When Do Paid Caregivers Support the Health of Older Adults? Geriatrician Perspectives

Abstract

Despite the potential of paid caregivers (e.g., home health aides and other home care workers) to improve their clients’ health-related outcomes, paid caregivers are rarely integrated in the healthcare team. Geriatrician’s perspective on paid caregivers can inform healthcare team approaches that leverage the paid caregiver role to improve older adult health. This secondary qualitative analysis (n = 9 geriatricians, n = 27 interviews) used thematic analysis to identify geriatrician perceptions of when paid caregivers do the most to support the health of older adults. Geriatricians perceived that paid caregiver contributions were greatest in the care of high-needs older adults (e.g., dementia) and that paid caregivers stepped up to fill healthcare gaps when families could not provide all needed support (e.g., no family). Future work should consider how to best integrate paid caregivers who are already providing health-related support into the care team and explore barriers to paid caregiver participation in health-related care more generally.

Background

As older adults live longer in the community despite increasing functional impairment, they must increasing rely on not only family caregivers but also paid caregivers (e.g., home health aides, personal care attendants, and other home care workers) to meet their home-based care needs (Reckrey et al., 2022; Reckrey et al., 2023; Riffin et al., 2017; Schulz & Eden, 2016; Shaw et al., 2021; Smith et al., 2013). In addition to providing functional support (e.g., help with bathing), paid caregivers frequently support the overall health of those they care in duties like monitoring chronic health conditions, encouraging healthy behaviors, communicating with the healthcare team, and supporting mental health and psychosocial well-being (Franzosa et al., 2019; Reckrey, Tsui, et al., 2019; Sterling et al., 2018, 2022).

Despite the potential of paid caregivers to positively impact the health of their clients, paid caregivers themselves report that they are rarely integrated into the healthcare team (Reckrey, Geduldig, et al., 2019; Sterling et al., 2018; Stone & Bryant, 2019). Isolated pilot projects seek to maximize the impact of paid care on the team-based healthcare of older adults by training paid caregiver to help with tasks like exercise or chronic care management (Muramatsu et al., 2017; Russell et al., 2017). However, such approaches may have limited impact when not aligned with the goals and perspectives of the healthcare team. While their knowledge of the role of paid care (i.e., the tasks they perform and their part in the care team) in the health of any given person with dementia is variable (Reckrey et al., 2024), geriatricians often lead interdisciplinary care teams and have knowledge of both the health and functional needs of their older patients. This makes them uniquely poised to bridge the divide between paid caregivers and team-based healthcare. Because of this, geriatrician perspectives about if and when paid caregivers support and contribute to the health of older adults can guide the development of targeted approaches that leverage paid caregivers to improve the health of older adults living at home.

In this study of existing qualitative data, we aimed to explore geriatrician perspectives on when paid caregivers do the most to support the health of their clients.

Methods

Study Overview and Participants

This study analyzed data collected during a larger multi-perspective, longitudinal qualitative study (2020–2022). The parent study examined the perspectives of geriatricians (n = 9), family caregivers (n = 9), and paid caregivers (n = 11) about the role of paid caregivers in the care of an index person living with moderate to severe dementia (n = 9) and how care changed over time. Participants were recruited via geriatricians providing care in three distinct but affiliated geriatric primary care practices in New York City; 10 geriatricians with large primary care panels were approached to participate and 9 agreed. While the larger study sought to contrast participant perceptions of dementia care, geriatricians also discussed their general perceptions about the variability in if and how paid caregivers support the health of the older adults in general. These perspectives were explored in this secondary analysis of geriatrician interview data to better understand opportunities to integrate paid caregivers in healthcare team and leverage them to improve health outcomes for older adults (n = 9 geriatricians, n = 27 interviews).

Data Collection and Analysis

Interviews were conducted in English via HIPAA-compliant Zoom or over the telephone, audio recorded, and professionally transcribed. Interviews were analyzed using thematic analysis (Guest et al., 2012). All interviews were reviewed in their entirety and a preliminary codebook was developed to reflect emergent themes about the older adult, family, paid caregiver, and structural factors contributing to paid caregivers support of the health of their older clients. The codebook was applied to initial interviews, refined, and subsequently applied to all transcripts by two members of the research team (LVE, JMR). Coded interview data were discussed by the full research team to identify themes and subthemes. Dedoose qualitative software was used to manage the data. The Mount Sinai Institutional Review Board approved this study (19-01206).

Results

All geriatricians (n = 9) were fellowship-trained, female, and their race/ethnicity was evenly distributed among Asian (3 of 9), Hispanic (3 of 9), and non-Hispanic white (3 of 9). Their years in practice ranged from 1.5 to 18 years. In general, geriatricians voiced appreciation of paid caregivers’ support of older adults and usually knew which of their patients received paid care. While interactions between geriatricians and paid caregivers were minimal in some cases, all geriatricians could easily identify specific examples in which paid caregivers did more to support the health of their older clients. Thematic analysis identified three major themes (each with subthemes) corresponding to older adult, family caregiver, and paid caregiver factors that geriatricians reported informed when paid caregivers did the most to support the health of their older clients (Figure 1).

Figure 1.

When do paid caregivers support the health of older adults?

Theme 1) Paid Caregivers Contributed More to the Health of High-Needs Older Adults

Geriatricians identified a range of physical, cognitive, and emotional needs among older adults that were associated with paid caregivers supporting their older clients’ healthcare needs (Table 1). For example, geriatrician ID 4 described a patient with supranuclear bulbar palsy and speech difficulties who completely relied on her paid caregiver to communicate with the geriatrician. Geriatricians also commonly highlighted the importance of paid caregivers for people with dementia who could no longer reliably self-report their condition or manage their own care needs. Geriatrician ID 5 described, “I think with dementia the problem is the safety because obviously, the patient a lot of the times cannot control what’s going on and know what’s right or what’s wrong. So, you have a lot more onus on the aide to be able to take care of that patient appropriately.” Geriatrician ID 9 explained how high emotional needs also meant paid caregivers were doing more to support health: “I think of some of my severely depressed and anxious patients—how much more intensive that is for those home attendants because they’re also providing often emotional support too.”

Table 1.

Geriatrician Perspectives About When Paid Caregivers Do the Most to Support the Health of Older Adults.

Theme 1) Paid caregivers contributed more to the health of high-needs older adults

[If the] patient has a lot of medical issues and lots of going on, the aide would also be concerned and help as well. versus you have a patient who only needed a few things, and the home is done and only has two medications they are taking or some sort. The aide probably won’t be as hands on. (ID 2)

Subtheme 1a: The older adult must be willing to accept help

I’ve seen patients literally fire home attendants because they thought they were too involved or they talk too much or they had too much of an opinion about things…. Sometimes you’re like, “Wow, your home attendant was great. She called and advocated for you,” and the patient was like, “No, she’s too opinionated,” or “She’s too strong.” [And I think], “Oh okay. I thought that was a good thing.” (ID 9)

Theme 2) Paid caregivers step up to fill healthcare gaps when family can’t provide all needed support

I have a hospice patient who has no immediate family. The only person, a healthcare proxy, is going [between] Puerto Rico and here… So, the aide talks back and forth with the hospice nurse… She arranges all the visits to doctors, she’s there when I do the telehealth visit, we do it through her phone… I think what happens is [the paid caregivers] step up to fill the gap… it’s definitely a gap, there that no one else wants to fill it. (ID 8)

Subtheme 2a: Families choose whether to delegate healthcare responsibilities to paid caregivers

I definitely have had visits where the family will say, “We’ll defer to what the home attendant says” because they’re with them more of the time and they trust them… [Other times the families] feel like they’re the ones who should be the ones speaking or advocating. That could also probably intimidate the home attendant or put that hierarchy in place where it’s like, “Okay I’m the one, I’m the child or I’m the healthcare proxy and you’re just the day to day caregiver.” I’ve seen that too. (ID 9)

Theme 3: “Good” paid caregivers go the extra mile  There’s a range, right? There’s a range of aides that are very invested in people and their families. Then there are aides that are just collecting a check pretty much and do the very bare minimum. Sit on their phone all day. (ID 6)

Subtheme 3a) Privately hired paid caregivers have more freedom to engage in care

“[Privately hired paid care] makes a difference in how we’re going to change meds, because then, when I speak to the aide who’s a private aide, I can tell them, “Okay, we’re going to remove this medication today,” so then, they can go ahead and remove it from the pillbox, or do something, et cetera. If it’s not a private aide, they can’t do that. (ID 2)

Subtheme 3b) Paid caregivers become more involved in the healthcare team over time

After [the patient and family] have known [the paid caregivers] for a while and they’re good, then they assume… more responsibility. (ID 3)

The care of these high-needs older adults was contrasted to care of older adults where less was asked of the paid caregivers. As geriatrician ID 6 described, “A lot of these patients just need someone around to go shopping, light house-keeping, and that’s all they do. It’s not a super challenging job, and I know why [the paid caregivers] just sit on their butt and they just look at their phones.” At the same time, geriatricians described that the older adult must be willing to accept help (Subtheme 1a) (Table 1). If they were not, paid caregivers’ role was minimal even if significant care needs were present.

Theme 2) Paid Caregivers Step Up to Fill Healthcare Gaps When Family Can’t Provide All Needed Support

Geriatricians all reported that families were primarily responsible for meeting patient’s healthcare needs, yet sometimes families could not provide all needed support. This happened in a wide range of circumstances: when there was no family at all, when family provided care long-distance, when a patient lived alone, and when available family was uninterested or unable to provide support. Geriatricians described these situations as creating care “gaps” that paid caregivers could fill (Table 1). These gaps were most apparent in the setting of cognitive impairment when even the most involved family caregivers needed paid caregivers to provide information they could not: “When the patient is not a good reporter because of their cognitive deficit [and] the family may not physically be there. So, I want a description of, ‘Okay, what does that lesion on her leg look like?’… This is information the home attendant has, not the family.” (ID 4)

However, geriatricians also described that families choose whether to delegate healthcare responsibilities to paid caregivers (Subtheme 2a) (Table 1). All geriatricians emphasized the importance of getting permission from not only older adults themselves but also their families before engaging paid caregivers in patient care. Different families had different expectations for paid caregivers and what they could contribute to care. Geriatrician ID 9 explained, “You can tell whether the family sees the home attendant as an employee versus seeing them as like an extension of their family” (ID 9).

“Good” Paid Caregivers Go the Extra Mile

Geriatricians perceived that personal characteristics of the paid caregivers themselves (e.g., motivation for the job and emotional commitment to their clients) impacted the degree to which paid caregivers were involved in care (Table 1) and frequently described some paid caregivers as “bad” and others as “good.” In their view, “bad” paid caregivers did the bare minimum (or less) and seemed not to care about their client. “Good” paid caregivers were engaged, caring, present, and were willing to provide more comprehensive care, which was especially important when care needs were high or patients had cognitive impairment. Geriatricians generally acknowledged that most paid caregivers were “good,” but they also did not necessarily expect paid caregivers to bring this level of care to their work and that paid caregivers did not need to have these qualities to adequately perform their job. Geriatrician ID 7 explained, “The thing [is] if they do the job they need to do… if you see their diaper is clean, a little bit neat and tidy…. In that case it means… [that the paid caregivers] are doing their duty as a home caregiver. They may not notice small changes. They may not notice what medication she is on. But at least they are doing their job. It is okay.”

In discussing “good” paid caregivers, geriatricians also described how privately hired caregivers have more freedom to engage in care (Subtheme 3a). Geriatricians reported that they could ask privately hired paid caregivers to help with tasks like giving medications, checking vitals, and monitoring clinical conditions. They described that paid caregivers who worked with agencies (particularly when funded by Medicaid) had more, often confusing rules about what they could and could not do within their scope of practice and geriatricians were hesitant to ask paid caregivers to perform healthcare-related tasks that might get them in trouble with their agencies. Finally, geriatricians specifically identified the way that paid caregivers become more involved in the healthcare team over time (Subtheme 3b) because time allowed trust and mutual understanding to develop.

Discussion

Geriatricians described older adult, family, and paid caregiver factors that contributed to paid caregivers support in the health of their older clients. The findings provide important insight about when paid caregiver integration with the healthcare team is especially important and should inform models of clinical care that seek to leverage paid caregivers to support the health of older adults in the community.

Geriatricians felt that paid caregivers do more to support patient health when patients’ physical, cognitive, and emotional needs are the greatest. While this may appear to be an intuitive finding in clinical settings, it is at odds with the one-size-fits all approach to paid caregiver training and compensation. Innovative, competency-based approaches to paid caregiver training that emphasize additional skills matched to unique patient needs (e.g., dementia training and advanced aide certification)—paired with commensurate increases in paid caregiver compensation to reflect these additional skills—will help make it possible for patients with high care needs to be matched with paid caregivers who have the skills to meaningfully participate in the team-based care of high-needs older adults (Goh et al., 2018; PHI, 2023; Spetz et al., 2019).

Geriatricians acknowledged how family needs and preferences shape paid caregiver roles, consistent with growing national acknowledgment of the interdependence of paid and family caregivers (Recognize, Assist, Include, Support, & Engage (RAISE) Family Caregivers Act Initial Report to Congress, 2021). While geriatricians describe the important ways that paid caregivers fill healthcare gaps, they also perceived families as gatekeepers and needed their approval to include paid caregivers as collaborative members of the healthcare team. This finding speaks to the importance of explicit communication about care roles among providers, older adults, families, paid caregivers, and home care agencies. Models of clinical care for older adults that fail to recognize how paid caregivers are accountable to not just healthcare providers and home care agencies, but also older adults and families may not be able to effectively facilitate paid caregiver–healthcare team collaboration.

Geriatricians also described the importance of characteristics of paid caregivers themselves: they described what they called “good” paid caregivers as caring and motivated by their own personal dedication to their clients. Missing, however, was an acknowledgment of how the structure of the paid caregiver job itself may contribute to how “good” a paid caregiver can be. For example, long-standing relationships between paid caregivers and patients were seen as contributing to “good” care, but turnover within the paid care workforce is high and driven by many factors beyond worker dedication including low wages, few benefits, and part-time work arrangements (PHI, 2023; Scales, 2022). Future work should explicitly assess the connection between paid care job structure and the quality of paid care delivered (Cooper et al., 2017; Franzosa et al., 2018) and explore how paid caregiver training could reframe characteristics perceived as internal to paid caregivers (e.g., being a good listener) to teachable skills (e.g., learning active listening.)

The importance of paid care for the health of people with dementia emerged across all study themes. People with dementia in the community receive high levels of paid care, particularly as dementia advances (Reckrey et al., 2020, 2023). Unfortunately, existing models of comprehensive dementia care rarely explicitly engage paid caregivers as part of the care team despite growing interest in home-based dementia care (Samus et al., 2018; Stone & Bryant, 2019). However, alternative payment models like CMS’s recently introduced Guiding an Improved Dementia Experience (GUIDE) Model (Haggerty et al., 2023) are structured to support team-based care and care coordination have the potential to incentivize meaningful integration of paid caregiver not just as sources of respite for family caregivers, but as contributors to high-quality dementia care in the home setting.

This study had several limitations. While the present analysis leveraged nuanced, existing qualitative data that explored the paid caregiver role in healthcare, focused questioning of interviewees to further develop emerging themes wasn’t possible in this secondary qualitative analysis. In addition, the perspectives elicited were those of geriatricians practicing in a single academic medical center in New York—a state that provides extensive Medicaid-funded paid care in the home (Reckrey, Tsui, et al., 2019)—and may not reflect the experiences and perspectives of providers in other settings. Importantly, this study’s findings reflect perspectives of geriatricians who may not always be aware of the nuances of paid care at home (Reckrey, Geduldig, et al., 2019) and findings should not be interpreted as a definitive accounting of when paid caregivers support older adults at home.

Conclusion

Our findings provide important insight into when paid caregivers do the most to support the health of older adults; future work should explore barriers to paid caregiver participation in health-related care more generally. These results can help guide clinical care models to leverage paid caregivers as members of the care team in situations where they are already providing meaningful health-related support.

What this paper adds

• Geriatricians identified key older adult, family, and paid caregiver factors that contributed to the degree to which paid caregivers support the health of their older adult clients; structural factors that may impact paid caregiver role were rarely mentioned.

• Geriatricians described that paid caregivers often did more to support older adult health when they were caring for people with dementia.

Application of study findings

• These findings can help guide clinical interventions and outreach to integrate paid caregivers in the healthcare team.

• Targeted policies to support and educate paid caregivers who care for older adults who could benefit from health-related support may help maximize the potentially positive impact of paid caregivers in the home.