Home Care Workers Providing Person-Centered Care to People With Dementia

Abstract

Person-centered care for people living with dementia has been associated with improved functional ability and quality of life, yet little is known about person-centered care in the home settings. Our objective was to explore home care worker perspectives on providing person-centered care for their clients living with dementia. Using secondary qualitative analysis of 22 semi-structured interviews with home care workers, we identified themes related to the Dementia Initiative’s person-centered dementia care framework (Initiative, 2013). We found that home care workers acknowledged their client’s personhood while also advocating for their needs. However, home care workers encountered barriers to providing person-centered care, including role limitations and challenging dynamics with other home care workers and family caregivers. This analysis can inform further approaches to better integrate home care workers in person-centered healthcare teams and improve how the needs of people living with dementia are identified and met in the home.

Introduction

A growing number of people living with dementia and their families are opting to continue living in the community even as disease advances: the home environment may enable them to remain close to friends and family, maintain autonomy, and avoid the costs associated with long-term care facilities (Kreider & Werner, 2023; Samus et al., 2018). To ensure safety and well-being in the home, people living with dementia and their families often turn to home care workers (HCWs) for additional support (Reckrey et al., 2021; Samus et al., 2018). These HCWs (also known as paid caregivers, personal attendants, and home aides) assist with activities of daily living (ADLs) and other health related tasks, including providing emotional support and responding to behavioral expressions (Reckrey et al., 2019; Scales et al., 2020). In the United States, approximately 25% of people living with dementia living in the community receive some form of home care, with nearly 50% of those with severe dementia receiving home care (Reckrey et al., 2020).

Caring for people living with dementia requires a person-centered approach (Prince et al., 2013). Frameworks guiding person-centered care emphasize recognizing the multiple dimensions of an individual’s personhood and using an individualized approach that prioritizes effective communication and nurturing relationships, as opposed to care that focuses on dementia as a disease (Breen et al., 2022; Edvardsson et al., 2008; Hedman et al., 2022; Initiative, 2013; Lord et al., 2020). The Dementia Initiative was an effort led by the Consumer Consortium on Assisted Living that created a consensus-based framework for person-centered dementia care that included four principles: (1) Core Values and Philosophy, (2) Structural Elements, (3) Operational Practices, and (4) Individualized Practices (see Table 2) (Initiative, 2013). Importantly, these four principles are connected: knowledge of the Core Values and Philosophies enables strong Operational Practices and Structural Elements, which support Individualized Practices that are adaptable to each person’s circumstances.

Table 2.

Dementia Initiative Person-Centered Dementia Care Framework (Initiative, 2013).

Principle	Definition	Themes
1. Core values and philosophy	Every person has their own meaning of life, personality, preferences, and interests, with dementia being just one aspect on an individual’s identity	1.1 HCWs focused on their clients’ personhood by recognizing dementia as one aspect of an individual’s existence and describing their clients as “like family” 1.2 HCWs emphasized their clients’ disease by describing dementia symptoms as the opposite of normal and using analogies to children to describe people living with dementia
2. Structural elements	Eight domains composing the foundation of person-centered care, including relationships and community, care partners/workforce, meaningful life and engagement etc.	2.1 communication between home care workers was important to providing cohesive care 2.2 HCWs advocated for their clients when they felt that other HCWs were not meeting their clients’ needs 2.3 communication with family caregivers was primarily focused on client needs 2.4 HCWs deferred care decisions to family caregivers, but sometimes disagreed with family caregivers on how to meet needs
3. Operational practices	Discrete practices that anchor each of the eight structural outcomes them more than formal training	3.1 for many HCWs, on the job client experience prepared elements to achieve person-centered 3.2 the care plan sometimes was a barrier to person-centered care, but HCWs advocated within and around the care plan to meet clients’ needs
4. Individualized practices	Ways of interacting with individuals that support their	4.1 HCWs reported that being observant and patient were important to supporting their clients 4.2 HCWs developed individualized strategies to meet client needs

Interventions to provide person-centered care for people living with dementia in residential long-term care have been associated with increased ability to perform ADLs and improved quality of life (Li & Porock, 2014; Sjögren et al., 2013). However, further research is needed to better understand person-centered care in home care settings. A small but growing body of literature highlights the importance of person-centered care in home settings (Fazio et al., 2018; Goh et al., 2022; Polacsek et al., 2020). While limited studies include HCW perspectives (Backhouse & Ruston, 2022; Goh et al., 2022; Hedman et al., 2022), most studies focus on client and family caregiver perspectives on home care (Hoel et al., 2021; Polacsek et al., 2020; Saragosa et al., 2022).

In this study, we conducted a secondary qualitative analysis of semi-structured interviews of HCWs caring for clients living with dementia. These interviews asked HCWs to describe their role in the care of people living with dementia and how they collaborate with families and the healthcare team; they provide a unique opportunity to explore HCWs’ perceptions of if and how they provide person-centered care for their clients with dementia.

Methods

Study Setting and Sample

Our study analyzes data from a larger triadic, longitudinal qualitative study on the role of paid caregivers in home-based dementia care (Reckrey, 2023). This study recruited English or Spanish speaking members of the care team (i.e., family caregiver, HCW, geriatrician) of 9 people with moderate to advanced dementia identified by their geriatricians at three primary care geriatrics practices in [city in the US] for a series of up to 3 interviews over 6 months. Family caregivers were initially approached for enrollment, followed by HCW and geriatricians. Because of the dynamic nature of dementia care, at each follow-up interview, we first confirmed with the family caregiver if the HCW had changed. If a new HCW was identified, that person was interviewed for that respective timepoint in the 6-month study period and the previous HCW was not interviewed again.

Data Collection

An interdisciplinary research team with expertise in paid caregiving, family caregiving, dementia, and home-based care developed and piloted study interview guides; the HCW interview guide (Supplement 1) explored HCW roles in home-based dementia care (e.g., collaboration with family caregivers, HCW agencies, and the larger health care team) and changes in role over time. Interviews were conducted in English (8/11 HCWs) by JR and DW and in Spanish (3/11 HCWs) by SP, a native Spanish speaker, via telephone or HIPAA-compliant Zoom depending on participant preference; interviews lasted an average of 40 minutes. Interviewers wrote memos at the conclusion of each interview to reflect on the interview and capture emerging themes. Interviews were recorded, professionally translated if needed, and professionally transcribed.

Data Analysis

The larger study recruited a total of 29 participants (9 family caregivers, 9 geriatricians, and 11 HCWs) for a total of 75 interviews. This sub-study analyzes data from 22 interviews with 11 HCWs (11 initial interviews, 11 follow-up interviews) using directed content analysis, as we used codes corresponding to the Dementia Initiative’s person-centered care framework as the foundation of our codebook and subsequent analysis (Hsieh & Shannon, 2005). We developed a codebook using the four principles of the Dementia Initiative’s person-centered care framework as a priori categories (i.e., Core Values and Philosophy, Structural Elements, Operational Practices, and Individualized Practices).We added codes within each category that represented conceptually distinct concepts related to the principle based first on the lead author EX’s initial review of the transcripts; these codes were then discussed with the research team and refined based on additional transcript review, our team’s prior research (Reckrey et al., 2019, 2020, 2022, 2023), clinical expertise, and review of emerging themes previously identified in memos (Supplement 2). The codebook was iteratively revised with input from the research team as codes were applied to the interviews. This resulted in two rounds of codebook revisions, and the final codebook was applied to all transcripts by two members of the research team (EX and DW), who independently coded the transcripts uploaded in Dedoose qualitative software. Any disagreements in coding were discussed between EX and DW until consensus was achieved. We recorded our decision-making process with detailed notes and returned to this audit trail throughout our analysis to confirm our rationale and interpretations (Lincoln & Guba, 1986; Rolfe, 2006). EX reviewed all coded data and identified preliminary themes within each principle of the Dementia Initiative person-centered care framework, which were then reviewed and refined with the full research team.

This study was approved by Mount Sinai’s Institutional Review Board (#19–01296).

Results

We interviewed 11 HCWs (n = 22 interviews) caring for 9 people living with dementia. Table 1 describes their characteristics. All of the HCWs were female and a majority were born outside of the United States (81.8%). Nearly half identified as Hispanic (45.5%) or Black (45.5%) with a majority reporting a native language other than English (81.8%). HCW experience level ranged from 3 months to 18 years and most were employed by an agency (81.8%). Nearly all reported receiving some formal training in caregiving (90.9%) with a majority receiving some dementia-related training (63.6%). A minority of HCWs cared for multiple clients (27.3%), but most clients required care from multiple HCWs.

Table 1.

Characteristics of Home Care Workers Caring for People Living With Dementia.

	N (%)
Total	11
Age, mean	50
Sex
Female	11 (100)
Race/Ethnicity
Black	5 (45.5)
Hispanic	5 (45.5)
Asian American or Pacific Islander	1 (9.1)
White	2 (18.2)
First language
English	2 (18.2)
Spanish	5 (45.5)
French	2 (18.2)
Other	2 (18.2)
Birth country
USA	2 (18.2)
Outside USA	9 (81.8)
Training characteristics
Formal caregiving training	10 (90.9)
Dementia training	7 (63.6)
Paid caregiving characteristics
Length of time as paid caregiver (total)	6.39 yrs (range: 3 mo–18 yrs)
Agency-employed	9 (81.8)
>1 clients	3 (27.3)
Shift hours
24 hours	4 (36.4)
8–10 hours	4 (36.4)
<8 hour	2 (18.2)
Unknown	1 (9.1)

We identified themes within each of the four principles of the Dementia Initiative’s person-centered care framework (Table 2). Of note, sometimes themes reflected care that was consistent with the person-centered framework principle and other time themes reflected care that was at odds with the person-centered framework principle.

Core Values and Philosophy

As the foundation of person-centered dementia care, Core Values and Philosophy prioritize the dignity and intrinsic worth of people living with dementia (Initiative, 2013). These values include recognizing each person’s unique identity and focusing on strengths over loss of abilities. As they described caring for their clients, HCWs focused on their clients’ personhood (theme 1.1) but also emphasized their client’s dementia and diminishing abilities (theme 1.2).

HCWs Focused on Their Clients’ Personhood by Recognizing Dementia as One Aspect of an Individual’s Existence and Describing Their Clients as “Like Family”.

When describing their clients, HCWs often highlighted their clients’ strengths. For example, one HCW described their client as someone “…with the problem of dementia and schizophrenia, but he is a person” (HCW 1). Moreover, HCWs also emphasized personhood through acknowledging their client’s personal preferences. One HCW mentioned, “She loves to go outside. If I was to take her out more than three times, she would go” (HCW 7).

HCWs often established familial bonds with their clients, further focusing on personhood rather than disease. One HCW expressed, “I love [the client] like a mother…she’s lovely and great” (HCW 11). This emotional bond motivated HCWs to see their clients as more than their dementia diagnosis. One HCW emphasized, “I don’t treat her like a patient. I treat her as if she were a member of my family. So, I am gentle and loving with her” (HCW 2).

HCWs Emphasized Their Clients’ Disease by Describing Dementia Symptoms as the Opposite of Normal and Analogies to Children to Describe People Living with Dementia.

HCWs sometimes described the progression of their clients’ dementia as abnormal and compared them to children, which diminished their client’s personhood. One HCW said, “…he is not in his right mind, he’s like a child” (HCW 1). Another HCW used before-after framing to center her client’s disease, saying, “Before, she used to do everything and you just help her. Now, you have to do every single thing for her” (HCW 4). These analogies were sometimes rooted in the HCW’s limited knowledge of who their client was prior to their dementia diagnosis. As one HCW explained, “It’s your patient, but it’s like a baby. But it’s difficult because many times…you don’t know what the person was like” (HCW 2).

Structural Elements

Structural Elements include factors like relationships and community, care partners/workforce, services, meaningful life and engagement and provide the building blocks for person-centered care (Initiative, 2013). Relevant to our study, the Dementia Initiative’s framework defines the “care partners” aspect of Structural Elements as viewing HCWs as integral to person-centered dementia care and playing a role beyond task completion. We identified themes related to relationships between HCWs when multiple HCWs provided care to a single person living with dementia (themes 2.1 and 2.2) and themes related to relationships between HCWs and family caregivers (themes 2.3 and 2.4).

Communication Between HCWs was Important to Providing Cohesive Care.

Communication and relationships between the multiple HCWs caring for a single client varied, with some primarily communicating about tasks and others sharing broader updates about their clients. For instance, one HCW described her work-based interactions with the other HCW, saying, “When [the other HCW] comes in…I tell her what’s going on…but other than that, we really don’t have a relationship” (HCW 7). Another HCW similarly shared, “I tell [the other HCWs] what they have to do…if I found the bathroom is dirty, I text them…That’s all” (HCW 3). In contrast, one HCW checked in with the other HCW outside of work, saying, “Sometimes [the other HCW] is very concerned…She has also texted me, ‘How’s Mr [client]?’…Even though she’s at home, I still have a communication with her.” (HCW 9).

Good communication between HCWs allowed for smoother transitions between shifts. One HCW described, “when [other HCW] relieves me or I relieve her…She gives me the rundown or I give her the rundown…We have a good communication on that” (HCW 6). However, when communication was not effective, tasks were sometimes left incomplete. For example, one HCW relied on the client’s family caregiver to communicate tasks to the other HCW, saying, “I tell [family caregiver] … if I don’t get a chance to clean the bathroom or something, ‘Tell [other HCW] to wash the bathroom’” (HCW 10). Another HCW facing a similar scenario expressed the importance of teamwork: “We’re working as a team.…we have to make sure this patient is okay. So, if [I] should tell you, ‘I noticed she was like this, she was like that,’ that doesn’t mean I’m attacking you” (HCW 8).

HCWs Advocated for Their Clients when They Felt that Other HCWs Were Not Meeting Their Clients’ Needs.

HCWs frequently described frustration about other HCWs not doing their jobs. For example, one HCW shared, “We’re taking care of somebody and everybody has to do his or her duty…Since I started working with [other HCW], she has never ever changed Ms [client]’s sheets” (HCW 8). Sometimes advocating for their client meant HCWs had to involve other members of a client’s team. When one HCW failed to report bruises on her client, the other HCW intervened by escalating the issue to the agency, saying, “…one HCW was working here and the patient…she fell. When I came, I saw bruises and I called the agency because I have to report that. That’s my job” (HCW 4).

Communication with Family Caregivers was Primarily Focused on Client Needs.

Many HCWs primarily reached out to family caregivers with requests related to household or care needs. For example, one HCW said, “I called [family caregiver] and said…you have to buy a bed for your dad” (HCW 1). When another HCW’s client exhibited increasing agitation, the HCW reached out to the family caregiver to emphasize the importance of arranging more doctor appointments to discuss strategies for addressing challenging behaviors, saying, “I told the daughter we haven’t had enough of doctor appointments in place, but I’ve been with her when she’s [agitated]” (HCW 6). Another HCW alerted the family caregiver about emerging needs, saying, “I told the daughter you have to tell her doctor...because [the client] doesn’t remember to eat and that’s so bad…they took her to the doctor and they gave her some prescription and right now, everything is okay” (HCW 8).

HCWs respected the role of family caregivers as the primary decision-makers for their clients. However, HCWs occasionally expressed disagreement with certain decisions. One HCW shared, “[The family caregivers] look at it, that I don’t need to be here, but I do need to be here because [the client] needs extra help. She cannot be on her own” (HCW 11). Another HCW shared, “[Family caregiver] likes to keep [client] up on like a strict, no sugar, low grain and carbs…I feel like, at this age, she should eat what she wants to eat; let her be happy, but I understand” (HCW 6). This HCW also stated, “Well, anybody that has a parent, they want to control what goes on in their environment, which they should but you also – well, you have an aide. You have to trust the people that come into her house to help your parent” (HCW 6).

Operational Practices

Operational Practices describe the broad processes that enable the day-to-day operations of person centered care, including training and opportunities to engage in meaningful activities with clients (Initiative, 2013). HCWs in our analysis felt that skills taught on the job were more applicable than their formal training (theme 3.1) and that care plans some-times restricted HCWs’ ability to engage in meaningful activities with their clients (theme 3.2).

For Many HCWs, on the Job Client Experience Prepared Them More than Formal Training.

HCWs often described that while their training courses were helpful, they were not as helpful as prior experience or learning from working directly with their clients. As one HCW stated, “I took the course to get the certificate, but I worked back home for 12 years. I know how to work with all kinds of patients and in any area” (HCW 1). Another HCW described how day-to-day practice differed from her training, saying, “They tell you about dementia…but to actually be hands-on is…totally different than what they train you” (HCW 7). Many HCWs similarly reported that the skills they needed could not be effectively taught in a classroom setting. One HCW said, “…it’s like being a mom. It doesn’t matter how many classes you’ve entered, you learn when you have a baby” (HCW 3).

The Care Plan Sometimes was a Barrier to Person-Centered Care, but HCWs Advocated Within and Around the Care Plan to Meet Clients’ Needs.

Home care agencies create care plans that outline the day-to-day tasks expected of HCWs. These care plans were not always comprehensive, with one HCW reporting, “I think there are two or three things that could go on the chart that aren’t there” (HCW 10). Care plans sometimes posed a challenge for HCWs to provide person-centered care due to the number of tasks that needed to be completed. For example, one HCW described, “There are things that you don’t do correctly because you don’t have enough time…There are so many things to do. You can’t always get everything done” (HCW 2). Prioritizing the care plan prevented HCWs from doing other meaningful activities with their clients. For instance, one HCW shared, “Ms [client] loves to go outside…but there’s other things that I had to do. I had to prepare her breakfast, I had to prepare her lunch, and I had to prepare dinner. So, that takes time” (HCW 7).

Despite these barriers, some HCWs still incorporated meaningful activities such as dancing with their clients. When asked if these were included in the care plan, one HCW responded, “No, it’s not part of the care plan…the agency tells you…use your judgment. Sometimes, I hold her hand and I sing. I dance for her. They don’t have to tell me to do that” (HCW 4). On the other hand, some HCWs followed the care plan exclusively. One HCW reported, “It tells me I have a plan of care. What I have to do, what I do not have to do. I can’t do something that’s not my task” (HCW 5).

Sometimes, HCWs described navigating around restrictions in the care plan to meet client needs. One HCW said, “We’re not authorized to cut patients’ nails. But I talked to his son and asked him to talk to the doctor so he could send someone to cut his nails and toenails” (HCW 1). The strong bond formed between this HCW and their clients was a motivator: “We do things that we are not permitted to do. But we do them. Why? For love!” (HCW 1). For another HCW, differences between the protocol and the reality of completing tasks meant she had to individualize her approach, saying, “What I’m supposed to do is put the medication on the table and help her get to the table and take it herself, but…I take it out and put it her in her hand…I’m not supposed to do that, but in her condition, you have to do it when she won’t take her medication” (HCW 7).

Individualized Practices for Person-Centered Dementia Care

Individualized Practices refer to the approaches to interacting with people living with dementia that support their personhood and recognize their unique personalities and interests (Initiative, 2013). HCWs developed individualized practices, including being observant and patient (theme 4.1), while also using their expertise and skills around dementia care to meet their clients’ needs (theme 4.2).

HCWs Reported that Being Observant and Patient Were Important to Supporting Their Clients.

Many HCWs highlighted the significance of patience and attentiveness in providing care to their clients. One HCW described her communication approach, saying, “With dementia, you cannot demand from them. Talk to them nicely and in details that these are the dos and don’ts… That’s it” (HCW 9). Moreover, HCWs emphasized the importance of being observant to notice their client’s needs. For example, one HCW recounted how she learned to be attentive, saying, “When I came out [of the bathroom], she was in the kitchen, she on the stove she’s trying to cook. Which is dangerous because she can’t cook. Since then, I had my eyes on her 24/7” (HCW 8). This HCW described being observant as a way of identifying and anticipating her client’s non-verbalized needs, saying “She can’t explain it, feel it and tell you this is how I feel…So, you have to feel for her…We have to be her eyes, her ears, everything to monitor her because she can’t tell us this or that” (HCW 8). Another HCW noted having to balance their tasks while also being observant, saying, “I am always watching her when I’m cooking” (HCW 10). Being observant also better equipped HCWs to further support the needs of the clients. For example, one HCW described taking on additional roles she had learned, saying, “While they were exercising, I was there…I saw the exercises. If the PT was not around, I was the PT sometimes” (HCW 9).

HCWs Developed Individualized Strategies to Meet Client Needs.

HCWs developed individualized strategies to address the specific needs of their clients, including responding to behavioral expressions when needs were unmet. This included effective communication techniques, such as re-orienting the client and avoiding arguments. HCWs also leveraged their knowledge of client preferences to offer distractions, such as watching familiar shows or offering favorite foods. In some cases, deception was a necessary strategy to meet certain essential needs such as taking medications. In addition, HCWs sought support from family caregivers and physicians to implement these strategies or create plans to meet their clients’ needs. Quotes describing these unique strategies employed by HCWs are presented in Table 3.

Table 3.

Representative Quotes of Individualized Strategies.

Strategy	Quotes
Comfort with familiar things	She likes cartoons…and when she gets like that, I [turn cartoons] on and…it really helps. (HCW 6) …she kept saying, “I’m hungry.” Like that, like a child…Then, I brought her like the little applesauce and then she just calmed down because she was eating something sweet. She likes sweets. (HCW 6)
Say “okay”	The biggest challenge for me is when he’s very agitated…I just say, “Okay.” All the time I say, “Okay.” No argument. No talking. …you don’t need to argue with them. (HCW 9)
Leave alone	There are days when she doesn’t want to bathe, you know, and I say, come on let’s get you bathed…She says, no, not now. If she doesn’t want to - I can’t treat her like a child who doesn’t know what she wants. It’s like that sometimes. She just doesn’t want to. I leave her alone then. Otherwise, she might get aggressive. (HCW 2)
Deception/distraction	Sometimes, I scrape the plate and say, “Look, she ate it all.” You got to play the role sometimes. (HCW 6) …[the client] said, “My mother is coming to get me.” I said, “Okay. I will call your mother in a few minutes and she would come and get you,” because you have to play along with it sometimes to calm her down…Then, [the client] mentioned it again…I called my mother on the phone and act like I was talking to [the client’s] mother…I was tricking her but it helped…By the time 10 o’clock came, she was already in the bed and she forgot about it. (HCW 6)
Re-orient/repeat	Sometimes she asks me where is the bathroom. She wants to go to the bathroom but she doesn’t know what way she’ll take to go to the bathroom. I have to repeat every time, “You have to go there; the bathroom is there.” (HCW 5) All day. Sometimes, at night, you got to remind her that she’s home. (HCW 7) When she tells me something, I say okay. Two minutes later, she can’t remember what she told me. (HCW 5)
Getting FCG support	It was so hard to convince her that she’s home, that I called [family caregiver]. [family caregiver] picked up, and I said, “Your mom is talking about going home, and I can’t take her back outside. It’s getting late.” So, [family caregiver] got on the phone..and she calmed down a little bit. (HCW 7) She really, really want to go out so badly...I told her daughter all that is happening, so they took her to the doctor and they gave her some medication which calmed her down. Like now, she’s eating and she’s sleeping for now. (HCW 8) I told the daughter you have to tell her doctor of this, this, this. So, maybe [the doctor] may have something for her because she doesn’t remember to eat and that’s so bad. (HCW 8)
Doctor/medication	The time of sundown is very important for Mr. [client]. He needs to take a pill for that hour, because it’s really difficult sometimes for Mr. [client]. (HCW 9) …the episodes are [not the same] as she got a new medication because the doctor put her on a new medication because I voiced to her that she was having a little outbreak like episodes in the afternoon mostly and in the morning a few times. (HCW 6)

Discussion

As more people living with dementia choose to remain living in their homes, providing person-centered care is a fundamental component of quality home care. We explored how HCWs were providing person-centered care for their clients living with dementia and found that HCWs prioritized their client’s personhood rather than their dementia and advocated for their clients’ needs. However, HCWs also encountered barriers to person-centered care, including limitations of their roles and challenging dynamics with other HCWs and family caregivers.

The foundation of person-centered care is recognizing an individual’s personhood beyond their illness. HCWs in this study often described their clients as friends or family, which the existing literature suggests helps to facilitate person-centered care (Breen et al., 2022; Goh et al., 2022; Hoel et al., 2021). Other times, HCWs focused on dementia as a disease and infantilized their clients. Some HCWs also reported that forming relationships with clients was made more difficult by the HCW’s lack of knowledge of their client’s personality and preferences prior to their dementia diagnosis. Consistent longitudinal interactions are helpful to develop any meaningful relationship and may be particularly important in the setting of dementia care (Reckrey et al., 2023). The HCWs in our studies had a wide range of time working with their clients, from 3 months to 18 years. Limiting HCW turnover through higher wages, consistent clients, and adequate health insurance could promote continuity of care (Butler et al., 2014; Scales et al., 2020). This may help HCWs to understand their clients’ unique personality and history and develop the relationships with clients and families that facilitate person-centered dementia care.

Even when HCWs viewed their clients as family, their day-to-day tasks often took priority when delivering care. Prior research on person-centered care in people living with dementia emphasizes that building rapport with clients requires focusing on the individual over completing tasks (Polacsek et al., 2020). Yet HCWs often face structural limitations, such as too many tasks to complete in limited time, which requires them to multitask and prioritize (Backhouse & Ruston, 2022; Breen et al., 2022; Goh et al., 2022). The task-focused nature of HCW responsibilities as outlined in agency care plans may make it more difficult for HCWs to form relationships and participate in meaningful activities with their clients. The focus on completing tasks may also contribute to HCWs’ limited communications with family caregivers, which were largely focused on reporting unmet needs rather than understanding clients and families as people. Other studies of HCW and family caregiver relationships reinforce the importance of collaborative care and the sense of disempowerment by both HCWs and family members when communication is poor (Franzosa & Tsui, 2021; Goh et al., 2022).

Unfortunately, inclusion of HCWs in health care teams is uncommon (Franzosa et al., 2022; McClement et al., 2009). Future work should consider how to best create and sustain person-centered dementia care teams that prioritize communication among the full care team—including HCWs—for people living with dementia who receive home-based long-term care. A helpful way to conceptualize team function is the “care convoy” model (Kemp et al., 2013, 2018). Developed in the assisted living setting, this model conceptualizes residents as embedded in “care convoys” composed of both paid and unpaid caregivers that are positioned within the assisted living facility and larger community. The function of this convoy impacts outcomes for all convoy members and when cohesive, convoys create shared responsibility with clear goals, which promoted communication and collaboration amongst convoy members. In addition, policy and practice initiatives can play an important role in establishing the importance of person-centered care teams. For example, the 2022 National Strategy to Support Family Caregivers explicitly outlines strengthening the direct care workforce as a vital step to supporting family caregivers (Living, 2022) and has contributed to greater public acknowledgement of the interdependence of HCW and families in the care of people living with dementia. Other policy initiatives such as the Centers for Medicare and Medicaid Services’ Guiding an Improved Dementia Experience (GUIDE) Model, which promotes a standardized interdisciplinary approach to comprehensive care for people living with dementia, could benefit from enhanced roles for HCWs on these teams (Guiding an Improved Dementia Experience Model).

HCWs drew from their experience more than their formal training to develop individualized approaches to meet their clients’ needs. While many HCWs had some level of formal training, those with experiences caring for a family member or another client living with dementia shared that those experiences best prepared them to care for their current client. Another study investigating HCW perspectives on their training found that while basic education programs were helpful in learning how to monitor symptomatic changes, the training around dementia was inadequate, and HCWs did not feel prepared to care for clients with dementia (Breen et al., 2022; Goh et al., 2022; Saragosa et al., 2022). Moreover, in a survey of family care-givers, researchers found that HCWs lacked appropriate competency around dementia specific care (Polacsek et al., 2020). Given this, formal HCW training could be modified to include practical components or a mentorship system with experienced HCWs to better prepare HCWs to provide care for clients with dementia; studies on HCW training have found that having newer HCWs shadow more experienced HCWs allowed them to gain valuable experience before working with their own clients (Backhouse & Ruston, 2022). As HCW training becomes more standardized, these trainings could be designed to explicitly discuss the principles and goals of person-centered dementia care to ensure that existing person-centered HCW practices are nurtured and alternatives to disease-centered HCW practices are introduced (Cook, 2017; Living, 2022). Importantly, given the diversity of HCWs and their clients, training also should explicitly acknowledge the diversity of cultures of both HCWs and people living with dementia and their families and how these cultural beliefs and practices shape caregiving.

This study had several limitations. While the rich interview data of the larger study provided a unique opportunity to consider person-centered care from the perspective of HCWs, the secondary data analysis approach did not explicitly explore themes related to a person-centered framework and participants were limited to the 11 HCWs who participated in the larger study. However, themes around HCWs and person-centered care emerged strongly in our analysis, which demonstrates that issues around providing person-centered dementia care are relevant for HCWs. Additionally, our sample is drawn from HCWs providing care to people living with dementia receiving specialized geriatric care in NYC, where high levels of Medicaid-funded home care are common. While some of our findings may be specific to this context, information about person-centered care in this sample will be increasingly relevant across the nation as home and community based long-term care services for people living with dementia continue to grow (Kreider & Werner, 2023).

In conclusion, many HCWs provided person-centered care to their clients with dementia despite existing emphasis on their task-based duties. HCWs also developed meaningful relationships with their clients and advocated for them to receive needed care, signaling opportunities to deepen HCW role on the care team. Training and supporting HCWs to provide person-centered care and recognizing their unique role in this care is an essential way to support people living with dementia in the community.

What this paper adds

• Home care workers provided person-centered care for their clients with dementia by emphasizing their client’s personhood and developing meaningful relationships with their clients.

• Despite existing emphasis on task-based duties and limitations to communication with family caregivers and other members of the care team, home care workers advocated for them to receive needed care.

• Recognizing home care workers’ unique role in providing person-centered care can enhance relationships with not only their clients but also family caregivers.

Applications of study findings

• Training and supporting home care workers to provide person-centered care, and recognizing their unique role in this care, is an essential way to support people living with dementia in the community.

• It is important for future interventions to work towards a more person-centered health care team that includes not only medical professionals communicating with family caregivers, but also the client and their home care workers. This provides an opportunity to deepen the role of home care workers on the care teams.