Exploring how Caregivers for People Living with Dementia Use Strategies to Overcome Work System Constraints

Abstract

Informal caregivers for persons living with dementia (PLWD) require interventions that incorporate caregiving context. We used the Patient Work System model to characterize caregiving context by identifying work system constraints experienced by caregivers during dementia care events (e.g., managing behavioral symptoms of dementia) and strategies used to overcome constraints. We conducted twenty semi-structured interviews with caregivers. We performed upward abstraction and strategy mapping and identified seven work system constraints and eight strategies used to overcome constraints across three care events. We found that strategies used by caregivers either directly modified a constraint or emphasized other positive work system components to overcome a constraint. For example a caregiver modified their bathroom to support the PLWD in bathing themselves properly and safely. These findings provide an understanding of how real-world context influences how caregivers deliver dementia care and the design and implementation of systems that support dementia caregivers.

1. Introduction

The nearly 5.7 million person(s) living with dementia (PLWD) across the United States [1] are cared for by approximately 16.1 million informal caregivers (hence forth: “caregivers”), which are defined as unpaid, non-professional individuals who voluntarily assist with the delivery of care [2-5], Despite caregivers delivering care to so many PLWD, they are undersupported in addressing the challenges they face resulting in caregivers experiencing suboptimal outcomes such as high levels of caregiver stress, burden, burnout, depression, and morbidity. [6, 7]. This research aims to understand the perspective of the caregiver, exploring the expertise they evolve as they develop strategies in response to the challenging constraints they must manage.

Challenges in Dementia Caregiving

A number of factors make providing dementia care challenging. One factor is the complicated nature of the behavioral and psychological symptoms of dementia, which are signs of disturbed perception, thought content, mood, or behaviors and are evident in over 90% of dementia cases [8, 9]. Examples of dementia symptoms include agitation, repetitive questioning, wandering, and delusions [10, 11]. These symptoms are difficult to manage due to the variance in severity and frequency of their occurrence and the impracticality of a “one size fits all” approach to managing dementia symptoms [10, 12, 13]. A second factor is that PLWDs typically have co-morbidities such as limited visual acuity, fall risk, and other age-related medical complexities that may impact the care needs of the PLWD [7]. Finally, caregivers often receive inadequate training, have limited access to care support resources, and have significant unmet information needs [3, 14-16].

Dementia Care Intervention

The need for interventions that are sensitive to the range of contexts in which dementia care occurs is widely recognized. Despite over 200 tested dementia care interventions designed to address the challenges caregivers experience, many caregivers continue to experience negative outcomes [17]. This has been attributed at least in part to interventions not accounting for real-world factors (i.e., context) associated with dementia care [17]. For example, most of these interventions present generalized information regarding dementia and dementia caregiving, whereas research suggest caregivers require information tailored to their specific experiences and the specific circumstances and symptoms of the person with dementia [14, 16, 18-21].

A recent dementia care summit held by the National Institutes of Health highlighted the need for research on the context of dementia care in the home to provide a foundation upon which dementia care interventions can be designed to be more responsive to individual context [4, 22]. This call is further supported by research that points to a gap in our ability to design more tailored approaches for the caregiver to deliver care by accounting for the specific context in which care occurs [10, 14]. Despite the recognized importance of context in addressing caregiver challenges, research in this area remains limited in characterizing context [23]. To address this limitation, research can leverage approaches that take a holistic view in describing how care is delivered from a caregiver perspective.

Work Systems Approach to Studying Context

A macroergonomics approach, which seeks to understand how factors within a system influence a process and lead to outcomes, may be particularly useful to identify and describe the context associated with dementia care [24-26]. The macroergonomics approach has been used extensively in other healthcare-specific domains, most notably the Systems Engineering Initiative for Patient Safety (SEIPS) has been used to investigate a broad range of healthcare-related contexts [27-29]. SEIPS uses a structure-process-outcome (SPO) framework to describe how the interacting elements of a structured work system influence the care delivery process and thus contribute to outcomes [27, 28, 30].

The emerging role of patients and families in healthcare prompted an adaptation of SEIPS to reflect the work patients and caregivers perform with the introduction of the Patient Work System (PWS) model [31]. The PWS follows a similar structure-process-outcome framework to SEIPS, but includes contextual components specific to informal care settings, such as the home or community [31]. These include sociocultural, physical, and organizational context [32]. However, there remains a need to further explore and integrate into the model the processes patients and caregivers perform to overcome or change negative components of the work system, referred to as “constraints”.

Constraints and Balance Theory

Work system components can be labeled as either a constraint (i.e., component has a negative influence on the system) or a facilitator (i.e., component has a positive or neutral influence on the system). Constraints are broadly defined as obstacles that threaten the achievement of desired outcomes by blocking workflow, decreasing effectiveness, or increasing the effort required to perform a process [33-35]. Moreover, constraints can be situational, unexpected, and categorized as interacting attributes of system components such as persons, tasks, tools, and environment [28, 36, 37]. According to Balance Theory, which is the foundation of both SEIPS and PWS, a constraint can be overcome by balancing the overall work system by either 1) eliminating the constraints of the work system, 2) balancing the work system by identifying the facilitators of the system to compensate for the constraints, or 3) achieving overall system balance by ensuring the facilitators counterbalance the constraints [24, 25]. In other words, constraints are addressed through work system modification with the goal of attaining wok system balance. Balancing the work system can be done in real time through strategy use.

Strategies

In Human Factors/Ergonomics (HF/E), the science where macroergonomics resides, a “strategy” is often defined as behaviors carried out to overcome a work system constraint [33, 38-41]. Strategies are used to overcome system constraints by either adapting the constraint, working around the constraint, redesigning the system, or highlighting another component of the system [28, 42, 43]. For our purposes we use the term strategy to encompass synonymous terms such as workarounds and adaptations, although some find it useful to differentiate these terms ([43], p. 241). Adaptations are reactive or proactive, anticipated, or unanticipated, short-term fixes or long-term behaviors that seek to overcome system constraints to allow goal achievement [33-36, 43, 44]. Work-arounds are behaviors outside of the usual, accepted processes for goal achievement [36, 42]. For purposes of this study we define a strategy as “a planned or unplanned behavior to either avoid a constraint, emphasize another aspect of a work system component, or directly modify the component in an attempt to overcome a constraint”.

Research Objectives

This study used the PWS model to explore the contextual dynamics associated with dementia care events. Our specific objectives were to:

1. Identify and describe the work system constraints (i.e., challenges) experienced by caregivers during dementia care events,

2. Identify and describe the strategies used by caregivers to overcome work system constraints during dementia care events, and

3. Map work system constraints to the appropriate strategies used by caregivers for each dementia care event.

2. Methods

Study Design and Data Collection

This study used a qualitative descriptive approach [45] with semi-structured interviews to explore dementia care experiences and probe to elicit additional information [46-49]. The semi-structured interview guide (see Appendix A) was developed to obtain caregiver’s positive and negative experiences while providing care; the context in which care experiences occurred; and the strategies, tools, and resources used to provide care. Each interview lasted approximately one hour, was audio-recorded, and was conducted at a mutually agreed-upon location. Participants received a $25 honorarium. Audio-recordings were transcribed and deidentified prior to analysis. Data collection occurred between 2017 and 2018. This study was approved by university Internal Review Board (IRB) to ensure participant privacy and informed consent.

Study Participants

We interviewed 20 caregivers (female = 12) of PLWD. Caregivers were between the ages of 49-82, provided care to either a parent (N=11) or a spouse (N=9), and lived within a 90-mile radius of a midwestern city. Participants were self-identified primary caregivers defined as providing the majority of care and/or coordination of care for the PLWD. These caregivers have been providing dementia-related care for anywhere between 1-7 years. All caregivers spoke and understood English. We used a convenience sampling approach, recruiting caregivers through a hospital-based recruitment mechanism and a community agency.

Conceptual Framework

We used the PWS model and the Threat-Strategy Interview (TSI) [33] mapping procedure as the framework for our analysis. We used the PWS model as a framework to categorize constraints and strategies in the context of patient work. Categories included person, tasks, tools, and three forms of context: organizational, physical, and social [31, 32]. We used the TSI mapping procedure to frame how we analyzed the constraints and strategies. TSI is a structured procedure that aims to represent the relationships between strategies and constraints for specific events [33].

Data Analysis

Interview data were analyzed using a four step process that included a directed content analysis [50], initial strategy mapping process [33], upward abstraction [51], and a summative strategy mapping process [33] (Figure 1). This process aims to identify care events, constraints, and strategies, connect constraints and strategies to patient work concepts, and graphically represent the relationship between constraints and strategies.

Figure 1:

Flowchart identifying each step in the data analysis process and a brief summative statement for each step

Directed Content Analysis

We conducted a directed content analysis that followed a deductive approach [50, 52] to identify events, constraints, and strategies. The codebook (see Appendix B) was informed by the definitions found in TSI literature [33, 53]. In the TSI literature all three codes need to be identified to appropriately map the constraints to strategies within the proper context of the event. This facilitates the separation and contextualization of constraints and strategies based on the dementia care event. Transcribed interviews were independently coded by a team of three researchers, which were all HF/E graduate level students with training and experience in macroergonomics, the PWS model, and TSI literature. All three researchers coded a single transcript and then met to discuss any discrepancies and make any necessary changes to the codebook. Next, one researcher (DTW) coded the remaining transcripts while the other researchers (AL, DMW) each coded half of the remaining transcripts. Coders met weekly to review coded transcripts and discuss discrepancies until agreement was reached. Transcripts were coded using NVivo 11 software.

Initial Strategy Mapping

Researchers met weekly to create initial strategy mappings for each interview. Rationale for strategy mapping is informed by the TSI literature which defines strategy mapping as a visual representation of the relationships between the coded events, constraints, and strategies from the directed content analysis [33]. The mappings were created on a whiteboard by reviewing each transcript and were discussed until an agreement on a final initial strategy map was produced. These mappings were then drawn out using Cmap software, which is a free, commercially available software used to build visual representations of cognitive processes.

Upward Abstraction

After all the initial strategy maps were created, we applied an upward abstraction process to generalize findings and codes across all transcripts. Upward abstraction is a type of thematic analysis process that looks for recurring themes to represent data at a higher-level of abstraction, by removing incident-specific context surrounding the data to integrate findings across data to demonstrate patterns of behavior [51, 54, 55]. This is intended to facilitate the application and integration of findings across cases to show patterns of behavior.

Event, constraint, and strategy codes were exported from NVivo 11 to allow for further abstraction. Each researcher took an inductive approach [52] and generated sub-themes for events, constraints, and strategies. Then, researchers met to review their sub-themes and generate final themes by removing case-specific context found in the creation of the sub-themes. For each final theme, we recorded the number of caregivers that described experiences that contributed to those themes.

To understand how the work system influences the abstracted constraints and strategies, we categorized them based on the work system components described in the PWS model [31, 32]. Work system component definitions used to guide categorization can be found in Appendix C. Investigators defined constraints and strategies as work system components to aid in conceptualizing how strategies are linked to constraints and to explore which strategies may be more effective in addressing constraints of a particular component.

Summary Strategy Mapping

Finally, a summative strategy mapping was created for each event. We connected the final abstractions of constraints and strategies by reviewing the abstraction findings and the initial summary mappings. The constraints and strategies from the initial mappings were categorized into the constraint and strategy abstractions, and connections were then drawn between the constraint and strategy. This was repeated until all initial mappings were integrated into the summary mapping. Through this procedure, a final strategy map was developed to serve as a high-level representation of the relationships between constraints and strategies for each care event across all caregivers.

3. Results

We identified three dementia care events, seven constraints associated with those care events, and eight strategies caregivers employed to overcome the constraints. Constraints were mapped to strategies for each event to generate a high-level visual representation of the relationship between constraints and strategies. Results are detailed below with illustrative quotations and the associated deidentified participant number.

Dementia Care Events

We identified three dementia care events that were described across the 20 interviews. Events included transitioning or modifying care locations, completing care-related or daily living tasks, and managing dementia-related behavioral symptoms (Table 1). In some cases, events were discussed as a chain reaction where one event (e.g., managing dementia-related behavioral symptoms) was exacerbated by another event (e.g., performing a daily-living task). One caregiver described their frustration with trying to make dinner with the PLWD while the PLWD asked repetitive questions and became agitated:

Table 1:

Three dementia care related events and identified through the directed content analysis and upward abstraction process. The dementia care related events are accompanied by a description of each event and a frequency indicating how many caregivers discussed the event.

Events	Description	Frequency
Managing dementia-related behavioral symptoms	Caregivers notice cognitive and behavioral changes being demonstrated by the PLWD and work to address these changes in real-time. These changes include, but are not limited to: increased agitation, aggression, repetitive questioning, and wandering.	20 / 20 (100%)
Completing Care-related and Daily-living tasks	PLWD (either alone or with some form of assistance) work to complete care related tasks and daily-living tasks. Care-related tasks are tasks that need to be carried out to address a medical condition that the PLWD suffers from. The primary task discussed was medication management. Daily-living tasks are tasks that need to be carried out on a daily basis to maintain health and hygiene. Examples of these tasks are bathing, cooking/eating, changing clothes, doing household chores, etc.	17 / 20 (85%)
Transitioning or Modifying Care Locations	Care transitions are events that either trigger the need to plan, arrange, and/or perform the transition of the PLWD out of their current care environment and into a different environment. These transitions included: 1) moving the PLWD from their home and into a new home, 2) moving the PLWD from their home and into a community care center (i.e., retirement home); 3) moving the PLWD from their home and into a specialization care facility; or 4) moving the PLWD from one care facility and into a new one	14 / 20 (70%)

“I’m trying to get dinner ready and its like having a four-year old around with all the questions … [the PLWD] will say ‘I know how to do this’ and will get a little upset with me. He gets a little agitated”

(P703).

Constraints

We identified 299 descriptions of constraints, which we categorized into 7 composite constraints. We found 3 person-related constraints and 1 constraint each for tools, tasks, organizational context, and physical context (Table 2). Many of the constraints were related to co-morbidities or physical or cognitive limitations of the PLWD that influenced their behavior or ability to accomplish tasks. Caregivers also highlighted constraints related to gaps in their knowledge and ability to provide care. For example, one caregiver expressed a desire to learn more about dementia once the PLWD was diagnosed. However, the information was too generalized and they wanted to find information that is more applicable to their situation:

Table 2:

Seven dementia care related constraints identified through the directed content analysis and upward abstraction process. These constraints are accompanied by a description of each constraint, examples from data, the primary work system component that best matches the description, and a frequency indicating how many caregivers discussed the constraint

Constraints	Definition	Examples	Work System Component	Frequency
PLWD experiencing decline in mental and physical capability	The PLWD struggles with cognitive processing (i.e., memory, perception, etc.) and physical capabilities (i.e., walking, balance, etc.) and these capabilities are continuing to decline.	PLWD asking repetitive questions PLWD showing increased levels of agitation, aggression, and confusion PLWD experiencing increased frequency and severity of delusions and hallucinations PLWD demonstrating limited memory capacity PLWD can no longer walk Decline in capacity could be leading to an increase in frequency and severity of dementia-related behavioral symptoms	Person	20/20 (100%)
PLWD experiences difficulties using household and/or care tools	The PLWD cannot properly use household tools to ensure their care and safety. For example, the PLWD cannot operate the stove so they cannot prepare meals, or the PLWD leaves the stove on thus increasing the risk for fire. Moreover, the PLWD struggles to use care tools such as a pill box. For example, a PLWD may confuse the “Th” on a pill box for Tuesday instead of Thursday and take the wrong medication, or see that it is empty and think they already took their medication.	PLWD gets confused with pillbox labels PLWD does not know how to use kitchen appliances (oven, microwave, etc.)	Tools/Technologies	16/20 (80%)
PLWD has co-morbidities	The PLWD has co-morbidities (i.e., diabetes, glaucoma, bipolar) which impacts how care is delivered.	PLWD has glaucoma or limited vision PLWD has diabetes and struggles to administer insulin PLWD has an existing mental illness (i.e., bipolar)	Person	10/20 (50%)
Caregiver unsure how to care for PLWD	Caregiver is not prepared or knowledgeable on how to provide care for the PLWD. This can include not being aware of certain dementia-related symptoms or unaware of (paid/unpaid) care resources	Caregiver struggles to deescalate PLWD when providing care assistance Caregiver needs information on dementia behavioral symptoms Caregiver feels uncomfortable or has difficulties applying care techniques on PLWD Caregiver not familiar with the dementia-related behavioral symptoms Caregiver not noticing “triggers” to behavioral symptoms	Person	9/20 (45%)
PLWD care environment and location	The care location for the PLWD can be a safety concern with potential trip hazards. Moreover, caregivers may not be able to be as physically involved in care delivery if the PLWD is located far away.	Current care facility can no longer provide the necessary care or manage PLWD behavioral symptoms Physical layout of the home poses trip hazards and/or caregiver considers the home dangerous to the PLWD Care location is far from caregiver making management of behavioral symptoms difficult	Environment	9/20 (45%)
Complexity of medication management	Managing medications can become overly complex for caregivers when certain medications need to be taken at multiple times during the day and if there are changes in the prescribed medications.	PLWD has multiple medications and takes them at multiple times in the day Difficult for caregiver to verity PLWD took medications PLWD forgets to take medications or misplaces medications/pillbox PLWD thinks they took medications when they did not	Task	7/20 (35%)
Financial and insurance challenges	Caregivers may face challenges in funding the care delivered to the PLWD. This includes paying for in-home care services, food delivery services, and care facilities. Additionally, caregivers may face challenges when determining what insurance will/will not cover when trying to arrange for care assistance.	Cost not covered by insurance Amount of savings diminishing Budget dedicated for care being exceeded Insurance qualifications necessary for PLWD placement	Organizational	6/20 (30%)

“I did an incredible amount of reading on the NIH website, I ordered books too. I am looking for issue-specific information for Lewy-body dementia caregivers … because I didn’t see how some of the information was relevant to [the PLWD] and our situation”

(P536).

Strategies

Determining Strategies

We identified 302 actions that caregivers either already used, planned to use, or considered using to overcome constraints during care events, which we classified into 8 strategies (Table 3). We found that many of the strategies discussed involved changes to the organizational structure of the work system to overcome constraints that originated from other system components. Specifically, caregivers frequently sought assistance from a healthcare professional to identify local paid/unpaid care organizations, arrange care assistance, or to support the process of placing the PLWD into a formal care facility. One caregiver described how helpful a local aging disability resource center was in identifying volunteer services:

Table 3:

Eight dementia care related strategies identified through the directed content analysis and upward abstraction process. The strategies are accompanied by a description of each event, examples from data, the identified work system component that best fits the strategy description, and a frequency indicating how many caregivers discussed the strategy

Strategies	Definition	Examples	Work System Component	Frequency
Work with a local dementia care specialist or social worker	Caregivers implement the support of a local dementia care specialist or social worker to explore additional strategies to support dementia care delivery.	Caregiver communicates with a local dementia care specialist to identify dementia-related support resources Caregiver works with local social workers to identify local specialty care facilities and determine PLWD eligibility	Organizational Context	18/20 (90%)
Coordinate care with formal/volunteer care services	Caregivers schedule or employ available care services to assist with various aspects of dementia care.	Caregiver coordinates care needs with formal care centers Caregiver coordinates care services to come to the home and provide/support delivery of care and behavior management	Organizational Context	15/20 (75%)
Simplifying or implementing care and household tools	The modification of existing household tools or use of new (simpler) household tools with the intention of supporting the PLWD (and/or caregiver) in completing daily tasks. These same strategies are also used for care tools to support the PLWD (and/or caregiver) accomplish care tasks.	Caregiver gets a new pillbox or modifies an existing one Caregiver uses analog clock with large text, date, and time for PLWD Caregiver uses whiteboard to put frequently asked information for PLWD Caregiver adds notes or other visual cues on household items to support PLWD in using these items	Tools	14/20 (70%)
Preventative and proactive	Modifications to the surrounding care system in an attempt to prevent certain behavioral symptoms and negative care events (i.e., falls) or strategies to proactively avoid scenarios that may trigger certain behavioral symptoms and negative care events.	Caregiver removes or minimizes known “triggers” to behavioral symptoms	Person	13/20 (65%)
Behavior modification	Reactive strategies that a caregiver uses with the intention of modifying the current behavior of the PLWD.	Rewarding ‘good’ behavior Distracting or diverting PLWD attention Appeasing the PLWD	Person	12/20 (60%)
Modify care environment and/or care location	Caregivers made physical alterations to the care environment to improve the safety of the PLWD. Caregivers also change the physical care location of the PLWD to facilitate their ability to provide care to the PLWD.	Caregiver locks off parts of the house with fall and trip hazards (i.e., stairs) Caregiver modifies the house layout to make moving about the house and finding items easier Caregiver places PLWD in a specialty care facility for dementia-focused care	Physical Context	12/20 (60%)
Coordinate care with other caregivers	Caregivers share care responsibilities with other family members or get other family members more involved with physical delivery of care.	Caregiver works with other caregivers to determine strategies to manage dementia-related behavioral symptoms Caregiver coordinates care responsibilities with other caregivers to ensure constant observation of PLWD at home	Organizational Context	9/20 (45%)
Create/Modify routines	Creating or slightly modifying existing routines with the PLWD. Routines are a set procedure of actions used to simplify tasks to meet the various daily and care responsibilities faced by the PLWD.	Caregivers try to get PLWD on a routine to minimize confusion and track where items are kept Caregivers modify routines if the PLWD struggles to follow the routine or if unwanted behavioral symptoms still occur	Tasks	8/20 (40%)

“They [aging disability resource center] have been so helpful and connected us with a volunteer and they struck gold with that. They also made sure I know of other resources as well”

(P916).

Mapping Strategies to Constraints and Events

All seven constraints and eight strategies were mapped for each event (Figures 2-4).

Figure 2:

Summary strategy map of the care event "Modify care environment or location". The second layer contains the three constraints identified for tins event, and under each constraint are the strategies used by caregivers to overcome the constraints

Figure 4:

Summary strategy map of the care event "Managing dementia-related behavioral symptoms". The second layer contains the five constraints and subsequent strategies used by caregivers to overcome the constraint

Event 1: Modifying Care Environment or Transitioning to Formal Care Facilities.

We identified three constraints related to this event: 1) PLWD experiencing decline of cognitive and physical capabilities, 2) financial and/or insurance challenges, and 3) care environment limitations. Most experiences related to this event involved transitioning the PLWD from one care location (home, hospital, or current care facility) to another that was better suited for the needs of the PLWD. Related constraints often included the PLWD not qualifying for (or able to afford) placement into a care facility, or the care location being far away from the caregiver. To respond to this constraint, caregivers worked with local dementia care specialists, social workers, and other caregivers (i.e., family members, friends, etc.) to try and identify the most appropriate and affordable care facility located within a reasonable distance to the caregiver.

However, there were instances where caregivers discussed keeping the PLWD at the same location but modifying aspects of the care environment to either enhance their ability to provide care or to ensure the PLWD’s safety. Constraints caregivers experienced in this event were often related to the dynamic nature of progressive cognitive and physical decline of the PLWD and aspects of the environment that posed safety risks (i.e., trip hazards, unfamiliar scenery, open-flame stoves, etc.). Caregivers primarily addressed these constraints by making physical modifications to the care environment (i.e., closing off access to stairs, changing bathroom/home layouts, etc.) and working with formal or volunteer care organizations to maintain care in the current care location through receiving in-home care services.

Event 2: Completing Care-Related and Daily-Living Tasks.

We identified six constraints related to this event: 1) PLWD experiencing decline in mental and physical capabilities, 2) PLWD has co-morbidities; 3) Caregiver unsure how to care for PLWD; 4) PLWD experiences difficulties using household and/or care tools; 5) Complexity of medication management; and 6) PLWD care environment and location. This event required caregivers to prepare for the daily-living task, oversee the PLWD during the task, or complete the task either by themselves or with the PLWD. These events were often constrained by the PLWD’s co-morbidities (i.e., other non-dementia related medical conditions) or cognitive limitations, tools with low usability, or the caregiver being unsure how to perform the task. For example, the task of ensuring accurate medication management was often complicated by the PLWD forgetting to take medications, thinking they took medication when they did not, or being confused by a pillbox. Strategies to address these constraints included changing the pillbox or modifying it to make it easier to use for the PLWD, establishing routines such as placing medication in the same spot every morning, and personally overseeing the PLWD when taking medications.

Event 3: Managing Dementia-Related Symptoms.

We identified five constraints related to this event: 1) PLWD experiencing decline in mental and physical capabilities; 2) PLWD has co-morbidities; 3) Caregiver unsure how to care for PLWD; 4) Complexity of medication management; and 5) PLWD care environment and location. These behavioral symptoms included agitation, verbal or physical acts of aggression, hallucinations, and behavioral symptoms associated with cognitive decline. Caregivers discussed constraints such as their limited knowledge of symptom identification and management, the increase in symptom frequency or severity, and the influence of poor medication management and co-morbidities of the PLWD on the PLWD’s behavior. Strategies included behavior modifications, proactive/preventative changes to limit the number of “triggers” to the symptom, and reliance on care experts and resources to learn about symptoms.

Work System Components

We found that all work system components except social-cultural context were represented when reviewing the definitions of constraints and strategies. We found that almost all constraints were addressed through a strategy related to the organizational context component. These strategies typically involved engaging with a social worker or local dementia care specialist. Participants engaged these resources to find formal care facilities, determine eligibility for certain in-home care services, and access care-related information. Physical context was also frequently used to overcome constraints related to the caregiver or PLWD limitations or to overcome aspects of the current care location (i.e., trip hazards, distance from caregiver, etc.). Caregivers often described addressing constraints by directly modifying the constraint itself. One caregiver described that the distance from them to the PLWD was a challenge to ensure the PLWD would be properly cared for and monitored in their home. To address the physical distance between the caregiver and PLWD, the caregiver moved the PLWD closer to them:

“I flew [the PLWD] here and within two weeks had [the PLWD] moved into a senior apartment located about a mile away so I can see him at least five days a week”

(P410).

4. Discussion

In this study, we explored the dementia caregiving context by identifying and describing the work system constraints experienced by caregivers during dementia care events and the strategies they employed to overcome those constraints. We identified seven constraints and eight strategies across three distinct dementia care events. These findings extend existing dementia care research by using a work system approach to associate the challenges caregivers face during key dementia care events to the relevant context of care. Specifically, these findings highlight the importance of caregiving context and the critical role context plays in the dynamic relationships between the constraints of caregiving events and the strategies caregivers employ to address constraints.

Events Determine Constraints and Strategies

Specific care events are often associated with a common set of constraints. For example, in the event of modifying the care environment or location, the caregivers primarily experienced constraints related to financial cost, availability of facilities, and insurance coverages. As for strategies, participants reported similar strategies regardless of which constraints were most relevant to their situation.

These findings can inform future care interventions to better support caregivers. This study provides insight into the overarching challenges caregivers experience and the strategies they impose based on the event, which provides a foundation for developing targeted interventions. An understanding of the specific constraints associated with an event may lead to more target interventions to aid in caregivers in balancing the constraints they find most pressing. Future interventions may elicit caregiver-specific context information to suggest strategies that better fit the event and constraint. Future work should investigate experiences where multiple events occur simultaneously and how multiple events impact the constraints experienced and strategies used.

Expanding the Research on Dementia Care Constraints and Strategies

Prior research on dementia care has identified many challenges caregivers face while providing care to PLWD [7, 10, 16]. This study confirms and expands upon prior research by identifying challenges of dementia care through a work system approach. The work system approach facilitated the conceptualization of constraints as they occurred during the act of providing care. This allows for an extended understanding on how the constraint negatively influences care rather than simply identifying the constraint. For example, prior research has described elements of the physical location (lighting, trip hazards, noise, etc.) as a constraint to the management of behavioral symptoms of dementia [10]. Our findings support these previous findings, and expand on them by noting that the distance between caregiver and the PLWD, when the caregiver and the PLWD do not live in the same location, can also be a constraint to management of dementia symptoms. Prior research indicates that a lack of established care routines are a challenge when it comes to management of dementia symptoms [10, 56, 57]. Our work system approach expanded on those findings, highlighting that a lack of an established routine can serve as a constraint for other daily and care-related tasks such as eating, dressing, and bathing. Through the use of a work systems approach, we were able to identify the existence of known constraints in other care and daily related processes. This can be influential in expanding our understanding of when constraints occur and how the constraint impacts each care event.

Strategy research in dementia care mostly focuses on management of dementia symptoms and the use of non-pharmacological (non-drug based) strategies to overcome challenges associated with dementia symptoms [10]. Much of the previous research identifies management strategies associated with individual symptoms. This study explores strategy use for multiple care events by focusing on the constraints to elicit all strategies used by caregivers. Specifically, this study provided insight into the non-pharmacological strategies used by caregivers.

Implications for System Design

Caregivers use strategies to directly modify constraints with the aim of either mitigating or eliminating the constraint. This is aligned with the theoretical underpinnings of Balance Theory [24, 25]. Balance Theory is the catalyst for the initial introduction of the work system model [24, 25], which was the foundation for SEIPS and PWS [27, 28, 31]. Consideration of the Balance Theory can be useful when designing work systems for dementia caregivers. For example, instead of dementia care interventions being designed to eliminate constraints, they could be designed to emphasize facilitating aspects of the work system to manage constraints or even directly modify them.

The constraints and strategies described in this study underwent a classification process using the PWS model as a guide. Our findings extend the PWS model by providing insight into how adaptation occurs with the PWS [31]. Our findings suggest that caregivers use strategies to directly modify a constraint or emphasize other components in hopes of overcoming a constraint and thus improving process performance. Thus, the system informs the process and outcomes which informs the strategy implemented. The strategy implementation feeds back into the work system to address the constraining component indicating that strategy use is a continuous process or feedback and adaptation within the PWS.

Future Research

Future research can build on and improve this study in a few ways. First, while strategy mapping facilitates tracking which strategies are used to overcome challenges, using the prescribed interview probes from the Threat-Strategy Interview (TSI) technique may help guide the mapping process and demonstrate the full capabilities of the mapping technique [33]. Second, more research is needed to better conceptualize the use of patient or caregiver-led strategies in other chronic care contexts. Specifically, research should also seek to determine and describe the influence patient and caregiver-led strategies can have on care outcomes [36]. Third, future research should apply the PWS model to study other patient-work centric care contexts to continue validating and modifying the PWS model in various care contexts [31]. Fourth, future research should explore how a caregiver selects strategies and what personal variables, such as age, may influence their strategy selection process. This may inform the design of care intervention tools to support caregivers in strategy selection and management. Finally, research surrounding dementia care interventions should look toward the PWS model to understand how care is provided, what aspects of the care system influence caregivers, and how caregivers naturally overcome challenges to maximize how interventions can best support each individual caregiver’s work system.

Limitations

Our findings should be interpreted with certain limitations in mind. This study used a retrospective semi-structured interview technique, which required caregivers to self-report relevant care experiences. Future studies could use complementary techniques such as contextual inquiry to directly observe constraints and strategies in context. Another limitation is the caregiver sample used may not be representative of all care experiences because caregivers were recruited from a single metropolitan area. Additionally, the age of caregivers that participated in this study were between 49-82 years old. There may be younger generations (i.e. grandchildren) that support care delivery and were not included in this study. Future work should aim to collect caregiving experiences from a more geographically diverse sample and explore the physical, socioeconomic, and psychosocial factors that influence these experiences. Future work should also look to compare the strategies used by caregivers who have been providing care for various lengths of time or providing care for PLWD in different stages. There may be a limitation related to the use of the upward abstraction process. Through this process we removed context from data to support categorization of our findings, but this also made guidance for our definitions difficult and open-ended. As a result, we were unable to classify all of our strategies as either situational (i.e., used only when some set of factors occurred simultaneously) or consistent (i.e., used regardless of the existing factors) [34, 36]. The classification of strategy use as situational or consistent is aligned closely with findings in other patient work research, which indicates the possibility for conceptual overlap in patient work regardless of the care context and warrants further exploration [34, 36]. Finally, this study did not analyze the outcome of the strategies discussed by caregivers. This prevented us from determining if a new strategy had to be used to overcome a previously used strategy that morphed into a constraint. Future work could include data collection to identify strategy use and track the associated outcomes.

5. Conclusion

Caregivers are under supported when providing care to PLWD. Findings from this study expand our understanding of the real-world context in which caregivers deliver care to PLWD. This study also demonstrates that strategies can be used to modify to emphasize work system components to overcome constraints. Future work should expand on this research by using the knowledge of how caregivers overcome dementia care constraints within the real-world context to inform the design of dementia caregiver work systems and implementation of care interventions.

Figure 3:

Summary strategy map of the care event "Completing care-related and daily-living tasks". The second layer contains the six constraints and subsequent strategies used by caregivers to overcome the constraints

Highlights.

• Three challenging dementia care events were discussed by the caregivers.

• At least one constraint was identified in each work system component.

• Eight strategies were described by caregivers to overcome identified constraints.

• Dementia care challenges were contextualized through a work systems approach.

Appendix

APPENDIX A

Interview Guide

Administrative notes:

• Thank you for agreeing to participate in this interview. The purpose of today’s interview is to find out more about:

  • What your caregiving experience is like now and before hospitalization
  • Strategies and resources you use in your caregiving and how these are working well for you as well as ways they could be improved
  • What you feel your greatest areas of need are as a caregiver

• Explain purpose of recording, remind participant that no names, should be mentioned and no identifiable info etc. is ever used in the future

• The audio recorder is now recording and for the purposes of the recording, this is interviewer [INTERVIEWER INITIALS], [DATE], [TIME] and I am interviewing [PARTICIPANT ID].

Interview prompts:

Current Caregiving Experience

Transition

First, can you tell me (without using any names) who you’ve been caring for and how long you’ve been providing care? Do you share your caregiving responsibilities with anyone else?

Can you tell me about how things have been going since the hospital?

1. Can you tell me a little bit about what that transition was like for you as a caregiver?

   1. Were there things that went particularly well during the transition?
   2. Were there things that were more problematic?
   3. If you were to make these transitions as smooth as possible, can you tell me what that would be?

Pre-Hospitalization

Now I’d like to shift gears a bit, and talk about what things were like before the hospital stay.

• 2
  Can you tell me what a typical day was like for you before the hospital stay?

  1. What did a usual day consist of?
  2. How would you describe your caregiving activities during a typical day?
• 3
  Prior to the hospital stay, can you think of a particularly “good caregiving day” that you had recently and tell me what that was like?

  1. What happened?
  2. What went well? (did you talk to anyone else about it? Was anyone else present that day?)
  3. How common is a day like this?
• 4
  Prior to the hospital stay, can you think of a particularly “challenging caregiving day” that you had recently and tell me what that was like?

  1. Can you tell me what that day was like? What happened?
  2. What made that day challenging?
  3. How common is a day like this?
  4. What are some of the differences between the good day and the challenging day? (did you talk to anyone else about it? Was anyone else present that day?)
• 5Sometimes people living with dementia have [behavioral or emotional*] changes that some caregivers may find challenging?
  *** Pay attention to how caregiver describes “behavior” → try to use their language

  1. Have you experienced any of these changes with [person you provide care for]?
  2. What are your thoughts about why these [changes] occur?
  3. What do you do when [change] occurs?

Strategies and Resources

• 6Do you have any strategies you use to help you carry out your caregiving activities, manage challenging [behavioral or emotional*] changes or challenging situations?
  *** Pay attention to how caregiver describes “behavior” → try to use their

  1. Prior to the hospital stay, can you think of a time when you used a strategy that helped you manage a challenging caregiving situation?

     1. How did you identify the strategy?
     2. What worked well?
     3. Did you tell others involved in [CRs] care about the strategy?
  2. Can you think of a time when you used a strategy that didn’t work?

     1. How did you identify the strategy?
     2. What do you think didn’t work?
     3. Did you tell others involved in [CRs] care about the strategy?
  3. What were the differences between the strategies that worked and the strategies that didn’t work?
  4. Can you think of a time when you didn’t know how to handle a caregiving situation? What did you do?
  5. If you think about the situations you just described, what do you think would have been helpful to you when confronted with a caregiving situation you are unsure of or struggling to manage?
• 7
  Is there anyone you talk to about caregiving or who may be important to you in your caregiving role?

  1. Are there other family members nearby?
  2. Is there anyone else who is involved with providing care?

Probes

• How do you share information with them?

• What do you use to share information with them?

• What type of information do you share?

  • 8
    People have shared with us in the past that there are things about the physical environment of the home that can make caregiving more challenging or easier. Are there certain things about the physical environment of your home that make caregiving easier or more challenging?
  • 9
    We are also interested in learning about how caregivers prefer to access resources. What types of tools or resources are you currently using to help you with your caregiving?

    1. What about these has worked well for you?
    2. What about these resources has not been helpful or presented barriers?
    3. What could make these resources more useful for you?
    4. Do you access any resources on your computer phone or tablet?
       Type of access

    • e.
      Would you use a device such as resources on a phone or tablet?
      If you could have support for caregiving on a phone, etc. which of the following would be helpful to you?

    • Timeliness/Responsiveness of resource (i.e., at your fingertips vs. call back later)
    • Hands-on/demonstration?
    • Guidance for specific challenges
    • A chance to learn from and interact with other caregivers
    • Help with tracking care/behaviors
    • Help you connect and share information with your own caregiving teams?
  • 10
    Is there anything else you think it is important for me to know about the types of resources caregivers like you could benefit from?

APPENDIX B

Codebook used to guide the directed content analysis. This codebook supported the identification of care events, care constraints, and strategies used by caregivers in the transcripts.

Code	Description
Event	An aspect of care that the caregiver tries to address during the dementia caregiving process
Constraints	Any factor within care that can negatively impact the caregiver’s ability to address a care event
Strategy	A plan or action implemented to overcome a constraint and address a care event

APPENDIX C

Patient Work System component definitions used to help categorize the constraints and strategies identified through upward abstraction. These definitions were created based on seminal PWS model research [31, 32].

Patient Work System Component	Definition
Person(s)	Individuals who voluntarily perform or assist person(s) with dementia in health- or disease- related activities, including the person(s) with dementia, and the person(s) attributes. Attributes include, but not limited to: individual knowledge, motivation, mental and/or functional ability, attitude, personality, and demographic factors.
Task(s)	Illness-related (i.e., taking medications or symptom monitoring), personal health-related (bathing, grocery shopping), management (household cleaning, driving to appointments), and secondary care (care for co-morbidities not associated with dementia) tasks that are done when caring for the person(s) with dementia and the properties associated with tasks. Properties include but are not limited to: difficulty, timing, and complexity.
Tool(s)	Hardware and/or software used for health-related performance (complete a task), education, or engagement and the tools or technologies properties. Tools or technologies include, but are not limited to: record-keeping systems, communication technologies, organization equipment. Tools or technologies properties include accessibility, availability, usability, effectiveness.
Organizational Context	Structures and paid resources that organize time, space, resources, and activity inpatient’s homes and communities and the properties of these structures. Structural properties include in- and out-of-home social network arrangement, rules and roles, routines, workload, access to resources, and financial, communication, legal and policy factors.
Physical Context	Weather, environment, and care area factors such as: distance, layout, and workspaces. These factors describe care in various locations such as households, community locations, long term care facilities, and dedicated ad-hoc areas for performing health-related tasks.
Social Context	The social influence, social support, social engagement, cultural influence, socialization, and interpersonal influence that impacts care processes.