Qualitative Analysis of Implementation Factors of an Embedded Caregiver Support Intervention into Adult Day Services

Abstract

Background:

Adult day services (ADS) are an important and often underutilized support resource for older adults. For persons living with dementia (PLWD), ADS is an optimal access point to not only receive therapeutic and rehabilitative activities, but as a vehicle for respite/relief for dementia caregivers. Yet, there is currently a lack of research on integrating caregiver interventions into home and community-based services such as ADS.

Objective:

This paper reports on qualitative findings from the Improving Outcomes for Family Caregivers of Older Adults with Complex Conditions: The Adult Day Plus (ADS Plus) Program Trial.

Methods:

Drawing from semi-structured interviews conducted with family caregivers and ADS site staff, we conducted a thematic analysis to examine the implementation process of ADS Plus.

Results:

Themes address the relational nature of the intervention, learning, influence of the administrative infrastructure, and receptivity of ADS Plus.

Conclusions:

Our analysis determined that implementation of ADS Plus was feasible and accepted by site staff and dementia caregivers but also calls for additional evaluation of embedded caregiver support interventions across different contexts (e.g., staff size, limited technology environments) to further identify and test implementation mechanisms across settings.

INTRODUCTION

Community care services and supports, such as adult day services (ADS) are important resources for older adults and their caregivers. Adult day services provide daytime group-care to older adults including socialization opportunities and access to therapeutic services. ADS enables caregivers to dedicate time to work, respite or other activities. As of 2020, there were 5,500 ADS centers that served 237,400 adults on any given day in the United States (U.S.) [1, 2]. Older adults and their caregivers especially from vulnerable populations could improve their utilization of community care services. Low utilization of services for older adults are shaped by stigma, discomfort accessing external supports, and normalized high levels of burden among caregivers [2–4]. Although ADS programs serve a higher proportion of racially and ethnically diverse client populations when compared to other home and community-based services as well residential long-term care services [5], older adults and their caregivers report encountering barriers (e.g., mobility issues, high unmet needs, lack of culturally tailored services) [6]. The full benefits of ADS, especially for non-white racial and ethnic groups, are not realized and this is concerning given the high unmet needs documented among diverse populations.

ADS programs serve a significant number of older adults but there have been no concerted efforts to embed an evidence-based caregiver-focused intervention into ADS. This is particularly noteworthy given the increasing emphasis of identifying methodologies and strategies to more effectively integrate evidence-based interventions in care settings with the goal of improving care for older adults [7]. The present study seeks to stimulate discussion and provide evidence on a promising strategy that can support caregivers connect to services within ADS programs throughout the U.S. and has potential for influencing other community care efforts interested in adopting similar innovations targeting caregivers.

Adult day services and ADS Plus

Adult day programs provide health and nutrition services as well as social opportunities for older adults living in the community with a variety of health needs including dementia [8–10]. Nearly one-third of ADS participants are persons living with dementia (PLWD) [11]. The use of ADS, particularly consistent use, is associated with positive outcomes for both caregivers and PLWD with various chronic conditions [12].

Although various descriptive and non-controlled evaluations of ADS have found these programs are perceived as valuable and potentially beneficial for older adults and their caregivers, there are various challenges when evaluating ADS. The definition of ADS varies from study to study, which has made it difficult to aggregate evidence and derive conclusions of efficacy or effectiveness. Data quality is limited, which weakens the ability of ADS to link participant needs, participation, and services provided to specific outcomes [13, 14]. For caregiver-specific outcomes, it is difficult to differentiate between benefits derived from respite care and other services offered by ADS [9]. When focusing on caregiver outcomes, it is thought that the mixed results of benefit may be due to high ADS dropout rates and underutilization of the service [15]. With the exception of early demonstration projects in the 1980 s, the proliferation of ADS programs as routinely available community-based resources for older adults and families has also meant that controlled evaluations of overall ADS program efficacy are no longer feasible.

Embedding an evidence-based caregiver intervention into a home and community-based program such as ADS is advantageous for several reasons. Although researchers have evaluated over 200 strategies to support caregivers of older adults with dementia or other complex conditions that have demonstrated efficacy, the “translation” of these interventions to settings where families could benefit from them remains a significant gap in the caregiving science literature [16]. Integrating evidence-based programs into ADS may serve as an optimal access point for connecting dementia caregivers to services and comes with additional benefits such as the ability to leverage expertise of staff, staff familiarity with needs of the older adults, and caregiver familiarity with the service environment [16]. In addition, relying on pragmatic trial methods (e.g., cluster randomization) allows for a rigorous, controlled evaluation while also providing a real-world “test” of the effects of integrating evidence-based caregiver interventions into ADS [17].

To address these issues, we integrated an evidence-based, dementia caregiver intervention into ADS programs across the U.S., referred to as ADS Plus. This embedded intervention provides caregivers with disease education, counseling, referrals, and tools to build their skills to manage caregiver-identified challenges including functional decline, behavioral symptoms, and care coordination [16]. One-on-one support is provided to caregivers through an ADS Plus interventionist. ADS Plus is delivered locally at selected ADS sites, in-person or virtually, over 12 months, and involves bi-weekly sessions for the first six months followed by monthly sessions between a caregiver and an interventionist. At each ADS Plus site, one to two staff are designated to participate in interventionist training which consists of readings, structured learning on intervention components delivered via video, two two-hour webinars, and monthly group coaching calls throughout the delivery of ADS Plus.

ADS Plus is one of the few interventions that embeds services within ADS and uses ADS as a platform to reach caregivers who may be in need of supportive services [9]. Caregivers who have participated in the ADS Plus program experience reduced depression and increased confidence in managing behaviors in the short-term and long-term. Participation in the ADS Plus program is also related to increased attendance at ADS and fewer nursing home placements [15].

Evidence on the effectiveness of ADS Plus is currently being generated through a hybrid effectiveness-implementation trial using mixed methodologies. This paper reports on an exploratory qualitative analysis examining ADS Plus to elucidate important information on implementation considerations and perspectives from caregivers and staff interventionists. The analysis can offer important insights when informing future efforts that attempt to integrate evidence-based caregiving supports into existing homeand community-based services such as ADS.

Study objective

This exploratory qualitative analysis examines the perspectives and experiences of caregivers for older adults and intervention staff within the ADS Plus intervention. Specifically, an examination of implementation factors that contributed to the delivery of ADS Plus is presented.

METHODS

Participants/recruitment

The present analysis utilizes data from the Improving Outcomes for Family Caregivers of Older Adults with Complex Conditions: The Adult Day Plus (ADS Plus) Program Trial, a multi-site randomized hybrid effectiveness-implementation trial (Clinical-Trials.gov Registration Identifier: NCT02927821). The detailed protocol is published elsewhere [16]. The purpose of the ADS Plus Program Trial was to examine the effectiveness, feasibility, acceptability, and appropriateness of ADS Plus when delivering services to caregivers of clients with dementia who used ADS across the U.S. The trial’s goals were to improve caregiver well-being and reduce depressive symptoms at 6 months as well as evaluate the maintenance effects of ADS Plus at 12 months.

Adult day service sites that were part of the National Adult Day Service Association in 2014 and LeadingAge ADS members in 2016 were invited to participate in this trial. Eligible sites were selected based on sufficient size/capacity (≥50 clients), ≥50% of clients having a dementia diagnosis, classified as a not-for-profit/non-chain organization, and a sufficient staff to client ratio in order for one staff member to serve as the ADS Plus interventionist and for one to serve as research coordinator [16].

The ADS Plus Program Trial enrolled eligible family caregivers of a PLWD enrolled in a participating ADS site at least one week out of six months, were at least 21 years old, English speaking, had access to a telephone and willingness to participate in four telephone interviews, and were the primary caregiver for a client who had a diagnosis of Alzheimer’s disease or a related disease. Caregivers were excluded if they or the PLWD had been hospitalized more than three times in the past year, were receiving treatment for a life-threatening illness, or were involved in another caregiver support study. Caregivers were recruited to the trial through a research liaison at each site via recruitment letters and flyers. Caregivers enrolled at intervention sites were randomly selected by ID number for the qualitative interviews. The study aimed to recruit 20 dementia caregivers. Of the 15 caregiver interviews conducted, nine participants completed an interview between six and 12 months while enrolled in the study and six participants completed an interview one month after completing the study. Five caregivers declined to participate in interviews, seven caregivers did not respond, and two caregivers withdrew. Eleven ADS Plus intervention sites were selected to participate in qualitative interviews. Of these, nine sites participated and two sites were not available due to closing or declining to participate. Selected sites had completed training on the ADS Plus Program, enrolled participants in the program, and had availability during the data collection period. Eight sites did not meet eligibility criteria. The study aimed to recruit 15 ADS site staff members. The study’s sample size is consistent with other studies employing thematic analysis to achieve data saturation [18]. The Johns Hopkins University Institutional Review Board approved this trial (00112546). No honorarium was provided to dementia caregivers or ADS staff for completing the semi-structured interviews in this analysis.

Procedures

Qualitative data for this trial were obtained from semi-structured telephone interviews with caregivers and staff members at nine ADS sites delivering the ADS Plus program (see Table 1 for participant demographics). Telephone interviews were administered by University of Minnesota study staff. Interview questions informed by the Consolidated Framework for Implementation Research captured information on the delivery and acceptability of ADS Plus (see Fig. 1 for the interview questions). All interviews were completed between April 2020 and April 2021.

Table 1.

Demographic data of ADS caregiver interviewees

Caregiver Characteristics	N (%)
All Caregivers	15 (100.0%)
Gender:
Women	9 (60.0%)
Relationship:
Spouse	6 (40.0%)
Adult Child	8 (53.3%)
Other	1 (6.7%)
Race:
White	13 (86.7%)
Ethnicity:
Non-Hispanic	10 (66.7%)
Lives with ADS Client:
Yes	13 (86.7%)
	Mean (Standard Deviation)
Age	64.33 (14.7)

Fig. 1.

Caregiver and site interview guides used for ADS Plus.

Analysis plan

The authors embrace a naturalistic research paradigm which recognizes that: 1) reality is constructed and multiple, 2) interaction between the researcher and research participants informs knowledge creation, 3) research participants understand and can communicate their experiences, and 4) the contextual nature of research supported with illustrative narratives can deepen understanding of phenomenon [19].

Authors QC, EA, SI, and ES met on a weekly basis from October 2022 to May 2023 to discuss the qualitative analysis which was guided by Braun and Clark [20] and Williams and Moser [21]. Thematic analysis began with initial readings of randomly selected interviews while noting potential themes and codes for discussion. Authors met and compiled common ideas about the interviews and developed preliminary codes. The authors then created an initial codebook. Data were organized and coded utilizing NVivo 13. The authors refined the codebook to reflect growing conceptual clarity as more interviews were coded, and analytic decisions around concepts identified in the data were documented (see Supplementary Tables 1A, B). All interviews were then double coded and ambiguous content was discussed among the qualitative analytic team to generate consensus on these items and to refine the codebook including definitions of codes. The same steps were followed for both caregiver and site staff interviews. Authors SI and ES drafted an initial thematic map from all the codes, making connections between the codes based on knowledge from the interviews to better understand the larger themes. Simultaneously, the analytic team reviewed open codes and the process of abstraction to generate broader conceptual understanding of granular data (see Fig. 2). The initial thematic map supported the authors in organizing data. Subsequent group meetings refined axial codes and finalized themes that accurately reflected the data. Once themes were finalized as a group, quotes from interviews were pulled into a table separated by themes and axial codes (see Table 2 and Supplementary Tables 2A, B).

Fig. 2.

Example of open and axial coding for relational nature and individualization of ADS plus program.

Table 2.

Themes and illustrative quotes condensed version (see full table in Supplemental Materials)

Theme	Quote
Theme 1: Relational nature and individualization of ADS Plus Program
Personalized program	ID 149: There was the accountability of meeting in person, although that was a little challenging initially. And just having the direct contact in specific areas of concern being addressed. And, you know, in, like I said, a very structured, very systemized way. And then being able to follow up with any questions, concerns. It just- and, you know, it just felt more intimate in the sense that: here I am having all these issues and this is all just for me. That one-on-one was really valuable.
Theme 2: Multi-level learning strengthening intervention staff abilities and caregiver support options
Variety of learning experiences	ID 267: Oh, it provided me with the education, a different outlook, and the support that I needed to pivot on the issues as they happened in real time, you know each day is different and each behavior is different. So it’s a matter of just identify the behavior and trying to pivot and move in a positive way with the patient, providing the education and the knowledge, she shared her knowledge with me, and I was able to apply that knowledge that she shared with me in order to mitigate the behavior issues that goes with the Alzheimer’s.
Increased efficacy across position, facilitated through learning	Site 6: this really made us sit down, designate that time, and really dig deeper and ask pretty tough questions that maybe we wouldn’t have addressed prior.
Theme 3: Influence of administrative structure
Site coordination	ID 191: Well, you see, [my interventionist] was available anytime to talk with me. I didn’t have to do that, but she was available anytime, and that’s of course very helpful. She’s a good person. As a matter of fact, the people at that [ADS Plus site] are very, very good people and not only nice. They’re very knowledgeable, so it’s a good place
Time was a barrier to effective program delivery	Site 1: And I did have a couple of working caregivers that we missed. It went longer than a month between, because what we had scheduled just didn’t work for them workwise, and then trying to find another time because of their caregiving responsibilities and work responsibilities, it became a little bit challenging.
Theme 4: Facilitators of intervention trustworthiness and credibility
Intrinsic value recognized by ADS site	Site 3: I thought that it was unique in the sense of having the day center being an attachment to the added support. It was an added service for families who were enrolled in the day center. So that was a nice draw, and it- like I said, it just allowed for more of a personal connection between the families who were a part of it.

RESULTS

A total of 15 caregivers and 14 ADS Plus staff members (from nine ADS Plus sites, one site did not provide an interventionist) throughout the U.S. shared their experiences on ADS Plus (see Table 1). Caregivers were generally women (n = 9), ages 39 to 91 (m = 64.3), and most lived with the person accessing ADS services (n = 13). Over half (53.3%) were adult children, 40% were spouses, and 6.7% were of other relation to the PLWD. Most caregivers were white (n = 13) and non-Hispanic (n = 10). Of the 14 ADS Plus staff members interviewed, 10 acted as interventionists at their ADS site, while the others were research liaisons (n = 3) or site administrators (n = 1).

Overall, our results demonstrate the feasibility of providing support to caregivers involved in ADS through ADS Plus. Themes identified across caregiver and site staff interviews in this analysis include: 1) the relational nature and individualization of ADS Plus program, 2) multi-level learning strengthening intervention staff abilities and caregiver support options, 3) the influence of administrative infrastructure, and 4) facilitators of intervention trustworthiness and credibility.

Theme 1: Relational nature and individualization of ADS Plus Program

ADS Plus caregivers and site staff reported on the benefit of the relational nature and individualization of ADS Plus (see Figs. 2 and 3). The intervention relied on a person-centered approach that resonated with caregivers and site staff because it encouraged the formation of strong interventionist/caregiver relationships. From a caregiver perspective, the relationship with their interventionist relied on the value provided by the interventionist, which included personalization of the program, an emotional connection to the interventionist, knowledge and learning opportunities provided by the interventionist, and connection to external support facilitated by the interventionist. Additionally, administrative staff appreciated that the interventionist fostered an environment that encouraged trust between the interventionist and caregiver. Administrative staff shared that caregiver trust was fostered through having a program structure that provided consistency and accountability with caregivers. Further, site staff noted that the intervention resulted in benefits to caregivers such as the ability to dive deeper into caregiver issues and promote caregiver confidence and self-efficacy.

Fig. 3.

Relational nature and individualization of ADS Plus Program.

The person-centered nature of the program allowed for interventionists to be able to use their prior knowledge and experience, as well as the study’s training and resources, to provide individualized support specific to caregiver needs. This included troubleshooting problems identified by the caregiver throughout the course of the intervention. One caregiver shared their thoughts on the interventionist’s application of their knowledge, stating:

“I mean, I needed [my interventionist] desperately in a situation that I had no clue how to handle, and she provided every answer, and if she didn’t know– have an answer, she’d tell me, I’ll call you back tomorrow, and we’ll figure it out.” (ID 205, Female, Adult Child)

This perspective on the benefit of one-on-one support was also shared by staff. Overwhelmingly, site staff shared that the ADS Plus program enabled interventionists to build trust and rapport with center clients that they previously did not have the time to do outside of the intervention. A site staff member shared:

“That relationship really blossoms and, so many of them, it’s the ability to talk to somebody about this. The intervention’s great, but there’s also just: I have a person to sit at the table with me. A lot of them would even say that, ‘It’s just so good to have someone to talk about this with.”‘ (Site 1)

Caregivers also overwhelmingly noted the emotional support benefits provided by interventionist meetings. Interventionists often provided strategies for reducing and managing stress, validated caregiver frustrations, and worked to empower caregivers to increase self-efficacy. This connection helped reduce caregiver feelings of isolation, with one caregiver sharing: “I mean it was also an opportunity for me to feel like I had somebody that was on my side or somebody that understood because honestly unless you’re in the situation, a lot of people don’t understand it” (ID 262, Female, Adult Child). Interviews with site staff also revealed that staff believed increasing caregiver self-efficacy was a benefit to the program. Interventionists worked one-on-one with caregivers to troubleshoot issues and create plans for the future. Staff believed this made caregivers more confident in their caregiving abilities, which reduced feelings of hopelessness. Site staff not only believed this was a benefit to caregivers, but they also found it rewarding to participate in efforts to increase caregiver self-efficacy.

The schedule and structure of the meetings allowed for a one-on-one relationship to grow between interventionists and caregivers, which provided both accountability and flexibility in terms of scheduling and content. When recounting the benefits of the program, one caregiver shared:

“Just having the direct contact in specific areas of concern being addressed. And, you know, in, like I said, a very structured, very systemized way. And then being able to follow up with any questions, concerns. It just– and, you know, it just felt more intimate in the sense that: here I am having all these issues and this is all just for me. That one-on-one was really valuable.” (ID 149, Female, Adult Child)

Site staff also appreciated the ability to have the time to take a deep-dive into issues with caregivers. Staff had not previously had the opportunity to connect with caregivers to this extent until ADS Plus provided structured time. Site staff echoed the thoughts of caregivers by noting the benefit of having time to understand and respond to individual needs. A site staff member shared comments on perceived benefits of one-on-one time for caregivers involved in ADS Plus:

“I mean, we had support groups and stuff, but to have that one-on-one and to work with the person and that you ask them, and when they respond on what their need is you help them to be able to accomplish what they’re looking for. It’s a huge uplifting for that caregiver. It gives them confidence. It gives them that they feel that they’re not alone.” (Site 8)

Theme 2: Multi-level learning strengthening intervention staff abilities and caregiver support options

Our analysis revealed that multi-level learning was a core process within ADS Plus, which also contributed to the development and shaping of the program (see Fig. 4). Multi-level learning shaped the implementation process and was an integral outcome; the participants were given the opportunity to learn (e.g., content focused on Alzheimer’s disease, behavior symptom management, self-care) and the interventionists were learning how to adapt the program to individual participants and figure out nuances to each case.

Fig. 4.

Multi-level learning strengthening intervention staff abilities and caregiver support options.

Caregiver participants reported that the program was a convenient learning experience where they were provided resources and support by the interventionist on site. This experience was individualized to the caregiver based on their current needs and willingness to work together with the interventionist to determine optimal resources and techniques.

“The resources and just the information and knowing that you’re not alone in this, you have access to– just to information, and, like I said, resources– to me, that’s invaluable. This was just all new to me, never expected this to happen, and then just to have this resource, I just thought I had won the lottery. I mean, I really did.” (ID 149).

ADS Plus helped participants feel individually supported and equipped with hands-on education and training for their caregiving scenarios. Both the caregiver participants and staff interventionists were in agreement that there were benefits to caregivers from their participation in ADS Plus including: access to resources, learning about Alzheimer’s disease/caregiving, and being able to build a rapport with the site and its staff.

“The families that we worked with are better off for having been a part of this. I just think it opened them up to looking at their life and their issues in a little different way, and I think all of them felt success in attacking something that was holding them back from being a positive caregiving experience. I’m really grateful that we had that opportunity to do it.” (Site 1)

“Oh, it provided me with the education, a different outlook, and the support that I needed to pivot on the issues as they happened in real time, you know each day is different and each behavior is different. So it’s a matter of just identify the behavior and trying to pivot and move in a positive way with the patient, providing the education and the knowledge, she shared her knowledge with me, and I was able to apply that knowledge that she shared with me in order to mitigate the behavior issues that goes with the Alzheimer’s.” (ID 267, Male, Adult Child)

An important outcome to the program was to support caregiver well-being, and this was demonstrated by the overwhelming response given by caregivers interviewed. One caregiver pointed out:

“It was helpful because it provided the emotional support that sometimes we need when we’re dealing with difficult times or difficult behavior. It provided me with the tools that I needed to either prevent the behavior or resolve the behavior, resolutions, and that’s something that I felt was very appreciated.” (ID 267)

Overall, the caregiver experience in ADS Plus was appraised positively with caregivers citing helpfulness and appreciation for the resources and learning opportunities they were given. There was a high degree of alignment with caregiver appraisal of their experiences and ADS Plus staff perception of the caregivers’ experiences.

This theme of multi-level learning was woven throughout the interventionists’ experience in this study, starting with the program training which helped prepare them to engage effectively with families. There were mixed opinions on training, with some interventionists (Site 2) feeling overwhelmed by the quantity of materials:

“Everything was very close together because we had those two video sessions and then, in addition to that, there were some online classes that needed to be done. And everything was very rushed. I remember doing it in a couple of months’ time. Excuse me. Maybe two months. Maybe. So everything felt very, very rushed. I kind of feel like I went through all the training but, at the end of it, I wasn’t sure what I was supposed to do.”

Some interventionists enjoyed how thorough the training was and thought it actually helped prepare them adequately for administering the program.

“It was just thorough, which is not a bad thing. So, I just remember going through the first initial training and taking the test and it was just very, very detail-oriented and very thorough in the beginning, learning that or not learning that, but with the videos and the trainings– it took a while.” (Site 6)

Some sites felt supported in their preparation in handling new information through group coaching calls with the study’s principal investigators which contributed to the process and development of the program. One site staff from Site 1 reported: “When we were figuring all this out, the coaching calls were helpful. But they were helpful, to be on the phone and talking about just really how the intervention works.”

However, despite the mixed opinions on the program training, there was overall agreement on the application of the methods, resources and materials for the ADS Plus program and the interventionist role in general. Site 6 reported: “this really made us sit down, designate that time, and really dig deeper and ask pretty tough questions that maybe we wouldn’t have addressed prior.” Site 5 reported, “The training was extensive but hopefully it helped me become a better interventionist. And implementing the program, I enjoyed it.”

The program provided a framework and a more structured approach with hands-on tools for interventionists when working with center clients:

“And it actually kind of taught us more, like, how to follow in-depth processes for supporting our caregivers. So it kind of provided us with an outline for providing interventions for our caregivers. So a lot of times we just kind of willy-nilly, you know, support our caregivers with as needed things, but I think what she really liked was the fact that it kind of set out goals or outlined things, specific things to work on with our caregivers. So a little bit like what we would call in the social work world action planning where you kind of lay out, like, a little action plan and then proceed with that. So I think ADS Plus did a lot for our program in that sense.” (Site 4)

The analysis elucidated that learning for the program increased the efficacy across their position as they were able to apply this training to other aspects of their work and added structure to their work. An interventionist from Site 2 stated:

“I think the sessions went well. I think that they’re definitely valuable. What I did like with the sessions is, even though there was kind of an outline laid out– have this many sessions, this session should take this amount of time– what I liked is that it wasn’t set in stone, so you can, again, make it fit the caregiver’s timeframe. So the session, because it was so flexible it made it very informal and kind of relaxed so that the caregiver did have time to share. That’s kind of how I felt about them.”

Learning is a core process and outcome within ADS Plus. Both the caregivers and interventionists learned through resources and tools from the program and interventionists specifically learned throughout the training portion as well.

Theme 3: Influence of administrative infrastructure

Program delivery was one aspect of ADS Plus frequently discussed by study participants, especially in relation to how the program influenced the administrative infrastructure (see Fig. 5). ADS Plus intervention staff noted various possible improvements to the administration of the ADS Plus program at their own site including burden of training, scheduling, managing COVID-19, and workload.

Fig. 5.

Influence of administrative infrastructure.

Caregivers mentioned that ADS Plus could be improved by becoming a more robust program. Some caregivers desired the program to be longer than one year or for the intervention sessions to be more frequent. Multiple caregivers, like ID 149, had an interest in learning more about “what to anticipate, and just like maybe more of ... that in the resource[s] ... because I’m always thinking [about the] future.” A few caregivers suggested the program include a mentorship or support group of caregivers who used the ADS site with one participant noting:

“I would be really nice to have an inner-city support group so that way if I knew that [another caregiver] was in it I could call and talk to her, and then maybe we could, you know, have another support system among us.” (ID 271, Female, Adult Child).

Some caregivers wanted a more comprehensive ADS Plus program through structural changes (e.g., information on the condition of dementia, post-diagnosis navigation, detailed resource guide early on in the dementia journey, formal interactions with other dementia caregivers).

Similarly, site staff thought certain aspects of the ADS Plus program could have been more robust. Site staff said that increasing the specificity of the interventionist training would have been helpful when implementing the program. An interventionist at Site 2 explained that “things were not quite explained enough” in the training. She went on to recommend “maybe making the training time period a little bit longer, maybe more explanation on how to use the day-to-day, the manual.” Site staff also expressed interest in more extensive or regional resources to provide to caregivers. Some sites only used regional resource lists curated by the site instead of those provided for ADS Plus staff. By providing the sites more comprehensive training and resources, the program may have been delivered even more effectively.

Time was another barrier to effective program delivery for site staff. Most frequently, site staff mentioned that enrolling caregivers was difficult “because of their caregiving responsibilities and work responsibilities” (Site 1). It was also difficult for caregivers to participate for the full year of the program because of caregivers’ limited time. Site staff time was also limited, in part due to staffing shortages at the ADS sites. This resulted in some sites not having an interventionist to implement the ADS Plus program for caregivers. Some caregivers expressed dissatisfaction that they did not have an interventionist from their ADS site as was promised. Similarly, site staff expressed the difficulties in adding more responsibilities, related to being an interventionist, to their already busy workday. Those sites that had a staff person whose sole responsibility was being an interventionist did not experience this issue. Overall, staff and caregivers would have liked more time to implement and utilize the program, respectively.

The existing structure of the ADS Plus program did not work well for all ADS sites and caregivers. Both site staff and caregivers provided examples of potential changes to the structure of the ADS Plus program to consider when implementing the program in the future.

Theme 4: Facilitators of intervention trustworthiness and credibility

An essential aspect of this analysis was to examine interview data for perspectives on the successful delivery of ADS Plus. This theme addresses factors that promote intervention acceptability (see Fig. 6). ADS Plus sites reported that the potential to embed additional support for families enrolled in day center services was appealing because the new intervention component aligned with the site staff members’ interests in building rapport with families and the potential to meet the needs of families who site staff believed could benefit from additional caregiver support. A staff member at Site 3 expressed:

“I thought that it was unique in the sense of having the day center being an attachment to the added support. It was an added service for families who were enrolled in the day center. So that was a nice draw, and it– like I said, it just allowed for more of a personal connection between the families who were a part of it.”

Fig. 6.

Facilitators of intervention trustworthiness and credibility.

Optimism for the potential to provide additional support to families influenced how sites prepared and approached handling new responsibilities. According to a Site 1 staff person:

“We really took it seriously. We were very proactive in trying to send out information and contacting people individually that we felt could be supported by this. So it was a– we were really happy to be a part of the initial study, to be able to try this out.”

Some ADS Plus sites appreciated that the intervention was supported by an academic institution and viewed the service additions as a more robust approach and effective practice for meeting the needs of family caregivers. Although sites were aware that ADS Plus was under scientific evaluation, they still perceived the intervention as a new way to reach families and provide benefits to caregivers.

DISCUSSION

The objective of our analysis was to examine the perspectives and experiences of caregivers and ADS staff regarding the implementation of an embedded caregiver intervention (ADS Plus). When implementing a new intervention within ADS settings, a strong ethos toward supporting caregivers can facilitate a willingness among ADS staff to extend services to caregivers especially when potential benefits to caregivers are identified. Choices for service delivery (for example, in-person, telephone, and virtual options) for both ADS staff and caregivers created a level of flexibility and individualization that was appreciated and optimal given work and life demands. ADS Plus provided a range of support for caregivers that was valued even if that support was purely emotional or social in nature (e.g., having someone to talk to about feelings or problems) and less focused on case management.

Administrative processes (e.g., capacity to manage scheduling) and limited staff capacity were challenges to the efficient delivery of ADS Plus. The intervention has the potential to reach more caregivers but life demands of caregivers influenced their participation. ADS Plus emphasis on reaching caregivers and addressing care as a family issue was a motivating factor influencing acceptability of the intervention among site staff. Acceptability of ADS Plus was further strengthened by site staff’s perceived credibility of university partners and utilization of evidence-based approaches to reach caregivers.

Our results provide insights into factors influencing the implementation of ADS Plus. The relational nature of ADS Plus, which situates the perspectives and needs of caregivers, was an instrumental aspect in shaping how both caregivers and site intervention staff perceived and experienced the program. In our trial, ADS Plus allowed for personalization or an individual tailoring of services. A recent systematic review of randomized controlled trials of non-pharmacologic interventions for informal caregivers reported that individualization among case management and service coordination interventions improved caregivers’ ability to manage difficult situations and solve problems [22]. Customizability within ADS Plus was further facilitated by flexibility in service delivery method, which site staff appreciated. Cólon-Emeric and colleagues [23] note that intervention customization in long-term care settings, especially in environments with limited resources, enables staff to integrate changes and new responsibilities into their existing work process.

A critical component toward understanding the feasibility of ADS Plus involved a core process of learning. Both caregivers and site staff, over time, developed a clearer understanding of the goals of ADS Plus and its components. For caregivers, learning focused on disease-specific information, navigating resources, and understanding how to utilize ADS Plus staff. For ADS Plus staff, learning focused on helping content and operationalizing the ADS Plus intervention model.

Although caregivers participating in ADS Plus did not always utilize the care coordination offered within the intervention, sharing their experiences was noted as a benefit. It is well documented that caregivers find relief in being able to talk through their problems via peer or professional support [24, 25] and some studies have linked this action to reductions in stress [26] and increasing caregivers’ ability to solve problems [27]. Our results corroborate these earlier findings but also highlight the need toward understanding how to increase the number of caregivers that seek out someone to talk to about issues they face or how to meet the needs of caregivers who do not find talking beneficial. Caregivers commonly delay seeking out services [28] and this is in part due to reluctance in describing negative aspects of their caregiving experiences. Caregivers often try to solve problems with PLWDs or alone [29] through a range of self-management practices which may shed light on their decision to engage with services such as ADS Plus. While there is a need to understand the issue of caregiver self-management, the availability of ADS Plus suggests that caregiver-focused interventions embedded in care settings can be effective at providing support to caregivers that they define as helpful to them.

Rigor, strengths, and limitations

Standards for rigor in qualitative research such as confirmability were demonstrated in our development of an audit trail that explicates the authors’ research paradigm, documented analytics decisions, illustration of how coding and themes were grounded in participant data, and use of quotes from a range of participants to capture variation. The methodological approach leading to our results can be replicated (dependability), although one-to-one labeling of data and interpretations would vary. Our results have a high degree of transferability as the focus on mechanisms elucidates core processes and factors (e.g., learning and intervention adaptability), globally, across intervention development and implementation processes. Strengths of this analysis include capturing implementation context across a national sample of ADS sites and including perspectives from caregivers and site staff with experiences with ADS Plus.

The qualitative aim of our trial, however, also has several limitations. The use of the interview guide did not allow for richer exploration into topics. All caregivers and intervention staff did not complete interviews, so other perspectives and experiences about ADS Plus may not be captured here. Caregivers who found benefit in ADS Plus may have been more likely to participate in an interview. COVID-19 disrupted implementation with all sites closing down for varying amounts of time, understaffing, and limited education before intervention rollout influenced our results [30]. Detailed demographic information on site interventionists was not adequately captured. Data saturation was informed by methodological guidance on sample size rather than being achieved solely through the analytic process [31]. Future studies may consider more exploratory inquiry allowing for participant experiences to be more deeply explored as well as assessing which ADS sites are more likely to successfully implement caregiving support interventions.

Conclusion

Adult Day Services Plus is a caregiver support intervention embedded within adult day services that aims to provide caregivers with information, skills, service coordination, and support to manage life demands and situations they face. Key influences on the implementation of ADS Plus were the relational nature of the program (site staff desired to build relationships and help families problem solve), learning about the intervention and how it should be implemented, administrative processes, and ADS Plus site staff optimism that families would benefit from additional support. Although our results point out that embedding a caregiver intervention within adult day services is feasible and holds a degree of acceptability among staff, it is important that interventions within ADS settings assess and build operational capacity. Future studies can address the impact of staffing on ADS Plus effectiveness, examine cultural considerations, and employ qualitative methods (e.g., Grounded Theory) appropriate for capturing interventions as social processes allowing for the generation of evidence and robust analysis on intervention mechanisms.

DATA AVAILABILITY

The authors have provided supplemental information. Persons interested in learning more about data should contact the authors directly.