ie, someone outside of their family and friends). Sue (wife, age: 83, <3 months, interview) explained: “You hate to burden your friends talking about your ill husband 24/7. . . [the TC] was willing to listen.” Participants valued talking to the coaches, as some were not as comfortable discussing their CR’s condition and care with friends. Jodie (daughter, age: 62, >3 months, interview) shared this sentiment: “I don’t go to my friend group and say, "Hey, has anyone ever run into this problem with their parent?". . . some of the stuff is frankly kind of embarrassing . . . [the TC] was able to mitigate [the embarrassment] by using her experiences and knowledge.”
Some participants shared their relief about being able to talk to someone who did not expect them to be in charge and know everything related to their CR’s care. Participants also appreciated that the TC was impartial and non-judgmental. As Rose (daughter, age: 57, >3 months, interview) noted, “I felt like I had a resource that I could count on, and because it wasn’t somebody who was involved directly with Mom, it was somebody who’s a very impartial source of information and counseling, it helped tremendously.”
II. Outcomes attributed to the RCTM
The above 9 mechanisms of benefit contributed to 5 meaningful changes participants experienced within themselves and in their interactions with their CR, family, and healthcare professionals. Participants attributed these changes to the application of skills, information, and support they gained from the RCTM.
Participants described ways in which the RCTM affected them personally, specifically by improving their mood or emotional state, caregiving perspective, confidence, sense of community and interactions with their CR, family, and professional caregivers.
1. Mood and emotional impact. Participants expressed how the RCTM influenced their emotional well-being. In general, participants expressed that the program helped them deal with the RLTC transition. Rose (daughter, age: 59, >3 months, interview) explained, “If I hadn’t gone through all of the counseling, I don’t think I would’ve been able to handle the ups and downs the way I have.”
Some participants expressed that they were extremely stressed and burdened from their caregiving role, among other responsibilities, and the RCTM helped them cope. Erika (daughter, age: 45, <3 months, interview) noted that the RCTM decreased her overall stress. She explained that understanding what her father was experiencing, “rather than being upset,” allowed her to engage with her family and better attend to her various responsibilities.
The RCTM helped some participants, such as Nicholas (husband, age: 62, >3 months, interview), alleviate their stress because the coaching sessions allowed “you [to] get these feelings out and you kind of lessen your stress.” It was important for caregivers, such as Anisa (daughter, age: 63, >3 months, interview), to have “an opportunity to label what was going on” to acknowledge and validate their feelings of stress and burden.
Some participants expressed that the RCTM helped alleviate feelings of depression. Rebekah (daughter, age: 69, <3 months, interview) said that RCTM provided her with permission for self-care: “That’s a message you hear over and over. Even though we’re not doing daily care with Mom, it doesn’t mean that I’m not thinking about her, 24/7. So, yes, it helps me from being so blue and depressed.”
However, other participants did not think the program influenced their feelings of stress, burden, or depression as they were neither particularly stressed about their CRs’ situation nor experiencing significant depressive symptoms. Some participants attributed previously learned coping strategies and medication to managing their symptoms of depression.
2. Changed perspective on caregiving. An enriched understanding of dementia altered many participants’ views of their caregiving situation. Harris (son, age: 59, >3 months, interview) shared “one of the biggest benefits” he experienced was “understanding how to think through this differently and look at it from a different perspective.”
The RCTM also changed how participants viewed their CR’s dementia. Natalie (daughter, age: 37, <3 months, interview) said, “It’s hard for me to keep visiting her when I spend my time mostly talking to other people, not her. . . It reinforced the importance of being there, that I don’t always have to talk to her.”
Some participants shared how the RCTM helped them see their caregiving responsibilities differently. Will (son, age: 55, >3 months, interview) explained how the program helped him stop feeling like a “victim” and instead become more forward-thinking. Similarly, Brad (husband, age: 67, >3 months, interview) spoke of feelings of regret and failure, and went on to explain how the RCTM helped change his perspective, “[RCTM] gave me that tremendous sense that you’re useful, that you are positive to somebody else and that you can help.” Feeling upset or angry were common reactions to many of the participants’ situations, yet the RCTM helped them feel more at peace with their situation by seeing it through a new viewpoint.
3. Increased confidence in caregiving. The RCTM increased several participants’ confidence as caregivers. Some felt that the intervention increased their knowledge about caregiving either through the educational materials or by using skills learned in the sessions which increased their confidence. Maria (daughter, age: 51, <3 months, interview) shared how “after I got a little better equipped, and read some of the recommended readings. . . I felt much better equipped to handle him on a daily basis.”
4. Provided sense of community. Even though participants did not meet, some believed that the RCTM made them feel like they belonged to a community or group. Noah (son, age: 58, >3 months, interview) appreciated that the sessions “made me feel part of a community of people like myself, instead of one guy who had to take care of his mother.” Anisa (daughter, age: 63, >3 months, interview) echoed that the RCTM was a “reminder that you’re not alone.” Brianna (daughter, age: 60, <3 months, interview) found it comforting to learn that “everybody is kind of unique in their journey, but yet there are similarities.” The TCs reinforced that the experiences and feelings participants were going through were common among caregivers, which helped some participants acquire a sense of belonging to a caregiving community.
5. Enhanced communication and interactions. The RCTM influenced how some participants interacted with their CR, family, and professional caregivers. Some participants, like Rebekah (daughter, age: 69, <3 months, interview), expressed “know[ing] how to deal with her makes me more willing to go, and I have a positive experience when I’m visiting.” Being able to put the knowledge learned into practice helped caregivers engage with the CR. Anisa (daughter, age: 63, >3 months, interview) said: “I think I am better equipped to be with her, and not escalate behaviors.”
Other participants were able to remain more emotionally stable and patient during visits due to the RCTM, like Jessica (wife, age: 70, >3 months, interview), who said “my husband. . .. got a wife that wasn’t hitting the ceiling all the time [when he was angry]. He got someone that was calm.” Some participants believed they were able to provide better care to their CR because their overall stress level was better managed, such as through utilization of relaxation techniques. Many participants expressed that they had more enriched time with the CR because of the skills learned in the RCTM.
Some participants felt that the RCTM improved their communication and interaction with family members too. Abigail (wife, age: 77, >3 months, interview) expressed that she was able to increase her son’s involvement in caregiving by “Getting [him] a little bit more informed as to the immensity of care that my husband needed, and the immensity of what was happening to his health.” Maria (daughter, age: 51, <3 months, interview) described how the communication skills reviewed in the intervention helped with family conflict: “[The TC] was really good about suggesting ways to approach or when it was best not to even say anything about it [to other family members] . . .Yeah, it definitely helped us keep peace in the family.”
The intervention also helped some participants interact more frequently or effectively with professional care providers, especially staff members at their relatives’ RLTC facility. Participants noted that learning new communication skills helped them feel prepared and empowered as caregivers. Joan (daughter, age: 48, <3 months, interview) reflected that the TC “helped me have a really critical conversation with the staff at the facility . . . [the TC and I] talked about particular language that I might [use]. . .we rehearsed a little bit.” Maria (daughter, age: 51, <3 months, interview) specified that the TC encouraged her to provide specific feedback for facility staff. Learning and applying communication skills in discussions with RLTC staff led to better relationships and communication for some of the participants, which may have improved care provision.
Occasionally, despite learning RCTM approaches, well-established habits of engaging with the CR were hard to break. Not all participants felt more engaged with the CR during visits. Noah (son, age: 58, >3 months, interview) said that “staying engaged with my mom was always a challenge for me. . . I don’t know that RCTM changed that at all.” For Sophia (daughter, age: 73, >3 months, interview), it was hard to break out of old patterns with the CR, “I think that interactions were established over a long period of time, so I don’t really think that it affected our interactions very much.” Some participants did not think RCTM affected their family interactions either, because “they don’t interact” (Lisa, daughter, age: 62, >3 months, 12-month TRC) or the caregiver was “kind of going it solo at this point” (Johnathan, husband, age: 59, >3 months, interview).
Other caregivers felt the intervention did not impact their communication with professional caregivers. Sue (wife, age: 83, <3 months, interview), expressed how she already felt confident expressing her concerns to RLTC staff before the intervention. For participants who had more experience communicating with professional caregivers or had a higher sense of confidence, the RCTM had little to no influence on their communications with professional caregivers.
Discussion
Caregiving does not abate when a care recipient moves into RLTC. 14 Caregivers continue to experience stress and burden along with the introduction of new caregiving responsibilities. However, there are very few interventions focused on supporting these caregivers. The RCTM was designed specifically to educate and help support dementia caregivers whose CR had transitioned into RLTC. By embedding longitudinal, qualitative data collection within the randomized controlled evaluation of the RCTM, our team was able to better discern both how and why the RCTM was or was not perceived as effective for participating dementia caregivers. Moreover, the qualitative data highlighted new domains of influence that our quantitative outcome measures failed to capture. The current study is innovative and novel in its use of multiple data collection methods during the course of this unique intervention for dementia caregivers of individuals living in RLTC. The findings may inform other dementia care interventions to adopt similar designs to fully explore mechanisms, measurement, process, and fidelity/implementation considerations.
An overwhelming majority of participants found the RCTM helpful and effective in providing education and support. Participants reported specific mechanisms that impacted emotional well-being, caregiving perspective and confidence, sense of community, and interactions with others. For instance, dementia caregivers claimed that emotional support and learning relaxation exercises led to decreased stress levels and improved mood. Participants appreciated discussions that centered on their multiple life roles and responsibilities, which helped them to reframe expectations and decreased stress. They also found that learning about dementia and activities to engage with their CR often changed their perspectives and led to increased patience and improved interactions. Acquiring conflict resolution skills improved communication with family and elicited better communication with, and care from, staff. The provision of personalized external resources offered a feeling of broader support and helped build confidence in caregiving. Building awareness of and addressing concerns about the future enhanced confidence as well.
Participants also found that the emotional support, reassurance, and knowledge TCs offered bolstered their self-efficacy with their caregiving role, care provision, and decision-making. Participants shared that they could speak openly without fear of judgment; they felt heard and validated. This understanding, trust, and support increased their confidence and helped participants to not feel alone in their caregiving journey.
As documented in a separate paper, quantitative outcome data evaluating the RCTM’s direct, statistical effects on quantitative measures of caregiver depressive symptoms and subjective stress; caregivers’ and CRs’ adjustment to RLTC placement; residential care stress; and caregiver sense of competence and self-efficacy did not reveal significant findings. 38 However, the qualitative data collected during interviews and open-ended survey responses clearly indicate that treatment group participants highly valued the RCTM. Furthermore, a vast majority of participants reported that their mood, stress level, interactions with others, and/or confidence improved as a direct result of participating in the intervention. These findings beg the question: why is there such a discrepancy between the overwhelmingly positive qualitative data and the null results of the quantitative evaluation?
It is possible that the empirical outcome measures employed in this study did not match and assess the outcomes of interest. They may have lacked the specificity to assess person-centered changes and outcomes. Using person-centered goals (ie, having participants create goals for outcomes they would like to achieve) and evaluating change in goal behavior may be a more accurate method of determining the effectiveness of interventions such as the RCTM or similar protocols that tailor clinical content to the needs of participants.
In addition, longitudinal qualitative data such as those featured in the RCTM evaluation allow for a more robust, conceptual understanding of mechanisms of benefit as well as appropriate outcomes to consider in subsequent evaluation efforts. The lack of understanding of mechanisms of action that prevails in dementia care science impedes not only the establishment of intervention efficacy but may also hinder dissemination and implementation efforts. As adaptation to context is often necessary to ensure feasibility, acceptability, and adoption of an evidence-based intervention in clinical or community settings, a full understanding of why and how an intervention “works” is essential so that core elements of an intervention are preserved during dissemination and implementation efforts. 47
Study Limitations and Future Directions
As few participants provided low total average item scores on the TRC, variability was limited when purposively sampling participants for post-evaluation semi-structured interviews. It is also possible that demand effects influenced the interviews (ie, participants wished to please the interviewer with positive responses about the RCTM). However, some caregivers did indicate dissatisfaction with the intervention suggesting that demand effects are not the sole reason for dementia caregivers’ positive appraisals of the program.
Our sample lacked ethnic and racial diversity which was a significant limitation despite our efforts to broaden recruitment and enrollment. Fostering relationships with diverse community groups, building relationships with residential care centers in diverse communities, and utilizing professional recruitment agencies could increase diverse enrollment in the future. Future research should also evaluate the effectiveness of the RCTM with staff in RLTC communities. Providing support and educating staff may enhance communication and interactions with families and residents as well as improve overall care provision.
Conclusion
The RCTM is a feasible, acceptable, and highly valued psychosocial and psychoeducational resource for dementia caregivers. Dementia caregivers identified 9 mechanisms of benefit that contributed to their improved mood, caregiving perspective and confidence, sense of community, and interactions with their CR, family, and care team. Gaining unique insight into the specific mechanisms of the intervention dementia caregivers identified as being most beneficial is a new and important contribution to the literature. Future intervention studies should include qualitative data on perceived utility and implementation to fully capture how person-centered, tailored intervention strategies help to achieve individualized participant outcomes. Pilot studies could be conducted with planned outcome measures along with qualitative data collection to ensure that empirical measures more accurately reflect participants’ experiences during earlier stages of interventions. Ensuring measures accurately reflect intervention mechanisms of benefit strengthens efforts to effectively replicate, disseminate, and implement support programs.
Supplemental Material
sj-docx-1-inq-10.1177_00469580231217981 – Supplemental material for A Qualitative Analysis of Mechanisms of Benefit in the Residential Care Transition Module: A Telehealth Intervention for Caregivers of Relatives With Dementia Living in Residential Long-Term Care
Supplemental material, sj-docx-1-inq-10.1177_00469580231217981 for A Qualitative Analysis of Mechanisms of Benefit in the Residential Care Transition Module: A Telehealth Intervention for Caregivers of Relatives With Dementia Living in Residential Long-Term Care by Elizabeth A. Albers, Robyn W. Birkeland, Katie W. Louwagie, Hawking Yam, Zachary G. Baker, Mary S. Mittelman and Joseph E. Gaugler in INQUIRY: The Journal of Health Care Organization, Provision, and Financing
Supplemental Material
sj-docx-2-inq-10.1177_00469580231217981 – Supplemental material for A Qualitative Analysis of Mechanisms of Benefit in the Residential Care Transition Module: A Telehealth Intervention for Caregivers of Relatives With Dementia Living in Residential Long-Term Care
Supplemental material, sj-docx-2-inq-10.1177_00469580231217981 for A Qualitative Analysis of Mechanisms of Benefit in the Residential Care Transition Module: A Telehealth Intervention for Caregivers of Relatives With Dementia Living in Residential Long-Term Care by Elizabeth A. Albers, Robyn W. Birkeland, Katie W. Louwagie, Hawking Yam, Zachary G. Baker, Mary S. Mittelman and Joseph E. Gaugler in INQUIRY: The Journal of Health Care Organization, Provision, and Financing
Footnotes
Acknowledgements
We would like to thank Transition Counselor Tamara Statz, MA, LMFT for her counseling expertise, impactful intervention delivery, and intervention training leadership. We are grateful to Hayley McCarron, BA, who conducted many of the interviews. We appreciate the invaluable assistance and insight of Brenna Horn, MS and Ashley Millenbah, MPH in helping to establish the codebook and engaging in the initial review of the interview transcripts. We would also like to thank our wonderful Co-Investigators, Kenneth Hepburn, PhD, David Roth, PhD, and Carol Whitlatch, PhD, for their partnership, knowledge, and guidance.
Abbreviations
ADRD: Alzheimer’s disease and related dementias
CR: Care Recipient
RCTM: Residential Care Transition Module
RLTC: Residential Long-Term Care
TC: Transition Coaches
TRC: Treatment Review Checklist
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the National Institute on Aging of the National Institutes of Health [R01 AG048931]; and the Robert L. Kane Endowed Chair in Long-Term Care and Aging.
Ethics and Consent
The University of Minnesota Institutional Review Board approved the study (1511S80406). The University’s IRB holds a Federalwide Assurance (FWA number 00000312) from the Office for Human Research Protection (OHRP). Written consent was obtained from all participants.
Supplemental Material
Supplemental material for this article is available online.
References
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