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. Author manuscript; available in PMC: 2024 Nov 11.
Published in final edited form as: Psychol Aging. 2024 May 16;39(5):565–577. doi: 10.1037/pag0000820

Efficacy of the Residential Care Transition Module: A Telehealth Intervention for Dementia Family Caregivers of Relatives Living in Residential Long-Term Care Settings

Joseph E Gaugler 1, Robyn W Birkeland 1, Elizabeth A Albers 1, Colleen M Peterson 2, Katie Louwagie 1, Zachary Baker 3, Mary S Mittelman 4, Kenneth Hepburn 5, David L Roth 6
PMCID: PMC11552057  NIHMSID: NIHMS2031490  PMID: 38753405

Abstract

The purpose of this study was to evaluate the efficacy of the Residential Care Transition Module, a six-session, psychosocial, and psychoeducational telehealth intervention for family caregivers of cognitively impaired relatives living in a residential long-term care setting. Eligible participants (including care recipients, regardless of time since admission) were randomized to treatment or usual care control conditions. Survey data were collected at baseline, 4 months, 8 months, and 12 months (N = 240). Primary analytic outcomes included caregiver subjective stress (a stress process mechanism) and depressive symptoms (a measure of global well-being). Secondary analytic outcomes included secondary role strains, residential care stress, caregiver sense of competence, and self-efficacy (additional mechanisms of action). General linear models tested for the main effects of the intervention at 4 months, and longitudinal mixed models examined the 12-month effects of the intervention. Post hoc analyses also examined the influence of moderators. No significant differences between the treatment and control groups for any primary analytic outcome were apparent. Caregivers in the treatment group whose relatives were admitted to residential long-term care in the prior 3 months were more likely to indicate reductions in depressive symptoms over the first 4 months of participation. Over the 12-month study period, caregivers in the treatment group who were employed reported increased self-efficacy over time. The heterogeneity of dementia care requires a broader consideration of key contextual factors that may influence the efficacy of nonpharmacological interventions. Aligning measures with the preferences, goals, and values of dementia caregivers may further demonstrate the direct benefits of interventions such as the Residential Care Transition Module.

Keywords: nursing homes, assisted living, intervention, Alzheimer’s disease, informal caregiving

The psychological, health, and financial implications of Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD) for people living with dementia, the unpaid family members who care for them, and health care systems are considerable (Committee on Care Interventions for Individuals with Dementia and Their Caregivers et al., 2021; The Alzheimer’s Assocation, 2022). One of the more pernicious aspects of AD/ADRD is its lengthy trajectory. People live with AD/ADRD for 4–8 years on average from diagnosis. However, the likelihood of delayed diagnosis means that the time spent living with dementia and caring for someone with AD/ADRD can last much longer (The Alzheimer’s Assocation, 2022). Although the overall functional, cognitive, and behavioral trajectory of dementia is generally considered one of insidious decline, several important transitions can serve as psychological, health, or quality of life “inflection points” that punctuate the AD/ADRD experience for people living with dementia and their caregivers. Among these transitions is entry into residential long-term care (RLTC) settings such as nursing homes or memory care units in assisted living settings. Close to half of nursing home residents have a diagnosis of AD/ADRD (Harris-Kojetin et al., 2019). A care recipient’s institutionalization can pose many challenges to families, including adjustment to a new caregiving role that is less focused on providing direct care to cognitively impaired relatives in favor of the facility; quality of care concerns related to staffing and other challenges of many RLTC settings; the need to advocate for improved care for relatives; and communicating effectively with staff (see reviews by J. E. Gaugler, 2005; J. E. Gaugler & Kane, 2007; J. E. Gaugler & Mitchell, 2022).

There are now a large number of nonpharmacological interventions to support family caregivers of people with dementia (Butler et al., 2020; Cheng et al., 2020; Committee on Care Interventions for Individuals with Dementia and Their Caregivers et al., 2021; Gitlin et al., 2020). In most of these efforts, RLTC admission is a reason for participant attrition or, less frequently, an endpoint of an intervention. Available evidence suggests, however, that dementia caregiving and its implications do not end with a relative’s entry into a nursing home or assisted living setting (J. E. Gaugler & Mitchell, 2022). The purpose of this 12-month randomized controlled trial was to evaluate the efficacy of the Residential Care Transition Module (RCTM), a psychoeducational and psychosocial support telehealth program, for family caregivers who have admitted a cognitively impaired relative to an RLTC setting.

Background

Care transitions are defined as changes in the course, provider, or setting of care that occur as AD/ADRD progresses (Callahan et al., 2015). Entry into a nursing home or other 24-hr residential setting is one care transition that may occur during the course of dementia (Aneshensel et al., 1995; Fortinsky & Downs, 2014; Montgomery & Kosloski, 2000; Rose & Lopez, 2012). A transition to a long-stay residential environment (long-stay is typically defined as more than 90 days in the United States, which are often covered by public payment sources such as Medicaid in nursing homes) can occur from home, hospital, or acute rehabilitation settings. In general, the extent of personal care provided by most family members tends to decline substantially following the admission of relatives to RLTC settings, although families engage in other tasks, such as interacting with staff to ensure quality care is delivered (Kellett, 2007; Puurveen et al., 2018; Ris et al., 2019). Care provision by family members may continue or increase following RLTC admission if their relatives’ health conditions worsen (Fukahori et al., 2007; Roberts et al., 2020). Some studies suggest that family visits and involvement are associated with positive outcomes for residents and that this effect is moderated by quality communication with RLTC staff (Abrahamson et al., 2016; Arai et al., 2021; J. E. Gaugler, 2005; J. E. Gaugler & Kane, 2007; Verloo et al., 2018; Weaver et al., 2020).

Studies have also found that dementia caregivers’ burden and depression are reduced statistically following relatives’ RLTC admission and, in some instances, clinically (J. E. Gaugler et al., 2008, 2010). Other investigations indicate that outcomes, such as guilt, stress, and depression may persist due in part to less active family member involvement (J. E. Gaugler, 2005; J. E. Gaugler & Kane, 2007; J. E. Gaugler & Mitchell, 2022; Statz et al., 2022). Several intervention approaches have attempted to improve family engagement in RLTC and enhance family members’ well-being following a relative’s admission to alleviate potentially negative outcomes for caregivers. Available interventions include building family–staff relationships (Bramble et al., 2011; Robison et al., 2007), crafting meaningful roles for families in RLTC (Zimmerman et al., 2013), and incorporating family members into the decision-making process of care (Backhaus et al., 2020). Although some of these programs have yielded positive benefits for families, residents, and staff (Backhaus et al., 2020; J. E. Gaugler, 2005; J. E. Gaugler & Kane, 2007; J. E. Gaugler & Mitchell, 2022), few of these approaches have undergone rigorous experimental evaluation to determine their efficacy and potential value for families of relatives with dementia in RLTC.

Conceptualization and Research Focus

Our evaluation of a psychosocial and psychoeducational intervention for families of relatives with AD/ADRD living in RLTC was guided by the Stress Process Model for Residential Care (SPM-RC; Whitlatch et al., 2001). Derived from Pearlin’s SPM (Aneshensel et al., 1995; Pearlin et al., 1990), the SPM-RC offers a framework to describe why family caregivers of people with dementia may experience various outcomes during and following a relative’s RLTC entry. The underlying “process” of the SPM and SPM-RC is proliferation, whereby the intensity of dementia care demands (e.g., cognitive, functional, and behavioral needs of the cognitively impaired care recipient) exacerbate negative emotional appraisals of the care situation (subjective stress, a mechanism). Greater perceived stress then extends to life domains beyond dementia care, which adversely influences the health and well-being of the caregiver (stress process outcomes). Potential moderators of the stress process include the sociodemographic context of care. External (e.g., psychosocial, formal services) and internal (sense of competence, self-efficacy) resources operate to buffer the proliferation of the stress process (and hence contribute as a mechanism of proliferation). The SPM-RC incorporates additional mechanisms that can drive proliferation during and following a relative’s RLTC entry, including (a) secondary role strains, or the caregiver and care recipient’s perceived adjustment to the RLTC setting, and (b) residential care stress, which represents perceptions of staff communication with and support of family caregivers, quality of interactions with RLTC staff, perceptions of upset regarding the relative’s RLTC placement, and family involvement in RLTC.

The principal focus of this study was to evaluate the RCTM, a 12-month psychosocial (counseling and support) and psychoeducational (provision of skills building and strategies) intervention to assist family caregivers of people living with AD/ADRD who reside in RLTC facilities such as nursing homes and memory care units in assisted living facilities. We hypothesized that family caregivers who received the intervention would report statistically significant (p < .05) reductions in subjective stress (a potential mechanism of the stress process) and depressive symptoms (a stress process outcome) over 12 months when compared to family caregivers not randomly assigned to receive the RCTM. Secondary analytic outcomes of interest included family caregivers’ competence and self-efficacy (also potential mechanisms in the stress process); family involvement and visits (a stress process outcome relevant to the RLTC context); secondary role strains (a mechanism of the stress process relevant to the RLTC context); and residential care stress over 1 year (also a mechanism of the stress process relevant to the RLTC context).

Method

Transparency and Openness

Data and code for the present study are available in the National Archive of Computerized Data on Aging (J. Gaugler, 2024). Please see the Author Note for the hyperlink to access the data and code. Below, we describe how we determined our sample size, any data exclusions, manipulations, and measures in detail. The study design, hypotheses, and analytic plan were not preregistered, although study protocol details are available in J. E. Gaugler et al. (2020).

Procedure

The University of Minnesota Institutional Review Board approved this study, “The Residential Care Transition Module” (No. 1511S80406).

Participants

Sample size calculations allowed for up to four waves of longitudinal data collection and assumed a potential 10% loss to follow-up per wave. Estimates indicated that enrolling 240 AD/ADRD caregivers (120 in each group) would provide .87 power to detect a medium effect (0.50 standard deviation units) and .80 to detect slightly smaller effects (0.46) for the subjective stress outcome (i.e., Zarit Burden Interview).

Family caregivers were eligible to enroll in the study if they were (a) providing assistance to a person with a provider’s diagnosis of AD/ADRD who lived in a RLTC setting; (b) English speaking; (c) 21 years of age or older; (d) not participating in either one-to-one care consultation or other caregiver-focused individual/family counseling services; and (e) either not using or on a stable, longer term (over 3 months) dosage of psychotropic medications. Data were collected from participants throughout the United States from December 2016 through May 2021. Study staff distributed secure surveys electronically via Qualtrics or hard copy via mail, depending on caregiver preference. Research staff were blinded to participants’ random allocation when administering routine follow-up surveys.

Random Assignment, Data Collection, and Intervention

A multifaceted, national recruitment strategy included engagement with long-term care advocacy organizations and provider systems, distribution of study advertisements in local newspapers/circulars and clinical organizations, and use of local caregiver registries to identify and enroll eligible participants. Participants were provided with an information sheet and/or flyer that offered an overview of the RCTM intervention, eligibility criteria, location, timing, rationale, and compensation. Prior to consent, a research team member reviewed key information about the study with potential participants, including the goal of the project, the randomization and intervention procedures, general session topics, surveys, and compensation. A research team member shared the potential risks involved and reinforced the voluntary nature of the research. A research coordinator administered a telephone-based screening to determine eligibility; eligible caregivers were then invited to complete an online or mailed consent form.

Caregivers were randomly assigned to the RCTM intervention or to the usual care condition. Participants were allocated to the treatment or control group using a randomization sequence created in SAS statistical software by author D.R. The randomization was stratified by two factors: whether the care recipient had been admitted to an RLTC within 3 months or more than 3 months ago and whether the caregiver was a spouse or nonspouse. Specifically, the average time since admission in our pilot RCTM study was approximately 150 days (J. E. Gaugler et al., 2015); in addition, our prior analyses of change in caregiver burden and depression found significant decreases in these outcomes in the several months following RLTC admission as well as differential effects for spouse and adult child caregivers (J. E. Gaugler et al., 2010). For these reasons, we stratified our randomization on these variables. Cases were randomized within variable-sized blocks ranging from six to ten participants within each stratum. Details of the randomization sequence were concealed from the investigator and research coordinator. Following completion of the baseline survey, the research coordinator opened a sequentially numbered, sealed envelope from one of four groups (categorized based on stratifying factors) and immediately documented the randomization in a tracking database. Participants were notified of their random assignment to the treatment or control group via email or telephone after completing the baseline survey. Follow-up surveys were administered at 4-, 8-, and 12-months for caregivers in both conditions.

A trained transition coach (TC) was designated for every study participant in the RCTM treatment condition. The TCs for the present study included a master’s level marriage and family therapist and an interventionist with a PhD in clinical psychology. Transition Coach 1 received their RCTM training from the Licensed Marriage and Family Therapist who originally delivered the RCTM intervention (see J. E. Gaugler et al., 2015). Transition Coach 1 studied the intervention manual and learned how to deliver the RCTM from the intervention developer. Transition Coach 1 began delivering the intervention at the onset of study enrollment in December 2016. Transition Coach 2 joined the study in November 2017. She completed two months of training before delivering the RCTM. TC 2’s training included reviewing the intervention manual, shadowing TC 1’s intervention sessions for multiple participants, and role-playing sessions with TC 1. Of note, TC 2 shadowed TC 1’s delivery of each of the intervention’s six sessions at least two times. In addition to holding advanced degrees in counseling fields, both TCs brought considerable counseling experience to the study.

TCs conducted sessions via telephone or Zoom video conferencing based on participant preference (see J. E. Gaugler et al., 2020). Sessions took place in a secure, private environment at the University of Minnesota or via secure mobile phones used only by the TCs. No recurrent technological issues arose during the use of phone or video conferencing.

The multicomponent RCTM intervention consisted of six coaching sessions tailored to address the unique concerns and needs of primary family caregivers to be completed within a 4-month period. In addition, RCTM participants were encouraged to participate in ad hoc sessions, which could occur at any time during study participation. Check-in calls were also provided following the completion of each quarterly survey. TCs delivered the semistructured RCTM intervention to caregivers. As noted in the Conceptualization and Research Focus section, the clinical mechanisms targeted were how caregivers identified and appraised those stressors that occurred in RLTC settings and then engaged in communication strategies, support seeking, and reframing to manage these stressors to improve overall well-being. A treatment manual (see above) that informed the strategies, exercises, educational resources, and materials delivered and exchanged in the RCTM was developed at the outset of the intervention and was used to guide the counseling process.

The structure of the RCTM was adapted from other multicomponent counseling interventions for dementia caregivers (e.g., Mittelman et al., 2004), although the session content was developed specifically for dementia caregivers of relatives living in RLTC settings (J. E. Gaugler et al., 2015, 2020). Similar to the New York University Caregiver Intervention (NYUCI), the first three RCTM coaching sessions occurred weekly; the final three sessions occurred monthly. Additional family members could join sessions at the primary caregiver’s request.

The RCTM also adapted content from the NYUCI (J. E. Gaugler et al., 2015, 2020). For example, the RCTM assisted family members in pinpointing stressors that arose before, during, and following key care transitions and then applying coping approaches to enhance support and, if necessary, change their responses to these stressors. More specific to the RCTM, coaching sessions focused on processing the family caregiver’s experiences with RLTC as well as the care recipient’s adjustment to RLTC. TCs prioritized establishing rapport with the caregiver when discussing stressors and family dynamics, particularly related to their caregiving roles and RLTC placement. The intervention emphasized the importance of the caregiver and care recipient’s quality of life. Intervention content included individualized information and resources, strategies for improving interactions with the care recipient, psychoeducation on advocacy and effective communication skills, strategies for engaging with family and staff, goal setting, stress management, and problem-solving techniques.

Ad hoc sessions took place by telephone, secure video conferencing, and email. These brief, unstructured sessions allowed for coaching beyond the intervention’s six scheduled sessions and provided opportunities to immediately address crises or respond to new caregiving concerns such as changes in RLTC or decline in care recipient well-being (similar to the NYUCI in terms of structure). Caregivers in the treatment and usual care groups received quarterly check-in calls from TCs after the completion of each survey. TCs offered information resources to all caregivers if requested during the check-in calls. Treatment participants were additionally reminded of the availability of ad hoc sessions.

Measures

In addition to the SPM-RC sociodemographic and context of care covariates listed in Table 1, the following measures were collected.

Table 1.

Baseline Characteristics of Treatment and Control Participants in the Residential Care Transition Module Study

Variable Treatment group (n = 120) Control group (n = 120) Total N p
Caregiver characteristics
 Primary caregiver, N (%) 120 (100.00) 120 (100.00) 240 1.00
 Age, M ± SD 62.51 ± 10.02 64.00 ± 10.32 229 .268
 Female, N (%) 100 (83.33) 100 (83.33) 240 1.00
 White, N (%) 118 (99.16) 117 (97.50) 239 .317
 Married, N (%) 97 (80.83) 95 (79.83) 239 .846
 Earned bachelor’s degree or higher, N (%) 94 (78.33) 90 (75.00) 240 .542
 Employed, N (%) 61 (50.83) 43 (35.83) 240 .019
 Income of $40,000 or lower, N (%) 14 (12.07) 24 (20.34) 234 .086
 Relationship to relative, N (%) 240 .312
  Spouse 36 (30.00) 40 (33.33)
  Adult child 81 (67.50) 73 (60.83)
  Other 3 (2.50) 7 (5.83)
Relative characteristics
 Age, M ± SD 83.49 ± 7.99 83.21 ± 9.02 240 .797
 Female, N (%) 79 (65.83) 79 (66.39) 239 .928
 White, N (%) 114 (95.80) 118 (98.33) 239 .245
 Married, N (%) 45 (38.14) 43 (36.13) 237 .750
 Earned bachelor’s degree or higher, N (%) 45 (38.14) 51 (42.50) 238 .493
 Income of $40,000 or lower, N (%) 64 (57.14) 67 (57.26) 229 .985
 Place of residence, N (%) 240 .916
  Nursing home 28 (23.33) 30 (25.00)
  Assisted living—standard 24 (20.00) 25 (20.83)
  Assisted living—Memory care unit 63 (52.50) 62 (51.67)
  Other 5 (4.17) 3 (2.50)
 Receive Medicaid, N (%) 35 (29.66) 37 (30.83) 238 .844
 Diagnosed with dementia, N (%) 112 (94.12) 112 (94.12) 238 1.00
 Time since placement in RLTC (in months), M ± SD 19.49 ± 19.75 18.12 ± 20.55 240 .599
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Note. RLTC = residential long-term care.

Primary and Secondary Analytic Outcomes.

Primary and secondary analytic outcomes were measured at each time point. Primary analytic outcomes included subjective stress (a main mechanism of stress proliferation) and caregiver depressive symptoms (an overall measure of dementia caregiver well-being). Subjective stress was assessed with three measures: a seven-item measure of care-related strain (α = .89; Whitlatch et al., 2001), a one-item measure assessing the caregiver’s difficulty with the relative’s mental or emotional state (Whitlatch et al., 2001), and the seven-item Zarit Burden Inventory adapted for family caregivers of people in RLTC (α = .88; J. E. Gaugler et al., 2010; Newcomer et al., 1999; Zarit et al., 1986). Caregiver depressive symptoms were measured with the 20-item Center for Epidemiological Studies–Depression (CESD) scale (α = .90; Radloff, 1977) and the 15-item Mood Assessment Scale (MAS, α = .83; Yesavage & Sheikh, 1986). Abbreviated surveys were administered to caregiver’s postbereavement, containing only the CESD and MAS measures as primary outcomes.

Secondary analytic outcomes focused on other key mechanistic domains of the SPM-RC. Secondary role strains were measured with two single-item ratings of the caregiver’s and the relative’s adjustment to RLTC placement (Whitlatch et al., 2001). Residential care stress was assessed with multiple instruments: a six-item measure for perceptions of staff communication with family (α = .80); a five-item measure for staff support for family (α = .81); a 10-item measure assessing five positive and five negative types of interactions the caregiver may have had with their relative (positive interactions α = .68, negative interactions α = .72), staff (positive interactions α = .73, negative interactions α = .78), and other family members (positive interactions α = .88, negative interactions α = .84); an item inquiring about how upsetting it is for the caregiver to see their relative in a residential care setting (Whitlatch et al., 2001); and the 28-item Family Involvement Interview (α = .74; Maas et al., 2004) which explored the range and frequency of family involvement at the residential care setting. The seven-item Short Sense of Competence Questionnaire (α = .79) measured the caregiver’s perceptions of problems in their relationship and interactions with their cognitively impaired relative (Vernooij-Dassen et al., 1999). Caregiver self-efficacy (α = .85) was assessed utilizing an eight-item measure (Fortinsky et al., 2002).

Treatment Review Checklists.

Treatment Review Checklists, created to evaluate treatment utility and acceptability, were administered to treatment group participants at 4, 8, and 12 months. The checklists consisted of 21 Likert-scaled items exploring the perceived utility and feasibility of the RCTM. Internal consistency was strong (α = .96 at 4 months). Items are available in Supplemental Table S1.

Data Analysis

All data analyses were conducted in SAS Version 9.4. Data were first examined to determine whether any baseline characteristics differed between intervention and control groups using independent samples t tests for continuous variables and χ2 tests for categorical variables. Any variables that differed significantly between groups were included as covariates in subsequent models. Likewise, the primary outcome variables were assessed for group differences at baseline via independent samples t tests.

Data were then analyzed using general linear models (GLMs) to test for the main effects of the intervention on primary and secondary analytic outcomes at 4 months. Covariates in these and all models consisted of the baseline value of the analytic outcome measure, covariates that significantly varied at baseline (a binary indicator of whether the caregiver was employed), and a binary indicator for the amount of time in RLTC at baseline as it was utilized as our main stratification variable (<3 months = 0; 3 or more months = 1). For analytic outcomes that were assessed after the death of a care recipient (e.g., CESD, MAS), an additional binary indicator for bereavement status was included as a covariate.

Longitudinal models (SAS Proc MIXED) were used to conduct a series of analyses that explored the effects of the intervention on all primary and secondary analytic outcomes over time, again adjusting for the covariates and baseline outcomes as described earlier. A time-varying binary covariate for bereavement status was also included for outcomes that were assessed after the death of a care recipient. We considered how the RCTM intervention assignment influenced change in primary and secondary analytic outcomes at 4 months (the conclusion of the formal six intervention sessions) and at 12 months (the conclusion of the full evaluation period). The longitudinal models nested time points within individuals and specified an unstructured covariance matrix. The models also estimated the main effects of the condition as well as differential growth curves over time (i.e., condition multiplied by time).

Finally, a series of post hoc analyses examined the moderating effects of bereavement, employment, and time in RLTC on both the main and growth curve effects of intervention assignment on each primary and secondary analytic outcome. These three moderators were selected based on RCTM TCs’ clinical insights. Specifically, RCTM coaches identified them as potential variables that appeared to be moderating/influencing the effectiveness of the intervention during the course of the evaluation; to varying degrees, these moderating variables also emerged in a qualitative thematic analysis of post-RCTM semistructured interviews with intervention participants (Albers et al., 2023).

We considered the inclusion of a moderating variable to examine the potential empirical effects of the COVID-19 pandemic on the findings. However, our team has already conducted an analysis of the quantitative (Mitchell et al., 2023) and qualitative (Mitchell et al., 2022) effects of the pandemic on RCTM delivery and outcomes. Briefly, the pandemic did not seem to empirically moderate nor influence intervention outcomes. The qualitative findings were useful in identifying potential practices that improved engagement and care recipient well-being during the pandemic. For these reasons, we felt that adding a pandemic moderating variable would not yield new or significant findings.

Results

Participant Flow and Recruitment

Enrollment began in December 2016. The recruitment target was reached in February 2020. A total of 240 primary caregivers were enrolled in the study, with 120 participants randomly assigned to receive the RCTM and 120 participants randomly assigned to the usual care group. Four participants were assigned to the RCTM intervention and withdrew prior to completing the study. Four control participants also withdrew, three of whom did so following notification of randomization. As shown in Table 1, the treatment and control groups were statistically comparable at baseline except for employment (n = 61, 50.83% treatment vs. n = 32, 35.83% control, p < .05). Figure 1 depicts participant flow throughout the study and reasons for study withdrawal. Data collection was completed in May 2021.

Figure 1.

Figure 1

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Residential Care Transition Module CONSORT Flow Diagram

Note. CONSORT = Consolidated Standards of Reporting Trials; RCTM = Residential Care Transition Module.

a Select outcome measures were not included in the bereavement surveys (see the Measures). b Not returned indicates a missing survey from a participant enrolled in the study. See the online article for the color version of this figure.

Process Data

Of 120 treatment participants, 107 completed the full six-session intervention by phone or video conference. Overall, intervention sessions ranged from 45 to 150 min, with an average duration of 81 min. On average, participants completed the intervention in 4.16 months (SD = .78). The 13 participants who did not complete the full intervention because their care recipients passed during their intervention delivery period were invited to continue ad hoc sessions as desired (nine did so). These participants completed an average of 3.38 sessions prior to bereavement (SD = 1.12).

Most treatment group participants (n = 114, 95%) engaged in ad hoc consultation, averaging six ad hoc sessions (range 1–38 sessions, SD = 5.7). Ad hoc session duration averaged 41 min (range 5–120 min, SD = 18.4). Additionally, 81 treatment group participants engaged in ad hoc email communication, with 23 participants solely utilizing email for ad hoc support. Although control group participants were not offered routine ad hoc consultation, 34 control group participants (28.3%) received resources in response to their requests at quarterly check-in calls (range 1–8 contacts, M = 1.97, SD = 1.4). The duration of this supportive contact with control participants via phone and email averaged 15 min (range 5–35 min, SD = 8.20).1 TCs tracked the discussion of specific topics after each intervention and ad hoc communication session (see Supplemental Table S2). Emotional support was the most frequently delivered topic, occurring in 91% of intervention sessions and 53% of ad hoc contacts. Intervention group participants overwhelmingly valued the RCTM program. The average RCTM Treatment Review Checklist score out of five (1 = strongly disagree to 5 = strongly agree) was 4.21 at 4 months (n = 119), 4.33 at 8 months (n = 115), and 4.35 at 12 months (n = 110), indicating high perceptions of utility, acceptability, and satisfaction with the RCTM (see Supplemental Table S1)

When considering fidelity in the current project, we adhered to the National Institutes of Health Behavior Change Consortium recommendations (Bellg et al., 2004; see also Gitlin & Parisi, 2016) across the following dimensions: (a) adherence to the intervention protocol; (b) treatment delivery; (c) treatment receipt; and (d) treatment enactment. As noted, participants almost uniformly adhered to the intervention in terms of completion of scheduled sessions; moreover, additional elements to ensure treatment adherence included ongoing regular meetings between the counselors as well as the first author to monitor cases and the completion of session-by-session tracking forms to ensure that the intervention was delivered as intended. Detailed notes were also maintained by the interventionists that summarized each counseling contact. As documented on the RCTM Treatment Review Checklists, participants received the intervention well and as intended, and treatment group participants largely assessed the intervention as beneficial, feasible, and acceptable. In terms of enactment, both the RCTM Treatment Review Checklists as well as available qualitative data collected via post-RCTM semistructured interviews (see Albers et al., 2023) suggested that participants applied the various clinical recommendations that occurred during RCTM sessions to interactions with care recipients and staff as well as to their own coping and self-care strategies.

Quantitative Outcome Findings

All analyses were based on the intention-to-treat assumption and included all randomized participants. The GLMs that examined change in outcomes over the first 4 months of the study revealed no significant differences between the treatment and control group on any of the primary analytic outcomes (subjective stress and depressive symptoms; see Table 2). Among secondary analytic outcomes at 4 months, the treatment group reported more negative staff interactions (ß = .39, p = .020) than the control group (see Supplemental Table S3).

Table 2.

Effects of Intervention on Primary Analytic Outcomes at 4 Months

Variable Treatment group
 Control group
 Adj. diff. Std. effect p
Baseline
 4 months
 Baseline
 4 months
M SD M SD M SD M SD
Care-related strain 23.39 6.61 22.29 6.55 23.98 6.56 21.98 7.20 0.78 0.15 .269
Mental state 1.17 0.49 1.04 0.54 1.27 0.58 1.08 0.58 0.02 0.04 .784
ZBI 13.30 5.64 11.92 5.35 13.59 5.76 12.22 5.48 0.03 0.01 .956
CESD 13.94 10.84 12.80 10.88 14.34 8.97 12.80 11.09 0.62 0.08 .556
MAS 3.46 3.35 2.88 2.83 3.32 2.93 3.14 3.29 −0.32 −0.16 .233
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Note. Covariates included baseline value of the outcome, caregiver employment status, whether the care recipient was in the RLTC less than 3 months or 3 months or more prior to baseline, and bereavement status for CESD and MAS. Adj. diff = covariate adjusted group difference (treatment—control) at 4 months; Std. effect = standardized effect, the adj diff. divided by the square root of the mean square error from the analytic model; ZBI = Zarit Burden Inventory; CESD = Center for Epidemiological Studies-Depression; MAS = Mood Assessment Scale; RLTC = residential long-term care.

Over the full 12-month study period, adjusted longitudinal mixed models did not indicate any direct effect of RCTM participation on primary analytic outcomes (see Table 3). The 12-month adjusted models for the secondary analytic outcomes (e.g., additional stress process mechanisms) also revealed slight but significant increases in more negative interactions with other family members over time (ß = .06, p = .041) as well as declines in caregiver sense of competence over time (ß = −.19, p = .017) in the RCTM treatment group when compared to controls (see Supplemental Table S4).

Table 3.

Longitudinal Mixed Models Effects of Intervention on Primary Analytic Outcomes

Variable Month effect
 Treatment effect
 Month × Treatment Effect
Estimate (CI) SE p Estimate (CI) SE p Estimate (CI) SE p
Care-related strain −0.18 [−0.30, −0.07] 0.06 .002 0.61 [−0.74, 1.96] 0.68 .373 0.10 [−0.07, 0.27] 0.09 .231
Mental state −0.01 [−0.03, 0.01] 0.01 .219 4.60e−3 [−0.13, 0.14] 0.07 .945 4.55e−4 [−0.02, 0.02] 0.01 .969
ZBI −0.25 [−0.35, −0.15] 0.05 <.001 0.03 [−0.98, 1.03] 0.51 .960 0.13 [−0.01, 0.27] 0.07 .071
CESD −0.19 [−0.39, 0.01] 0.10 .066 0.16 [−1.84, 2.16] 1.01 .874 −0.03 [−0.31, 0.25] 0.14 .824
MAS −0.01 [−0.07, 0.04] 0.03 .663 −0.19 [−0.68, 0.30] 0.25 .442 −6.97e−3 [−0.08, 0.07] 0.04 .853
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Note. Covariates included baseline value of the outcome, caregiver employment status at baseline, whether the care recipient was in the RLTC less than 3 months or 3 months or more prior to baseline, and bereavement status at the time of the assessment for CESD and MAS. CI = confidence interval; SE = standard error; ZBI = Zarit Burden Inventory; CESD = Center for Epidemiological Studies-Depression; MAS = Mood Assessment Scale; RLTC = residential long-term care.

Post hoc analyses examined several potential moderators of the treatment effect over the first 4 months: employment, time in RLTC, and bereavement for variables collected after the death of the care recipient. Among primary analytic outcomes (i.e., subjective stress), it was found that employed caregivers in the treatment group reported significantly increased burden during the first 4 months of participation when compared to other treatment and control caregivers (ß = 2.14, p = .041; see Figure 2 and Supplemental Table S5). Additionally, caregivers in the treatment group whose care recipient had been admitted to an RLTC less than 3 months prior to baseline reported better mood on the MAS over the first fourth months (depressive symptoms) when compared to other participants (ß = 1.39, p = .041; see Supplemental Table S5). When considering moderators of 4-month outcomes for secondary analytic outcomes that represented mechanisms of the stress process, our models indicated that employed caregivers in the treatment group reported less relationship challenge on the Short Sense of Competence Questionnaire over the first 4 months compared to unemployed control participants as well as employed control participants (ß = −2.84, p = .040; see Supplemental Table S6).

Figure 2.

Figure 2

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Longitudinal Mixed Methods: Zarit Burden Inventory Adjusted for Potential Moderators: Employed × Treatment × Month

Note. See the online article for the color version of this figure.

Post hoc analyses over the 12-month study period revealed two significant interaction effects: one on the primary analytic outcome of depressive symptoms, the other on the secondary analytic outcome/stress process mechanism of self-efficacy. Treatment group participants whose relatives had been in RLTC for less than 3 months reported larger decreases in depressive symptoms as measured by the MAS when compared to RCTM caregivers whose relatives had been in RLTC for more than 3 months. The initial decreases in the MAS for participants in the RCTM group whose relative had been in RLTC for less than 3 months dissipated over time and approximated levels reported by the other participants afterward (ß = −.21, p = .028; see Figure 3 and Supplemental Table S7). In addition, the change in caregiver self-efficacy was significantly moderated by employment. Caregivers in the treatment group who were employed increased their self-efficacy over time, whereas those in the treatment group who were unemployed declined in self-efficacy slightly after an increase at 4 months (ß = .56, p = .027; see Figure 4 and Supplemental Table S8).

Figure 3.

Figure 3

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Longitudinal Mixed Methods: Mood Assessment Scale Adjusted for Potential Moderators: Time in RLTC × Treatment × Month

Note. RLTC = residential long-term care. See the online article for the color version of this figure.

Figure 4.

Figure 4

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Longitudinal Mixed Methods: Caregiver Self-Efficacy Adjusted for Potential Moderators: Employed × Treatment × Month

Note. RLTC = residential long-term care. See the online article for the color version of this figure.

A sensitivity analysis was conducted that removed data collected after care recipients died during the 1-year evaluation period. The removal of postbereavement data did not influence the lack of empirical effects of the RCTM on primary or secondary outcomes. The removal of postbereavement data resulted in two moderator effects that no longer reached statistical significance. For those caregivers who had a relative living in RLTC for 3 months or less, no statistically significant differences among the treatment or control group emerged on mood/the MAS over the first 4 months (ß = 1.33, p = .070). Similarly and again for those caregivers who had a relative living in RLTC for 3 months or less, no statistically significant differences were apparent for depressive symptoms over a 12-month period (p = .176). The findings indicate that when removing postbereavement data from the analyses of treatment moderation, depressive symptoms/mood specifically were less likely to change significantly across the RCTM treatment and control conditions. The other two significant moderator effects reported above remained statistically significant at the p < .05 threshold.

Discussion

The RCTM did not exert direct, statistically significant effects on the hypothesized stress process outcomes or mechanisms over a 12-month period. The lack of effects occurred even though the intervention was delivered with fidelity and was perceived as useful, acceptable, and beneficial on the part of dementia caregivers in the treatment condition. The results are consistent with a fairly large number of dementia care intervention evaluations (Butler et al., 2020; Committee on Care Interventions for Individuals with Dementia and Their Caregivers et al., 2021; Gitlin et al., 2020). In other instances, treatment effects were in the direction opposite what was anticipated (e.g., negative interactions with staff). Throughout intervention participation, coaches encouraged caregivers to actively advocate with staff for the relative’s care needs, which may have caused some unease between caregivers and staff.

An emphasis on the direct effects of interventions on mechanisms or health outcomes is beneficial in terms of establishing internal validity, particularly in rigorously performed randomized controlled designs. However, the heterogeneity of dementia care also demands a broader consideration of key contextual factors that may influence the efficacy and effectiveness of interventions (J. E. Gaugler et al., 2021; Green et al., 2009). Our consideration of clinically identified moderators suggested several important characteristics that may influence under what circumstances an intervention such as the RCTM could yield benefits for dementia caregivers. For example, employed caregivers appeared to experience greater self-efficacy and a sense of competence when participating in the intervention; the RCTM possibly helped participants navigate the challenges of balancing employment responsibilities and remaining connected with relatives in RLTC. The telehealth delivery format of the RCTM may have provided ongoing psychosocial and psychoeducational support for these caregivers in instances when their work schedules would have precluded in-person participation. Caregivers of persons with dementia indicate greater work-related disruptions than caregivers of individuals with other conditions (The Alzheimer’s Assocation, 2022). Interventions that can balance employment and dementia care responsibilities effectively are a potentially promising area for dementia care interventions to target and may have accounted for the RCTM’s benefits in this area (Neubert et al., 2021).

Time since institutionalization also demonstrated some moderating effects. Treatment group caregivers whose relatives resided in their RLTC setting for less than 3 months initially indicated a better mood over 4 months than all other participants over the 4-month intervention period. However, throughout the full 12-month period, this beneficial effect seemed to reverse when compared to treatment participants who had relatives in RLTC for longer than 3 months. These complex empirical effects suggest the need to potentially target the timing and modify the content of the RCTM based on the duration of care recipients’ RLTC stay. For example, the period immediately preceding and following institutionalization may require more intensive psychosocial and/or psychoeducational support. It is possible that our 12-month intervention design with quarterly survey intervals did not effectively capture when immediate challenges occurred for families.

There are various limitations to consider. Although multiple attempts were made to engage with RLTC programs throughout the United States that serve diverse communities, our study sample remained predominantly White and well-educated, which is not representative of a diversifying older U.S. and residential care population. Similarly, as we relied on volunteers for our study sample, it is likely that these individuals do not reflect the heterogeneity of dementia caregiving experiences following RLTC admission. Instead, our volunteer sample represents dementia caregivers with a greater capacity and/or motivation to participate in an intervention study such as ours. In addition, we did not consider the potential stress of caregivers who assisted relatives who did not speak English, which may introduce multiple challenges following RLTC admission for such caregivers (e.g., communication of a non-English speaking relative’s needs with staff). Facility-level data (beyond dementia caregivers’ perceptions of care and staff) were not collected as part of this intervention’s evaluation. Facility-level variables may have interacted with or influenced dementia caregivers’ outcomes as well as their potential reaction to the RCTM itself (particularly during COVID-19). The RCTM focused on psychosocial support and psychoeducation of a single dementia caregiver. Dementia care during and after the RLTC transition occurs within both existing family networks as well as staff/caregiver relationships. It is possible that rather than providing support following institutionalization, offering psychosocial support and psychoeducation prior to the RLTC transition may better prepare dementia caregivers for adapting to this event. In our prior work evaluating the long-running New York University Caregiver Intervention, we found that the provision of individual and family counseling, support groups, and ad hoc consultation was associated with declines in burden and depressive symptoms prior to and following institutionalization (J. E. Gaugler et al., 2008) although counseling and support may have been delivered years before the transition. We intentionally tracked many stress process outcomes and mechanistic variables, but the statistical significance of these findings, particularly those involving moderation effects, should be considered preliminary and interpreted with caution as there is an elevated risk of Type I errors (moreover, only two moderation effects were significant when postbereavement data were removed from the analyses). Similarly, baseline employment varied between the treatment and control condition; as a significant potential moderator of effects, this baseline variation may bias the findings. As noted in our qualitative work examining perceptions of benefit of the RCTM (Albers et al., 2023), dementia caregivers indicated several domains (e.g., improved communication with staff) that were not adequately captured in the stress process measures operationalized in the current quantitative evaluation. Also, there is some risk that the Treatment Review Checklist data collected after Time 3 for RCTM intervention participants are redundant. Most participants completed their formal counseling sessions prior to and near the administration of Time 2. In our prior work evaluating the NYUCI for Adult Children (see J. E. Gaugler et al., 2015), participants did not complete their six formal counseling sessions over a 4-month period but instead chose to extend these sessions on average for 11 months. For these reasons, we decided to administer the RCTM Treatment Review Checklists over time rather than just at Time 2 to account for a potential prolongation of counseling sessions. However, caregivers adhered to the six sessions/4-month RCTM protocol as intended. A key method to assess fidelity (observation/recording of counseling sessions) did not occur as well.

The results have implications for dementia care science. As noted earlier, placing main empirical effects in context via clinically and/or conceptually driven factors to explain how and why a given intervention’s benefits are apparent can bridge the gap between internal and external validity of randomized controlled trials in dementia care. Such efforts are increasingly salient when informing potential dissemination and implementation. For example, understanding when, for whom, and under what circumstances a given intervention holds the most potential can better inform adoption decisions and implementation success (J. E. Gaugler et al., 2021; Onken, 2022).

Relatedly, when considering the direct effects of the RCTM, there was a lack of convergence between the main outcome findings and the participant ratings of the RCTM as provided on the Treatment Review Checklists (as well as qualitative findings of benefit; see Albers et al., 2023). For example, RCTM treatment participants who completed post-RCTM semistructured interviews and responded to an open-ended item on the Treatment Review Checklists indicated that various aspects of RCTM clinical content (e.g., education above dementia progression and dementia behavior management; personalized resource provision; strategies for communication and engagement with the care recipient and others; management of multiple roles; relaxation exercises) and coaching processes (emotional support provided by coaches; knowledgeability of coaches; coaches serving as a neutral third party) resulted in improvements in caregiver mood and confidence as well as improved communication and interaction with care recipients (Albers et al., 2023). Some scholars have emphasized the need to consider outcome measures that better capture the effects of what are, in many instances, highly tailored interventions that require more appropriate, person-centered measures that reflect intraindividual changes. For example, goal-based measures (where personalized goals are identified and measured as a central outcome of an intervention) could help researchers assess benefits that are of the greatest value to caregivers and persons living with AD/ADRD (J. E. Gaugler et al., 2020; Jennings et al., 2018). Such efforts would help to align clinical intervention benefits experienced by people living with dementia and their caregivers with measurable outcomes that more accurately reflect intervention participation.

Supplementary Material

Supplemental Material

Public Significance Statement.

Family members of cognitively impaired relatives may experience distress following a relative’s admission to a residential long-term care setting. The goal of this study was to evaluate the efficacy of the Residential Care Transition Module, a support program for family caregivers of relatives with dementia living in residential long-term care. Although the findings did not indicate direct benefits, several contextual factors suggested for whom and when the Residential Care Transition Module may prove helpful.

Acknowledgments

The National Institute on Aging of the National Institutes of Health (Grant R01 AG048931 to Joseph E. Gaugler) supported this work. Additional support for this work includes the Robert L. Kane Endowed Chair in Long-Term Care and Aging and a grant from the National Institute on Aging from the National Institutes of Health (Grant K99 AG07346 to Zachary Baker).

The authors thank the families and residential long-term care providers who graciously contributed their time to this study. The authors also thank Tamara Statz for her involvement in delivering the intervention; Mark Reese for his extensive preliminary work in establishing the clinical framework of the Residential Care Transition Module; Hayley McCarron for her data collection and management efforts; Tom Cidav for his assistance with data management and data analysis; and Carol Whitlatch and Carolyn Porta for their guidance and contributions in assisting the project team. This article is the first dissemination of the full, quantitative trial results. The authors have no conflicts of interest to disclose.

Footnotes

The data, analytic methods, and study materials are available at https://doi.org/10.3886/E198382V1. This study is registered at https://clinicaltrials.gov/ ( NCT02915939).

1

The time duration for emails was estimated for each email instance (i.e., an email to or from a participant would be recorded as one contact log entry, and the email response would constitute a second contact log entry). Coaches rounded to the nearest 5-minute mark when recording time for any contact log entry. As such, most email instances were recorded as taking 5 min. However, emails that took longer to write or read, such as emails that included locating resources, were recorded for the total length of time involved in the email’s completion (i.e., if it took 20 min to locate resources and 10 min to write the email to share those resources, the total time recorded in the contact log was 30 min).

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