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. Author manuscript; available in PMC: 2025 Jul 15.
Published in final edited form as: J Appl Gerontol. 2025 Mar 11;44(10):1615–1622. doi: 10.1177/07334648251315261

How did the Sudden Closures of Adult Day Services During COVID-19 Impact Dementia Care Dyads?

Laura M Girling 1, Regina L Hrybyk 1
PMCID: PMC12263164  NIHMSID: NIHMS2047487  PMID: 40068586

Abstract

The COVID-19 pandemic significantly disrupted daily routines across all age groups. However, the impact of the enforced closures of Adult Day Services (ADS) on dementia care dyads has received limited qualitative attention. To address this gap, data from a National Institute of Health (NIH) study (N=43) were analyzed to explore how COVID-19 impacted community-dwelling persons with dementia and their caregivers. Analyses were conducted on the subsample of caregivers (n=13) who supported a community-dwelling person with dementia who attended an ADS program at the onset of COVID-19. Findings indicate four central themes: (a) struggle to meet the needs of the person with dementia, (b) physical and cognitive decline of the person with dementia, (c) lack of time for self-care, and (d) adaptations by ADS and caregivers. This study posits that the mandated closure of ADS sites due to COVID-19 exacerbated both caregiving burden and deterioration in individuals with dementia.

Introduction

Adult Day Services (ADS), designed for community-dwelling adults who require assistance due to disability or disease, offers a structured environment where individuals can receive medical care and engage in meaningful activities. Amid the unprecedented challenges posed by the COVID-19 pandemic, ADS sites were classified as non-essential and consequently mandated to close (Parker, et al., 2021). While the repercussions of these closures, on various populations, have been documented (Sadarangani, et al., 2021; Sadarangani, et al., 2022; Parker, et al., 2021; Vervaecke, et al., 2021); there remains a paucity of information regarding the impact of ADS closures on the unique group of ADS participants diagnosed with dementia and their caregivers. Studying dementia caregivers specifically is important as challenges they face are often more intense and unique compared to those of general caregivers (Queluz et al., 2020). To explore how dementia dyads were impacted by ADS closures, data were drawn from an interview-based study that investigated experiences of dementia caregivers during the COVID-19 pandemic. Data were filtered by the subsample of informal caregivers who provided care to an individual with dementia who was attending an ADS program at the onset of COVID-19. Drawing on the experiences of informal caregivers, this study builds on the literature depicting the detrimental effects suspending ADS support has on the specific caregiving population of persons with dementia.

Literature Review

ADS & Dementia

ADS “is a system of professionally delivered, integrated, home-and community-based, therapeutic, social and health-related services provided to individuals to sustain living within the community” (NADSA, 2024). Data from the National Center for Health Statistics indicate that nearly one third of ADS participants have a formal diagnosis of dementia (Harris-Kojetin et al., 2016; Lendon & Singh, 2021). The National Adult Day Services Association (2024) indicates that approximately 90% of ADS centers offer cognitive stimulation programs, and nearly 80% offer memory training. Beyond cognitive stimulation, ADS programs can offer persons with dementia a sense of belonging, providing opportunities to connect with peers and reduce social isolation.

In addition to providing support to persons with dementia, ADS programs also provide unique support to dementia caregivers. It is suggested that a major benefit of ADS programs is reducing caregivers’ exposure to care-related stressors, including behavioral and psychological symptoms of dementia (e.g., depression, agitation, etc.) (Bangerter et al., 2021). Likewise, utilizing ADS has been shown to improve cortisol regulation among dementia caregivers (Klein et al., 2016). Although findings are mixed (Femia, et al., 2007; Gitlin, et al., 2006; Zarit, et al., 2001; Parker, et al., 2021), ADS may be most beneficial for dementia caregivers who use the services regularly and for greater durations (Du Preez et al., 2018; Gaugler et al., 2003). For instance, in a recent study, regular daily ADS use appeared to benefit sleep health for older dementia care dyads by encouraging earlier and more regular sleep timing (Liu, et al., 2022). Similarly, when compared to a control group, caregivers who regularly used ADS for at least three months showed lower worry, strain, depressive symptoms, and anger (Zarit, et al., 1998). A recent randomized trial showed that when integrating an evidenced-based caregiver support programs, ADS Plus (which included dementia education, referrals, strategies for care challenges, etc.), within existing adult day programs, caregiver mood improved and increased ADS utilization by about 60% (Reever, et al., 2024; Gitlin, et al., 2019).

ADS & COVID-19

Due to COVID-19, ADS facilities throughout the country were forced to shut down abruptly, leaving families to cope with the sudden cessation of in-person services. Mandatory closures of ADS centers deprived participants of daily assistance and available amenities (e.g., meals preparation, health surveillance, social interaction), while concurrently leaving caregivers devoid of respite.

Despite closures, many ADS sites delivered or prepared food for clients (36.4%), provided telephone support (100%), offered virtual medical check-ins with a nurse or social worker (40.1%), and shared virtual activities (63.6%) (Parker et al., 2021). As Sadarangani and colleagues (2022) point out, studies that have evaluated ADS closures on older adults and their caregivers consistently show “1.) exacerbated isolation and caregiver strain, 2.) accelerated cognitive and functional declines, 3.) unsafe behaviors, 4.) increased use of care in higher-cost settings (e.g., emergency rooms and skilled nursing facilities, and 5.) limited opportunities for productive engagement among the older adults they serve.”

While these studies have provided valuable insights into the impact of ADS closures, qualitative studies have largely focused on the perspectives of formal providers including ADS staff (Sadarangani et al., 2021), ADS directors (Vervaecke et al., 2021), or groups of informal care partners supporting general populations of older adults such as those broadly categorized as having a disability (Lightfoot et al., 2021; Naruse, 2021; Parker et al., 2021). Little attention has been given to dementia care dyads and how they were impacted by ADS closures. The primary purpose of this study is to expand upon the limited, qualitative inquiry in this area to explore how COVID-induced ADS closures impacted dementia dyads.

Methods

Sampling & Data Collection

Data for this study were drawn from an NIH-funded interview-based investigation that explored how COVID-19 impacted community-dwelling persons with dementia and their informal and formal caregivers (N=43). Participants were recruited through community outreach in a mid-Atlantic region of the United States. Eligibility criteria were: English speaking, age 18 or older, and provided either ongoing formal care (paid) or informal support to a person with dementia. Informal caregivers were defined as an unpaid person with whom the person with dementia had contact weekly and relied on for assistance in daily activities. Interviewers conducted a single tape-recorded, in-depth interview with each informant. Interviews averaged 90 minutes. Informants received a $50 honorarium for their participation.

To explore the impact of ADS closures on dementia dyads, caregivers whose dementia care recipients was not attending an ADS site at the onset of COVID-19 (n=30) were excluded. This resulted in a subsample of thirteen informal dementia caregivers whose care recipient was attending ADS at the onset of COVID-19. Sample characteristics including age, number of years the informant provided dementia care to the person with dementia (PwD), sex, race/ethnicity, and the informant’s relationship to the PwD, can be found in Table 1.

Table 1:

Sample Characteristics (n=13)

Characteristic n(%) Mean (SD)
Age 56.6 (12.7)
Years caring for PwD
Sex		 5.9 (3.2)
Male 1 (7.7)
Female 12 (92.3)
Race/Ethnicity
African-American 9 (69.2)
Non-Hispanic White 1 (7.7)
Nat. Hawaiian/Pac. Islander 2 (15.4)
More than one 1 (7.7)
Relationship to PwD
Child 7 (53.8)
Daughter-in-law 3 (23.2)
Niece 1 (7.6)
Spouse 1 (7.6)
Sibling 1 (7.6)
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Coding/Thematic Development

To systematically explore interview narrative, transcribed data were formatted into ATLAS ti.23 and read in its entirety. Discussion of ADS closures was broadly coded as “ADS”. Data coded ADS were subsequently sub-coded to explore patterns in how closures were discussed (Braun & Clarke, 2021; Braun & Clarke, 2013). Data underwent an iterative examination to identify recurrent patterns (Braun & Clarke, 2021; Braun & Clarke, 2013). To enhance the quality of findings, patterns were checked against the coded data and the entire subsample dataset (Braun & Clarke, 2013). The research team iteratively discussed patterns (sub-codes) and thematic categorization of the data. Recurrent patterns were organized to formulate four significant themes: (a) struggle to meet the needs of the person with dementia, (b) decline of the person with dementia, (c) lack of time for self-care, and (d) adaptations by ADS and by caregivers. Informant names have been changed to protect anonymity.

Findings

Although informants articulated unique experiences, each directly discussed how ADS closures led to an increased struggle to meet the needs of the dementia care recipient, physical/cognitive decline of the person with dementia, lack of time for caregivers to address their own self-care needs, and various adaptive strategies. While each informant discussed these areas within their interviews, quotations were selected as exemplars to succinctly convey each theme.

Informal caregivers struggled to meet the needs of the PwD

The caregivers in this study responded to the sudden closure of ADS with varying degrees of difficulty as their daily routines were disrupted. However, all informants discussed the perpetual struggle to manage ongoing obligations in combination with the loss of ADS respite care. For instance, Tanya described how ADS closures forced her into round-the-clock care for her mother with dementia while simultaneously balancing full-time employment and parenthood:

COVID hit, real life happened. We all were at home at the same time… I mean it was full-time care … within that full-time care I still had a full-time job… I have an 11-year-old son … so I was teacher, mom, daughter, caregiver, worker, supervisor, student, yeah, all those hats I wore…”

As Tanya indicated, providing full-time care for her mother while managing competing obligations was overwhelming. Losing the daily support and respite provided by ADS directly increased Tanya’s caregiving responsibilities. This notion was evidenced throughout informants’ narratives.

Informants also described how ADS closures positioned them as the primary source of medical oversight. Prior to the closure, ADS offered important healthcare services including monitoring chronic conditions like diabetes and high blood pressure. However, when daily monitoring stopped, some caregivers, often not trained in medical professions, were forced to step into the role of directly managing the physical health of the individual with dementia. Jasmine, who cared for her 70-year-old mother, expressed her frustration: 

In December they tried to put her back on insulin. But I’m not educated to give shots. I explained this to them [hospital discharge], I don’t even know how to do this, nobody even told me how to do this. I need somebody to educate me. So, I had to wind up having to take her to the emergency room ‘cause her sugar was low.

As seen from Jasmine’s quotation, forced closures resulted in cessation of ADS nursing staff administering required insulin injections. She possessed no training to appropriately provide needed medication to her mother. Suddenly assuming the role of primary medical oversight led Jasmine to utilize more expensive treatment options (e.g., emergency room).

Decline of the person with dementia

In the months after ADS centers were closed to participants, informants observed physical and cognitive decline among care recipients. Emily was dismayed at her mother’s physical decline, “What has happened to her body in nine months since COVID is horrifying, horrifying!” When the regular physical activity (e.g., daily exercise program, riding the bus) offered by ADS stopped, the physical decline of her mother “intensified”.

Similar to Emily, Allen lived with and cared for his father while he worked full-time. He commented on his father’s decline:

I’m working during the day and he’s here … He’s not doing other things ‘sides watching TV most of his day… It’s not good for him mentally … it’s a sharp decline because of COVID … His overall quality of life is truly changed”.

Allen struggled to provide stimulation and spoke of his father’s physical and cognitive decline after he lost the daily interactions and regular activity involved in ADS attendance as noted above. Another example of decline can be observed within Tanya’s discussion of the impact of ADS closures on their daily routine. “Dementia patients, you got to keep ‘em on a routine… After she recognized that the bus was not coming, she declined a lot more.” Tanya articulates the importance of a set routine to the dementia care dyad. When ADS attendance was no longer a part of her daily schedule, Tanya observed an increase in her mother-in-law’s cognitive impairment.

Informants’ narratives point to observed decline of the person with dementia at the sudden loss of trained medical oversight, socialization, and activities (exercise, trivia, games, etc.) offered by ADS programs.

Lack of time for self-care

The increased burden associated with ADS closures reduced available time and opportunities for caregivers to engage in self-care behaviors. As Veronica noted:

I’m [providing] 100 percent care. My siblings does not help, does not call, does not care. And I’m doing everything else.... filling the needs of everybody else and then at the end of the day trying to fill my needs but being too tired to… I was exhausted. I would lock myself in the bathroom just to read… I would go to bed, get some rest …and I would set my alarm clock to 2:30 in the morning. That way I’d know everybody was asleep and I would do my homework …it was extremely stressful. 

Veronica resorted to doing her own work in the middle of the night while the rest of the household slept. Without the respite offered by ADS and policies in place limiting methods of support (e.g., social distancing, quarantining guidelines), many informants described being overwhelmed. Allen expressed his feelings of isolation from other family members when the closure of ADS programs was mandated:

It’s kinda been like it’s the job that nobody wants to do… I’m the only one here to take care of him. … I could barely take care of myself at that time, and then I had to take care of him too.

As seen from the quotation, the loss of ADS support intensified caregiving responsibilities for Allen and impacted his ability to balance attending to his own personal needs as well as the needs of others (e.g., his father).

Despite the intense challenges faced by caregivers during the pandemic closures, many adjusted to the new reality with resilience.  Tanya accepted her limitations, “I’ve come to the realization that I cannot do everything … We have a washing machine so if she uses the bathroom in bed, hey it’s going to be OK.” The increased workload of caring for a person with dementia, in addition to managing other obligations, forced caregivers to sacrifice self-care. All informants, within the sample, noted reduction in their ability to complete self-care tasks.

ADS adapted to challenges

Soon after the mandated closure, the ADS centers in this study began to facilitate remote care. Daily phone calls were made to participants and/or caregivers. Emily described how ADS adapted by providing telephone contact, “Every day they call and ask to talk to my mom and we put mom on the phone… It’s so awesome. It’s like somebody in the outside world is actually checking on her.” Daily wellness calls served to maintain regular contact with clients and assess their needs, albeit from afar. With these phone calls ADS supported not just the person with dementia, but also their caregivers. Similar to Emily, Tanya valued this connection, “They call every day… and that’s been truly a blessing… They’re definitely a stakeholder in our everyday lives. They’ll call and if it’s questions that I have… I’ll run it by her. So that’s like my source of information. “ 

 The daily phone calls, which began almost immediately after the ADS closures, were an important contact point for the person with dementia and a lifeline for caregivers. The regular personal contact served as a meaningful adaptative strategy to allow continued support of the care dyad at a critical time.

In addition to telephone adaptations, ADS also turned to virtual programming by means of video-conferencing platforms. ADS centers implemented Zoom events with mixed responses. Some families were experienced with internet technology and found these virtual interactions helpful. Linda and Emily described how ADS provided structure and supported their mother’s cognition using Zoom events:  

Tuesday, she has a Zoom exercise class and on Wednesday she has Bible study class and then Friday mornings they do a story time…. adult daycare does it and then we have to get her on. … One day they did a trivia day with things about [Mid-Atlantic city] …my mom knows all of that, anything that’s like long-term she’s very good with.  

I can’t think of any single thing that we can do for my mom that makes her feel connected … in the situation we’re in than those Zoom calls.

In some cases, virtual ADS was not helpful, as Brandi remarked: 

I’d probably have to sit with her and do it, watch it [Zoom call] with her. I could not just pull up the Zoom session and put it in front of her and walk off and prepare dinner or something like that.  

Brandi highlights the complexity of managing a virtual exchange platform for a care recipient with dementia. Brandi mentions that she cannot simply leave her mother to navigate herself, she must consistently be present to manage the entire session.

In addition to maintaining daily contact with participants and caregivers, ADS sites provided home delivery of prescriptions and other necessities during the pandemic. While medication administration was executed by the family, this service was greatly valued, “They were a great support. They helped very much with providing medication. They helped with providing tickets [mobility passes] to Val’s [medical] appointments when in the pandemic. [ADS] was a great support system.” Many informants spoke of the importance of the daily contact and delivery of medications and other necessary items (e.g. incontinence product, disposable gloves).

Candice appreciated the activity packets ADS delivered during the Covid closure, “Daycare every month they would drop off a bag of goodies like it would be things for her to paint, things, coloring books, crayons, markers, certain things like that.” ADS administrators acted with concern for their clients’ well-being and responded quickly to the abrupt closure. Their response to the situation supported the care dyad at a critical time.

Caregiver adaptations

In addition to adaptive strategies employed by ADS programs, caregivers also devised unique ways to provide care for individuals with dementia. Without the opportunity to attend ADS, Emily’s mother had little cognitive or visual stimulation. To meet this challenge, Emily devised ways to safely offer her mother an outing. Emily would take her mother on a drive down a busy highway to look at the signs:

All kinds of signs, things like one sign said, “Today’s special, buy one and get one free!” and my mother starts screaming, “Hey look! There’s a special at the store.”  And so, I pack up a lunch for the two of us, I put her in the car so then we’re safe… I just rode up and down and she started just reading like all the different signs she saw. … she was so excited like the scenery was different and, you know, just reading signs and it was fun.

Emily provided her mother with needed stimulation during a time when in-person interactions were restricted. This thoughtful technique supported Emily’s mother’s need to engage in meaningful stimulation.

Despite adaptations to the loss of ADS care, this study highlights the struggles that caregivers endured and the decline of the people they cared for. Findings illustrate the negative impact on the well-being of the care dyad when ADS was deemed a non-essential, community-based healthcare service during the COVID-19 pandemic.

Discussion

Findings from our analyses suggest that COVID-19-induced ADS closures resulted in informal dementia caregivers struggling to meet the needs of care recipients, increased physical and cognitive decline of care recipients, lack of time for informal caregivers to engage in self-care, and coping adaptations by both ADS and caregivers. Several qualitative studies have examined the viewpoints of ADS staffs’ perspectives during COVID-19 (Sadarangani, et al., 2021; Parker, et al., 2021) or groups of informal care partners supporting general populations of older adults (Lightfoot et al., 2021; Naruse, 2021; Parker et al., 2021). By contrast, this study specifically explored dementia care dyads experiences navigating COVID-19 induced ADS closures. During the forced closure of ADS, administrators and caregivers adapted, but nonetheless, noticeable declines in the persons with dementia occurred. Family caregivers struggled to meet the needs of the person with dementia, leaving little or no time to care for themselves. The negative impact of mandated ADS closures, on the well-being of dementia care dyads, was articulated throughout the sample.

The loss of ADS respite care left caregivers struggling to meet the needs of care-recipients with dementia. As caregivers managed the complexity and uncertainties of ongoing obligations, such as childcare and/or full-time employment during the pandemic, many informants indicated increased difficulty meeting the needs of their loved one. Spread thin, informants articulated hardship providing round-the-clock care to an individual with dementia while also maintaining other required roles (e.g., parent, employee). These findings are similar to other studies showing that COVID-19 depleted caregiving resources for various populations making caregiving even more challenging (Lafferty et al., 2022; Woodbridge, et al., 2021).

Likewise, ADS closure removed in-person medical services offered by programs, forcing caregivers, in the present sample, to serve as the primary source of medical oversight. Medication management is both difficult and time-consuming with many caregivers unprepared and ill-equipped to manage complex medical regimes. Complex medication regimes in combination with untrained informal caregivers can put persons with dementia at risk for adverse outcomes (Alsaeed et al., 2016). Difficulties in administration of medicines can cause caregivers to modify dosing, jeopardizing the safety and efficacy of medicines (Gillespie, 2015). With the absence of previously established ADS medical support, caregivers were largely unprepared to serve as the primary source of medication administration and oversight for the dementia care-recipient.

Informants articulated that the sudden cessation of ADS attendance negatively impacted the physical and cognitive health of the person with dementia. Informants in our sample noted the importance of a daily routine when caring for a person with dementia. The immediate loss of regular physical activity associated with ADS attendance was discussed as leading to observable declines in strength and mobility in the persons with dementia. Likewise, cognitive decline was noted to have accelerated when socialization with peers and stimulating activities were no longer available. Prior literature suggests that maintaining a routine can help persons with dementia know what to expect and may assist with preserving a sense of self (Bjorklof et al., 2019; Menne, Kinney, & Morhardt, 2002). The disruption of consistent in-person ADS attendance was articulated as a notable catalyst for negative cognitive effects (e.g., increased confusion) within the sample.

The importance of ADS in “caring for caregivers” is well-documented (Du Preez, et al., 2018). Witnessing the physical and cognitive decline of the persons with dementia was noted to have exacerbated the strains of caregiving. Similar to our findings, other studies focusing on general groups of care partners have shown that pandemic-related ADS closures increased caregiver strain (Sadarangani, et al, 2022; Sadarangani, et al, 2021; Vervaecke, Owaisi, & Meisner, 2021). The lack of respite for caregivers during the pandemic, previously provided by ADS and/or other family members, left little time for informal caregivers to care for their own basic needs. While self-care is a dynamic, challenging aspect to caregiving, findings from the present study suggest that the respite offered by ADS programs offers an essential avenue for caregivers to manage their own needs.

Similar to prior research (Sadarangani, et al., 2022), ADS centers in this study maintained regular contact with clients through phone calls. Medications were monitored and home-delivery of prescriptions was provided. Much like the technological adaptations made in public schools such as pivoting to Zoom meetings (Kang, 2021), ADS centers also turned to online programming. Similar to other studies (Hicks, et al., 2023), this shift to virtual platforms was perceived negatively by some in the sample as they voiced preference for in-person interactions that did not require technological literacy or the degree of accessibility required to engage in digital interfaces. Nonetheless, several informants in our study reported that virtual interactions helped to maintain their care recipient’s cognition functioning and reduced social isolation, supporting other research in this area (Maffioletti et al., 2021). While informants struggled to adjust to the sudden changes of the pandemic, many adapted with resilience and innovation. Each care dyad found ways to cope with a once unimaginable public health crisis. Collectively, these narrative findings suggest that sudden cessation of ADS attendance is detrimental to the well-being of the dementia care dyad.

Limitations

Although this study provides an important exploration of how dementia dyads were impacted by ADS closures, it is not without limitations. First, the primary objective of the study was not to evaluate the effect of ADS closure. Only 13 individuals within the sample experienced the phenomenon of interest. Accordingly, analyses were limited to this subsample. Likewise, while the sample was racially diverse (e.g., African-American, Non-Hispanic white, Pacific Islanders, and multi-racial), cell sizes were too small to evaluate differences between groups. Additionally, interviews for this study were conducted virtually. While appropriate amid the unprecedented challenges posed by the COVID-19 pandemic, virtual settings may hinder the establishment of rapport and trust between the interviewer and informant. Not developing sufficient trust or rapport can affect the depth and authenticity of responses. Likewise, non-verbal cues, which are crucial for understanding participants’ emotions and reactions, were also less perceptible. This potentially could have impacted the richness of the data collected. Lastly, while demographic data were documented, income status was not obtained. It is likely available monetary resources impacted how dementia dyads experienced the cessation of ADS services during COVID-19.

Implications

Du Preez (2018) articulates the importance of caring for caregivers, “Policies that consider infrastructures that support carers, enabling them to care for themselves, have the potential to improve caregivers’ quality of life and health outcomes.” The present study describes the detrimental effects suspending ADS support had on dementia care dyads during the COVID-19 pandemic. In the event of a similar future public health emergencies, policy makers and advocates should consider weighing the negative impact on vulnerable at-risk populations, such as those with dementia, with potential benefits of community-based care. As suggested by others in this area, “instead of shutting down adult day services, they should be integrating these necessary programs into the broader health care system landscape.” (Gaugler, et al., 2021). Before a similar emergency arises, policy makers and advocates should consider the potential detrimental effects on the population with dementia and their caregivers.

What this paper adds:

  • Drawing on the experiences of informal caregivers, this study revealed the detrimental effects suspending ADS support had on dementia care dyads during the COVID-19 pandemic.

  • This study adds to the limited research in this area, suggesting that ADS closures increase caregiving strain and increase physical and cognitive decline among those with dementia.

  • Findings suggest that although ADS closed in-person services, various adaptative strategies were employed by both ADS centers and informal care providers to support dementia dyads.

Application of study findings:

  • In the event of similar public health emergencies, policy makers and advocates should weigh the negative impact of forced ADS closures on dementia care dyads with perceived benefits.

Acknowledgements:

The authors would like to thank the informants who shared their experiences with us, Mary Nemec for her diligent work on the project, and the National Institutes of Health for funding the study.

Support for this work comes from NIH Grant R21AG059149-02S1

This study was approved by IRB protocol 401.

Footnotes

We have no known conflict of interest to disclose.

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