Differing Realities Among Assisted Living Residents With Dementia: Understanding Care Partner Responses

Abstract

Background and Objectives

Persons living with dementia can experience confusion in terms of orientation to time, place, and scenario. The ways care partners respond are apt to shape quality of life and care experiences. With a focus on assisted living (AL) residents with dementia, we seek to: (1) examine differing realities and care partner responses and (2) identify influential resident and care partner factors, other contributing contextual conditions, and response outcomes.

Research Design and Methods

We present analysis of qualitative data gathered from a grounded theory (GT) study involving 8 diverse AL communities each studied for a 1-year period between 2019 and 2023. Researchers followed 73 residents with dementia and 103 care partners (family, friends, AL staff, external workers, volunteers), conducting interviews (n = 236) and participant observation (980 visits and 2,676 hr), and reviewing resident participants’ AL records. Guided by principles of GT, analysis was iterative, involved initial, axial, and selective coding, and led to the identification of the core category, “reality management.”

Results

Most residents experienced dementia-related confusion. In response, care partners engaged in a process of “reality management,” which involved strategies that invalidated or validated realities and emotions; these included ignoring, dismissing, correcting, redirecting, and joining. The nature, types and expression of confusion, and resident and care partner characteristics and capacities, influenced responses and outcomes.

Discussion and Implications

Findings reinforce the value of person- and situation-specific responses and have implications for practice and underscore the need for additional research.

For many individuals, the dementia journey includes navigating confusion about location in time, place, people, and situation (Huizenga et al., 2023; Requena-Komuro et al., 2020). Such confusion can create stress among those living with dementia and sometimes fear, anxiety, depression, anger, or frustration and associated behavioral expressions. This situation also can be characterized by burden and stress among care partners, including family, friends, care providers, paid care workers, and others (Reckrey et al., 2023; van den Kieboom et al., 2020). Care partners’ responses can be consequential to care interactions, relationships, and experiences for everyone involved ultimately impacting quality of care and quality of life, including an individual’s ability to interact and engage in activities they find meaningful.

Practice recommendations from the Alzheimer’s Association encourage care partners to “recognize and accept the person’s reality” (Fazio et al., 2018, p. S2). Yet, how best to deal with dementia-related confusion is in an ongoing debate that is made complex by diverse diagnoses and symptoms across dementia experiences in addition to practical and ethical concerns of a variety of care partners who may find collaboration and communication challenging (Arias, 2021; Dresser, 2021; Kemp et al., 2018).

Historically, a common approach to dementia-related confusion was reality orientation therapy, which involves presenting people with information or memories intended to orient them to time, place, and scenario (Taulbee & Folsom, 1966). Chiu et al.’s (2018) recent meta-analysis of research on the benefits of the therapy found a moderate effect on participants’ cognitive abilities but no positive effect on behavior or symptoms of depression. Critics of reality orientation argue that corrections are likely forgotten and possibly trigger distress (see Dresser, 2021).

Lack of success with reality orientation therapy led to the development of “validation therapy,” which promotes accepting a person’s reality rather than reorienting or correcting (Feil, 1967). Yet, limited efficacy research exists. Neal and Barton’s (2003) review of randomized controlled trials identified three applicable studies and was inconclusive. Erdmann and Schnepp (2016) examined the use of validation techniques in a German nursing home. Participants (n = 17) included select care providers (two nurses, seven validation therapy practitioners, and a physician) and seven resident relatives. Participants felt that validation led to: increases in residents’ sense of trust, belongingness and feeling appreciated and respected by care partners; and staff experiencing lower psychological stress, lower resident resistance to care, less violence during care, improved communications with co-workers and management, and overall satisfaction.

Deciding to validate an untruth or use deception can create ethical dilemmas for care partners, including nurses, physicians, psychologists, therapists, support staff (Hasselkus, 1997; Hertogh, 2004; Turner et al., 2017), and family and friends (Tuckett, 2012) as they attempt to protect persons with dementia from harm while preserving autonomy. Kirtley and Williamson (2016, p. 23) argue that “being able to ‘live well’ with dementia does not necessarily equate to being ‘wrapped in cotton wool’ and denied the truth, however upsetting.” Most care workers, however, acknowledge use of deception in the dementia care context (Hertogh et al., 2004; James, 2006; Turner et al., 2017), viewing it as acceptable if: (1) the person’s cognitive capacity is such that they do not understand the deception and (2) the intent is to prevent harm/distress (Arias, 2021; Huang et al., 2022).

Similar perceptions exist among family and friends of persons with dementia. Some view deception as unacceptable; others approve for distress relief or prevention (Casey et al., 2020). Although some wrestle with the ethics of deception, many family members conclude that its use “is in everyone’s best interest” (Blum, 1994, p. 34). Like reports of long-term care staff using deception to decrease their own distress when interacting with residents with dementia (James et al., 2006), family and friends sometimes rely on it.

Blum’s (1994) longitudinal qualitative work with an Alzheimer’s family caregiver support group found that as their person’s disorientation escalated, most learned and used different types of deception: (a) going along, (b) not telling, (c) white lies, and (d) tricks. Blum identified “two-party collusion,” and “collusions involving a third party,” referring, respectively, to the care dyad and involvement of additional colluders, including family, friends, or others.

Research Context and Sensitizing Framework

Little research has investigated in an in-depth way how informal and formal care partners, individually and collectively, negotiate confusion as it arises in daily life or considers the responses of and outcomes for persons with dementia and those supporting them. In this article, we address this knowledge gap with a focus on assisted living (AL), which houses over one million older adults in the United States; 44% have a diagnosis of Alzheimer’s disease or another dementia (Melekin et al., 2024). These care communities offer 24-hr oversight, meals, assistance with activities of daily living and medication management in homelike settings but are not nursing homes and do not provide skilled care (Zimmerman et al., 2024). Like others who need support, AL residents, including those with dementia, are situated within care convoys (i.e., networks) of evolving constellations of informal (i.e., family, friends) and formal care partners (i.e., AL staff, external providers) who are involved in their care and influence their daily lives (Kemp et al., 2013). The AL setting facilitates understanding the experiences of persons living with dementia and their myriad convoy members.

Here, we present analysis of data from our grounded theory (GT) study focused on identifying best care practices for optimizing meaningful engagement among AL residents with dementia. Following Corbin and Strauss’ (2015) GT approach, a sensitizing framework informs but does not determine our aims, methods, and analysis. Several findings from past analyses guide this work. First, we identified successful approaches care partners used to promote meaningful engagement among AL residents with dementia: (1) knowing the person; (2) meeting people where they are; (3) being in the moment; and (4) viewing all encounters as opportunities for meaningful engagement (Kemp et al., 2021). Next, we identified “engagement capacity,” defined as “the amount and nature of engagement resources associated with” residents, care partners, entire care convoys (i.e., networks), and the AL setting and contexts (i.e., surrounding neighborhood, broader social and regulatory contexts) (italics original, Kemp et al., p. 862). Care partners who used at least one of the four approaches had greater capacity and success interacting and engaging with residents than those who did not. Finally, we built cumulatively on these findings and existing literature connecting each approach to principles of improvisational (i.e., improv) theatre techniques, which show promise for increased competency acquisition and building engagement capacity (Kemp et al., 2024) and has implications for understanding reality. Yet, research focused on differing realities and care partner responses is needed.

Aims

Our aims here are to: (1) examine AL residents’ differing realities and care partner responses, and (2) identify influential factors and conditions shaping these responses and accompanying resident and care partner outcomes. Of interest are any resident (e.g., identity, history, behavior) and care partner (e.g., roles, knowledge, skills, beliefs) influences and other contributing contextual factors (e.g., setting, scenario). This knowledge can be used to identify strategies for enhancing relationships and interactions and improving engagement capacities. Although set in AL, our work has implications for dementia care, interactions, and relationships and improving quality of life and care regardless of setting.

Methods

Sites, Data Collection, and Participants

The study involved eight diverse AL communities studied for 1 year each between 2019 and 2023 (see Table 1) with an 18-month data-collection hiatus beginning in March 2020 due to pandemic-related public health protocols. Located in and around Atlanta, GA, sites were chosen for variation in factors likely to affect resident engagement (e.g., size, location, fees, ownership, memory care, and resources). Researchers conducted participant observation, semi-structured interviews with residents (as possible) and care partners, and resident record review (see Table 2). Interviews were recorded and transcribed by a professional transcription company compliant with the Health Insurance Portability and Accountability Act. For anonymity, we use pseudonyms for sites and participants. Institutional Review Board approval comes from Advarra (Pro00029867).

A team of gerontologists consisting of 29 student-, staff-, and faculty-researchers from multiple disciplines and a range of experiences and backgrounds, all with training in dementia, long-term care, and qualitative methods, were involved in the study. The fieldwork team was comprised of 22 field researchers, including 17 interviewers, divided into site-specific teams assigned to conduct collect data in each community. Researchers obtained written consent for sites from administrators. We also obtained written consent from individual participants with capacity and proxy consent for resident participants without the ability to consent. Researchers used assent procedures with people in the settings, including participants with proxy consent.

Researchers made 980 visits, varying days and times. Observations, recorded in fieldnotes, captured daily life and care routines with emphasis on resident engagement and interactions during structured (e.g., activity programing, mealtimes) and unstructured times. Researchers spent time in common areas, residents’ rooms, and occasionally joined community-organized outings. Researchers carried notebooks documenting key information onsite during observation. Following the visit, researchers wrote (in Microsoft Word) detailed fieldnotes, which were imported into our qualitative database.

Guided by theoretical sampling and emerging findings (Corbin & Strauss, 2015), we recruited and studied 73 residents for 1 year or until they moved out (n = 3) or died (n = 10), seeking variability in characteristics apt to influence engagement (e.g., age, gender, levels of physical and cognitive function, background, see Table 3). Dementia diagnoses within our sample included Alzheimer’s disease, frontotemporal dementia, Lewy body dementia, vascular dementia, and mixed or unspecified dementias. We observed and interacted with resident participants during researcher visits and conducted semi-structured interviews (see Supplementary Table 1 for interview topics) who had the ability and consented (n = 23). In one instance, a care partner was present to facilitate comprehension. The average interview length was 39 min. Researchers collected residents’ demographic and background information from their AL records and informal care partners.

Researchers conducted in-depth semi-structured interviews with 213 care partners, including AL staff (n = 93), residents’ family and friends (n = 77), volunteers (n = 8), and external care workers (n = 35) purposively selected for their knowledge of and connection to residents (see Table 4). These interviews were tailored to roles and gathered information on residents’ daily lives and engagement, care routines and interactions, and community characteristics. Each care partner was asked about experiences with and “strategies” for interacting with residents “confused about time or place or people.” Interviews averaged 66 min in length.

In GT, data collection and analysis occur simultaneously and iteratively, informing one another (Corbin & Strauss, 2015). The entire research team met on an ongoing basis to discuss fieldwork, including the identification of new lines of inquiry, and to advance analysis. Each field researcher wrote a running memo documenting theoretical, methodological, and emotional insights. Early on, we noticed that resident confusion and care partners’ responses were consequential to residents’ engagement experiences and modified our observation and interview guides to capture relevant data. We created detailed profiles describing each site and resident participant that addressed our aims and captured continuity and change. Profiles facilitated comparison within and across sites, persons, and data collection periods.

Analysis

We stored, managed, and coded all qualitative data in NVivo 1.6.1 (QSR International), using it to facilitate analyses. Throughout data collection, 26 researchers coded using a codebook developed by the full team based on the aims, literature, and observations. During meetings we discussed coding. We initially used NVivo’s inter-rater reliability testing to ensure consistency across coders and identify discrepancies, which were resolved through discussion and consensus. Codes represented broad categories and included, “reality,” which was added early in the study, “engagement partner strategy,” and “residents’ behavior and responses.” Such coding allowed us to identify and organize data for the present advanced analysis.

Using Corbin and Strauss’ (2015) three-pronged approach to GT analysis, we began open coding by examining data relevant to resident realities, noting for instance, “nature of confusion” and “care partner strategies.” As initial coding progressed, we identified “validation,” “lack of validation,” “dismissal,” “distraction,” and “redirection” among other care partner strategies. During axial coding, we linked our initial codes to those capturing contexts, conditions, and influential factors. For example, we noted that strategies varied by the nature, type, and expression of confusion and by care partner’s capacity, including use of the four approaches. Finally, during selective coding, we refined and integrated our coding around the core category, “reality management.”

Care partners engaged in a process of “reality management” in response to resident confusion. This process involved using strategies that invalidated or validated residents’ in-the-moment realities or associated sentiments/emotions. Strategies ranged from ignoring and outright dismissal to acknowledgment and engagement in the resident’s reality. Care partner responses were influenced by several factors and conditions including the nature, types and expression of confusion, and resident and care partner characteristics and capacities.

Findings

Ninety-one percent of resident participants (n = 68) experienced confusion or differing realities, including one whose wife observed, “His reality certainly isn’t the one we know.” Although the nature, frequency, duration, and implications of confusion varied overtime and by resident, especially given their diverse backgrounds and histories, there were commonalities. Confusion frequently resulted in asking, “Have you seen my…?” as they looked for their “car,” “keys,” “purse,” or inquired about “the way out,” destinations (e.g., “Where’s the meeting?” or “Where’s the bar?”), or people (e.g., “husband?” or “daughter?”), motivated by a need to get home, to work, or to school. An Oakwood Forest resident’s daughter explained this common phenomenon noting, “Dad’s sense of reality is [that] he’s not where he’s supposed to be, but he is supposed to be getting there.”

Certain residents thought they were at “school,” “work,” a “hotel,” or living in different city or state. Several incorrectly believed they were related to AL staff or coresidents. Many searched for deceased relatives, forgot they were married, or stopped recognizing loved ones. Some experienced anxiety or paranoia, feeling they had been abandoned by family or victims of theft or deception. Still others experienced nightmares or had visual, auditory, and even olfactory hallucinations shaping their lived experiences. A few female residents had dolls or stuffed and robotic animals they treated as “babies,” providing affection and care. Resident realities often resonated with and varied based on their life histories, social identities, roles, and relationships.

Reality Management

Care partners engaged in “reality management,” a process through which they dealt with resident confusion. We identified five distinct management strategies used by care partners: ignoring, dismissing, correcting, redirecting, and joining. Ignoring, dismissing, and, sometimes, correcting involved care partners reacting in unilateral ways that neither met residents where they were nor validated their realities or emotions. In contrast, redirecting, joining, and certain applications of correcting were collaborative and empathetic and involved negotiating with the person, their perceptions, and frequently, other convoy members. These strategies typically involved attempts to validate residents’ realities, their emotions, or both. Below, we discuss each strategy, including application, influential factors, and accompanying implications.

Ignoring

This strategy involved not paying attention to a resident or dealing with their confusion. Although infrequent, ignoring was used when care partners did not know how to respond, including the daughter of a Lakeshore resident who said, “I just keep talking” whenever she was unsure about what her mother was saying. In other instances, ignoring happened when care partners were preoccupied or recently attempted to manage the resident’s confusion, especially when it was an ongoing occurrence. Roger, a Holly House resident was among those who frequently wanted to get somewhere. He repeatedly sought help, especially from staff. This fieldnote excerpt explains his perspective:

“Everywhere I go there’s a fence. I’m thinking about jumping over one,” Roger said. He wanted to see his granddaughters and felt they were out having fun while he was stuck inside. He felt that the staff ignored him when he asked questions.

Questions or requests for help and assistance with leaving were common across sites. At Blanchard Home, a researcher observed an exchange between a care worker and two student volunteers who were concerned about resident, Eleanor, who insisted that she needed to “go somewhere.” The staff member said, “Eleanor has nowhere to go” and instructed the students to “just let Eleanor be.” Some residents reacted to ignoring by walking away; others gave up. Still others persisted.

Dismissing

After listening to a resident’s reality, some care partners minimized concerns, said, “don’t worry,” or waved them off. One external care worker provided a common example: “I have seen staff in all communities say things like, ‘So and so didn’t steal your wallet.’” Dismissal derived from assumptions about dementia and a person’s ability to remember or to know the “truth.” Yet, as the daughter of an Oakwood Forest resident discovered, persons with dementia can have moments of clarity: “Usually you just dismiss it because you think they don’t know what they’re talking about but, sometimes they really do when you dig deeper.” A Holly House resident’s daughter also noted, “In mom’s jibber-jabber that she talks, there is—it’s reality in there.” Such observations point to the potential dangers of dismissing residents and overlooking potentially meaningful information.

Dismissing sometimes was intended to keep residents safe, especially those who felt the need to do something or be somewhere. George, a retired social worker, living in Oakwood Forest’s memory unit, for example, frequently believed he needed to get to work. The following fieldnote excerpt describes his experience being dismissed by a staff member entering the unit to deliver meals:

George walked around the community asking other residents how to get out. He felt his “clients” were waiting for him. He said he felt embarrassed having to keep asking how to get out... George pushed and banged on the locked door...[and] pleaded that he needed to get out. A worker entered the unit, shook his head ‘no’ [to George] and resumed what he was doing. George gave out a frustrated sigh and went on to ask someone else.

As illustrated, dismissing was often related to a care partners’ uncertainty about how to respond, their role, training, or preoccupation with other tasks. Like ignoring, dismissing rarely resolved confusion, accompanying behaviors, and feelings and represented lost opportunities to learn about a resident, reinforce their personhood, and deal with what “really” could be happening and is meaningful to them.

Correcting

Certain care partners addressed resident confusion with efforts to reorient them through truth-telling strategies. Care partners who corrected did so because they believed it was the best or only solution. Correcting typically unfolded over time, required repetition, and varied based on care partners’ underlying motivations, scenarios applied, and most notably, outcomes, which existed on a continuum from harmful to beneficial correction. Outcomes varied by resident, their identity, history, beliefs, confusion, and emotional state.

Correcting sometimes stemmed from a care partner’s moral and ethical beliefs about persons with dementia wanting, needing, or deserving to experience the full range of emotions or know the truth. A few family members also were guided by past or present resident requests: “don’t lie to me”; sometimes truth telling became “engrained.” Lakeshore’s memory care director explained, “I have seen staff members go back and forth: ‘You know you’re not driving no more.’ That’s the kind of people we can’t have working in memory care. It happens, but some people just don’t understand.”

Certain care partners corrected resident realities, including about losses. At Holly House, Benton’s family repeatedly reminded him of his brother’s death. Fieldnote data documented his response: “Benton said, ‘I don’t remember that. I can’t remember going to his funeral!’ This revelation made Benton progressively more upset and anxious.” Over time, correcting took its toll on Benton’s physical and emotional health. The Gardens’ engagement director explained the potential harm of correcting: “I’m not gonna say, ‘Oh, Mr. Johnson, your wife is dead. Don’t you remember? You went to the funeral,’ That individual’s just reliving that horror ‘cause they were hearing it for the first time because they didn’t remember.” Yet, this was not universally true.

Correcting was beneficial to certain residents and those around them. Correcting that was guided by knowing the person and meeting them where they were in their reality tended to be successful. Thus, although some residents were harmed by truth telling, including about deaths, others benefited. At Meyer House, for example, staff in collaboration with Dina’s family used correcting. A care worker explained, “When Dina starts crying and starts asking for her husband, you’ve got to remind her, ‘Remember?’ ‘Oh, yeah. I remember you guys said he died.’” Alice, a Holly House resident, was similarly comforted by the truth. Her daughter explained:

Mom thought Dad was going to divorce her because she hadn’t seen him. “Has he got another woman?” I thought, “Boy, this is bizarre.” It’s strange because he was always so faithful. I’d have to tell her, “Mom, he’s in heaven. He’s waiting for you. He’s up there playing golf with all his buddies and he’s waiting for you.”

In these instances, correcting was influenced by the care partners’ relationship with the resident, and their capacity, including their knowledge of the resident, what provides comfort, how best to present information, and when correcting might be beneficial.

Care partners sometimes tried correcting after other strategies failed to successfully manage resident realities. At Oakwood Forest, for instance, after repeatedly dismissing and trying to redirect Joyce’s focus, her doctor, family, and staff collaborated. A staff member explained:

Joyce [incorrectly] thought that she had cancer…her daughter took her to the oncologist. They typed up her result...framed it and put it on her wall. Now every time she thinks she has cancer…guess what?

This strategy involved identifying and validating Joyce’s reality and accompanying emotions and negotiating, collaborating to develop a resource and long-term strategy for convoy members. Correcting resulted in beneficial outcomes for Joyce and her care partners.

Redirecting

Redirecting involved distraction and attempts to shift resident focus to another topic, activity, or location. It was the most common reality management strategy identified. Some care partners used this strategy when other approaches failed, and residents persisted in their reality. After George’s attempt to go to work was dismissed, for example, he ultimately was distracted and redirected by another worker inviting him to “come and help.” Meanwhile, at Holly House, fieldnote data captured Zoey, a staff member’s evolving response when a resident asked for driving directions: “At first, Zoey ignored Bob’s questions. He kept asking Zoey and she acknowledged him [saying], ‘You don’t need directions. Your niece is coming back to get you.’ Bob said, ‘Oh, she is?’ and stopped asking for directions.” Zoey moved from ignoring, to dismissing, and ultimately, redirecting. In shifting focus to the family outing, Zoey avoided mentioning that Bob no longer drives, which to him, was distressing and did not reflect his reality. Staff often employed redirecting in group settings, including a Parkview care worker who observed, “it’s easy for one person to set off the group” and placed value on “knowing how to redirect [residents so] it doesn’t cause confusion” to escalate.

Most care partners paired redirecting with acknowledgement, validation, empathy, and emphasized “relating.” An engagement worker from Oakwood Forest explained her approach, philosophy, and application:

I use redirection. I use distraction. I never outright lie, though, because lies you gotta remember what you said when you said it, and who you said it to, and why you said... I don’t necessarily always answer the questions. I tend to get them to focus on something else. I use a lot of humor, even if my jokes weren’t funny sometimes, as a distraction. Mrs. Smith, she’ll tell you, “Honey, can I catch the bus with you when you go home because I don’t live here.” I said, “Sweetie, I’m not catchin’ the bus today, I’m walkin’, and I know you don’t wanna walk in your walker.” She be like, “You know what? You right.”

Similarly, Lakeshore’s care director described being “happy to go down memory lane,” and her response to a resident who believed she was going to Texas to see family:

We’re going to walk down this hall. We may go in your room, get a coat. In the meantime, we’re going to grab a snack, and then we’re just going to try to change the whole tone. I’m going to relate to you, because you can’t tell someone, “You know you’re not going to Texas. You haven’t drove in so long, and when you go out now, your children take you.” You can’t do that. If it just takes a walk, “Let me get your coat. Do you have your purse?” We may go get a snack. We’re going to put the snack in their purse for later. Hopefully it just shifts.

An external care worker explained the significance of relating in the process of redirecting: “When a resident says, ‘Do you see that mean dog over there?’ [If] I don’t see it. I rarely lie, but I say, ‘If it’s there, I would be scared too.’” Like others, he emphasized “validation” as the “first step” in “getting” someone “back to a comfortable place” where they “relax” and “feel like someone is listening,” which allows them to focus elsewhere and to function. Other care partners echoed these sentiments stressing the importance of “being there,” and creating “trust,” “safety,” and “security,” through “validation.”

Joining

Select care partners sought not only to understand, recognize, and validate resident realities, but went further by stepping into and “going along” with and engaging in residents’ realities. Used by all care partner types, this strategy was dependent upon an individual’s willingness, comfort, communication skills, experiences, and training. The daughter of a Holly House resident described the progression of strategies within her mother’s care convoy stating: “Instead of arguing or saying, ‘Ma, what are you talking about? We’re not at work.’ At this point now, we all just agree. She’s at work.” In addition to learning by experience, several care partners talked about learning from experts that “you can’t win an argument with [a person living with] Alzheimer’s.”

Joining involved collaborating with the resident to affirm their reality and often involved improvised responses. For example, the daughter of an Oakwood Forest resident explained, “Mom was saying, ‘Well, I need to go home and see mama.’ I was just thinking, by that time her mother had been dead for well over 10 years. I’d say, ‘We’ll go next week’ and she’d go, ‘Okay.’” In another instance, the daughter of a Meyer House resident reflected on their family’s strategy and underlying philosophy that allows them to engage in her mother’s reality:

Let them be in their fantasy world. What difference does it make?.. I used to try to [correct]...Go with the flow. Yep, that’s what my brother did. When she didn’t recognize her own son, he would just say, “Yep, I’m the chauffeur today.”

Care partners who engaged with residents’ realities typically accepted the reality and built upon it (e.g., I’m the chauffeur). Doing so reinforced acceptance.

Understandably family members sometimes struggled when residents no longer recognized them; engaging in a reality that cast them in a different role was beyond their capacity. Certain family members and most staff, however, played along with resident-assigned roles. A Parkview worker, for instance, described “being what” residents “need” her “to be at that moment,” including someone’s daughter. In all communities, we observed residents believing that certain staff members were “relatives” and “good friends” or had long-standing family connections. Care partners tended not to correct these misconceptions viewing them signs of “trust” that made residents “receptive to care.”

Care partners who joined in residents’ realities perceived that doing so not only minimized conflict, but also enhanced relationships, interactions, and person-centered care. At Oakwood Forest, a care worker described Hugh, a retired executive, and the significance of engaging in his reality:

If you want to communicate with Hugh, you are his assistant. He would tell you he has a meeting; you just tell him that you’ll schedule that for him. You’ll go onto your next conversation. If you wanted to lead him your way, you’d just have to be his assistant. He would tell me, “I have a meeting today. Is it going to be here?” I’d be like, “Let me call in and find out for you and I’ll come back to you, okay. Can you take your mediation now?” He would be like, “Okay, I’ll take that. What do you want me to do?”

Joining meant stepping partly or fully into a given reality and could involve convoy member collaborations. A handful of residents, all women, for instance, cared for and had meaningful relationships with dolls, stuffed animals, or robotic pets. Part of their daily lives and lived experiences, these relationships were accepted and recognized by care convoy members who collaborated to join in on these realities. At Holly House, for example, Eileen carried Nelson, a doll, with her throughout the day. She shared meals with Nelson and constantly engaged in conversations with others about his wellbeing. Eileen’s entire convoy accepted Eileen’s reality and joined in on an ongoing basis by helping to care for Nelson by cleaning, changing, and even babysitting; her daughter noted, “Everybody says they’ll take care of Nelson.”

Some care partners also emphasized the importance of “playing along” when residents’ realities created fear, distress, or anxiety. At Meyer House, a care worker provided an example of her response when a resident says, “My purse has been stolen”:

You follow suit. “Oh, my gosh, your purse has been stolen. Do you know when you last had that?” You listen to whatever it is they’re saying, and you go into their world … and let them know that it’s a high priority. “We’ll get to the bottom of it,” and that way, they know they have someone that they can trust who heard what they said.

Another noted, “You go with it. I mean, if it’s a scary situation, it’s about reassuring too. That’s where building that rapport comes in and letting ’em know, Hey. I know this is a little difficult. I know you, but we’re okay right now.”

Holly House’s engagement director explained that joining required taking the resident’s perspective and understanding what brings them comfort. She noted, “If I feel better knowing that I’m in a hotel, then that’s a nice place to be. I just let that go. I just let them believe where they feel comfortable.” Oakwood Forest’s care coordinator also provided a common rationale for going “along with their reality,” by noting that correcting “disturbs” and “upsets their reality,” which can make residents “angry” and create “conflict.”

Engaging involved collaborating with residents, seeing their realities, and understanding their emotions. A Rosie’s Place staff member discussed the importance of “play[ing] along” with residents who believed they were visiting or going somewhere. She explained, “I say, ‘Oh, where are you going?’ She’ll say, ‘On a trip.’ I said, ‘When are you going?’ She said, ‘Pretty soon. I’m sorry to leave you.’ I’d say, ‘That’s okay. Don’t worry.’” When asked what advice she would give, the daughter of an Oakwood Forest resident said, “Their reality is different than your reality; try to see. You don’t have to always agree with them, but you don’t have to argue with them.” The overwhelming consensus among care partners who joined resident realities, including Lakeshore’s care director, felt that doing so was acceptable and under the right circumstances the best way to deal with confusion, “As long as it’s not harming them, harming you, or harming other residents.”

Discussion

Most AL residents with dementia in the study experienced some version of differing realities. The four approaches of our sensitizing framework advanced the identification of strategies (ignoring, dismissing, correcting, redirecting, and joining) commonly used by care partners to manage differing realities. While each strategy, at least sometimes, helped care partners manage interactions, ignoring and dismissing most often left people living with dementia frustrated or unsettled. The other strategies produced the best outcomes when care partners drew on their knowledge of the individual and demonstrated skills such as collaboration, adaption, and relationship-centering (building trust, expressing empathy, validating emotions). To better understand these strategies for realty management, we also recognize the heterogeneity of dementia presentation, the context and complexities of care relationships, and ethical considerations surrounding autonomy and personhood.

AL resident dementia diagnoses and engagement with reality varied widely in this study. Most of our sample experienced some level of confusion. Yet, each interaction may present differently due to cause of dementia (see Arias, 2021), comorbidities, life experiences, and where they are in the moment. Recognizing heterogeneity highlights a need to develop communication, collaboration, and improvisational competencies to support care partner capacity for navigating differing realities (Kemp et al., 2023, 2024; Morgan et al., 2024). In practice, we need to understand the lived experiences of the person living with dementia and their reality and the context and complexity of care interactions. We found that there is no singular approach that care partners can adopt consistently for all individuals living with dementia. Instead, we show how certain strategies can be used depending on the context and timing of the interaction and the person. Flexibility, adaptability, and empathy are essential; responding is a process.

Previous research demonstrates the importance of knowing the individual living with dementia and their values (Fazio et al., 2018; Kemp et al., 2021), in addition to those of their family members, to appropriately engage in reality management. For example, if a care partner redirects a resident involving deception, ideally, the deception would fit their already-accepted reality. Several studies, including those by Casey et al. (2020) and James and Caiazza (2018), show that formal and informal care partners consider it important to know the person. Care partners generally agree that there is a time and place for the use of deception while caring for an individual living with dementia, yet there are also no conclusive answers as to what way is best. Other research, including Blum’s (1994), identified family care partners strategies. Our study extends this work to consider the context of daily life and care interactions. We posit that some strategies are more helpful for improving the quality of life and quality of care (Burgess et al., 2022) for people living with dementia while also reducing care partner burden and stress.

Although most care interactions are dyadic, providing care requires collaboration and communication within a care convoy, including formal and informal care partners (Kemp et al., 2013). Within a care convoy, people have varied, and potentially conflicting, approaches and capacity to manage differing realities. One’s engagement capacity is shaped by training, previous life experiences, and knowing the person (Kemp et al., 2023). Having a shared understanding of reality management across the convoy is important for navigating successful care. When care convoy members adopt different strategies from one another, it can cause distress for the person living with dementia. This finding reinforces the importance of convoy collaboration, consensus, and communication (see Kemp et al., 2018). Specifically, family members and friends as well as volunteers, and those paid to support persons living with dementia, should share information and whenever possible, including during care conferences, and collaborate to identify and use successful strategies.

Overall, these findings make it difficult to fully support either reality orientation or validation therapy tenets. Within the existing literature (Arias, 2021; Dresser, 2021) and our own research, care partners often choose sides between never lying or deceiving (reality orientation) or flexibility with the truth (validation therapy), treating them as a dichotomy or sometimes as a hierarchy from most to least acceptable (see Dresser, 2021). Our findings, however, illustrate these are two ends of a continuum of reality management that care partners move between depending on the person, care context, and care convoy composition. Depending on one’s background, life experiences, culture, or training, some think deception is wrong in all circumstances. Others find that some redirection/deception is acceptable and appropriate to ease stress during care interactions. Our findings go beyond the ethical and legal debates about what is right and wrong when approaching the lived reality of a person living with dementia (Arias, 2021; Dresser, 2021) by recognizing the fluidity of experiences and their personhood. Our work reinforces the need to recognize and respect an individual’s values, preferences, identity, history, and lived experiences in responding to their realities.

Our study has numerous strengths beginning with the breadth and depth of data, multiple viewpoints, inclusion of residents living with dementia and their care partners, and emphasis on daily life and capturing heterogeneous experiences. Our research involved residents diverse in sociodemographic characteristics, dementia diagnoses, and reality experiences living in a range of sites. Our data were collected over time using multiple strategies by a diverse interdisciplinary team. Nevertheless, our analysis is limited to data gathered from a small number of sites located in a single geographic region. Larger-scale work involving greater social and cultural diversity among participants and settings could build upon and extend our work.

This analysis reinforces the need for skill development and competencies-based training for all types of care partners from family and friends to health care workers, members of the long-term care workforce, and anyone caring for persons living with dementia, regardless of setting. Elsewhere (see Kemp et al., 2024), we note consistencies between our study’s findings and the Georgia and Related Dementia’s Collaborative’s (GARD, 2016), “Competency Guide for Dementia Care.” Analysis of care partner responses reinforces the value of meeting people where they are, not arguing, being empathetic, and communication in the development of positive care interactions. Skills skill statements such as, “Recognizes that adjustment in the ways of acting and interacting with people living with dementia is needed while meeting their needs” and “Understands and assesses the needs of the person with dementia by getting in their shoes” (GARD, 2016, pp. 10, 11) resonate with our findings.

The present analysis further reinforces our previous work demonstrating the potential value of improv training for care partners (Kemp et al., 2024). Improv training among medical and health care professionals and students, for example, has been found to enhance empathy, flexibility, collaboration, and listening skills (Gao et al., 2019). Our work on “reality management” can and has been used to inform the development of care partner training (see Improving through Improv). Collectively, study findings, for example, provide evidence that informs an ongoing collaboration between improv educators/artists, clinicians, gerontological educators, and researchers on the development of presentations and workshops aimed at the geriatric workforce (see Georgia Gear) as well as programming and pilot testing among family and friends (see Emory's Center for Caregiving Mastery).

Managing differing realities can be complex and nuanced. Findings call for additional research and investigation around ethical decision-making particularly around the importance of truth-telling and how that differs based on an individual’s (resident or care partner) biography, culture, and preferences (Kemp et al., 2022, 2024). Additional training, communication, and collaboration around reality management could improve the quality of life and care for individuals living with dementia in AL settings as well as reduce stress and care partner burden for those who provide care. Alongside the search for a cure, additional research, including but not limited to, intervention development and testing, is needed to enhance the lives of persons living with dementia and their care partners. Care partners’ responses to dementia-related confusion can be consequential to the quality of life and care of people living with dementia, including engagement in meaningful activities, and can shape the experiences of all care convoy members.

Funding

This work was supported by the National Institute on Aging (NIA) at the National Institutes of Health (NIH) (R01AG062310 to C.L. Kemp) and assisted in part by a developmental grant to C.L. Kemp from the NIA Roybal Center for Dementia Caregiving Mastery at Emory University (P30AG064200, Project Co-Directors, Drs. Kenneth Hepburn and M. M. Perkins) and by Georgia Gear, which is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) (U1QHP33070, Project Director: Dr. Theodore Johnson II). Additional support comes from the NIA (RF1AG069114/R01AG069114 to M.M. Perkins).The contents are solely the responsibility of the authors and do not necessarily represent the official views of, nor an endorsement, by NIA, NIH, HRSA, HHS, or the U.S. Government.

Conflict of Interest

None.

Data Availability

In compliance with Institutional Review Board restrictions and the confidentiality of study participants, we are unable to make our dataset available to other researchers. The study reported in the manuscript was not preregistered.

Acknowledgments

We thank all who participated, shared their experiences, and gave generously of their time. We are grateful to Fayron R. Epps, Andrea M. Hill, Pamela R. Manley, Stephen Duong, Joy Ciofi, Joy Dillard Appel, Anastasia Grosheva, Ginger Heidbreder, Jasmine Sease, Anna Lisa Baidoo, Chien Yueh Chien, April Spring Wood, Dottie Mitchell, Margenta Freeman, Austin William Smith, Fiona Li, Cyndy Roberts, Divya Mukesh Patel, Kirsten Magda, Erreannau Zellous, Anuja Yogi, and Josephine Misaro for their important contributions to the “ME study.” As always, we thank Mary M. Ball, Carole Hollingsworth, and Patrick J. Doyle. We also thank Kim McRae, Nancy Kriseman, Amanda Lee Williams, Kenneth Hepburn, Theodore Johnson III, and Travis Sharp. IRB Approvals: Advarra: Pro00029867; Georgia State University: H19198; Emory University: IRB00108144.

Author Contributions

Candace Kemp (Conceptualization [lead], Data curation [lead], Formal analysis [lead], Funding acquisition [lead], Investigation [lead], Methodology [lead], Project administration [lead], Resources [lead], Writing—original draft [lead]), Emerald Anglin (Data curation [supporting], Investigation [supporting], Project administration [supporting], Software [supporting], Writing—review & editing [supporting]), Jennifer Morgan (Conceptualization [supporting], Data curation [supporting], Formal analysis [supporting], Funding acquisition [supporting], Investigation [supporting], Methodology [supporting], Supervision [supporting], Writing—review & editing [supporting]), Molly Perkins (Conceptualization [supporting], Formal analysis [supporting], Funding acquisition [supporting], Investigation [supporting], Methodology [supporting], Project administration [supporting], Supervision [supporting], Writing—review & editing [supporting]), Elisabeth Burgess (Conceptualization [supporting], Funding acquisition [supporting], Writing—review & editing [supporting]), and Alexis Bender (Conceptualization [supporting], Data curation [supporting], Formal analysis [supporting], Funding acquisition [supporting], Investigation [supporting], Methodology [supporting], Project administration [supporting], Software [supporting], Supervision [supporting], Writing—review & editing [supporting])

References