“The Sun Came Up Because You Got Here…”: A Qualitative Exploration of Person-Centered Care Strategies Used by Adult Day Care Centers to Manage Behavioral and Psychological Symptoms of Dementia

Abstract

In order to reduce care partner strain and support aging in place for people living with Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRD), adult day centers (ADCs) must manage behavioral and psychological symptoms of dementia (BPSD). The purpose of this paper is to identify person-centered care strategies used by center staff to manage BPSD. Six focus groups with center staff (n = 31) were conducted. Data were analyzed using directed content analysis guided by Kitwood’s conceptual approach to cultivating personhood in dementia care. Themes were identified and organized within Kitwood’s framework. The results demonstrate that staff incorporate evidence-based person-centered approaches to AD/ADRD care that align with Kitwood’s principles of comfort, attachment, inclusion, and identity. Staff individualize their approach to people with AD/ADRD within a group setting. They monitor, engage, socially stimulate, and, when needed, de-stimulate them. Centers are flexible social environments with underrecognized expertise managing BPSD using person-centered approaches.

Keywords

adult day centers dementia person-centered care behavioral and psychological symptoms of dementia adult day care background

Older adults prefer to remain in their communities as they age (Farber et al., 2011). Behavioral and psychological symptoms of dementia (BPSD) are a key challenge to honoring this preference among people living with Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRD) (Porter et al., 2016). The International Psychogeriatric Association defines BPSD as “symptoms of disturbed perception, thought content, mood, and behavior,” which affect up to 90% of people living with AD/ADRD for the duration of their illness (Finkel et al., 1996: p. 798).¹ BPSD include agitation, aggression, depression, anxiety, wandering (Bessey & Walaszek, 2019). People with BPSD experience emotional distress, functional impairment, frequent hospitalizations, increased risk of abuse and neglect, and decreased survival (Bessey & Walaszek, 2019).

BPSD also affect care partners, the majority of whom are unpaid family or friends. Symptoms such as hallucinations, delusions, and agitation are often more stressful to care partners than cognitive and functional loss associated with AD/ADRD (Ornstein & Gaugler, 2012). BPSD increase stress, depression, and financial hardship among care partners and contribute to the placement of people living with AD/ADRD into skilled nursing facilities (Bessey & Walaszek, 2019; Femia et al., 2007).

Adult day centers (ADCs) are one source of community-based care that support aging in place and offer respite to care partners (McCann et al., 2005). ADCs in the United States support the needs of nearly 200,000 people living with AD/ADRD, through health monitoring, socialization opportunities, and assistance with activities of daily living (Oliver & Foster, 2013). ADCs are staffed by interdisciplinary professionals (e.g., registered nurses, social workers, and occupational therapists) who provide adults with health and social care for up to 8 hours per day (Oliver & Foster, 2013; Sadarangani & Murali, 2018). Long-term, consistent use of ADCs can reduce care partners’ psychological distress and support their ability to continue caregiving (Gaugler et al., 2003a, 2003b). Cohen-Mansfield and colleagues (1995) estimated that 63% of adults in ADCs with AD/ADRD exhibit BPSD. To the best of our knowledge there is no other up-to-date reference that estimates the percentage of ADC using adults with AD/ADRD that exhibit BPSD, therefore this reference is only an indication of what the current percentage might be. To ensure participants with AD/ADRD can safely attend and remain engaged in ADCs for as long as possible, ADC staff must be able to effectively manage BPSD in the center.

To support the well-being of people living with AD/ADRD, ADC staff leverage relationships with participants and care partners to deliver evidence-based interventions and person-centered care (PCC) (Oliver & Foster, 2013). PCC is a philosophy built around individuals’ needs (Fazio et al., 2018). It requires strong interpersonal relationships between individuals and those involved in their care, including older adults, their care partners, and formal care providers (Fazio et al., 2018). The Alzheimer’s Association identified PCC as an essential component of AD/ADRD care in its 2018 Dementia Care Practice recommendations (Fazio et al., 2018). In this report, the association states that AD/ADRD care should focus on an individual’s unique needs, personal experiences, and strengths rather than on the loss of their abilities (Fazio et al., 2018; Porter et al., 2016). Furthermore, it is recommended that nonpharmacologic psychosocial interventions be used as first-line interventions for BPSD (Tible et al., 2017). Despite ADCs providing care for people with AD/ADRD, the extant literature does not clearly outline the strategies they use to manage participants’ needs, specifically BPSD. Knowledge is lacking on direct interventions used in ADCs to address BPSD among people with AD/ADRD and if or how staff members incorporate PCC into their approaches. As reliance on community-based services grows for people with AD/ADRD, current approaches used by ADCs to manage BPSD must be examined to understand their capacity to support aging in place. Therefore, the purpose of this paper is to identify PCC strategies used by ADC staff to manage BPSD and cultivate personhood in AD/ADRD care.

Theoretical Framework

Thomas Kitwood (1997) defined personhood as “a standing or status that is bestowed upon one human being, by others, implying recognition, respect and trust” (p. 8). He used the term “person-centered care” as an umbrella term for approaches to working with people living with AD/ADRD that center on developing strong interpersonal relationships aimed at cultivating personhood (Kitwood, 1988). Our study was guided by Kitwood’s (1997) conceptual approach to cultivating personhood in AD/ADRD care. PCC principles focus on the multidimensional person receiving care, as opposed to the needs and efficiency of the staff caring for them. This creates a standard against which staff within programs serving people living with AD/ADRD (e.g., ADCs) can evaluate themselves through the lens of the people they serve.

In Kitwood’s (1997) conceptual approach, PCC addresses five essential psychological needs: comfort—the feeling of trust that comes from others; attachment—security and finding familiarity in unusual places; inclusion—being involved in others’ lives; occupation—being involved in the processes of normal life; and identity—what distinguishes a person from others and makes them unique (Mitchell & Agnelli, 2015). All humans have these needs, but they are more likely to be heightened in people living with AD/ADRD, who often cannot advocate on their own behalf and whose personal sense of vulnerability is amplified by impaired cognition. Given the growing reliance on ADCs for caring for people living with AD/ADRD, we classify the strategies staff in these settings use to manage BPSD according to Kitwood’s framework, and we evaluate the degree to which they reflect PCC.

Methods

Design, Sampling, and Data Collection

We designed an exploratory descriptive qualitative study to enable in-depth insights into the delivery of PCC in ADCs. For context, in California, ADCs offer an alternative to nursing homes for those who do not need 24-hour skilled nursing care. ADCs are designed to help chronically ill and/or functionally impaired people stay mentally and physically active, reduce isolation, and prevent functional decline. People typically attend ADCs two to five times weekly, depending on need. Program hours typically range from four to 8 hours per day. Services vary from center to center but may include therapeutic activities (e.g., art) health monitoring, nutrition, physical, and occupational therapy.

We leveraged the support of the California Association for Adult Day Services to identify interdisciplinary participant-facing staff in ADCs across California. The Association’s leadership disseminated study information to ADC managers via email and asked them to reach out to the study team to participate. A member of the research team scheduled focus group via Zoom with interested participants. We purposefully sampled participants who met our inclusion criteria which consisted of interdisciplinary ADC staff. To qualify individuals had to be employed by ADCs and have job responsibilities that involve frequent direct interactions with program participants (e.g., registered nurses, social workers, activity staff). There were no minimum experience criteria. Employees whose primary role were non-participant facing administrative roles (e.g., billing) were excluded. ADC staff at six centers participated in a virtual focus group with their colleagues lasting, on average, 90-minutes. Sample size parameters are consistent with Guest et al. (2017) who suggest major themes are generally established after three to six focus groups. Prior to focus groups, participants provided consent electronically. Focus groups were moderated by the principal investigator, who is an experienced qualitative researcher with backgrounds in nursing and anthropology. The moderator posed a series of questions using a semi-structured interview guide and facilitated interactions between members by interjecting transitional questions and summaries while trying not to interfere with the dialogue. The members of the study team collaboratively developed the interview guide used to conduct the focus groups and interviews and refined those guides with input from partners at the California Association for Adult Day Services to ensure they were coherent and comprehensive. Sample questions included “Tell us about the needs of your participants with dementia”; “What are some of the most challenging behaviors your clients experience?” and “What strategies do you employ to help manage these behaviors?” Prior to commencing the focus group, ground rules around respectful discussion, such as to speak individually and not over one another, were developed and explained to participants. Assurances around privacy and confidentiality were reiterated and participants had the opportunity to ask questions. Members of the focus groups received a $200 gift card for their participation. During focus groups, the principal investigator continuously reviewed interview notes, supporting a reflexive process that allowed for the flexibility of emerging new questions. To ensure rigor, an audit trail was developed to document the rationale for methodological changes using notes during the interview and analysis process such as when a unique follow-up question was posed to a specific participant based on his/her previous response. Institutional Review Board approval for this study was provided by the University Committee on Activities Involving Human Subjects at New York University.

Data Analysis

The focus groups were recorded and professionally transcribed after participant identifiers were removed. Dedoose, a Web-based application for qualitative data analysis and mixed-methods research, was used to code and manage the data. Two master’s-prepared coders who had previous experience with qualitative coding coded the transcripts individually first, then met regularly to review their coding. To ensure the codes’ reliability and consistency, a third coder independently coded 20% of the transcripts.

Deidentified transcripts were coded deductively using directed content analysis (Hsieh & Shannon, 2005). In this approach, analysis starts with a theory as guidance for initial codes. The research team generated a codebook a priori based on Kitwood’s framework as a coding scheme. Coders applied codes to excerpts that described/summarized them. Any texts that could not be categorized within the codebook were discussed during team meetings to determine if a new category or code needed to be defined. The codebook was continuously updated, reflecting an iterative process. Disagreements among researchers in coding were discussed to determine whether the codes should be adapted or changed.

Codes were grouped across categories, enabling identification of key themes based on Kitwood’s domains. Each strategy ADC staff reported using to manage BPSD was analyzed to understand which components of Kitwood’s framework it reflected, if any. Saturation was achieved when no new themes emerged from analysis and occurred by analysis of the sixth transcript. Results of the directed content analysis were embedded within a matrix guided by Kitwood’s domains.

Results

Between May and July 2021, we conducted six focus groups with ADC staff across California (n = 31, average 5.2 per group). Table 1 presents participant demographic information. Staff members in our sample represented a range of disciplines and were highly experienced in the ADC setting; over half (51.6%) had more than 10 years of experience. The vast majority (61.3%) were nurses, social workers, or program directors. Supplementary Figure 1 represents confidence levels of ADC staff in caring for persons living with AD/ADRD. They reported a high degree of confidence in recognizing and addressing needs of people with AD/ADRD—respectively, 87.9% and 74.2% of the ADC staff claimed to be fairly or completely confident in their ability to care for people living with AD/ADRD. Approximately 97% had received formal training in caring for people living with AD/ADRD.

Table 1.

Demographic Characteristics of Adult Day Center Staff (N = 31).

Characteristics	N (%)	Characteristics	N (%)
Gender
Female	30 (96.77)	Male	1 (3.23)
Race
White	17 (54.84)	Asian	2 (6.45)
Black or African American	4 (12.90)	Mixed race or other	8 (25.81)
Ethnicity
Hispanic or Latino	8 (25.81)	Not Hispanic or Latino	23 (74.19)
Age (years)
≤29	1 (3.23)	50–59	7 (22.58)
30–39	5 (16.13)	60–69	5 (16.13)
40–49	9 (29.03)	≥70	2 (6.45)
		Prefer Not to Answer	2 (6.45)
How many years have you been working in ADC programs
<1 year	1 (3.23)	11–20 years	13 (41.94)
1–4 years	7 (22.58)	>20 years	3 (9.68)
5–10 years	7 (22.58)
Current role at Adult Day Center
Nurse	7 (22.58)	Program Assistant	4 (12.90)
Social Worker	5 (16.13)	Activities Coordinator	3 (9.68)
Program Director	7 (22.58)	Therapy Aide	1 (3.23)
Occupational Therapist	2 (6.45)	Administrative Assistant	1 (3.23)
		Program Operations Manager	1 (3.23)
Have you received any training in how to work with/care for PLWD
Yes	30 (96.77)	Prefer not to Answer	1 (3.23)

Identification of PCC Strategies

Table 2 summarizes the PCC strategies used and their respective Kitwood domains. Due to the nature of focus groups, we were not able to directly attribute quotes to specific participants without compromising anonymity. Instead, we have attributed each quote to its respective group using a deidentified code in both the tables and text.

Table 2.

Person-Centered Strategies used by Adult Day Centers to Manage Behavioral and Psychological Symptoms of Dementia Based on Kitwood Framework.

Kitwood Domain	PCC Strategy	Example
Comfort: A feeling of trust that comes from others	Therapeutic Communication	If they are more quiet than normal, sometimes, their family members don’t pay attention to them as much as we do, I think, in here. We make a one-on-one relationship with them, and we talk about things. Sometimes, it’s sad because their kids fighting or things like that, and they are open to let us know, so we see that way. Then we’ll talk, like we see who they get more along with the staff because normally, they have ones they’re more attached to, and we make sure they talk to the person. Also, we ask them if they need to talk to the social worker. We just take them into their room, and then we’ll talk about with them. ADC_EDAY
	De-escalation and redirection	Well, we have had people with a certain type of dementia with a history of mental illness. Those are very challenging because of behavior, paranoia, higher paranoia and delusional. That has been the most challenging, but that’s something to figure out what will work to redirect them and de-escalate their anxiety and something simple, something that they enjoy. Music or they like to do puzzles or just have a conversation with them so that that will alleviate their anxiety and feel that we care and that we love you and redirect the negativity and try to focus on something positive that will make them redirect and think something more positive than negative. ADC_CIA
	Provision of comforting, familiar objects	We had a woman who had sheer hallucinations, so nursing was working with the physicians and the social worker was working with the families and we were working as the activity team to try and find things that would engage her or comfort her. Dolls, stuffed animals were something that we used. For different people, it’s different things and it’s really figuring out...This [other] guy was a pilot. We have a book that has pictures of airplanes that we know we sit in front of him at the end of lunch. ADC_CIA
Attachment: Security and finding familiarity in unusual places
	“Open-air” environment	Some of the challenges, of course, exit seeking. We do have a gated back area that is locked, so they have a safe environment to walk around in the backyard. We have a beautiful garden. It looks like a park, so the environment is comforting—inside too. I think one of the biggest things we also hear from people coming on tours is how open and airy and pleasant our setting is, as opposed to industrial type building or boxy buildings. I think that open-air concept helps create a nice environment. ADC_ACA
	Sensory spa (music, massage, aroma therapy)	We’ve tried different things in the past, like a sensory spa where those groups, especially in the afternoons—the sundowning, increased agitation when people start going home—doing that type of aroma therapy, massage, music…At the end of the day, they use headphones, and they have their own playlist, so they’ll listen to the music which they love. Reminding of the client that ……... mentioned earlier, we evaluated her during the pandemic, and I asked her what her music preferences were, and she said she was a Dead head, a Grateful Dead—in my day I was a Dead head. I’m like, “Okay, we’ll add that to your playlist.” ADC_OG
	Identifying triggers and removing excess stimuli	Just mentioning just the stimulation, just decreasing the environmental stimulation. We used to come through this one door, but at the end of the day the clients were very anxious because every time the door opened everybody thought the ride was for them, and everybody would—the anxiety would be high. We no longer go through that door in the afternoon around when people are starting to go home. ADC_OG
	Familiar friends	...in order to be successful, they try to create a room each day where the participants get along, where they build a relationship...They don’t remember their name, but when they come inside, they see that familiar face and then—and they feel safe and they feel like this person looks familiar and I’m okay to be here. I think there’re certain participants that create a relationship, like there’s these three Spanish-speaking participants that every time they come together, it’s like they’re BFFs. They have that conversation, whatever the conversation is that they have over and over and over, but they get it. ADC_CIA
	Consistent and familiar routine	You’re looking for all these things that don’t look right because they really thrive on their routine. You really get to know them when they have that set routine. It’s comforting to them. They can’t tell you that, but when you throw their routine off, you can tell. It takes a while to settle them down a little bit by giving something familiar to their routine. ADC_ACA
	Consistent and familiar staffing	From the recreation department, I do handholding. I do memory—I don’t know, by smell and music, so sensory training or sensory memory stuff. They need a different level of care than the rest of the clients, so they usually have a care partner assigned to them personally that is supposed to do one-on-one. Also, we used to have some grandparents that would come and assist. They would also do one-on-ones with some of the dementia clients. ADC_OG
Inclusion: Being involved in the lives of others	Group activities that are widely accessible	He was in the later stage, but he would sit there, eat, listen to music, sing, clap, and participate in whatever way they could, even if it’s, maybe, not knowing every word. Give them an instrument, and they would get along. You knew it brought them joy… ADC_ACA
	Intergenerational programming	We do have activities throughout the program day where the children and the seniors interact. We have children from six weeks old to six years old, and every age group has at least one activity per day with the seniors. It is a choice; some of the participants that we have here they will do it all day long if they can... ADC_OG
	Fostering a welcoming culture	We greet them at the bus. We walk them in. They are made to feel welcome from the moment they’re off that bus. Everyone is made to feel like this place is blossoming and happy. The sun came up because you got here. ADC_EDAY
	Making accommodations that minimize disruption to others	We had one woman...who was constantly doing this [thumping] all day long, which is very distracting for other people with dementia. This is a noise and it’s a physical action and it was something that she could not stop doing. What we found was that we could lay her blankets on her lap and it would make the motion less because she was hitting something sooner and it cushioned the sound and we were able to keep her. ADC_CIA
Occupation: Being involved in the processes of normal life	Supporting engagement in routine tasks	She was constantly moving around, walking around, walking through the center, trying to leave the center. She had pretty advanced dementia/Alzheimer’s, but she was also in very—fairly good physical health up until the end of her life. That presents its own set of problems because physically, she can do most things, but mentally just unable to really understand what’s going on around her. She needed help with ADLs and IADLs of course, but also physically, she could get up and walk away if she didn’t want to listen to you or attempt to leave the center or fight you and being incredibly strong when she would get agitated, very easily to be agitated then. We had to address the fact that she was always trying to abscond or leave and then also that she would become very aggressive and confrontational, sometimes even violent when we would try to get her to stop or do things. It became really hard on us at the center because we always had to have somebody one-on-one with her or we had to distract her constantly. That was putting her in different locations in the center, giving her something new to do, having her fold clothes or having her take clothes in and out of the basket. Not even really doing anything, but just being able to physically pick up a basket, walk and carry a basket somewhere else and then say, “Oh, Miss So-and-so, come back and give me those clothes. Let’s go put ‘em in the dryer.” Constantly tryin’ to keep her mind distracted, but also tryin’ to have her work her body, too, because she still had so much energy and life. ADC_OG
	Visual cues, “buddy” system to facilitate participation in tasks	Another need that is met by the staff is that observation that then leads to how they choreograph that day so that they can get the best experience from the social interaction, from the exercise because somebody may be sitting next to somebody who exercises really well and all they need is that visual cue to see what they’re doing and they can participate along with them. ADC_CIA
	Maximizing Independence through personalized level of assistance	“Even though [a PLWD] needed help going to the bathroom…there’s an independence of her telling us, “I need to go to the bathroom,” and us being able to take her …when she needed to go.” ADC_EDAY
Identity: What distinguishes a person from others and makes them unique	Honoring preferences	Conveying that idea that we want to respect you and your wishes and what you like to do. If you like to sit in the chair in the sun and read, we try to do that if that’s what you prefer to do. The change to person-centered care from a few years ago to now, the understanding is so much better with our staff so that that’s—you don’t have to make everybody play bingo. You don’t have to make everybody do exercises. It’s what you enjoy. We’re here to help you. If you enjoy sitting and reading a magazine, that’s what you’re gonna do. Reassuring them that they are not gonna be forced to do anything they don’t want to do. ADC_EDAY
	Conducting detailed social history to identify interests	Once we see the difficult participants, like with the agitation, restlessness, so we tend to like, okay, we see what they like, and we try to engage them and talk to them from their previous life, so they say, “Oh, you know me,” so they get to relax more, less agitation we see. Yeah. The participants with dementia, with the most challenges, if you get to know them, and we gather the most important information, we get to calm them a little bit more. If we talk about their families, their names, and all that, it tends to work. ADC_EDAY
	Conducting participant observation	When we talk about person-centered planning, meaning we’re really looking at what a person’s needs are, when they’re in the general program, they’re telling us this is the definition of what I want. … There’s all this work with us on choreographing their personal plan. What happens in the Center is that person-centered planning comes from observing and interacting. ADC_CIA

Comfort

The cornerstone of PCC in ADCs was developing comfort, meaning that people living with AD/ADRD felt that the staff at the ADCs were trustworthy. One staff member characterized the approach to comfort as making people living with dementia “feel that we care, and that we love you, and redirect the negativity” (ADC_CIA). Cultivating supportive relationships was essential to mitigating key BPSD such as depression, paranoia, and anxiety. Staff used three concrete strategies to foster comfort: therapeutic communication; de-escalation and redirection; and the provision of comforting, familiar objects.

To cultivate therapeutic relationships, staff (particularly social workers) took time to build personal relationships with people living with AD/ADRD. One stated, “We make a one-on-one relationship…and we talk about things” (ADC_EDAY). The staff were highly attentive and quick to recognize depressive symptoms (e.g., being “more quiet than normal”) (ADC_EDAY). Participants also recognized that people living with AD/ADRD were often “more attached to” some staff members than they were others (ADC_EDAY). ADC staff then leveraged these personal relationships to engage in therapeutic communication and discuss emotional concerns of people living with AD/ADRD. One participant described gently holding the hand of one person living with AD/ADRD and facilitating reminiscence by engaging them in conversations about past events, family members, or topics of interest. ADC staff “get to know what [their clients] like. . . what they used to do or what was their profession. Sometimes, that helps a lot to calm them down” (ADC_EDAY). One staff member described the importance of developing a relationship with her clients living with AD/ADRD, saying, “…they develop this communication with us … that let us get into their mind, into their world, into their feelings” (ADC_EDAY).

De-escalation and redirection were key strategies to help comfort individuals experiencing paranoia and/or delusions. While ADC staff reported that these were among the most challenging BPSD to manage, de-escalation and redirection were effective at reducing the anxiety underlying these behaviors. Staff quickly identify and intervene at the earliest presentation of BPSD such as paranoia or agitation. They then leveraged their in-depth knowledge of people living with AD/ADRD, acquired through detailed social histories and participant observation, to identify simple interventions such as music, puzzles, or conversations, to redirect their thoughts and attention and buffer anxiety.

Another approach to manage anxiety to prevent it from escalating into agitation or violent behaviors was providing comforting, objects. The ADCs used a team-based strategy, leveraging the expertise of interdisciplinary staff and information provided by family members to identify things that would engage or comfort them. Objects might reflect something in an individual’s personal or professional history. The staff clarified that comforting objects are highly individualized, noting that “for different people, it’s different things” (ADC_CIA). One notable example was a person living with AD/ADRD who was an airline pilot before he retired. To reduce his anxiety toward the end of the day, staff would offer him a book with pictures of airplanes at the end of his meal.

Attachment

Creating a secure and familiar environment at the ADC, which Kitwood (1997) refers to as attachment, helped mitigate symptoms of anxiety, exit-seeking, and sundowning. PCC strategies for promoting attachment included providing an open-air environment, reducing stimuli, and creating a spa-like atmosphere. However, the most essential building blocks of attachment were providing people living with AD/ADRD with a consistent routine and staffing, and familiar friends.

Many centers benefited from using enclosed “open-air” backyard spaces (ADC_ACA). One center designed its outdoor space to look like a neighborhood park, where people living with AD/ADRD could roam freely and not feel confined. This helped reduce exit-seeking behaviors and provided people living with AD/ADRD a sense of independence in the ADC, without compromising safety.

In addition, ADCs focused on reducing effects of sundowning and heightened agitation toward the end of program day through aromatherapy, massages, and music. Participants were also conscious of environmental triggers and excess stimuli that led to BPSD. For example, at one ADC, people living with AD/ADRD assumed that their ride has arrived each time a certain door opened, leading to heightened anxiety. This prompted staff members to “no longer go through that door in the afternoon around when people are starting to go home” (ADC_OG). Music was also essential to reducing agitation. ADCs provided headphones and individualized playlists that reflected musical preference. One person living with AD/ADRD told a staff member that she was a “deadhead, a [fan of the] Grateful Dead,” so music from that artist was included in their playlist (ADC_OG).

ADC staff promoted security and familiarity by maintaining consistent routine and staffing and facilitating relationships with familiar peers. One staff member stated, “You really get to know them when they have that set routine. It’s comforting to them” (ADC_ACA). However, even the slightest disruptions in routine often spurred BPSD: “When you throw their routine off, you can tell. It takes a while to settle them down a little bit by giving something familiar to their routine” (ADC_ACA). Placing people living with AD/ADRD—even those with significant memory impairment—with the same peers daily created a sense of attachment. One staff member described creating “a room each day where participants get along, where they build a relationship. . . they see that familiar face. . . and they feel safe. . . like, this person looks familiar. . .I’m okay to be here” (ADC_CIA).

Inclusion

Inclusion, defined as being in others’ lives, was the hallmark of the ADC experience. Creating an inclusive environment was particularly impactful on depressive symptoms, anxiety, and restlessness. Strategies to facilitate inclusion included fostering a welcoming culture, intergenerational programming, and facilitating group activities that were widely accessible to all, regardless of functional or cognitive status. It also meant making creative accommodations for individuals whose behaviors were disruptive to others, while allowing them to remain in a group setting.

The start of the day represented a critical opportunity to implement PCC strategies for inclusion. The first was creating a welcoming culture to buffer any resistance, anxiety, or hesitation about transitioning into the ADC. As one staff member said, “We walk them in. They are made to feel welcome from the moment they’re off that bus. Everyone is made to feel like this place is blossoming and happy. The sun came up because you got here” (ADC_EDAY). Staff members then designed group activities that engaged individuals regardless of physical or cognitive impairment. Group music was one example. One person living with AD/ADRD who “was in the later stage [of AD/ADRD]. . . would sit there, eat, listen to music, sing, clap, and participate in whatever way they could, even if it’s, maybe, not knowing every word” (ADC_ACA). An ADC that was co-located with a children’s daycare offered intergenerational programming, in which children and older adults could participate in activities together. Sometimes, however, creating an inclusive environment was challenged by people living with AD/ADRD who presented with BPSD that were highly disruptive to others. ADC staff were creatively designed personalized accommodations to minimize how these behaviors affected others to enable that person to remain in the ADC. One example was using a blanket to dampen the noise from one individual’s repetitive motion of hitting her lap.

Occupation

Occupation referred to involving people living with AD/ADRD in processes of normal life. The goal was to do things with people living with AD/ADRD as much as possible, as opposed to do things for them. This provided people living with AD/ADRD with a sense of mastery and control that lessened their frustration, agitation, and apathy. ADC staff focused on personalizing assistance for each person living with AD/ADRD, with a primary focus on encouraging as much independence as possible. This approach was effective in promoting a sense of normalcy with respect to activities of daily living such as toileting. Although timed toileting for people living with AD/ADRD can reduce episodes of incontinence (and simplify staff members’ schedules), this was not universally imposed. For example, one staff member explained, “Even though [a person living with AD/ADRD] needed help going to the bathroom. . . there’s an independence of her telling us, ‘I need to go to the bathroom,’ and us being able to take her. . . when she needed to go” (ADC_EDAY).

Moreover, staff members targeted agitation and aggression but supported engagement through seemingly mundane tasks. One example was channeling the energy of a person who was cognitively but not physically impaired into conducting routine tasks, like putting laundry into a machine. Another system to facilitate occupation was using a buddy system to provide people living with AD/ADRD visual cues to complete tasks and enable participation. One example was facilitating participation in group exercise by seating a person living with AD/ADRD “next to somebody who exercises really well” who could provide a “visual cue” (ADC_CIA).

Identity

Kitwood (1997) defined identity as what distinguishes a person from others and makes them unique. An emphasis on the identity of people living with AD/ADRD was best illustrated by the approach of “choreographing [a] personal plan” for the person living with AD/ADRD (ADC_CIA). ADC staff used three strategies to uncover the identity of people living with AD/ADRD and incorporate it into interventions targeting common BPSD such as anxiety, depression, and apathy: taking a detailed social history, observing participants, and honoring preferences as much as possible. The detailed social history form elicits information about the personal and professional history of people living with AD/ADRD as well as their current hobbies, interests, and life at home. This form, which emphasizes identity, can be used to inform individualized PCC approaches focusing on comfort and attachment. One staff member stated, “…we gather the most important information… to calm them. . .. if we talk about their families, their names…it tends to work” (ADC_EDAY). At the ADC, staff engaged in in-depth observation to identify emotional triggers as well as sources of joy to inform activity planning. Staff honored preference and conveyed wanting “to respect you and your wishes. . .. you don’t have to make everybody play bingo. . .. Reassuring them that they are not gonna be forced to do anything…” (ADC_EDAY).

Discussion

In this study, we identify person-centered strategies ADC staff employ to manage BPSD among people living with AD/ADRD. Our analysis was theoretically grounded in Kitwood’s (1997) framework of PCC for people living with AD/ADRD. This study is unique because it leverages the perspective of an experienced and diverse group of ADC staff who are knowledgeable and trained to care for people living with AD/ADRD but have rarely been consulted in academic literature. In linking their strategies to the components of PCC theory, this work identifies not only which ecopsychosocial (Zeisel et al., 2016) approaches are effective but also concrete examples of how they can be implemented.

ADCs are flexible social environments with underutilized clinical expertise on supporting the care of older adults with BPSD (Parker et al., 2021). According to Lee et al. (2020), person-centered interventions have shown immediate effects on reducing BPSD and improving cognitive function; therefore, health care providers should consider person-centered interventions as crucial components in AD/ADRD care. Our work demonstrates that ADC staff incorporated an evidence-based PCC approach to AD/ADRD care (Fatoni et al., 2020) aligned with Kitwood’s principles of comfort, attachment, inclusion, and identity. Based on the results of the six focus groups, it is evident that ADCs strive to monitor, engage, socially stimulate, and, when needed, de-stimulate people living with AD/ADRD who attend ADCs to manage their BPSD. The PCC strategies utilized by study participants facilitated attachment between the clients and the staff, ensured people living with AD/ADRD were comfortable in the center, and upheld the importance of their identity outside of their AD/ADRD. Plainly stated, in this study, ADC staff were trained, knowledgeable, and knew their clients well. They acted as sentinels and were trained to recognize behavioral decompensation, assess critical AD/ADRD-related behaviors, and address them with ecopsychosocial interventions.

This work has research, practice, and policy implications related to how people living with AD/ADRD, and their care partners use ADCs. From a research standpoint, more research should be conducted in ADC settings. Staff at the centers are well trained, knowledgeable about PCC approaches, and willing to implement interventions with the potential to improve the care trajectory their clients. Interventional studies are needed to evaluate how PCC approaches used in ADC settings affect relevant outcomes such as care partner strain and placement into a skilled nursing facility. Additionally, outcomes relevant to ADC participants and care partners should have primary importance in future research. While clinical outcomes such as hospitalization, healthcare utilization, and ancillary costs within ADCs provide a clinical focus, they are lagging indicators for acute responses to poorly supported caregiving challenges (Almost et al., 2018). Future research should emphasize outcomes relevant to clients and care partners to understand the impact of PCC both in the ADC and any spill-over effects at home. This includes reductions in BPSD, care partner strain, diminished quality of life, and inappropriate use of antipsychotic medications (Kales et al., 2014).

This study’s clinical implications reveal the untapped potential for integrating ADCs into care. Previous research has demonstrated that processes are still siloed within individual ADCs (Dabelko-Schoeny et al., 2020; Zhong et al., 2022), and ADCs are rarely recognized as part of the health care continuum. Centers can help develop care partner toolkits and handbooks to lighten the burden of afterhours caregiving as well as share strategies used by the staff that can be reinforced at home and in other care settings. Team-based discussions among ADC providers, care partners, people living with AD/ADRD, and primary care providers that emphasize PCC strategies for addressing BPSD may provide a web of support closely tied to the client’s current status. This interdisciplinary approach not only is person-centric but also offers the potential for quick responses to problematic AD/ADRD-related behaviors. In addition, homegrown ADC strategies must be disseminated, which may benefit the nearly 150,000 cognitively impaired adults in 4600 ADCs throughout the United States (Aging in Place, 2020; Harris-Kojetin et al., 2016). Standardized ADC approaches may have benefits such as in assessing social and personal history, which are central to PCC.

Policy changes could expand access to care in ADC settings in countries where there is no source universal public coverage for such services. In the United States, for example, ADCs are historically underfunded and underresourced and primarily financed by Medicaid, limiting their use to people living beneath federal poverty guidelines (Anderson et al., 2013). For $60 per day, a person living with AD/ADRD can receive safe, supervised care, which has demonstrated a financial benefit by decreasing acute care seeking and unnecessary healthcare utilization (Brown et al., 2014). Expanding Medicaid eligibility would support care partners who provide financial support for people living with AD/ADRD but cannot afford ADC premiums.

The study is not without limitations. Our sample reflects a convenience sample of ADC staff seeking to engage in research. This may have led to a selection bias toward experienced and highly trained ADC staff, whose responses may not be generalizable to other ADCs in the region, nationally, or internationally. The results are also largely positive with little divergence across the data. While focus groups were designed as “safe spaces” where privacy and confidentiality were of primary importance, the group format may have inhibited participants from speaking openly about aspects of AD/ADRD care that were harder or less acceptable for fear of reprisal. However, the sample did reflect both urban and rural ADCs. Another limitation was bias in determining person-centeredness of ADCs via the opinions and responses of the ADC staff members. Ideally, people living with AD/ADRD who attend ADCs and/or their care partners would be best able to answer these questions. We were also unable to observe staff and participants in person due to COVID-19 pandemic restrictions. Future studies should incorporate perspectives of people in the early stages of AD/ADRD, with BPSD that might not yet be pronounced, and of family care partners of people living with AD/ADRD who attend ADCs, as well as observational techniques.

Conclusion

ADCs in this study incorporate Kitwood’s principles of PCC into their daily practices effectively. ADCs offer comprehensive care that not only engage people living with AD/ADRD, but also provide care partners with respite, offer various types of therapies, and manage BPSD through the interdisciplinary team of staff members at centers. The unique services and programming offered by ADCs facilitate inclusion and attachment. This sits in contrast to other types of long-term care (e.g., home care) that may leave people living with AD/ADRD socially isolated with little to no engagement (Lamm, 2015). ADCs have tremendous value, as does the level of care they offer people living with AD/ADRD; thus, it is imperative that they be better integrated into the care teams of people living with AD/ADRD.

Supplemental Material

Supplemental Material - “The Sun Came Up Because You Got Here…”: A Qualitative Exploration of Person-Centered Care Strategies Used by Adult Day Care Centers to Manage Behavioral and Psychological Symptoms of Dementia

Supplemental Material for “The Sun Came Up Because You Got Here…”: A Qualitative Exploration of Person-Centered Care Strategies Used by Adult Day Care Centers to Manage Behavioral and Psychological Symptoms of Dementia by onelle Boafo, Daniel David, Bei Wu, Abraham A. Brody and Tina Sadarangani in Journal of Applied Gerontology

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by National Institute on Aging (grant no. R21AG069801).

ORCID iDs

Jonelle Boafo

Bei Wu

Tina Sadarangani

Supplemental Material

Supplement material for this article is available in online.

Notes

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