“We feel like a family here”: person-centered outcomes of adult day services use from the voices of people living with dementia and their caregivers

Abstract

Background

As the number of persons living with dementia (PLWD) grows, there is a pressing need for person-centered long-term care solutions that prioritize their experiences. Adult day centers (ADCs) play a critical role in supporting PLWD, yet most research focuses on outcomes relevant to caregivers and payors rather than the voices of those receiving care. This study explores PLWD’s firsthand perspectives on their ADC experiences, using Kitwood’s (1997) person-centered dementia care framework which identifies five key psychological needs: inclusion, attachment, comfort, occupation, and identity.

Methods

Six focus groups were conducted with PLWD (n = 51) and their caregivers (n = 6) at four ADCs across the U.S. ADCs were purposively selected to represent a diverse range of racial/ethnic backgrounds, geographic locations, and urban and rural settings. Qualitative directed content analysis was guided by Kitwood’s framework to categorize the aspects of ADC care that participants found most meaningful.

Results

Findings revealed that PLWD were most impacted by inclusion, as participants consistently described ADCs as family-like environments where they built strong social bonds with both peers and staff which alleviated feelings of isolation. Attachment was also a key theme, with many PLWD referring to ADCs as a “second home,”—a place where they felt safe, secure, and supported. Participants expressed comfort with ADC staff, who provided consistent, personalized care and treated them with dignity. The need for occupation was fulfilled by the opportunity to leave home, engage in structured activities, and maintain a sense of purpose and routine. Lastly, ADCs helped PLWD maintain their identity by respecting their individual preferences, cultural backgrounds, and autonomy. Some participants described newfound confidence and self-worth as a result of their participation, highlighting the importance of person-centered care.

Conclusions

This study amplifies the voices of PLWD, highlighting ADCs as environments that foster person-centered outcomes by addressing fundamental psychological needs. Findings emphasize the necessity of centering PLWD’s lived experiences in ADC programming, policy development, and outcome measurement to ensure alignment with what truly matters to them. Future research should focus on translating these insights into scalable person-centered care practices in ADCs and other long-term care settings.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12913-025-13436-8.

Introduction

As the global population ages, the number of individuals living with dementia is rapidly increasing. By 2050, an estimated 153 million people worldwide will be living with dementia, creating an urgent need for high-quality, person-centered long-term care options that support both individuals with dementia and their caregivers. Adult day centers (ADCs)—often referred to as Adult Day Care, Adult Day Services, or Adult Day Healthcare—are a key component of the long-term care continuum, offering structured programming, social engagement, and health services in a community-based setting [1]. These centers help promote well-being for persons living with dementia (PLWD) [2] who make up a significant proportion of participants served by ADCs [3]. However, much of the existing research on ADCs focuses on outcomes relevant to caregivers or payors [4]—such as cost-effectiveness and reductions in caregiver burden—rather than on the experiences of PLWD themselves. The voices of PLWD remain significantly underrepresented in the literature, despite the increasing emphasis on person-centered care models that prioritize their perspectives and preferences [5].

The underrepresentation of PLWD in research on long-term care settings, including ADCs, is due in part to assumptions about their ability to meaningfully articulate their experiences and preferences, as well as the ethical and methodological challenges associated with conducting research with individuals who may have cognitive impairment [5–7]. As a result, many studies on dementia care rely on proxy reports from caregivers or providers, which, while valuable, may not fully capture what matters most to PLWD themselves [8]. Additionally, the structure of dementia care policy and funding has long been shaped by financial constraints rather than by the lived experiences of those receiving care. Government agencies and payors such as the Centers for Medicare & Medicaid Services (CMS) have historically prioritized cost-containment, efficiency, and clinical outcomes over qualitative aspects of care, leading to an emphasis on reimbursement models that favor medicalized interventions and measurable reductions in healthcare utilization [9]. While such approaches address critical aspects of care delivery, they often fail to capture the subjective elements of well-being, engagement, and dignity that define quality of life for PLWD [10].

Dementia Care Practice Recommendations [11] focus on aligning services with the priorities of PLWD rather than solely focusing on institutional or reimbursement-driven objectives. Leading frameworks in dementia care—including those set forth by the National Institute on Aging and Alzheimer’s Association—underscore the importance of understanding “what matters most” to PLWD as a foundation for high-quality, person-centered care. Yet, in practice, many ADCs operate within constraints that prioritize efficiency and regulatory compliance over individualized experiences [12].

This study aims to address this critical gap by exploring firsthand perspectives of PLWD on the care they receive in ADCs. Through qualitative focus groups, we sought to identify the aspects of their experience that are most valued, uncovering insights that extend beyond traditional performance metrics. Our findings contribute to the growing movement in dementia care that by centering the voices of PLWD, this study provides critical insights into the elements of ADC care that foster well-being, dignity, and engagement. Findings from this work can help inform ADC program development, staff training, and policy recommendations that more meaningfully align with the lived experiences of PLWD.

Study 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.” [13] He used the term “person-centered care” as an umbrella term for approaches to working with PLWD that center on developing strong interpersonal relationships with the goal of cultivating personhood [14]. Our study was guided by Kitwood’s (1997) conceptual approach to cultivating personhood in dementia care. Principles of person-centered care (PCC) focus on the multidimensional person receiving care, as opposed to the needs and efficiency of staff caring for them. This creates a standard against which staff within programs serving PLWD (e.g. ADCs) can evaluate themselves through the lens of the PLWD.

Five essential psychological needs are addressed through PCC in Kitwood’s (1997) conceptual approach: Comfort—the feeling of trust that comes from others; attachment—security and finding familiarity in unusual places [2]; inclusion—being involved in the lives of others; meaningful occupation—being involved in the processes of normal life; and identity—what distinguishes a person from others and makes them unique [15]. These needs are present in all human beings but are more likely to be heightened in PLWD because they often cannot advocate on their own behalf and their personal sense of vulnerability is amplified by impaired cognition [16]. Given the growing reliance on ADCs for care of PLWD, we classify the experience of PLWD in ADCs according to Kitwood’s framework, and we evaluated the degree to which they reflect PCC.

Methods

Study design

This was an exploratory descriptive study that employed focus groups with PLWD and their informal caregivers at four ADCs in the United States (2 in the South, 1 in the West, and 1 in the East). Focus groups were selected over other approaches (e.g., one-on-one interviews, questionnaires) due to their ability to facilitate conversation and the free expression of ideas. The mixed-group format allowed caregivers to prompt PLWD about previous statements or experiences with ADCs, providing a level of comfort and security that would have been absent in segregated groups. Additionally, visual cues and prompts were incorporated to create a fail-free environment that enabled the inclusion of individuals with higher levels of cognitive impairment.

Sample selection

Partnering ADCs were purposively selected to provide a representative sample based on size, location, profit status, and racial/ethnic composition. Each group consisted of 6–10 individuals.

Inclusion and exclusion criteria

Eligible participants included ADC clients aged 65 and older with a clinical ICD-10 diagnosis of Alzheimer’s disease or related dementias (ADRD), including vascular dementia or dementia with Lewy bodies. The research team relied on the clinical judgment of ADC staff to conduct an initial capacity assessment, either using an instrument like the Quick Dementia Rating Scale (QDRS) or another similar tool. Informal caregivers were defined as unpaid family members who served as the ADC’s primary point of contact in supporting the care of PLWD.

Informed consent

Trained research staff assessed participants’ capacity to consent during the screening process using a standardized three-question approach [17]. If a PLWD was determined to lack capacity, and if their informal caregiver was not the designated power of attorney, the power of attorney was contacted via telephone to provide consent. A signed consent form was then returned before participation. All participants received a $50 incentive. Institutional Review Board approval was provided by the Principal Investigator’s (TS) home institution.

Recruitment

Recruitment leveraged the Principal Investigator’s (PI’s) established relationships with ADCs serving diverse populations, including White, Asian, Black, and Hispanic communities. Registered nurses (RNs) and social workers at participating ADCs conducted a chart review to identify clients with an ADRD diagnosis. A letter describing the study, eligibility criteria, and study team contact information was distributed to clients, along with the scheduled focus group dates and times. RNs at each site also directly inquired whether PLWD and/or their caregivers were interested in being contacted by the research team. Those who expressed interest were contacted by research staff via their preferred method (phone or email) and screened for eligibility.

Data collection

All focus groups were conducted by trained academic researchers with extensive experience in qualitative methods and dementia care research. Repeat interviews were not completed. Interviewers included faculty and graduate-level researchers with backgrounds in nursing, social work, public health, and gerontology. At the time of data collection, all interviewers were affiliated with academic institutions and held roles as professors, doctoral candidates, or research staff. Focus group moderators included both male and female researchers. Their gender identity was not explicitly disclosed to participants but was apparent during the sessions. All moderators had prior experience facilitating focus groups with older adults and PLWD. Interviewers were fluent in the language used at each site (English, Spanish, or Mandarin). Interviewers reflected regularly on their positionality and potential biases through post-session debriefings and analytic memos. The lead investigators had prior collaborations with participating adult day centers (ADCs), which may have facilitated rapport but also necessitated careful attention to neutrality during analysis. Reflexivity was maintained through regular team meetings to discuss emergent themes and researcher assumptions.

A comfortable and informal environment was established for each focus group session. A semi-structured interview protocol guided the discussions, using a series of open-ended questions informed by the domains outlined in Kitwood’s framework (see Supplementary Material to review the semi-structured interview guide). Sample questions included: “How does attending this center impact your/your loved one’s life? How does attending the center make you feel? What do you like or dislike about it?” Visual and oral prompts were used to remind participants of each question and to encourage elaboration and discussion. Each focus group lasted approximately 60–75 min. Each group was run in 1 of 3 languages based on the primary preferred language of the participants at each centers: Spanish, Mandarin, or English. Focus group moderators were all trained academic researchers fluent in the aforementioned language. Each moderator continuously reviewed interview notes to support a reflexive process that allowed for the emergence of new insights or follow-up questions. A detailed audit trail was maintained, with dated methodological documentation synchronized with analytic notes to ensure rigor and transparency.

Detailed field notes were taken during and immediately following each session by the moderator or a research team member. These notes were used to contextualize transcripts and support thematic analysis. Transcripts were not returned to participants due to the cognitive status of many PLWD and concerns about burden. However, validation was achieved through triangulation among multiple coders and discussion with care partners present during some sessions.

Qualitative data analysis

Audio recordings of the focus groups were transcribed verbatim and de-identified for analysis. Two experienced doctoral students independently coded the transcripts using a codebook informed by key domains from Kitwood’s Framework, reflecting directed content analysis. Text that did not fit within the preliminary codebook was reviewed and categorized either as a new code or as a subcategory of an existing code. The codebook was iteratively refined throughout the analysis process. Coding discrepancies were discussed among the research team, and adjustments were made as necessary. To ensure reliability, a random subset of at least three transcripts was independently analyzed by a third coder—a Master’s prepared researcher with a background in gerontology—and results were compared for consistency. Themes were identified both within and across coding categories, and data excerpts were selected to illustrate key findings. Data saturation was reached when no new themes emerged.

Findings were not returned to participants for comment due to concerns regarding feasibility and cognitive load. However, themes were reviewed by advisory stakeholders, including ADC staff and care partners, for resonance and face validity. Both dominant and minority perspectives were identified. Although the manuscript focuses on themes aligned with Kitwood’s framework, the analysis did include deviant or less common cases to ensure depth and nuance. These are referenced where relevant in the results and discussion sections.

Results

Between June and September 2024, the research team conducted six focus groups with PLWD (n = 51) and their care partners (n = 6) attending four ADCs across the U.S. (e.g., Tennessee, New York, and California). The ADCs served a diverse population of PLWD and their care partners, such as by racialized identity (e.g., Black, Hispanic, and Chinese) and socioeconomic status (e.g., low-income). Focus groups were conducted in multiple languages, including English, Spanish and Mandarin. Table 1 presents demographic characteristics of the total sample as well as each of the subsamples from the four ADCs. The total sample included 57 participants. The mean age of PLWD was 75.61 and the mean age of caregivers was 64.40. The majority of the sample was male (n = 40) and 17 participants were female. In terms of racial and ethnic identity, 10 participants identified as Hispanic/Latino, 10 as Black, 21 as White, 10 as Asian, 1 as American Indian/Alaska Native, and 1 did not report their race/ethnicity. Regarding education level, 14 participants had less than high school education, 18 graduated high school, 15 had some college education, 6 completed undergrad, 3 attended graduate school, and 1 did not report their education. Most participants attended the ADCs 5 times a week, while 3 attended 4 times a week, 8 attended 3 times a week, 6 attended 2 days a week, and 14 participants did not report how many times a week they attended. Two individuals who originally agreed, ultimately, declined due to scheduling conflicts. No participants dropped out once sessions began.

Table 1.

Demographic characteristics of focus group participants (N = 57) across the four ADC sites

	Total	Site 1	Site 2	Site 3	Site 4
N	57	23	10	14	10
Participant
PLWD	51	17	10	14	10
Caregiver	6	6	0	0	0
Mean Age (PLWD)	75.61	77	79	74	76
Mean Age (Caregiver)	64.40	64.40	-	-	-
Gender
Female	17	8	3	1	5
Male	40	15	7	13	5
Race/Ethnicity
Hispanic/Latino	10	0	10	0	0
Black	14	2	0	12	0
White	21	19	0	2	0
Asian	10	0	0	0	10
American Indian/Alaska Native	1	1	0	0	0
Not reported	1	1	0	0	0
Education
Less than high school	14	1	10	1	2
Graduated high school	18	7	0	7	4
Some college education	15	11	0	4	0
Completed undergrad	6	2	0	0	4
Graduate school	3	1	0	2	0
Not reported	1	1	0	0	0
Number of Days/Week Attending the ADC
2 days/week	6	4	2	0	0
3 days/week	8	2	4	0	2
4 days/week	3	2	1	0	0
5 days/week	20	9	3	0	8
Not reported	14	0	0	14	0
Not applicable	6	6	0	0	0

Note. All values represent count data (frequencies) unless otherwise specified

Of the four ADCs where focus groups took place, three were private non-profit and one was private for-profit. The average number of participants enrolled across centers was 121 (range of 35 to 320 participants). ADCs served approximately 34 PLWD (range of 9 to 50 participants) per site. Regarding the types of needs that ADCs were designed to meet, two centers equally addressed social/recreational and health/medical needs, one addressed only social/ recreational needs, and one addressed primarily social/recreational needs and some health/medical needs. ADCs were funded by a variety of sources, including Medicaid, Older Americans Act/Title III, the Veterans Administration, and out-of-pocket payment by participants and families. The centers employed several types of full-time and part-time employees including registered nurses (range of 0 to 9 employees), licensed practical nurses/licensed vocational nurses (range of 0 to 5 employees), certified nursing assistants/home health aides (range of 0 to 10 employees), social workers (range of 0 to 7 employees), and activities directors/staff (range of 1 to 8 employees).

The next section categorizes the aspects of quality-of-life most impacted by ADCs from the perspectives of PLWD and their care partners according to Kitwood’s (1997) five essential psychological needs: inclusion, attachment, comfort, occupation, and identity. Table 2 defines Kitwood’s (1997) domains, summarizes each subtheme from the focus groups that fall within each domain, and includes sample excerpts that pertain to each theme.

Table 2.

Aspects of quality of life most impacted by ADCs categorized by Kitwood (1997)’s conceptual model of person-centered dementia care

Domain	Subthemes	Sample Excerpts
Inclusion Being involved in others’ lives	Social Networks  Being a part of a group of people who are  connected to each other Family  Serving as an extended kinship network;  mentions of family Friendship  Forming relationships with participants  and ADC staff Loneliness (negative examples)  A sense that you do not have friends or  others you can share experiences with	“We feels like family here … coming to the center is like going to a new home. [Staff] treat us like parents, and we treat them like children.” “After I arrived [at the center], I felt really happy. Before, I didn’t know anyone, but now I have good friends and brothers I can’t live without. We have fun together. After coming here, I feel like I age more slowly.” “I think my favorite part [of attending the center] is just being with people. The comradery.” “After two years [attending the center], I feel like this place is like a big family where I receive a lot of care and attention.” “We’re brothers and sisters. And we love each other.”
Attachment Security and finding familiarity in unusual places	Belonging to the ADC  Feeling connected to the center itself Safety and Security at the ADC  Feeling safe and secure while at the ADC  center	“I’ve always said that this place is my second home.” “The feeling of family members being able to relax and know that their loved one is totally taken care of. It’s a real relief and comfort to know that—because if we hadn’t found this facility, she would be home.” “Yes, [the staff] treat us all good, and we’re safe with them.”
Comfort The feeling of trust that comes from others	Personalized Healthcare  Providers are familiar with your medical  history/provide specialized care;  empathetic care	“The staff know what medicine you gotta take and they document everything. And they know exactly what you need and what you don’t need. And they’ll tell you, let’s say I want Tylenol, she’ll say well, you don’t need none right now, you done took this or something like that—and that’s personal [care]. They know us better than we know ourselves.” “I came with an open mind, and after I arrived, my mood slowly improved. Why is that? I felt that from the higher-level staff to the frontline workers, they all treated the elderly with respect and sincerity, which really lifted my spirits.”
Meaningful Occupation Being involved in the processes of normal life	Engagement/Having Somewhere to go  Having somewhere to go Sense of Purpose  Giving a sense of motivation; having a  goal or commitment; feeling like life has  meaning Activities at the ADC  Doing things that can bring a sense of  enjoyment or fun, foster connection, or  stimulate thinking	“I stayed at home within four walls, sitting at a chair, and doing nothing, and my mind was going. I felt bad mentally. But my daughter, thanks to God she was able to find this place here, and I thank God because, the four, five hours that I’m here, I’m fascinated. They take us out, they give attention, all of them. And I love being here.” “Now that I’m [at the center], I realize I used to feel quite lonely staying at home all by myself. At home, I’d just watch my little dog while it watched me. But now that I’m here, being with everyone feels like a big family. We all communicate with each other. The social workers care for us a lot, and I feel pretty good here.” “There are so many activities, as I mentioned before; many of them meet everyone’s needs. Whether it’s dancing or learning the electronic horn—we’re not trying to become professionals, but at least at our age, we can still learn and enjoy ourselves. That’s the goal. Participating in these activities has improved my physical and mental health in many ways. I used to feel very gloomy, and I had various health issues, but over the past two years, there have been real improvements.”
Identity What distinguishes a person from others and makes them unique	Personhood  Feeling like you are treated as an  individual and people value your identity;  people understand your preferences Culture  Feeling like your culture is understood  and supported at the ADC Independence and Autonomy  The degree to the ADC supports  their independence and autonomy;  rehabilitative activities that promote self-  efficacy Emotional Well-being  Feeling positive emotions while at the  ADC; on the other hand, negative  feelings about personal characteristics	“They treat us all the same. There are people from all over. I am Puerto Rican. There are people from El Salvador, from Mexico—all different places.” “I feel that the center is full of cultural vibes. It seems so rich. The environment here is decorated by the elderly themselves. Every month, activities are designed by the teacher based on seasonal changes and holidays. So I think it’s filled with cultural atmosphere. With this cultural vibe, we elderly people also become more cheerful over time.” “[After coming to the center], you feel free. I mean how should I say it—liberated. Independent.” “I have a deeper understanding of the center now. At first, I thought it was just a place for old people, and I didn’t like it. I thought it was for old folks, and you know, getting older can be tough. Also, since the pandemic, I haven’t been in good health. It wasn’t like I was dying or anything, but I felt down. One day, I thought I’d come and give it a try. I came with an open mind, and after I arrived, my mood slowly improved.”

Inclusion

Participants described their relationships with center members and staff at the ADCs, which Kitwood (1997) referred to as the psychological need of inclusion. For example, across all focus groups, participants described staff and center members as a “family”, making comments like, “It’s just a large family here” (Site #2) and “we’re all a family” (Site #2.) Participants also compared their relationships with other ADC members to that of their own family, such as one who stated, “We feel good here because we’re with family. And when you get home, well, you’re [also] with your family. It’s the same thing” (Site #2). ADC members were often referred to as “brothers and sisters” (Site #2) and “siblings” (Site #2), such as one participant who shared, “It’s through love that [the ADC members] help each other. If a person needs anything, we share this at the table … as if we were sisters” (Site #2). In addition, staff members were also an integral part of the “family”, as one participant stated, “The staff that works here is the best we’ve seen. They’re our family here … because they worry about us a lot, regarding our food, and [giving us] attention” (Site #2). Support from “a family of their choosing” at the ADC was especially important for participants who did not receive support from their own families, such as one who shared, “this family is nicer than our own” (Site #2). Likewise, another participant talked about how they received a kind of support they didn’t always have at home, “You know you can come [to the ADC] and get something off your mind, and you know someone will listen. There’s not always someone there to listen or talk to you [at home]” (Site #1).

In addition, participants reflected upon the ways in which their social networks grew and friendships developed as a result of attending the ADC. Participants shared that one of the most important things about the center is “the people” (Site #1) and in particular “the comradery” (Site #1) between ADC members. Many shared that they’ve made new friends and reconnected with old ones who they enjoyed spending time and sharing stories with. In addition, participants also missed their friends and worried about them on days they didn’t attend the ADCs. As an example, one participant shared how meaningful it was when his friends at the ADC showed concern after his medical procedure, “I thought I was the only one that cared, but everyone cared about me … and I thought that was really nice for them to be concerned” (Site #3). It was evident that ADC members formed strong bonds with each other, as one participant stated, “we all really know each other. And we look out for one another and see if something isn’t right” (Site #1). In addition, another participant described how staff members provided a kind of support they are seeking outside the family, stating, “[Staff members] give us a hug … sometimes we just need somebody else to touch us, not just our loved ones … And it’s beautiful” (Site #1).

Developing relationships with others at the ADCs helped participants cope with feelings of loneliness. As one participant stated, “sometimes if you’re just home alone, you get lonely” (Site #3). Likewise, another participant shared, “my room [in my house] is upstairs, and once I get up there, I don’t see nobody” (Site #2). Being alone made participants feel sad, just as one participant shared, “loneliness hurts” (Site #2) and another stated, “You spend the days of the week at home … without having anybody to talk to. It’s not easy” (Site #2). Once participants attended the center, they described how they were no longer lonely because they were spending quality time with others. As one participant stated, “I realized I used to feel quite lonely staying at home all by myself … Now that I’m here, being with everyone feels like a big family. I feel pretty good here” (Site #4). As another example, a care partner shared that her father who was living with dementia lost opportunities for social engagement as a result of the pandemic, but he was able to make new friends post-pandemic by attending the ADC (Site #1):

My dad was social prior to COVID … but [because of the pandemic] he stopped going to McDonalds for coffee with his friends. This was the same time we saw a decline [in his memory]. We wanted to give him that [social] outlet again … so we were able to come [to the ADC] to get that sort of socialization for him. I appreciate that part about it because he gets to come here for his coffee in the mornings now … and make new friends.

Attachment

In addition to the people, the place—the ADC itself—was a space where participants felt safe and comfortable. According to Kitwood (1997), attachment is security and finding familiarity in unfamiliar places [2]. Across several focus groups, many participants referred to the ADCs as, “their second home” (Sites #1, #2, and #4). In addition, the center was a physical place where participants could congregate to spend time with each other. For example, one focus group talked about how if they did not have the center, would be difficult for everyone to spend time together because they lived far apart (Site #3). Furthermore, the center provided a space where participants could feel safe and secure. Many participants shared that they felt safe at the ADCs because of the ways in which ADC members took care of each other, “It’s a safe place to come to. We all do stuff to help and keep each other safe. If something happens to you, you can get help, and it’s wonderful” (Site #1). Staff members also made participants feel safe, such as one participant who stated, “The leadership, social workers and staff, and the assistants greet us with smiles every day and talk to us about our safety and meals, making sure we eat slowly and safely” (Site #4). Finally, participants described looking forward to returning to ADCs after the weekend was over or when they were traveling to other places, suggesting a strong attachment to ADCs (Site #4).

Comfort

In contrast to the theme of attachment which focused on participants’ safety and familiarity with the ADC, its members, and staff, [2] participants also described feelings of trust they had in others—a domain Kitwood (1997) referred to as comfort. Specifically, participants shared feelings of trust in staff members who provided personalized care for ADC members living with dementia. For example, some participants stated that they trusted staff because they treated participants with respect and dignity, as one described, “I felt that from the higher-level staff to the frontline workers, they treated [the ADC members] with respect and sincerity, which really lifted my spirits” (Site #4). In addition, participants trusted the staff because they got to know clients and their families, “the staff do a survey where they sit down with the person and their caregiver, and they find out about the client. That helps them formulate the relationship because they get to know the client better” (Site #1). Another caregiver shared that she had “total trust” in the staff to take care of her mother, “The feeling of family members being able to relax and know their loved one is totally taken care of. I have total trust when I drop Mom off. I know that there’s no other place she would get [this level of care]” (Site #1). As another example, one participant trusted ADC staff to help with their medication management (Site #1):

The staff know what medicine you gotta take and they document everything. And they know exactly what you need and what you don’t need. And they’ll tell you, let’s say I want Tylenol, she’ll say well, you don’t need none right now, you [already took another medicine already]—and that’s personal [care]. They know us better than we know ourselves.

Meaningful occupation

Kitwood (1997) referred to occupation as being involved in the processes of normal life. Across all focus groups, the ADCs were described as a place where participants could go for the purposes of getting out of the house. The ADCs were important to participants because many shared that they were bored at home and didn’t have anything to do, as one stated, “ain’t nothin else to do [at home]” (Site #3) and another said, “I would just be sitting around the house watching TV” (Site #3). Therefore, the center gave them a place to be, as participants stated it was important to, “just get out of the house and go somewhere” (Site #3) and the ADC was “somewhere to go” (Site #3).

In addition, participants shared that attending the ADCs gave them “a sense of purpose when you wake up” (Site #3). For example, one participant shared, “When I am alone for a few days, I read or watch TV … Here [at the ADC], we feel so happy all the time that we don’t feel the time go by … [we feel] happiness, joy and everything that encourages us to continue living” (Site #2). Likewise, another participant described how receiving care and support from ADC members and staff gave attendees with dementia a renewed sense of purpose, such as one who stated, “I’ve seen several members that went two or three days without eating … because they were sitting home alone all day in bed. Their bodies weren’t taken care of. If they just had a little extra care, if they had a place like this to spend the day … to be surrounded by love … it gives you [purpose]” (Site #1). Other participants found motivation to engage in activities by doing them with others, such as one who shared, “Sometimes on your own, you don’t really wanna exercise, but if there’s other people [at the ADC] exercising, it inspires you” (Site #1).

Furthermore, the ADCs provided enjoyable activities that served as a source of cognitive stimulation to help participants cope with memory challenges. Participants engaged in several activities with other ADC members such playing games, sharing meals together, doing crafts, attending classes, exercising, singing, and dancing. One participant believed that the activities helped “keep our minds active” (Site #4). As an example, another participant shared about how staff members facilitated an activity where ADC members discussed different topics, “[Staff member] creates a calendar with a daily topic … they bring up in conversation throughout the day and it jogs [ADC members’] memories about that particular thing” (Site #1). In addition, several participants discussed how they learned new skills and reconnected with old passions through engaging in cognitively stimulating activities at the ADC. For example, one caregiver described how her loved one with dementia started playing the piano at the ADC, “He has two pianos at home. But he plays here … [the ADC] brings it out in him. I used to ask him, ‘why don’t you practice [at home]?’ It’s just something that stopped happening [at home] and then started happening here.” (Site #1). Another participant summarized the ways in which activities at the ADC provided cognitive stimulation and meaningful engagement (Site #4):

You can also learn in various classes, like English classes, calligraphy classes, Peking opera classes, and music classes—these are just a few. As you age, it’s not just about staying physically healthy—you need to keep your mind healthy too. Even if you take a calligraphy class, can you become a calligrapher? It’s unlikely, but it exercises your brain and helps delay aging. We have many rich activities here, and I feel that we are healthy both physically and mentally.

Identity

Finally, Kitwood’s (1997) identity domain refers to what distinguishes a person from others and makes them unique. Participants indicated that other ADC members and staff made them feel as though their unique identities, preferences, and values were understood and appreciated. For example, one participant shared that to ADC staff, “I’m not just a number. I’m a person … I like that [the staff] treats me like a person” (Site #3). Another participant stated, “the staff wanna make sure your presence here is accepted” (Site #1). Similarly, another participant described, “I think that [the staff and other ADC members] know you for who you are. And they treat you the right way, no matter what you were or who you are … you can just be yourself” (Site #1). As an example of this, ADC staff asked participants about their preferences for food and activities to ensure that their needs and desires are being met. In the same way, participants felt that other ADC members knew them well because they often shared stories about their lives with each other.

Furthermore, participants felt that their cultural beliefs and customs were understood and supported at the ADCs. As one participant described, “I feel that the center is full of cultural vibes … Every month, activities are designed by the teacher based on seasonal changes and holidays. With this cultural vibe, we elderly people also become more cheerful” (Site #4). As an example, one ADC held a weekly bible study, as one participant reflected, “Anywhere there’s gospel or the word of God is taught, I’m for it. Spiritually [it fills me up] … it’s a blessing” (Site #3). In addition, participants reflected upon the ways in which the different cultures of ADC members are celebrated and respected, such as one participant who stated, (Site #2):

[The staff] treat us the same. There are people from all over. I am Puerto Rican. There are people from El Salvador, from Mexico—they treat us all good. And we all still one same family. We are all together. Here, there is no distinction [between different] class[es] nor difference[s] in color. We’re good with them, and they are with us. It’s not a divided family. It’s a united family. The Lord brought us here to get together with this family, and we have to thank the Lord every day, and more people keep coming so that [current center] continues to grow each day. That is all that we want.

Finally, participants described how coming to the center provided them with a sense of autonomy and independence from family members. As one focus group described it, “[Coming to the center makes you] feel free, liberated, and independent” (Site #2). This feeling was important for some participants who felt like a burden on their family members at times, such as one who stated, “I have dementia, and when [me and my wife] drove up [to the ADC], I thought she was dumping me. I’m used to being with her at home, but I have since learned that she wanted me to come here … to give her a break [from providing care]” (Site #1). Likewise, another participant was also encouraged by the opportunity her family caregivers’ respite as a result of attending an ADC, “I got three girls and four boys, and I didn’t want to load them up with more [responsibility] than they had already. So, I thought I can’t be selfish. [Attending the ADC] helps them” (Site #1). The independence and sense of autonomy that participants got from attending the ADC led to a greater level of self-efficacy and minimized negative beliefs about themselves. As an example, one participant shared how he had once thought the center was for “old people,” but once he attended the ADC, his own health and his ideas about aging greatly improved (Site #4):

I have a deeper understanding of the center now. At first, I thought it was just a place for old people, and I didn’t like it. I thought it was for old folks, and you know, getting older can be tough. Also, since the pandemic, I haven’t been in good health. It wasn’t like I was dying or anything, but I felt down. One day, I thought I’d come and give it a try. I came with an open mind, and after I arrived, my mood slowly improved. What really touched me was seeing a few elderly folks upstairs who have difficulty moving. The staff regularly remind them and help them go to the restroom. I saw this, and it brought tears to my eyes. Honestly, I think that even family members may not be as enthusiastic or respectful [as the staff] in helping them out.

Discussion

In this study, researchers conducted focus groups to explore and identify the aspects and outcomes that are most important and meaningful to PLWD and their family caregivers using ADCs. This represents the first step in a larger process to develop and implement person-centered outcomes in existing data collection protocols in ADCs. In this section we will discuss the attributes that contribute to person-centered care in ADCs and the findings from this study organized around three areas: (a) what we anticipated based upon the literature and actually found; (b) what we anticipated based upon the literature and found to a greater degree; and, (c) what we anticipated based upon the literature and found to a lesser degree.

The anticipated findings in this study were well-situated within the tenets for person-centered care. For example, participants felt close to other participants and staff and consistently expressed feelings of community (Inclusion). Participants expressed a sense of belonging and comfort at the ADCs (Attachment) and both participants and family caregivers indicated that they trusted and felt assured that days at the ADCs would be good days for both parties (Comfort). Participants also stated repeatedly that the ADCs provided a place to go and engage with others and with activities, an important break from the monotony of being alone at home (Meaningful Occupation). Finally, participants felt that they were treated as individuals, that staff and others knew them well, and that the ADCs helped them to maintain identity, independence, and autonomy (Identity). These outcomes were anticipated by the researchers and reflect the emerging research in ADCs [2, 18, 19] and validate the person-centered concept and approach of ADCs.

Next, we discuss what was found in the study to a greater degree than anticipated based upon the literature. While we anticipated that ADC participants would have friendly relationships with other participants and staff, we did not anticipate the depth of these relationships. While the literature is limited, research suggests that participation in ADCs can increase social connections and social interaction, including for PLWD [20–22]. In the present study, participants often described their relationships with each other and staff as being tantamount to relationships with family. Participants reported that one of their primary motivations for attending an ADC was to take care of the other participants and that they would worry when participants were absent. This sense of connection created close knit social bonds and networks that were deeper than we anticipated and elevated the importance of inclusion, attachment, and identity in person-centered care for PLWD. It is important to note that some of the participants had relationships with other participants prior to attending an ADC; however, this was not the case with most participants. Again, this highlights the ability of ADCs to connect PLWD with each other and the importance of the relationships formed in an ADC for participants.

Turning to findings that we anticipated and found to a lesser degree, the literature on ADCs suggests that the activities that participants engage in are a keystone of programming and closely linked to positive outcomes. Researchers have developed and evaluated theory-driven interventions in ADCs with the intention of developing evidence-based and best practices [23]. Activity programming has been viewed as a foundation of ADCs, and calendars are filled with familiar and creative activities. In the present study, we found that activities do matter; however, the activity itself may be less important than the shared experience and the sense of community in engaging in activities together. Participants did not elaborate on the activities as we had anticipated, rather they mentioned the activity within the context of the shared experience. Moving forward, researchers and practitioners who develop programming in ADCs and other settings should focus not only on engagement with the activities, but also engagement with one another.

Person-centered care also highlights the importance of understanding and supporting the unique culture of patients, including aspects such as language, food, music, and activities. While participants did express their appreciation for culturally relevant programming, culture did not emerge as central to the positive experiences of participants as it has in prior research [24]. In fact, at least one participant discussed the fact that participants had a wide variety of cultural backgrounds, but the ADC created a sense of commonality among cultures that unified participants. In a rural center in the South, a Black participant deeply expressed his gratitude to a White participant who had purchased Bibles for his grandchildren. In all likelihood, this type of interaction and resulting relationship would not have occurred if the two had not attended an ADC together. The takeaway here is that culture matters, but creating a culture of inclusion and acceptance may be the meta-culture that matters most. That being said, culture may have played in a role in the way that participants spoke about relationships they formed at the center. For example, there appeared to be pronounced family-like relationships between participants at the ADC that primarily served Latino/a participants. This may be attributed to the strong sense of collectivism and familism (e.g., familismo) in the Latino culture that places a primacy on relationships and often extends the family tree to include voluntary kin and chosen family, at times referred to as ‘fictive kin’ [25].

As healthcare moves toward more person-centered models of care, it is critical to solicit, hear, value, and act upon the voices of persons and families who receive services and care. The structure, intent, and approach of ADCs differ from other sectors of healthcare and long-term care. While all sectors of healthcare strive to achieve person-centered care, the reality is that care falls far short of this goal due to factors ranging from limited resources (e.g., time, staffing, reimbursement) to difficulties in understanding what precisely constitutes person-centered care [26–28]. This includes long-term care settings for PLWD such as nursing homes, where care still skews toward bed and body care and rigid structures (e.g., schedules) and persistent staffing issues (e.g., turnover) often come at the cost of knowing the residents and honoring their preferences [29]. In contrast, the focus of ADCs is truly on person-centered care and the goals are to support both a functional and a meaningful life for participants. The keys appear to lie in deeply knowing the participant and creating an environment that promotes personhood, socialization, and engagement. Participants often attend an ADC multiple days of the week over years of attendance and staff know participants and families very well. Finally, staff understand that their role is not only to care for the participants but also to care about the participants [30]. These factors can combine to create a platform of care that is uniquely matched to frameworks of person-centered care for PLWD [31], such as Kitwood’s model (1997) used in this study but also other models and frameworks [32, 33].

Prior to discussing next steps, there are several limitations to consider in interpreting and utilizing the findings from the present study. First, this was a relatively small study that consisted of six focus groups. Adult day services is a diverse sector of healthcare and there may be centers that don’t reflect the findings captured in this study, therefore potentially limiting the study’s generalizability. That being said, efforts were taken to capture diversity in terms of geographic location, populations served, and structure (e.g., ownership and management approaches). Second, there may have been some degree of response bias given the fact that staff played roles in selecting the participants and were often present at the focus groups. Participants may have been selected based upon their positive experiences with ADCs and they may have refrained from expressing negative perceptions of ADCs in the presence of staff. Anecdotally, this did not appear to be the case as the focus groups tended to be free flowing and participants appeared to be comfortable in sharing their perspectives and experiences, even when seldomly negative. Yet, ADCs with less person-centered or poorer-quality care might be less likely to participate in studies, resulting in a missing perspective. Third, caregivers were represented at only one adult day center, where strong staff-caregiver relationships facilitated their involvement in focus groups. While this limits generalizability, it reflects our intentional focus on centering the voices of PLWD, whose perspectives are often underrepresented in research. Finally, women are underrepresented in the study despite having a higher prevalence of dementia on average [34].

Future directions

Building on the insights from this study, our next step is to systematically identify outcome measures that not only reflect the key domains of person-centered care—inclusion, attachment, comfort, occupation, and identity—but are also practical and feasible for routine data collection in ADCs. To achieve this, we will conduct a Delphi study involving ADC providers, administrators, and frontline staff. This consensus-driven approach will engage diverse stakeholders in an iterative process to determine the most relevant and actionable indicators of person-centered care in ADCs.

The Delphi study will address two key challenges: (1) defining measurable person-centered outcomes that accurately capture the experiences of PLWD in ADCs and (2) ensuring that these measures can be feasibly integrated into real-world ADC operations without creating excessive burden on staff or disrupting care delivery. Through multiple rounds of expert input, we will refine a core set of feasible, validated metrics that can be used to assess the effectiveness of ADC programming in enhancing PLWD’s well-being. By integrating both the perspectives of PLWD and the practical insights of ADC providers, this study will bridge the gap between person-centered care philosophy and real-world implementation.

Conclusion

This study amplifies the voices of PLWD who use ADCs, highlighting the profound impact these settings have on their sense of inclusion, attachment, comfort, occupation, and identity. By centering PLWD’s perspectives, we provide critical insights into the person-centered elements of ADCs that contribute to their well-being, social engagement, and autonomy. Ultimately, this work represents a critical next step in ensuring that ADCs remain responsive, inclusive, and deeply attuned to the needs of those they serve, reinforcing their role as vital community-based resources in dementia care. These findings reinforce the need for policies and practices that prioritize social connection, culturally responsive programming, and meaningful engagement in dementia care. Moving forward, researchers and policymakers should work collaboratively with ADC providers to develop standardized person-centered outcome measures, expand funding mechanisms that support ADC sustainability, and implement staff training that strengthens the delivery of individualized care. In addition, the perspectives of PLWD should be included in the development and testing of person-centered outcome measures to ensure that these instruments reflect what matters most to PLWD. Additionally, future research should explore longitudinal impacts of ADC participation on PLWD’s quality of life and compare experiences across diverse care settings to further refine best practices. The results of the aforementioned Delphi study will use the data presented here to build consensus around person-centered outcome measures, support ADCs in advocating for sustainable funding, and help shape future policies that prioritize quality of life and well-being for PLWD. As ADCs continue to serve as a vital component of dementia care, ensuring their alignment with the lived experiences and needs of PLWD will be crucial in advancing truly person-centered, community-based care models.

Supplementary Information

Below is the link to the electronic supplementary material.

Abbreviations

ADC

Adult Day Center

PLWD

Persons Living with Dementia

CMS

Centers for Medicare & Medicaid Services

ADRD

Alzheimer’s disease or related dementias

QDRS

Quick Dementia Rating Scale

Author contributions

Sadarangani conceptualized the study and edited the manuscript draft. Scher drafted the results section and conducted the qualitative analyses. Siamdoust contributed to the analysis and manuscript editing. Anderson co-conceptualized the discussion and assisted with interpretation of findings. Zagorski edited the manuscript to ensure findings were meaningful to stakeholders. Li assisted with data collection, analysis, and provided comprehensive edits.

Funding

This work was supported by a grant from the Alzheimer’s Association (GRANT ARCOM-24-1249390).

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethics approval and consent to participate

This project was conducted in accordance with the Declaration of Helsinki. This study was approved by the NYU Institutional Review Board.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.