“There Should Be a Nurse on Call”: Complex Care Needs of Low-Income Older Adults in Medicaid-Supported Assisted Living

Abstract

Background:

In the United States, nearly 1 million older adults reside in assisted living facilities, which aim to provide support for safe, autonomous living. However, low-income residents, especially those in Medicaid-supported facilities, experience unmet medical and social complex care needs and limited serious illness communication due to limited resources.

Objective:

The objective of this study was to explore the complex care needs and serious illness communication challenges experienced by low-income older adults in Medicaid-supported assisted living.

Methods:

A qualitative secondary framework analysis was conducted on data from a parent qualitative study involving 17 residents aged 60 and older with serious illnesses at a Medicaid-supported facility in New York City. Residents completed the Edmonton Symptom Assessment Scale and participated in semistructured interviews. This study was guided by the National Consensus Project for Quality Palliative Care, focusing on the residents’ experiences, complex care needs, and communication within palliative care domains.

Results:

Residents were predominantly Black and Hispanic, with nearly one-third having a history of homelessness or shelter use, and they experienced a high symptom burden. Four key themes emerged: (1) compromised quality of life; (2) high symptom burden and limited access to care, with residents reporting pain, fatigue, and emotional distress; (3) communication gaps while navigating health care, resulting in frustration and feelings of being unheard; and (4) fragmented care coordination, which exacerbated feelings of isolation and mistrust in the health care system.

Conclusion:

The findings reveal that Medicaid-supported assisted living residents encounter substantial challenges related to complex care needs and serious illness communication. There is an urgent need for community-based interventions to enhance care access, improve symptom management, and facilitate effective communication, ultimately supporting the residents’ quality of life and health outcomes. Enhanced training for staff and policy changes are key to addressing these systemic barriers to care.

Key Message

Assisted living residents in Medicaid-supported settings face critical gaps in medical and social care. Residents experience high symptom burden and persistent unmet needs, further complicated by fragmented health care access. The study emphasizes the urgent need for programs that improve communication and provide medical and social care in under-resourced settings.

Introduction

Nearly 1 million older adults in the United States receive care in assisted living facilities. In addition to housing, residents are provided with food, a structured social community, and functional support to preserve autonomy, avoid hospitalization, and receive care.¹ Assisted living allows older adults to maintain their quality of life and preserve their ability to age in place.² However, older adult residents of assisted living facilities typically have many active medical and social care needs requiring regular nursing care, which often go unnoticed or unmet, especially among those residing in lower-resourced settings (e.g., Medicaid supported). In many assisted living settings, a registered nurse (RN) responsible for managing the health, wellness, and family communication for the residents, who also may supervise direct care staff, can be beneficial in supporting and meeting the residents’ medical and social needs. However, residents who reside in under-resourced assisted living settings may not have access to nursing services delivered by RNs, as most care is delivered internally by nursing assistants, who may not be prepared to manage complex medical and social care needs.

Across the United States, assisted living services are expensive and financed through various means. Assisted living is typically financed through private pay, long-term care insurance, and through limited Medicaid coverage using waiver programs that vary by state. The median cost can be approximately $5,000/month.³ Older adults and their families frequently incur additional costs not covered by health insurance, which is more significant among lower-income residents who primarily rely on Medicaid. Access to assisted living is complicated by the limited availability of affordable facilities. Nursing home care, comparatively, encompasses 24-hour skilled nursing care, which is regulated by federal and state policies, and up to 70% is covered by Medicaid.

Medicaid-supported assisted living facilities provide housing and limited support for socially vulnerable individuals, many of whom are from historically underserved groups in resource-poor environments.^4–6 However, these facilities remain consistently underfunded as they cannot meet the increasingly complex care and medical needs of seriously ill older adult residents.⁶ Many lack the medical infrastructure, resident-centered policies and procedures, and skilled staffing to support the medical and social needs of residents.^7,8 Without support, residents with complex medical needs are at risk for hospitalization and premature nursing home placement.

Conversations surrounding care needs are often delivered through tailored serious illness communication. Serious illness communication is essential for the many assisted living residents with multiple chronic conditions to manage their clinical complexity through informed decision making and procurement of needed services.⁹ These conversations can identify decisions about medical care, ongoing treatments, and medication regimens, as well as social and cultural norms and expectations that impact the resident experience.¹⁰ However, assisted living facilities that are primarily Medicaid supported are neither viewed as primary sources of medical care nor conceptualized as resources for older adults seeking medical care, despite strong evidence that their residents have high-level medical and social needs.¹¹ Because assisted living is not typically viewed as a setting of regular medical care, providing serious illness communication can be a challenge. Often, residents may share concerns or needs with nursing assistants or other staff, who may not be equipped to facilitate these conversations or have the resources to follow through on appropriate connections to medical and social services.

Residents in Medicaid-supported assisted living facilities often have complex health challenges due to limited access to transportation for medical appointments and inability to afford supplemental services not covered by Medicaid. They may experience higher rates of preventable hospitalizations and emergency department visits compared with private-pay residents. These social determinants of health strongly influence how and to what extent residents interact with the health care system, and these issues seldom receive the attention and resources needed to improve the delivery of medical and social care in assisted living.¹² Concurrently, a scarcity of evidence focusing on the unique needs and perspectives of socially and medically vulnerable older adults in these settings precludes the development of tailored support programs.⁵ Data are needed that can inform Medicaid policy and improve resident access to community-based medical and social care to address the complex care needs of seriously ill older adults.^6,13

Providing optimal resident-centered serious illness communication to address complex care needs also remains a major challenge in a limited funding environment and requires sustainable, community-driven solutions in the absence of readily accessible nurses and other health care professionals.¹⁰ Additionally, there are not enough health care professionals who frequently care for residents within assisted living facilities to have serious illness conversations that may be crucial for addressing complex care needs. The absence of resident-centered research in assisted living further limits the development of programs and policies that improve experiences and outcomes. Residents’ needs cannot be addressed without rooting research in the reality of their experiences and perspectives.¹⁴

We investigated broad care-seeking and psychosocial needs among low-income older adults in assisted living settings. In this study, participants expressed additional challenges in addressing complex care needs and with serious illness communication.⁵ Therefore, we used the National Consensus Project for Quality Palliative Care’s eight domains of high-quality palliative care delivery, often used to meet the complex care needs of seriously ill patients, to conceptually guide our study.¹⁵ The objective of this study was to conduct a qualitative secondary analysis to explore and understand the complex care needs and serious illness communication challenges experienced by low-income older adults in Medicaid-supported assisted living.

Methods

The parent study was a multimethod, qualitative-dominant, descriptive study in a Medicaid-supported assisted living facility in New York City between June and November 2021 to understand the care needs of low-income older adults in assisted living.⁵ Participants were residents who lived in the facilities for six or more months and were aged 60 or older with a serious illness. Participants completed the revised Edmonton Symptom Assessment Scale by rating the severity of their common serious illness symptoms on a visual analog scale from 0 (no symptoms) to 10 (worst possible symptoms).^16,17 We then conducted in-person, semistructured, 30–90-minute interviews with residents (n = 14), which were recorded, professionally transcribed, and transferred to Atlas.ti (23.3) qualitative software for analysis. The Standards for Reporting Qualitative Research tool was used to guide and report this work.¹⁸ For the primary analysis, the coding team (D.D. and R.L.) used a conventional content analysis approach involving open coding of the first five transcripts, after which a code key was developed using the remaining transcripts.⁵ Coders met with the whole study to adjudicate discrepancies. To establish rigor, quality, and trustworthiness in the data analytic process, we used member checking, audit trials, external audits, and negative case analysis.^19,20

For the secondary analysis focused on complex care needs and serious illness communication, we used the framework method because it allowed for further investigation into the residents’ experiences and views related to complex care needs and serious illness communication.²¹ The framework method allows for an adaptable method for additional qualitative analysis seeking answers to a different but related phenomenon. This method was chosen specifically because it allowed for maintaining consistency and rigor when working with preexisting data and supported the researchers’ abilities to easily compare and contrast new themes both within and across participants.

The coding team (D.D. and K.P.M.) developed the analytic framework using previously determined codes and was conceptually guided by the National Consensus Project for Quality Palliative Care.¹⁵ The framework method analysis was developed by mapping qualitative data to the eight evidence-based domains of quality palliative care, which are conceptually aligned with addressing complex care and serious illness communication needs. These domains included: the structure and processes of care; physical aspects of care; psychological and psychiatric aspects of care; social aspects of care; spiritual, religious, and existential aspects of care; cultural aspects of care; end-of-life care; and ethical and legal aspects of care.¹⁵

First, we organized codes and associated quotes from the parent analysis under the eight palliative care domains (Table 2). Next, we created a visual representation of the framework in the form of a table that organized experiences and views related to complex care and serious illness by the eight domains of palliative care. After completing the visual representation, the coding team determined that insufficient evidence in the last three domains of care (cultural, end of life, and ethical/legal) necessitated their removal from the thematic analysis to ensure rigor and accurate representation of participants’ experiences. For the remaining domains, the coding team identified representative codes and quotes and performed thematic analysis, producing themes and subthemes. Triangulation of quantitative symptoms assessment with qualitative responses was conducted, as symptom burden is a key characteristic of serious illness and complex care needs.²² After two rounds of discussion with the team, themes, subthemes, and representative quotes were finalized. This study was approved by the New York University Institutional Review Board.

Table 2.

Themes, Representative Quotes, and Corresponding NCP Domains from the Framework Analysis

Theme 1: Compromised quality of life
•When I get tired, walk up the little hill you parked right there just to get to the bus, I sit in the bus stop right there. I sit right there in that bus stop, and I sit for a few minutes till it goes away. Then I go ahead and continue doin’ what I gotta do. (R17) •It’s just little things that just make me happy. To me, I’m glad I was born. I learned so many different things from my grandmother, from my mother’s mother. That lady loved to—she loved me like I don’t know what, that lady there, my grandmother. I learned how to deal with sickness from her. (R13) •What I need is I wanna be able to have my independence. When I wanna go out the door, I wanna go out the door. If I decide I don’t wanna come home, I’m not gonna come home. If I go out the door, do whatever. I’ll come back (R13)	Physical aspects of care Psychological and psychiatric aspects of care Spiritual, religious, and existential aspects of care
Theme 2: High symptom burden and limited access to care
•I’ve been hospitalized in the last few years. I was hospitalized this year, but not for anything medically wrong with me. I have these boils that turn up in weird places whenever. They tell me I have to—I can’t take care of them. Here cannot take care of ‘em, either, so anything happenin’, you gotta go to the hospital. That’s why I went. (R14) •The hardest part is when they don’t have a good doctor. For example, if I had money or whatever it is, after I was [unintelligible 00:46:05], if I had money for the doctor, they would give me physical therapy. I would be walking okay. You know that, right? (R10) •It was hard for me to stand up, hard for me to sit down. Then the first thing they wanna do is call the emergency room for the ambulance. Basically, I just need to take the medication and just lay down and relax. When it gets to a point where the pain I can’t tolerate anymore, then that’s when I will go for the medical help. (R13)	Structure and processes of care Physical aspects of care
Theme 3: Communication gaps while navigating health care
•The (staff) who have a lot to do with your life, and they seem like they wanna come in and be controlling in certain areas because it’s better for them. It’s not better for you. I said, “Well, where do I fit in, in this? Just be your robot? What would you like out of me? What do you want?” Those things, I have problems with quite a bit. A lotta times, you just sit down and say, “Okay, we’re gonna give it a try and see what it’s gonna bring about.” A lotta the times, I end up sayin’, “Oh, hell no.” Excuse me. (R08) •I was in a lot of pain. When they tried to help me to sit down, ‘cause I couldn’t sit down, my whole body just started. I was screaming to the top of my lungs. That’s when they call the ambulance. (R06) •It’s just the person be able to keep their dignity. Talk to us like we’re humans. Talk to us, not talk down to us. Many of times, that’s happened. It gets to a point now when [personnel] sees me, she just runs (R13)	Structure and processes of care Social aspects of care
Theme 4: Fragmented care coordination
•It’s a assisted livin’ facility, and sometime when you need the assistance, you won’t receive it from the staff here. Sometime they do the best they can. Sometime they won’t do that even, but quality of care in the health industry is not where it should be. (R11) •What am I gonna do now? How am I gonna be able to pay my rent and pay the credit cards? How I’m gonna do this? so I had to find out where I’m gonna go, so I just researched, and that how I went to (temporary housing). They gave me housin’, and you can only stay here for maybe a year or whatever, so now it’s pushin’ crunch. (that’s how) I came into assisted livin’. (R17) •When the place first opened, 11 people worked in the wellness center. Out of those 11, we only have 2 left, so they have 9 new people. When you talkin’ to some of ‘em, they have no idea what you’re talkin’ about, so it’s a matter of there’s no way you can literally communicate with ‘em, so you have to do certain things yourself, but that’s what it is. (R11)	Social aspects of care Structure and processes of care

Results

Sample characteristics

Participants (N = 17) (Table 1) had an average age of 74.2 years and were predominantly Black and Hispanic residents. Nearly a third reported a history of homelessness and/or shelter use. Residents expressed struggles with immigration, exposure to violence, drug and alcohol use, high rates of anxiety and depression, and unmet serious mental health needs, as previously reported.⁵ Overall, participants had comorbid serious illnesses including end-stage renal disease, chronic obstructive pulmonary disease, cardiovascular disease, cancer, and cerebrovascular disease. On the Edmonton Symptom Assessment Scale, residents reported a high number of troubling symptoms (mean = 5.2 symptoms) and a severe symptom burden (mean severity score = 7.6/10) for their most troubling symptom. The most common symptoms were pain (76%), fatigue (76%), and feeling depressed (59%).

Table 1.

Participant Characteristics and Symptom Experience (N = 17)

Race/ethnicity
Black	76%
Hispanic	6%
Female (%)	65%
Age (years, SD)	74.2 (5.5)
History of homelessness/shelter use	29%
Resident experience and mental health
Immigration	47%
Exposure to violence	33%
Problematic use of drugs/alcohol	40%
Anxiety	47%
Depression	27%
Symptom experience
Presence of troubling symptoms (out of nine symptoms)	5.2
Severity of most troubling symptom—scale (0: no symptoms; 10: worst symptom experience)	7.6

SD, standard deviation.

Context for the secondary analysis

In New York City, residents qualify for Medicaid-supported assisted living programs if they meet financial criteria and have a need for functional support. Generally, residents in these facilities have some preserved mobility to support self-care yet require additional functional support to manage independently with resources provided through Medicaid. Housing and services are funded through Social Security and Medicaid reimbursement. In exchange for relinquishing their social security check to the facility for room and board, residents in this study receive a monthly $233 allowance, must coordinate with the facility when leaving the premises, and spend no more than 10 nights away from the facility in one year. Medicaid reimbursed approximately $180 per night the resident remained in residence, depending on the level of functional support required.²³

Resident perspectives

We identified four themes related to participants’ complex care needs and serious illness communication (Table 2). These themes were organized by the domains of palliative care upon which the framework analysis was built and the five related palliative care domains including the structure and processes of care; physical aspects of care; psychological and psychiatric aspects of care; social aspects of care; and spiritual, religious, and existential aspects of care. The themes were (1) compromised quality of life, (2) high symptom burden and limited access to care, (3) communication gaps while navigating health care, and (4) fragmented care coordination.

Theme 1: Compromised quality of life

Residents experienced severely compromised quality of life, struggling with both the physical burdens of chronic illness and systemic barriers within assisted living facilities, as powerfully expressed by one resident who critiqued the focus on longevity over quality: “Listen, 2,000 years ago, the average age of death was 40. They’ve got us living longer, but most of us are not living with much quality, but we’re living longer, with busted ass lives. Everything is different when you’re old. (R16).” This diminished quality of life was further compounded by feelings of purposelessness and dissatisfaction with care delivery systems, evidenced by residents’ experiences. For example, one resident articulated a sense of emptiness stating “That’s another thing that I think that it’s not good. I don’t have no—much meaning to my life. I don’t have nothin’ to look forward to here. (R02),” whereas another highlighted the troubling disconnect between caregivers and residents, noting “The whole thing is that they fail to realize that y’all gonna be in our shoes one day. If you don’t know how to treat the people now, how are you gonna know what to expect when you get there? (R13)”?

Compromised quality of life was compounded by assisted living policies and procedures that place restrictions on how residents prefer to go about their day. One participant provided an example of a facility-imposed process that impacted their sleep. Residents are awakened every morning at 9 am to confirm their adequate health, which was perceived as disruptive and responsible for poor sleep. With animated ambivalence, the participant explained, “They seem like they wanna come in and be controlling in certain areas because it’s better for them. It’s not better for you. I said, ‘Well, where do I fit in, in this? Just be your robot? What would you like out of me? What do you want?’ (R08)”

While participants expressed general disapproval of rules, an adaptive response featuring coping and resilience was frequently demonstrated. One participant shared: “I deal. When I’m backed against the fence and I’m at the fence, then I maneuver. I get outta there. When they told me I had cancer, ‘Okay? I got cancer? What we do?’ It’s not like, ‘Oh, no,’ somethin’ like that. I’m not that type. I just deal with it. Well, what do we do from here? That’s how I deal with that. (R17)” Thus, the presence of unaddressed complex care needs often results in compromised quality of life. Concurrently, many residents experienced varied coping and resilience, often without needed serious illness communication and medical care.

Theme 2: High symptom burden and limited access to care

Participants’ pain, fatigue, and depression were affected by their high symptom burden from comorbid medical conditions. A participant with heart disease and orthopedic challenges described: “I can’t sleep on my right side, and it wakes me up at night. It’s so severe, it wakes me up at night. Sometime it’s hard for me to get to the bathroom because my leg hurts so bad, and I can’t hardly get out of bed. (R05)”

Residents frequently mentioned physical symptoms such as pain and mobility challenges and a general lack of access to care. Resident-led care-seeking and communication played a primary role in how symptom management was addressed. A participant shared an experience with accessing physical therapy: “…the physical therapist, I found them on my own. A person gave me some places, some suggestions, but I did the research, and I came to a place that was close by, and that’s the way things work. But, in recent months, it hasn’t been a system within this facility that you could depend on. (R11)” Participants often shared that they could not access adequate support to help them live effectively with their functional limitations.

Because of high symptom burden and functional limitations, residents were heavily dependent on skilled nursing care, but it was often available at limited times and more frequently delivered by nursing assistants. Nursing assistant care was not always deemed favorable among residents, as many felt they weren’t receiving the skilled level of high acuity care they needed: “I’m disappointed there’s not a nurse around 24/7. I think with the amount of sick people in here, people in the walkers and cane and all that, there should be a nurse on call. These girls [nursing assistants] don’t know. (R14)” Additionally, despite a high need for access to specialists, physical and occupational therapists, these types of care were rarely received. Similarly, residents expressed unmet mental health needs and inability to receive treatment for serious mental illness including anxiety and depression: “The (assistant living facility) don’t even know what my needs are. That makes me a little bit weary. Desperate—that’s the word, desperate. I sometimes get helpless ‘cause I’m here. (R10)”

Theme 3: Communication gaps while navigating health care

Most residents reported unaddressed physical, psychosocial, and social needs related to their medical conditions. Residents frequently struggled with inadequate support for their medical conditions across multiple domains—physical symptoms, emotional and psychological well-being, and social needs. While there were isolated instances of effective care, such as when staff provided clear guidance on symptom management or consistent communication, these experiences were the exception rather than the norm. Many residents reported that their care needs were often mismatched with the interventions provided, leading to unnecessary hospitalizations and increased frustration with their care experience. One resident (R13 resident with end-stage renal disease) shared the following: “The first thing they wanna tell you is ‘going to the hospital.’ Everything is ‘going to the hospital.’ My feet are botherin’ me at lunches. I’m not ‘going to the hospital.’” Serious illness communication typically failed to capture residents’ goals of care and preferences as they often felt unheard. Residents expressed frustration and resignation about not having access to the serious illness communication and care navigation they needed.

Social determinants of health negatively impacted communication with health care providers and diminished the ability to manage complex care needs. Residents expressed challenges in making decisions about their serious illness needs and did not often have the exposure to regular counseling about their illnesses. A resident shared: “I just don’t have a primary doctor..at the hospital, they have doctors just in case things come up, I had a list of stuff that I had to follow.I’m scared to death.” (R08, stroke and cancer survivor). With pervasive gaps in communication and patient-centered education, residents expressed fear and limited illness understanding.

Theme 4: Fragmented care coordination

Participants expressed concerns and frustrations about the coordination of care between the assisted living facility, medical providers, and their other providers. For example, medical professionals who regularly engaged with their assisted living facility typically did not have consistent contact with other health care providers, which limited care continuity and trust in medical care: “They tell me what they lookin’ for. I try to give them as much advice as I can without crossin’ the line ‘cause I don’t know what the social worker’s tellin’ ‘em. I don’t know what the nurse is tellin’ ‘em. (N11)” Such inconsistencies in care coordination limited receipt of a variety of services provided in different settings.

Complex care needs were further characterized by loneliness and isolation, which was often demonstrated in their struggles with coordinating their care: “Well, here, at this situation, there’s nobody who’s a friend—who can support you. You have to support yourself. That’s the way I see it, and that’s the way it is. Everybody’s fighting their own battle (N10).” The experience of feeling “alone” for appointments and having to manage problems in isolation increased the challenge of navigating health care and gaining access to health care professionals who can offer the needed serious illness communication. Thus, residents felt that they did not have anyone to champion their needs and often felt diminished by staff: “Talk to us like we’re humans. Talk to us, not talk down to us. Many of times, that’s happened. (R13)” Residents did not have care coordination in a manner that centered their preferences and needs, which was complicated by mistrust and limited autonomy.

Discussion

Medicaid-supported assisted living residents have serious illness needs and very few resources to address them. This study highlights the unique views and experiences of low-income, city-dwelling assisted living residents who face significant challenges across the medical and social care arenas. The findings suggest that responsive programs to assess symptoms of serious illness, support serious illness communication, and improve access to care are needed.

We describe a population, already marginalized, that experiences significant symptom burden and subsequent barriers to communicating challenges, accessing support, and receiving care. This analysis revealed that complex care needs are largely unaddressed in this setting. Furthermore, opportunities for serious illness communication and goal-concordant decision making were not prioritized. These unique insider perspectives illustrate how the goals of assisted living may fall short due to lack of trained staff, poor care coordination, and limited access to resources. Such limitations reinforce isolation, loneliness, and poor quality of life in an environment that is intended to be a supportive community setting.²⁴ Additional resources are needed for assisted living care to produce quality outcomes for residents living with serious and complex illness.

As demonstrated by recent changes in Medicaid policy, assisted living facilities are preferred settings of care for aging medically complex older adults who wish to avoid nursing home placement. The desire for independence and autonomy is a shared goal for many older adults, regardless of their insurance status and socioeconomic background.²⁵ However, in the presence of assisted living growth and a complicated regulatory environment that limits funding and reimbursements for these settings, residents are left to address their medical needs on their own, often forgoing care altogether.

Our study also revealed the absence of around-the-clock nursing care left residents uncertain that highly present complex care needs would be addressed without emergency services. Facilities generally provide nursing support that is limited to 40 hours per week during standard business hours.⁸ Care coordination that fosters care continuity and support for residents during “off-hours” is a much-desired component of assisted living that is largely missing in Medicaid assisted living. This study’s themes highlight the critical need to address high symptom burden, low access to care, and health care communication gaps and the need to address fragmented care and prevent avoidable hospitalization. The limited availability of nursing care in assisted living facilities, which has been documented in previous research, underscores the critical need for programs to address these significant gaps in resident care.^10,26,27

Policy support for new partnerships between residents and health care advocates (e.g., community health workers who can facilitate serious illness conversation and care navigation) may increase support for serious illness conversations at times when nursing support is limited. Fortunately, the Centers for Medicare and Medicaid has recently authorized an expansion of financing for Medicaid policy initiatives in New York aimed at enhancing health equity, supporting safety net hospitals, and addressing workforce shortages.^28,29 This policy initiative has opened the door to establishing new social care support networks to address care disparity and improve health care access. While these efforts offer the promise, the feasibility and effectiveness of implementing these programs in Medicaid assisted living have yet to be evaluated. Further, there is a need to train community health workers in serious illness communication to ensure support for this workforce serving under-resourced communities for this nascent model of support.³⁰

Reforming Medicaid policy, such that residents also have access to critically needed social and housing services with support for serious illness communication, is a key priority. Without stability in housing, addressing complex care needs and serious illness would not be achievable and is a fundamental requirement for improved access and medical services in assisted living. Assisted living residents can face housing instability even after moving into an ALF if they are unable to pay fees, when facilities ask residents to leave if their care needs increase, or when facilities close or change ownership.

When developing innovative delivery models for assisted living facility populations, researchers should consider residents’ complex care needs, cognitive and functional limitations, social isolation, and the role of family caregivers. Additionally, workforce, regulatory variability, financial challenges, technology adoption, and the need for person-centered care can be addressed to ensure responsive implementation. Centering and understanding the unique challenges faced by socially vulnerable and historically minoritized seriously ill individuals can offer insight into how to develop and implement effective policies.²⁷ While some policy changes are promising, such as states’ abilities to develop the needed infrastructure to improve access to social care, seamless integration of needed medical services has not been outlined to the extent that it is needed.³¹ More targeted policy and systemic efforts are needed to optimize assisted living for all residents.³²

Limitations

This study has limitations and strengths for consideration. Participants were from a single site that reflected perspectives of low-income adults in Medicaid-supported assisted living, which is not available in all states. The growth in the acuity of care required of assisted living residents, lengthening of life expectancy, and increased cost for functional support present an opportunity to identify and address challenges for low-income older adults. Subjectivity is another challenge and potential limitation that can diminish the trustworthiness of any qualitative study. While we countered subjectivity with rigorous qualitative methods, the strengths of this study were triangulation of methods and the presence of an embedded nurse researcher. Triangulation of quantitative symptoms assessment with qualitative responses added depth to the findings and gave participants an opportunity to reflect on their scores and provide greater insight, an approach that strengthens trustworthiness. Additionally, an embedded nurse researcher attended assisted living community events and home visits for one month prior to data collection and weekly for one year following study initiation, securing trust and authenticity with the participants.

Implications for Research and Practice

This study has implications for practice and future research that may result in higher-quality care for low-income older adults. Participants reported diminished quality of life, high symptom burden, unaddressed needs, and problematic health care communication. Support is needed for low-income adults to maintain independence and avoid nursing home placement. Due to variable regulation at the state level, federal guidelines and minimal standards are underdeveloped. There is a growing call for assisted living accreditation through the Joint Commission; however, this status is conveyed only to organizations that seek it.³³ More commonly, these efforts are balanced by facility financial priorities and a desire to deliver care according to historical institutional contexts of what it means to provide high-value care for their customers. With the ever-changing financial and clinical landscape, assisted living frequently falls into a nonclinical framework, which reinforces gaps in care. There is a need to fill these gaps in practice by enhancing services that are available to assisted living residents. Future efforts that implement community health workers in these settings may help supplement the functional support assisted living provides. This may also involve helping to bridge the need-services divide to include RNs who are able to assess for primary palliative care needs.³⁴

Research is needed to enhance the quality of care for low-income older adults who live in Medicaid-supported assisted living. The Agency of Health Care Quality identifies six domains of quality.³⁵ This framework states that high-quality care is patient-centered, timely, safe, efficient, effective, and equitable. There is an opportunity to improve these outcomes for low-income older adults in assisted living through intervention research and program development.³⁶ Implementation research of a successful support program that addresses outcomes such as quality of life, health care access, communication, and symptom experience through innovative offers a person-centered approach that may result in limiting premature nursing home placement. However, in the fiscally driven assisted living sector, health care research that addresses other domains of quality (e.g., timeliness, safety, efficiency, and effectiveness) may provide financial incentive that improves care while addressing organizational priorities by retaining satisfied residents who pay premiums to live in well-run facilities. For low-income older adults, this is not an option. Future work is needed to identify low-cost equitable interventions that address the needs of those who can afford premium service as well as those who are attempting to survive aging on limited means.³⁷

Conclusions

Low-income older adults with symptoms of serious illness living in Medicaid-supported assisted living report diminished the quality of life, high symptom burden, and suboptimal communication with providers. Addressing the challenges of navigating the health care system and communicating with providers are potential targets for intervention development in low-resource environments. Addressing these challenges requires consideration for the unique needs of under-resourced residents, as well as health care access, assisted living fiscal solvency, and service delivery.

Authors’ Contributions

K.P.M. contributed to conceptualization, data analysis, methodology of secondary analysis, visualization, writing—original draft, and writing—reviewing and editing. R.L. contributed to data curation, original data coding, methodology, software, validation of secondary analysis, and writing—reviewing and editing. A.A.B. contributed to conceptualization, methodology, resources, supervision, validation, and writing—reviewing and editing. D.S.-G. contributed to methodology, resources, supervision, validation, and writing—reviewing and editing. D.D. contributed to conceptualization, data curation, formal analysis, investigation, methodology of secondary analysis, project administration, resources, software, supervision, validation, and writing—reviewing and editing.

Disclaimer

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Author Disclosure Statement

The authors report no conflicts of interest.

Funding Information

K.P.M. was funded by the National Institute on Aging (NIA) of the National Institutes of Health under Award Number U54AG063546, which funds NIA Imbedded Pragmatic Alzheimer’s and AD-Related Dementias Clinical Trials Collaboratory (NIA IMPACT Collaboratory), NIA Career Development Award K23AG083125, and as a Research Education Component Scholar Program of the NYU Alzheimer’s Disease Research Center [P30AG066512]. D.D. was supported by National Palliative Care Research Center, Kornfeld Scholar Program.