Implementing the Care of Persons With Dementia in Their Environments (COPE) Intervention in Community-Based Programs: Acceptability and Perceived Benefit From Care Managers’ and Interventionists’ Perspectives

Abstract

Background and Objectives

Nonpharmacologic interventions have demonstrated benefits for people living with dementia and their caregivers. Few studies have evaluated their implementation in real-world settings. Using normalization process theory (NPT), an implementation science framework, this study evaluated the acceptability of the care of persons with dementia in their environments (COPE) intervention by care managers and interventionists implemented in a Medicaid and state-revenue funded home and community-based services (HCBS) program.

Research Design and Methods

NPT and data from 9 care manager focus groups (n = 61) and 2 interventionist focus groups (n = 8) were utilized to understand COPE acceptability to program care managers and interventionists. NPT’s 4 criteria, coherence, cognitive participation, collective action, and reflexive monitoring, framed the research questions used to evaluate the intervention’s implementation.

Results

Care managers and interventionists demonstrated a shared understanding of COPE aims and the value of practices implemented (coherence). Training by national experts facilitated program buy-in to meet COPE goals and was demonstrated by care managers and interventionists as they used the training to broaden their program involvement (cognitive participation). Operational work done by care managers and interventionists to implement the intervention (collective action) and their shared perceptions of program benefits (reflexive monitoring) contributed to program implementation, families’ positive responses to COPE and enhanced sustainability.

Discussion and Implications

Introducing evidence-based dementia care interventions into HCBS programs strongly depends upon building shared understandings between care managers and interventionists and valuing the contributions of all stakeholders involved in delivering care innovations to people living with dementia and their caregivers.

Numerous nonpharmacologic interventions have been tested in randomized controlled trials with variable outcomes reported for people living with dementia, family caregivers, or formal care providers (Gitlin et al., 2020; Li et al., 2019; National Academies of Sciences, Engineering, and Medicine, 2021; Piersol et al., 2017; Walter & Pinquart, 2019). Most interventions target clinical symptoms contributing to disability, dependency, and diminished quality of life in people living with dementia, and the knowledge and skills needed by caregivers to improve their capacities and health-related outcomes (Gitlin et al., 2020; Kolanowski et al., 2018; Piersol et al., 2018; Robison et al., 2009; World Health Organization, 2019). With few exceptions however, these interventions have not been implemented in real-world settings, such as home or community-based service (HCBS) program settings (Arnold & Betensky, 2018; Gitlin et al., 2020; Pizzi et al., 2021). In the United States, the majority of people living with dementia (85%) live at home or in community-based supportive care settings, while about 15% live in nursing facilities (Mather, 2020).

Given that approximately 16 million family caregivers provide care for this population living in the community (Alzheimer’s Association, 2020), acceptability of promising interventions to health care professionals responsible for referral to or use of these interventions is crucial to their sustainability and dissemination (Bennett et al., 2019, 2020). Acceptability is the degree of willingness providers have to adopt an intervention, but it is often established by involving health care system leaders and not the frontline staff who are responsible for implementation of an intervention (Gitlin et al., 2020). If these individuals do not endorse the evidence, then implementation may not occur or may not be implemented as intended (Gitlin et al., 2020). This study evaluated the acceptability of the care of persons with dementia in their environments (COPE) program to staff responsible for its implementation in a statewide HCBS program. As detailed elsewhere, COPE was initially tested in a Phase III randomized trial (Gitlin et al., 2010) and subsequently implemented in a Medicaid and state revenue-funded HCBS program called the Connecticut Home Care Program for Elders (CHCPE; Fortinsky et al., 2016, 2020). In the present study, CHCPE care managers referred families to a trial testing COPE, and interventionists comprising occupational therapists (OTs) and a advanced practice nurse (APN) delivered the program to families.

To understand the perceptions of care managers and interventionists, we used normalization process theory (NPT), an implementation science framework that examines challenges people may have in using a new program (Valaitis et al., 2020). The theory provides a framework for describing how practices become routinely embedded in care environments through four core constructs: coherence (the meaningful qualities of a practice); cognitive participation (the engagement of individuals/groups); collective action (based on coherence and cognitive participation); and reflexive monitoring (ways a practice is evaluated both formally and informally by those involved in the process; Bracher et al., 2019; Goodridge et al., 2018; Hunter et al., 2020; May et al., 2018; Valaitis et al., 2020). Each core construct is comprised of four subconstructs. For example, the four subconstructs of coherence are differentiation, communal specification, individual specification, and internalization. These criteria are in dynamic relationships with each other and the broader context of the intervention (i.e., organizational structure and associated group processes; Murray et al., 2010). As an explanatory model, NPT helps health care professionals and researchers better understand the process problems associated with the implementation of new ways of thinking in an organization as well as the structural problems related to the integration of new practices into existing organizational settings.

Drawing upon NPT, we sought to address four questions: (a) To what extent does COPE make sense to care managers and interventionists and fit within their practice goals and activities for people living with dementia living in the community and their caregivers? (b) To what extent are care managers and interventionists willing to invest the time and energy needed to learn and practice COPE? (c) How compatible is COPE with the work practices and daily routines of care managers and interventionists? (d) What benefits and added value of COPE are apparent to care managers and interventionists?

Study Design

Conceptually, this qualitative study was embedded as a design element in the larger study that used a hybrid trial design in which both effectiveness and implementation processes were evaluated (Fortinsky et al., 2016, 2020). Briefly, COPE was designed to optimize functional abilities of people living with dementia and improve caregiver skills and well-being. COPE involves up to 10 in-home occupational therapy visits and one in-home and one telephone contact by an APN. In the COPE Connecticut trial, people living with dementia enrolled as CHCPE clients, and their caregivers were randomly assigned to receive COPE plus their ongoing CHCPE services or to continue receiving CHCPE services only (Fortinsky et al., 2016). Consistent with previous trials (Clemson et al., 2020; Gitlin et al., 2010; Laver et al., 2020), findings from this study showed that families receiving COPE reported improved well-being (Fortinsky et al., 2020).

Focus groups for this study were conducted separately with two groups of providers: care managers from a large community-based agency and COPE interventionists. While each group had distinct roles, all focus group participants were asked implementation questions.

Role of care managers: Monthly, care managers received a list of their people living with dementia clients who met initial eligibility criteria for the study. Then, during routine monthly monitoring telephone calls, care managers briefly explained the study to the clients or their family caregivers (Fortinsky et al., 2016). Care managers then referred interested dyads to the study team for telephone screening to determine study eligibility, willingness to participate, and to complete enrollment. A total of 168 care managers referred 971 CHCPE participants to the study during the recruitment period. Of these referrals, 291 dyads were eligible and willing to participate and enrolled in the trial.

Role of interventionists: During home visits, interventionists conducted cognitive and physical testing with clients to identify preserved functional capacities and limitations. They interviewed caregivers to identify specific care challenges, provided disease education, and completed a COPE program home safety assessment to identify potential safety hazards for clients. The interventionists gave a summary Assessment Report to all dyads that included: the results of the Timed Up and Go test (Podsiadlo & Richardson, 1991), Allen Assessment Battery (Allen et al., 2007), Disability Assessment for Dementia (Fish, 2011), Comportment (Peavy et al., 1996), and home safety assessment. The OTs used problem-solving and provided action plans called “COPE Prescriptions” that were tailored to the dyad based on the results from the assessment (Fortinsky et al., 2016). The prescriptions identified potential contributors to the caregiver-identified care challenge and listed specific strategies to help caregivers modify home environments, and simplify daily activities and communication approaches to support clients. Caregiver-identified concerns included behavioral challenges, difficulty managing the person’s daily activities, or caregiver-centered concerns such as talking to family members, coordinating care, stigma, or taking care of self. Interventionists recorded delivery (dose and intensity), receipt (caregiver understanding of prescribed strategies), and enactment (caregiver use of imparted strategies). Caregiver enactment information was collected through a caregiver report designed to measure the caregiver’s compliance/receptiveness and interventionist observation (Online Supplementary Material 1). Interventionists participated in bimonthly phone calls with the investigative team to review cases and discuss challenges. After all intervention visits were complete, the study coordinator sent the assigned care manager a copy of the Assessment Report, home safety report and the COPE Prescriptions for their records, which had previously been provided to the family.

The COPE APN conducted one home visit during which she conducted a clinical assessment and medication review of the client and obtained blood and urine samples to detect any undiagnosed medical conditions. In addition, the APN met with the caregiver to provide disease information on common medical concerns (i.e., hydration, nutrition, and pain), as well as planning for the future, and the importance of taking care of oneself as a caregiver. The APN then followed up by telephone to review the clinical assessment and lab test results with the caregiver, and encouraged the caregiver to contact the client’s primary care physician (PCP) to discuss these results. If necessary, the APN, with the caregiver’s permission, contacted the client’s physician if there were significant findings that needed to be addressed in a timely manner.

Methods and Analysis

Focus Groups and Participants

Focus groups were used to understand care managers’ and interventionists’ perceptions of the process of delivering care innovations (Hamilton & Finley, 2020) and were conducted by an experienced qualitative researcher and the study coordinator together in three consecutive years (2016, 2017, and 2018) with separate groups of care managers whose clients received COPE and interventionists. Nearly all care managers participating in the focus groups had referred clients to the COPE trial; a few were assigned COPE participants who they had taken over for another care manager, but had not yet referred anyone to the program themselves. Guiding questions were developed by the research team and the parent study’s Translational Advisory Committee, based on the four NPT criteria. In year two (2016), questions focused more on program startup and trainings in COPE. Additional focus group questions in years three and four (2017 and 2018) addressed the sustainability of COPE. The development of focus group questions in years three and four were informed by findings from focus group participants in previous years (Online Supplementary Materials 2–6).

Care manager focus groups were conducted at their workplace sites during each of the three years, and interventionist focus groups were held in a university conference room. Focus groups lasted approximately one and a half hours, were audiotaped, formatted as single transcripts per session, and imported into ATLAS.ti version 7.5.18 software to systematically identify and organize themes. Following an initial reading of the data, deductive or directed content analysis was used to corroborate the pertinence of the NPT framework guiding the study (Hsieh & Shannon, 2005; Mayring, 2000). The investigative team developed a codebook as a guide and used core NPT constructs for broad categories and subconstructs for more narrow categories. As focus group themes emerged, they were organized under the relevant categories. During data analysis, these themes were revised and refined by three researchers until no additional ones emerged (McCracken, 1988). For example, under the coherence category and subcategory of differentiation, the focus group theme “distinct COPE components” emerged. An example of this theme was: “The APN enhanced caregiver education” (Table 2). A cyclical, iterative approach to coding data and refining themes within categories continued until saturation was achieved or no new themes emerged. Agreement between researchers was important during this process and established strong levels of intercoder reliability (O’Brien et al., 2014). During analysis, the same three researchers separately coded the same primary documents and then compared coding. When there was disagreement in coding or the assignment of a theme, researchers discussed the text until there was consensus. The researchers compared 3 years of data, made connections between the data, interpreted them, and drew conclusions from the data. The Consolidated Criteria for Reporting Qualitative Studies (COREQ) checklist was reviewed to assure research design and analysis standards were met (Tong et al., 2007; Online Supplementary Material 7).

Table 2.

Coherence (Sense-making): Themes and Examples

NPT subconstructs	Focus group themes	Examples
Differentiation: How a set of practices is distinct from current ways of working	Distinct COPE components	COPE Assessment Reports and Prescriptions improved CM understanding of COPE care plans. Positive family feedback built CMs’ confidence in the efficacy of the OT component of COPE. CG validation and family focus strengthened supportive care. APN enhanced CG education. APN communication with PCP promoted more complete care and follow-up.
Communal specification: Building a shared understanding of the aims, objectives, and expected benefits of a set of practices	Shared thoughts about COPE goals	CG training provided in the community viewed as a valuable option. Benefits of COPE outweighed short-term costs.
Individual specification: Understanding specific tasks and responsibilities around a set of practices	Identifying COPE OT/APN roles and responsibilities	Educating CGs, disseminating information, and problem solving promoted quality care. Focusing on activities improved quality of life.
Internalization: Understanding the value, benefits, and importance of a set of practices	Valuing the COPE intervention and practices for optimal implementation	Sensitivity to and flexibility with CG dyads furthered the practices associated with COPE.

Notes: NPT = normalization process theory; CGs = caregivers; COPE = care of people with dementia in the environment; CM = care manager; OT = occupational therapist; APN = advanced practice nurse; PCP = primary care physician. Adapted from: NPT Core Constructs (Hunter et al., 2020; Sutton et al., 2018; Valaitis et al., 2020).

Results

Study Participants

Seventy-five care managers participated in a total of nine care manager focus groups held at three care manager worksites each year. One care manager attended all three years and 12 care managers participated during 2 years (Table 1), representing input from a total of 61 unique care managers. An average of eight care managers participated in these nine focus groups. Separately, seven interventionists (six OTs and one APN per year) participated in each of two interventionist focus groups, one held in year three and the other in year four, representing feedback from eight unique interventionists. An average of seven interventionists participated in these focus groups. Over 3 years, a total of 101 care managers were invited to participate in focus groups and 26 declined. In years three and four, seven interventionists were invited to participate in the focus groups. In year three, one interventionist was not yet on the team and in year four, one interventionist was no longer on the team.

Table 1.

Number of Participants in Each of the 11 Focus Groups: 2016–2018

Participants	2016 (n = 27)	2017 (n = 35)	2018 (n = 27)
Care managers	27	28	20
Eastern care managers	7	5	5
Western care managers	7	14	8
Central care managers	13	9	7
Interventionists		7	7

Implementation of COPE

To better understand implementation of the COPE program, results from the focus groups were organized according to the four domains of the NPT framework.

Coherence

NPT focuses on coherence, or identifying and understanding the ways that people make sense of implementing and integrating an intervention, and occurs individually and collectively as a set of practices is operationalized. The data provided evidence of all four subconstructs of coherence: differentiation, communal specification, individual specification, and internalization (Sutton et al., 2018; Table 2 and Online Supplementary Material 8).

Participants demonstrated differentiation through their understanding of how the distinct components of COPE delivered by the OT and APN differ from services typically available in CHCPE (e.g., homemaker, companion services, and traditional OT). Care managers agreed that the COPE Assessment Report and COPE Prescriptions provided a more in-depth understanding of the COPE care plan and strategies that could be used to address challenging behaviors. Care managers provided feedback regarding the affect of OTs through the implementation of Prescriptions that had been developed with caregivers. In one case, a care manager commented on the effectiveness of a Prescription that helped decrease a client’s nighttime smoking. In another situation, a Prescription provided strategies for introducing a baby doll that helped reduce anxiety in the client.

By the fourth program year, care managers received more feedback from families and had greater confidence in COPE. Many care managers agreed that caregiver validation and emphasis on the family reflected an important component of COPE that is not a focus in the CHCPE, and which enabled them to provide greater supportive care to both clients and families. Care managers agreed that COPE was “more specialized” than other programs, and a client did not need to have an acute condition in order for an OT to be involved; the OT is routinely involved and able to work with clients on everyday tasks and activities. Earlier in COPE, care managers did not have as clear an understanding of APN goals and outcomes, but by the fourth program year more care managers agreed that APN caregiver education provided better caregiver support and that communication between the APN and PCP generated more complete care and follow-up.

I think the one thing was when the nurse was able to get her off those meds because it seems that the meds were causing most of the problems, so once the meds were taken away and just a supplement, melatonin, [was given] that was it. (CM, Year 3)

Communal specification was illustrated as care managers and interventionists agreed that the purpose of the intervention aligned well with the growing need to provide training and support for caregivers.

The services that we currently offer are basically direct care for our clients where COPE is I think of it as a supportive care for not only the individual but for the family. The other services that we offer don’t address that piece. (CM, Year 3)

Individual specification was conveyed through the theme of COPE OT/APN roles and responsibilities. OTs noted that they did more one-on-one education, dissemination of information, and problem solving in COPE than in their usual practice settings. They agreed that the client-driven approach of COPE offered resources and strategies to empower caregivers. Throughout the program, OTs underscored the importance of their role and responsibilities, particularly activities that improved quality of life. Some OTs felt participation in COPE made them more sensitive and responsive to caregivers’ needs and they applied this benefit in other practice settings.

Internalization was expressed as valuing COPE and identifying how to optimally implement it. In response to asking interventionists to identify the point in the disease trajectory that COPE works best, they suggested that while it depended largely on the family situation, it could be useful in the early stages as well as later stages. OTs agreed the most important lesson in implementing COPE was being flexible with dyads at all stages in order to best apply COPE practices.

Cognitive participation

Cognitive Participation is the relational work people do to build and sustain a practice involving a complex intervention. The data provided evidence of all four subconstructs of cognitive participation: initiation, enrollment, legitimation, and activation (Table 3 and Online Supplementary Material 9).

Table 3.

Cognitive Participation (Buy-in; Engagement): Themes and Examples

NPT subconstructs	Focus group themes	Examples
Initiation: Key individuals are able and willing to get others involved in a new set of practices and move it forward	Involving key people in the intervention	Providing key individuals with training tools broadened their understanding of the program and encouraged engagement. Exposing key individuals to national experts helped OTs shift their focus from clinician to program facilitator. Debriefing calls provided OTs with support and enabled them to continue implementing the program. Program suggestions demonstrated a commitment to involve others in the intervention and move it forward.
Enrollment: Strategies are implemented to encourage buy-in and sustain engagement of the intervention	Investment of time and energy to be organized in the practice of COPE	Research meetings and feedback stimulated program buy-in. Strategies to improve time usage and program practices encouraged commitment to COPE.
Legitimation: Ensuring other participants believe it is useful for them to be involved in the intervention and that they can make a valid contribution to it	Time contributed to the intervention is worthwhile	Program practices that benefitted CGs and clients were worth CMs’ time.
Activation: Collectively describing the actions and procedures needed to sustain a practice and remain involved	Actions needed to sustain the intervention	Greater collaboration with APN and PCPs. Continue debriefing and training sessions.

Notes: NPT = normalization process theory; CGs = caregivers; COPE = care of people with dementia in the environment; CM = care manager; OT = occupational therapist; APN = advanced practice nurse; PCP = primary care physician. Adapted from: NPT Core Constructs (Hunter et al., 2020; Sutton et al., 2018; Valaitis et al., 2020).

Initiation was demonstrated when care managers shared that, in addition to their usual work, it was overwhelming to think about investing time in a new set of practices; however, through training and once they understood COPE, it was easier to commit to implementing the intervention. Some care managers stated that while what they were told about the program was clear, in the beginning they were confused about their role in the intervention. Care managers noted that training tools (e.g., the script and general information in the COPE brochure) were useful, enabled them to engage with the program, and empowered them to more easily explain the benefits of the program to clients. Agency supervisors who met with care managers to describe COPE components also promoted program buy-in and, in particular, the “refresher” meeting led by the research team to review the program and protocol encouraged engagement with COPE. Initiation included the exposure of key individuals to national COPE program developers during training in the implementation of dementia-related interventions. This enabled OTs to view themselves more as facilitators of the new set of practices rather than as clinicians. Ongoing weekly debriefing calls facilitated by COPE program developers extended the initial interventionist training and provided support to OTs and the APN enabling them to effectively continue implementing the program.

Phone debriefing with interventionists presenting cases are invaluable and also provides me with a chance to discuss any difficult cases that I need feedback on. (OT, Year 2)

OTs made suggestions to enhance program training, which demonstrated an ongoing commitment to involve others in the intervention and move it forward. They indicated that video examples would have been helpful in showing them how to more effectively implement COPE and could also save time.

What if we could have actually seen a video of each session of [the national program developer] doing it or – because even though we practiced it with ourselves, it’s different when you’re with a real person. It would’ve been really helpful to see that being done. (OT, Year 3)

OTs also suggested that having a better understanding of the larger evolving health care system in Connecticut would have been useful as they implemented the intervention. OTs identified problem solving, brainstorming, and helping caregivers adjust to what the future holds as challenging and suggested additional training would further enable them to encourage greater client involvement in the process.

I’d like more training in counseling or how to help facilitate change in people. (OT, Year 3)

Enrollment, another subcategory of cognitive participation, involves the complex work of rethinking individual and group relationships between interventionists and learning the program. As invested program participants themselves, interventionists often suggested minor changes to improve time management and program practices. This included decreasing case presentations from two to one during meetings and using an online discussion board to explore topics.

… do something online, like a discussion board, where we can share ideas about activities for low vision or to post a problem. (OT, Year 3)

Legitimation, an important component of the relational work involved in cognitive participation, ensures that the intervention is useful and worth contributing to. Throughout the COPE evaluation, care managers demonstrated that program involvement did not add much more time to their workload, could usually be incorporated into their monthly calls, and that any additional time spent was worth it.

I think like any intervention with individuals who have dementia, I think it’s beneficial for the families. So I think it’s worth our extra time to benefit the client. (CM, Year 3)

Activation, the final subconstruct of cognitive participation, was collectively described. Themes that emerged in earlier subconstructs (e.g., initiation and enrollment) were also present in the two examples that illustrated this subconstruct. First, greater collaboration with the APN, OTs, and PCPs was suggested as an important action with the potential to increase communication and sustain the practices being implemented. Additionally, OTs continued to value the debriefing calls and training to help sustain their efforts in the intervention.

Collective action

Collective action, the third NPT construct, encapsulates the operational work people do to enact a set of practices. The data provided evidence of all four subconstructs of collective action: interactional workability, relational integration, skill set workability, and contextual integration (Table 4 and Online Supplementary Material 10).

Table 4.

Collective Action (Compatibility Between the Intervention and Work Practices/Daily Routines): Themes and Examples

NPT subconstructs	Focus group themes	Examples
Interactional workability: The interactional efforts of people when implementing an intervention	Operation of COPE	Informational resources were useful in introducing COPE to clients and families. COPE materials guided delivery of the intervention. OT Assessment Reports and Prescriptions were helpful for CMs. OTs suggested ways to improve interactional workability.
Relational integration: Knowledge work to develop accountability and maintain confidence in specified practices	Awareness of how and when to use COPE	Feedback on program logistics came mostly from OTs and clients. Information passed from OTs to CMs regarding changing the environment was greater than that from other providers. CMs/OTs agreed more regular communication would be useful. APN/CM communications were limited.
Skill set workability: Allocation work that supports the sharing of labor around a set of practices	How COPE work is defined and divided between participants	Internal COPE processes related to roles and responsibilities could have been more comprehensive. CMs’ program workload was minimal and manageable. OTs’ daily routines and processes were impacted by the amount of time they invested in communicating with CGs.
Contextual integration: Managing specified practices through allocation of resources, performance of protocols, policies, and procedures	Incorporating COPE into current work	Describe CGs and clients who would benefit most from COPE. Create guidelines to help identify clients for the program. OT focus on activities should continue.

Notes: NPT = normalization process theory; CGs = caregivers; COPE = care of people with dementia in the environment; CM = care manager; OT = occupational therapist; APN = advanced practice nurse. Adapted from: NPT Core Constructs (Hunter et al., 2020; Sutton et al., 2018; Valaitis et al., 2020).

Interactional workability is the work people do with each other and with elements of the programs’ practices in seeking to operationalize them in everyday settings. This subconstruct was demonstrated by care managers who appreciated having informational resources to share with their clients and families that describe COPE and what it entails (e.g., introductory packet, script, and brochure). OTs also agreed that all COPE materials (e.g., the Intervention Manual and Documentation Binder) were helpful in guiding the delivery of the intervention. In particular, they found sharing resources through DropBox useful. Care managers described how they used the Home Assessment report and Prescriptions with their clients and how valuable these were. Finally, OTs reported that many family members had difficulty reading and understanding lengthy Prescriptions and suggested ways to improve COPE’s interactional workability. Some OTs received negative feedback from caregivers when referring to action plans as “Prescriptions;” clients suggested alternative names such as “strategies” for the plans. OTs also suggested that the Home and Safety Assessment reports should be more personalized and focused on recommendations for clients.

I wish our Home Safety Report was also geared more toward cognitive implications with more room to add those kind of recommendations. (OT, Year 2)

Relational integration, another subconstruct of collective action, refers to the knowledge work people do to construct accountability and sustain confidence in a set of practices and in each other as they implement them. This subconstruct was demonstrated by the interactions between care managers and OTs. OTs expressed a preference for the prefilled Prescriptions that could be individualized and many found the intervention manual a helpful resource. Debriefing calls, in particular the program developer’s responses to problems, were particularly useful. The level of information passed from OTs to care managers about changing the environment was greater than that from other providers and contributed to positive change in clients’ environments. Care managers agreed that better communication from OTs would be useful and could include regular or monthly postvisit client updates either through voicemail or e-mail. OTs also agreed communication could be improved by connecting more frequently with care managers and that care managers could be more helpful in reinforcing their goals for clients.

Skill set workability, or the allocation of work around a set of practices, was evident early in the program when care managers identified the need for improving internal COPE processes (i.e., providing a more comprehensive introduction to the program). Additionally, care managers suggested it would be helpful to receive an active list of COPE participants so they could facilitate greater client feedback. Throughout the program, care managers agreed that introducing the study as part of their monthly phone calls took extra time but was manageable. Not surprisingly, OTs’ daily routines and processes were affected more by the amount of time they invested in communicating with and validating caregivers’ concerns.

Contextual integration, the last subconstruct in collective action, involves managing a set of practices through the allotment of resources and implementation of protocols and procedures. This was illustrated when care managers described the characteristics that would be most important in identifying clients who would benefit from COPE: caregivers who feel burdened, challenged or stressed; caregivers who are isolated from other family members; clients with severe behaviors and those experiencing extreme anxiety or other mental health issues; and clients needing the intervention in other languages (e.g., Spanish and Polish). Care managers also suggested that acquired brain injury and personal care attendant Medicaid Waiver clients could also benefit from the program. Additionally, care manager recommendations included implementing guidelines to identify participants because while some clients qualify, they might not be the best fit for COPE due to extreme behaviors or behaviors that are not severe enough to benefit from the intervention. Finally, OTs suggested that if COPE becomes a permanent program, they would like the program’s focus on activities to continue.

Reflexive monitoring

Appraisal of the intervention is an important component of understanding how a set of practices affects the people involved and enables an intervention and related procedures to be redefined or modified. Similar to previous constructs, the data provided evidence of all four subconstructs of collective action: systemization, communal appraisal, individual appraisal, and reconfiguration (Table 5 and Online Supplementary Material 11).

Table 5.

Reflexive Monitoring (Whether Participants Perceive Intervention Benefits and Added Value): Themes and Examples

NPT subconstructs	Focus group themes	Examples
Systematization: Participants’ judgement regarding COPEs’ usefulness/effectiveness	Participants’ reactions to COPE	Families/clients responded positively about the program overall. The effectiveness of COPE’s interventions was commended. COPE was attributed with improving family communication. COPE resources promoted more confidence in caregiving.
Communal appraisal: Communal appraisal regarding the outcomes/values of COPE	Communal assessment of COPE benefits	COPE is an effective training strategy that addresses caregiver burden and facilitates the management of caregiving challenges. COPE enables participants to adapt to the changes they are facing and improve their overall quality of life. Intervention materials help empower caregivers and encourage them to be advocates for people living with dementia.
Individual appraisal: Individual appraisal regarding the outcomes/values of COPE	Individual assessment of COPE	COPE helped increase caregiver knowledge about the disease. The Intervention helped reduce caregiver burden and stress. COPE Interventionists provided constructive encouragement and additional support to caregivers.
Reconfiguration: Participants’ suggestions that aim to modify and enhance the usefulness of COPE	Program improvements	Education impacted behavior. Appropriate services were suggested and improved care and support for people living with dementia and caregivers.

Notes: NPT = normalization process theory; CGs = caregivers; COPE = care of people with dementia in the environment. Adapted from: NPT Core Constructs (Hunter et al., 2020; Sutton et al., 2018; Valaitis et al., 2020).

Systematization, the collection of information to determine participants’ positive assessment of COPE’s usefulness and effectiveness was demonstrated in the data.

My client’s wife was raving about the program. She said, “They gave me such great ideas, made me less stressed. I understand the disease process better.” (CM, Year 1)

COPE was credited with improving family communications through the use of a Google Calendar, suggested by the OT for family members to share information with one another. COPE resources, including the caregiver’s guide to dementia (Gitlin & Piersol, 2014), also promoted more confidence in caregiving and frequently improved the way the caregiver managed situations. For example, the suggestion to put tape on an object to make it brighter for the client to see, resulted in positive changes for one dyad.

Communal appraisal, or collective agreement, about the effects of COPE was expressed.

… having COPE can provide so many different ideas, resources, tools for them to better learn how to deal and cope. I mean overall, I just think it’s highly beneficial. (CM, Year 3)

COPE enabled participants to adapt to the changes they faced and improved their overall quality of life. For example, being able to talk about anger with an OT and the pain of a loved one no longer remembering who you are was especially valuable. Additionally, intervention materials helped empower caregivers and encouraged them to be advocates for people living with dementia.

[The APN] provides this document called “The Five Wishes,” as well as a handout that we give them, “Talking with Your Doctor,” to empower the caregiver to be an advocate for their loved one. (CM, Year 3)

Similar to communal appraisal, individual appraisal was also evident. COPE helped increase caregiver knowledge about the disease and enabled many caregivers to understand people living with dementia better. The intervention helped reduce caregiver burden and stress by encouraging better organization of a caregiver’s daily schedule and shifting more tasks to the companion homemaker in an effort to reduce caregiver burden. In addition, COPE interventionists provided constructive encouragement and additional support to caregivers through specific strategies, such as using a timer when completing a task.

Reconfiguration, the last subconstruct of reflexive monitoring, was evident in key participants’ suggestions to modify and enhance the usefulness of COPE. Care managers suggested that education affected behavior and enabled caregivers to respond more appropriately to the behaviors associated with the disease. Throughout the intervention, care managers and interventionists underscored that appropriate services were suggested and improved care and support for people living with dementia and caregivers.

I’e seen some improvements. Just adding the adult day center choice, that’s made a huge difference. (CM, Year 1)

Discussion

Our study sought to answer to what extent COPE made sense to care managers and interventionists and fit within their practice goals and activities (coherence); how they engaged with it (cognitive participation); how they operationalized it (collective action); and how they assessed and/or valued its effects (reflexive monitoring).

Outcomes indicated that there was coherence among care managers and interventionists in distinguishing COPE components from the usual way of working (differentiation) and building a shared understanding of the aims, objectives, and expected benefits of a set of practices (communal specification). Interventionists, however, were more likely than care managers to respond regarding their specific role and responsibilities (individual specification) and how well they understood the value, benefits, and importance of the practices implemented (internalization). Compared to care managers, interventionists’ greater involvement with COPE may explain their more robust endorsement of the program.

Interventionists were also more involved than care managers in driving COPE forward. Having access to training tools provided by national experts, they were able to broaden their understanding and involvement in the program (cognitive participation and initiation). This training included the complex work of interventionists learning how to shift their focus from a role as clinician to facilitator and building communal engagement (enrollment). Role clarification, or how well different people within similar roles in an organization relate to one another, is an important finding that is critical to the effectiveness of COPE and has been noted in other research as an important predictor of successful implementation (Culph et al., 2020).

Collective action was demonstrated in multiple ways including the dissemination of informational resources that were useful in introducing COPE to clients and families (interactional workability) and information that was passed from OTs to care managers regarding suggested changes to the environment (relational integration). OTs noted however, that the APN and care managers had limited communication opportunities with each other. Similarly, research by Culph et al. (2020) noted that nurses with limited communication opportunities with other staff had gaps in understanding some of the implementation project goals. Overcoming this gap could help to further develop accountability and maintain optimal patient and caregiver-centered care in specified practices.

Care managers and interventionists shared their perceptions of intervention benefits and added value (reflexive monitoring) by describing families’ positive responses to the program, including how COPE enabled more effective family communication and appreciation of program resources, an example of the systematization of information. Care managers’ and interventionists’ communal and individual appraisals provided evidence that the intervention effectively addressed caregiver burden and facilitated the management of caregiving challenges while improving the overall quality of life. Strong, communicative relationships and mutual encouragement to continue implementing COPE were demonstrated in our research and noted by other scholars as imperative to implementing evidenced-based programs (Culph et al., 2021).

The collective assessment of COPE and suggestions made to address challenges to improve the program (communal appraisal and reconfiguration) included ensuring delivery of resources (contextual integration), such as creating guidelines to identify appropriate dyads for the intervention and participants’ perceptions regarding COPE’s usefulness and effectiveness (systematization). Care managers suggested modifications to enhance the usefulness of COPE and improve dyadic care and support (reconfiguration). For example, some care managers suggested that a person showing up on their list might seem like the right person for the intervention, but they might not have a family member who could be involved in the program. Care managers also suggested that while a family could benefit from the intervention, they sometimes are not ready as a nuclear unit to participate in it. These caveats illustrate that timing and individual circumstances need to be considered when offering the intervention to families. Ideally, care managers would consider the dyads’ level of readiness in deciding whether to make a referral to COPE. The care manager’s assessment of readiness is distinct from the OT’s subsequent determination of whether the caregiver is ready to engage and implement COPE strategies. Given that the intervention is currently only available for English-speaking people or someone with access to a translator, additional suggestions included that the intervention be offered in other languages.

This research contributes to existing scholarly observations underscoring the importance of NPT domains in evaluating professional practice change and successfully implementing evidenced-based dementia care interventions (Culph et al., 2021; Dickenson et al., 2017; Gitlin et al., 2020; Johnson & May; 2015; May et al., 2016). Our findings also add to the evidence associated with dyadic interventions that consist of education and skills-building for caregivers of people living with dementia (Rahja et al., 2020). As one of only a few proven interventions for this population to be translated and evaluated in a real-world setting, this study demonstrates that the outcome of translational efforts depend on the interactions between participants and contexts, and emphasizes the importance of key people with characteristics that promote implementation and move new developments in care for people living with dementia and their caregivers forward.

Limitations of the Study

The impact of staff turnover and hiring of care managers and OTs in years two and three of the study was a minor limitation. Newly hired participants were disadvantaged in not being able to participate in discussions about the program startup and initial training aspects of COPE. While attempts were made to avoid a researcher’s bias through carefully constructed focus group guides, there may have been a potential for researcher bias associated with a study coinvestigator and study coordinator facilitating the focus groups. These study staff identified their roles at the beginning of each focus group when setting the ground rules. Similarly, the potential existed for the research team’s unintentional introduction of bias during coding or interpretation of the data. Other limitations were related to methodology and comments made by participants who could have contained potential sources of bias. For example, recalling or not recalling events or situations as they occurred in the past, an individual’s response tendency to consistently respond more negatively or positively, and/or concerns about how their response could affect others’ opinions of them (Baumgartner & Steenkamp, 2006).

Conclusion

Our study demonstrates that integration of COPE within existing care plans will likely generalize easily to other care management organizations responsible for coordinating home and community-based service programs in other states. Successful implementation of COPE by care managers and interventionists coupled with the beneficial outcomes for people living with dementia and their caregivers (Culph et al., 2020; Fortinsky et al., 2020) provide an avenue for widespread implementation of this evidence-based dementia care intervention in Medicaid and state revenue-funded HCBS programs nationwide.

Funding

This work was supported, in part, by the National Institute on Aging of the National Institutes of Health (grant numbers RO1AG044504 and P30AG067988). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Conflict of Interest

None declared.