https://orcid.org/0000-0002-3526-0828
Figures
Abstract
We examine the efficacy of the Individualized Coordination and Empowerment for Care Partners of Persons with Dementia (ICECaP), an intervention that involves one-on-one individualized support from a dementia care coordinator for a dementia care partner, compared to an active control group. At least once monthly contact is made from a dementia care coordinator to the dementia care partner by telephone, video conferencing, email, or in-person support at clinical visits for the person with dementia. In this pilot randomized unblinded control trial of ICECaP, n = 61 (n = 90 randomized) care partners completed 12-months of the ICECaP intervention and n = 69 (n = 92 randomized) care partners received routine clinical support (controls) in an outpatient memory care clinic at an academic medical center, from which the participants were recruited. Early termination endpoints (death and higher level of care) and trial drop out were comparable across groups. Primary efficacy outcomes were evaluated by comparing changes in care partner mental health, burden, and quality of life from baseline to 12-months between ICECaP and controls. Linear mixed-effects model with covariate adjustment revealed no significant group differences in longitudinal changes on measures of caregiving burden, care partner depression, anxiety, quality of life, or reactions to the behavioral symptoms of the person with dementia. Hypothesized reasons for lack of initial efficacy on primary 12-month outcomes are discussed.
Citation: Gallagher VT, Arp A, Thompson R, Rossetti MA, Patrie J, Reilly SE, et al. (2025) Randomized clinical trial of ICECaP (Individualized Coordination and Empowerment for Care Partners of Persons with Dementia): Primary mental health and burden outcomes. PLoS ONE 20(1): e0309508. https://doi.org/10.1371/journal.pone.0309508
Editor: Qi Yuan, Institute of Mental Health, SINGAPORE
Received: August 22, 2024; Accepted: December 8, 2024; Published: January 24, 2025
Copyright: © 2025 Gallagher et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Data Availability: The baseline and 12 month data are freely available in a public repository: Gallagher, Virginia, 2024, “Individualized Coordination and Empowerment for Care Partners of Persons with Dementia (ICECaP): 12 month results”, https://doi.org/10.7910/DVN/YP4YY0, Harvard Dataverse, V1, UNF:6:GfAdGRjoO0YUOJlmpSwzTQ== [fileUNF].
Funding: This work was funded by the Department of Defense (AZ190036) and by the Mary Harrison foundation; program development and pilot feasibility testing was funded by the Virginia Department for Aging and Rehabilitative Services (45918). REDCap support at the University of Virginia is supported in part by the National Center for Advancing Translational Sciences of the National Institutes of Health under Award # UL1TR003015. Virginia Gallagher is an iTHRIV Scholar. The iTHRIV Scholars Program is supported in part by the National Center for Advancing Translational Sciences of the National Institutes of Health under Award Numbers UL1TR003015 and KL2TR003016, the University of Virginia Department of Neurology and the UVA Brain Institute. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Competing interests: The authors have declared that no competing interests exist.
Introduction
There are over 11 million family members and friends providing unpaid care for persons with dementia in the United States. Informal dementia caregiving is valued at $350 billion and 18.4 billion hours of care per year nationally [1]. Although many dementia care partners experience meaning and fulfillment in the context of their caregiving role, caring for a person with dementia is associated with increased levels of psychosocial stress, depression, and emotional burden [2–9].
Many programs and interventions have been developed to support dementia care partners and improve their mental health, quality of life, and caregiving readiness. Among them, care coordination (also referred to as care navigation) has emerged as a promising, individualized intervention to help care partners and their care recipients with dementia navigate complex health systems, financial/insurance systems, community resources, and the emotional burden of caregiving [10–13]. Traditionally, care coordination involves one trained care coordinator providing support to a one care partner and/or patient with navigation of health systems, resource identification, and some degree of social/emotional support [10–12]. As of 2023, approximately 12 dementia care coordination programs had been developed in the United States [14]. Three programs in the United States have tested care coordination’s impact on care partner burden and mental health using randomized clinical trial (RCT) design [11,15–17]. These programs, in which care coordination was delivered exclusively via telephone, reported improvement in care partner symptoms of depression and caregiving burden after variable duration of the intervention, ranging from 3 to 18 months [11,15–17]. In July 2024, the Centers for Medicare and Medicaid Services launched the Guiding an Improved Dementia Experience (GUIDE) Model, which will fund 390 teams across the country to provide coordinated dementia care. Teams funded by GUIDE are required to provide a care coordinator (referred to as a care navigator in GUIDE) to care partner-dementia patient dyads. As such, it is imperative to understand the efficacy of care coordinator programs in improving the mental health and quality of life dementia care partners.
In 2018, a team at the University of Virginia, along with its partners, developed an intervention for dementia care partners called ICECaP: Individualized Coordination and Empowerment for Care Partners of Persons with Dementia. ICECaP involves individualized elements of care coordination, supportive counseling, psychoeducation, and skills training and is delivered in a hybrid setting—combining an optional initial home visit; ongoing, at least-monthly telehealth interactions via phone, email, and HIPAA-compliant video calls; and accompaniment to clinic visits for the person with dementia. As outlined in the ICECaP protocol paper [18], this intervention was developed based off of the theoretical care partner stress framework (Fig 1), which was adapted from Zarit & Savla’s (2015) biopsychosocial stress process model; this model was updated to incorporate aspects of the Lee (2021) stress process model to easily visualize pathways that can prevent adverse mental and physical health outcomes, as well as Gleason’s model (2022) of the National Institute on Aging (NIA) Health Disparities Research Framework in Alzheimer’s disease risk, in order to better conceptualize social determinants of health [7,19,20]. As depicted in Fig 2, ICECaP aims to improve care partner mental health by targeting and intervening on modifiable mediators (e.g., dementia knowledge, caregiving preparedness, resource knowledge, and social support).
Relative to previous RCTs testing care coordination interventions that focus on care partner mental health [11,15–17], ICECaP is unique in that delivery of care coordination is done in a hybrid environment (contacts between the care coordinator and the care partner occur both in the memory clinic and outside of the clinic, and via face-to-face interaction, email, phone calls, text messaging, and video calls). This study is also novel in its geographic setting (central Virginia), given that previous RCTs of care coordination programs aimed at improving care partner mental health have been conducted in California, Iowa, and Pennsylvania [11,15–17].
Here, we report preliminary, primary efficacy outcomes for a pilot, unblinded randomized control trial (RCT) of ICECaP. Please see Gallagher et al. 2024 for program details, qualification and training of dementia care coordinators, the ICECaP protocol, and analytical plan [18]. We evaluate Aim 1 of the ICECaP RCT: determine whether ICECaP improves care partner burden, symptoms of depression, reaction to the behavioral symptoms of dementia, and quality of life. We hypothesized that after controlling for baseline characteristics, including level of care-recipient functional dependence, care partners in the ICECaP group would significantly improve from baseline to 12 months (post-intervention) on mental health and quality of life measures, whereas controls would not improve.
Methods
This study was approved by the University of Virginia Institution Research Board for Health Sciences Research and registered with clinicaltrials.gov (NCT04495686). All care partners and persons with dementia underwent a written informed consent process one-on-one with a trained clinical research coordinator (CRC) prior to initiating study procedures. Consent was documented with the signature of the participant and the CRC. All participants were provided with a signed copy of the consent document. This research was supported by the Department of Defense, Virginia Department for Aging and Rehabilitate Services, and the National Institutes of Health.
Recruitment
As reported in the published protocol [18] and the feasibility and acceptability data for the ICECaP clinical trial [21], persons with dementia and their care partners were recruited from March 1, 2021 to September 30, 2022 from the University of Virginia’s multidisciplinary Memory and Aging Care Clinic (MACC). Care partners were required to be aged ≥18 years, possess basic spoken and written English skills, have home-based internet access, and self-identify as the primary care partner for a patient diagnosed with mild to moderate dementia who was living in the community (e.g., not in a continuing care facility). During the course of the trial, eligibility criteria was expanded to include patient populations being overlooked for recruitment. Changes made included lowering age requirements, and including multiple etiologies of dementia. Care partners were excluded if they were aged <18 years, or if their associated care recipient with dementia resided in an assisted living facility or nursing home and/or had more than one follow-up multidisciplinary appointment in MACC following their dementia diagnosis. Using a random permuted block randomization scheme generated by the study statistician and implemented by the clinical research coordinator at enrollment, care partners were randomly assigned to 12-months of ICECaP or 12-months of routine clinical care (controls) using PROC plan procedure of SAS version 9.4 (SAS Institute Inc., Cary, NC). Fourteen blocks of ten assignments were generated: five ICECaP and five active control assignments, in random order. This study was unblinded.
Target sample size
Based on an a priori power analysis, the target sample size was n = 140 CPs, (50% ICECaP and 50% control) to achieve at least 0.80 power for detecting a small-to-medium Cohen’s d effect size (d = 0.3 to 0.5) when comparing baseline to 12-month mean change in the care partner’s depression score (Center for Epidemiological Studies Depression Scale–Revised) between ICECaP and controls and when comparing the baseline to 12-month mean change the care partner’s burden score (Zarit Burden Interview) between ICECaP and control groups at a significance level of α = .05 for each outcome measure. Power calculations assumed a 50% ICECaP and 50% control allocation ratio and a 2-sided α = 0.05 significance level null hypothesis test. POWER procedure software of SAS version 9.4 (SAS Institute Inc., Cary NC) was used to conduct the power analysis.
Sample and attrition
As described in Thompson et al. (under review) [21], of the n = 169 (control n = 87, ICECap n = 82) care partners recruited into the RCT who completed baseline assessments (out of 182 participants randomized), 23.08% were withdrawn from the final sample because within 12-months, the person with dementia died (n = 9), moved to a higher level of care (n = 8), or moved out of state (n = 1); or the care partner chose to withdraw (n = 4), was lost to follow-up despite two attempts to contact (n = 13), or did not complete 12-month assessments (n = 4). See Fig 1. The final sample of care partners for 12-month outcome analyses consisted of n = 69 controls and n = 61 ICECaP who completed baseline and 12-month assessments.
Procedures and intervention
Please see Gallagher et al. [18] and S1 File for details. Questionnaires listed in Table 1 were completed online by both ICECaP and control groups at baseline and 12-months after baseline. Additional questionnaires for sample characterization included the Katz Index of Independence in ADLs (Katz Basic ADLs) [22], the Lawton-Brody Instrumental ADL Scale (Lawton-Brody Complex ADLs) [23], and the Neuropsychiatric Inventory Questionnaire, all completed by the care partner about the person with dementia [24]. All measures were collected and stored using REDCap [25], hosted by the University of Virginia, and were monitored by the clinical research coordinator for missing data.
Intervention.
After baseline questionnaires were completed, a trained dementia care coordinator (referred to going forward as care coordinator) called or e-mailed care partners in the ICECap group to schedule the initial contact. To assess each care partner’s needs, care coordinators reviewed care partner responses to questionnaires listed in Table 1, as well as the care partner’s response to two questions assessing topics of interest/need for the care partner (see S2 File). A care coordinator contacted the care partner at least once per month via email, telehealth phone/video, or an in-person meeting for at least 15 minutes. During these contacts, the care coordinator provided supportive counseling and related services based on the care partner’s expressed needs (e.g., behavioral management, safety strategies, case management, healthcare referrals, psychoeducation). Care partners were encouraged to contact care coordinators as needed. After the initial contact, care coordinators were also required to attend regular MACC follow-up appointments with the care partner and their associated person with dementia. These follow-up appointments typically occur every 6 to 12 months.
Statistical analysis
Data summarization.
Descriptive categorical data were summarized by frequencies (n) and relative frequencies (%), and descriptive continuous scaled data were summarized by either the mean and standard deviation (SD) or the median and interquartile range of the distribution.
Baseline analysis.
Although randomization imbalance with respect to caregiving characteristics of the ICECaP and control groups would be rare, sensitivity analyses were conducted to assess for such imbalances. Statistical comparisons of distribution means were conducted via the Welch two-sample t-test, while statistical comparisons of distribution medians were conducted by the Wilcoxon two-sample Rank Sum test. Statistical comparisons of the relative frequencies of each characteristic were conducted by the Pearson two-sample exact test.
Efficacy analyses.
Statistical analyses were conducted using the statistical software package SAS version 9.4 (SAS Institute Inc., Cary NC). Pre- to post-intervention 12-month changes in care partner burden (ZBI total score), depression (CESD-R total score), anxiety (GAI total score), reaction to dementia symptoms (RMBPC Reaction score) and quality of life (WHO-5 score) were the focus of the ICECaP trial efficacy analyses. Each efficacy analysis was conducted using a two-step analytical approach. In step 1, a linear mixed-effects model was used to estimate, the intervention-specific mean pre- to post-intervention 12-month efficacy outcome change, under the relaxed heterogenous versus homogenous equal variance assumption. A linear mixed model-derived one-sample t-test was then used to test the null hypothesis that the mean pre- to post-intervention 12-month efficacy outcome change is equal to zero (versus the alternative: not equal to zero). A two-sided α = 0.05 significance level was used. In step 2, a linear mixed-effects model with covariate adjustment was used to test the null hypothesis that the mean efficacy outcome change from baseline to 12-months is the same for ICECaP and controls, after adjusting for baseline Katz Index of Independence in (Basic) ADLs and Lawton-Brody Instrumental (Complex) ADL Scale scores. A two-sided α = 0.05 significance level was used as rejection rule for this null hypothesis test. Analysis was based on the intention-to-treat (ITT) principle.
Results
Baseline results
Demographic and caregiving characteristics are presented in Table 2. There were no missing data in the demographics or outcomes variables for this study.
As expected with randomization procedures, there were no significant differences in baseline scores on any primary outcome measures between groups (see Table 3). Within both groups at baseline, average caregiver burden was in the clinically significant range based on suggested ≥11 cut-score from Bedard [31] and ≥13 cut-score from Brazilian community-based data [32]; however, caregiver burden was on average below clinically significant range based on suggested ≥19 in Singapore community-based data [33]. Average depression scores and anxiety scores were below the threshold for at-risk clinical depression (cut-score ≥16 [27]) and anxiety (cut-score ≥9 [28]), respectively. Participants on average endorsed being between “a little” to “moderately” bothered by the person with dementia’s behavioral symptoms; there is no defined clinically significant cutoff in the literature. There is no established cutoff for the WHO-5 quality of life score; however, Topp et al. [30] suggests ≤50% adjusted score (raw score multiplied × 4) indicates poor well-being; adjusted WHO-5 average raw score was 56.84% for ICECaP and 55.08% for controls. Baseline scores on the Lawton IADL were similar to other prior studies with dementia patients (range = 2.8–4.3 [34,35]), and baseline scores on the Katz ADL indicated a severe level of impairment on average [36].
Longitudinal results
Feasibility and acceptability data are described by Thompson et al. [21]. To briefly review engagement metrics, care partners in the ICECaP group who completed the intervention had an average of 2.2 contacts per month with their assigned care partner, most commonly via email. Care coordinators spent an average of 34.4 minutes per month, per care partner, in direct contact and 33.7 minutes per month, per care partner, conducting indirect activities (e.g., coordinating care without the care partner involved, investigating local resource options, etc.).
Longitudinal outcomes analyses revealed no significant differences in baseline to 12-month change on primary outcome measures between ICECaP and controls (see Table 3). Results were consistent when the baseline Katz Basic ADLs and Lawton-Brody Complex ADLs were included as covariates in analyses.
Post-hoc analyses
Post-hoc analyses revealed that care partners in the ICECaP group who did not complete the intervention (non-completers, n = 21) endorsed higher baseline scores on the CESD-R compared to care partners in the ICECaP group who completed 12 months of the intervention (completers, n = 61) (Mdiff = −6.31, t = −2.123, p = .037). No group differences were observed between non-completers and completers on the Zarit-SF, GAI, RMBPC, or WHO-5 at baseline (ps ≥ .173).
Additionally, a post-hoc correlation matrix was conducted to explore the relationships among a) baseline to 12-month change on primary outcome measures and b) ICECaP engagement metrics within the ICECaP group, including total number of care partner-dementia care coordinator contacts (across all modalities combined and separately by in-person, video, phone, email, and snail mail), average contacts per month, direct minutes (total and average per month), and indirect minutes (total and average per month) of care coordinator time. There were no significant correlations after applying a False Discovery Rate of 0.05 using the Benjamini-Hochberg procedure (see S1 Table) [37]. Uncorrected significant correlations between engagement metrics and longitudinal change on outcome measures suggested that increased number of total in-person contacts and total phone contacts across the 12-month intervention was associated with increased caregiver burden from baseline to 12-months (ps ≤ .016).
Discussion
This paper presents the preliminary, 12-month efficacy results of a pilot RCT of the ICECaP intervention for care partners of persons with dementia. On average, the 12-month intervention did not appear to significantly change care partners’ self-reported levels of burden, depression, anxiety, quality of life, or reaction to behavioral symptoms in the person with dementia. There were no significant differences between the ICECaP intervention group and the control group in key outcomes at baseline, 12-months, or in change from baseline to 12-months. Further, among the ICECaP group, total care coordinator-care partner contacts or average number of contacts per month did not significantly impact the magnitude of change from baseline to 12-months on outcome measures.
There are several possible explanations why there were no significant mental health, burden, or quality of life benefits detected in this 12-month RCT of ICECaP. First, this cohort of dementia care partners did not indicate experiencing elevated mental health distress, severe caregiving burden, or poor quality of life at baseline according to self-report measures. This is consistent with the relatively high socioeconomic status of this sample, who are majority non-Hispanic White and well educated, rendering them less vulnerable to adverse impacts of caregiving. Therefore, a floor effect may be present in which care partners’ self-report measure scores did not have ample room to allow for change in a positive (i.e., improved) direction. Additionally, the relatively high socioeconomic status of the current sample limits generalizability of these findings to care partners from more diverse socioeconomic backgrounds. In sum, future efficacy testing of ICECaP should have more restrictive inclusion criteria to include only care partners who have elevated levels of the target factor (e.g., burden, depression, and/or anxiety) and greater consideration of diverse socioeconomic statuses.
Additionally, no differential group-by-time effects may have been detected in this RCT due to the nature of the control group in this study. Specifically, all care partners included in both the intervention and control group received follow-up care in the UVA Memory and Aging Care Clinic (MACC). Follow-up care in MACC typically involves a one-hour appointment for the person with dementia and their care partner(s) one to two times per year with a multidisciplinary team of neuropsychologists, neuropsychology postdoctoral fellows, a nurse practitioner, a pharmacist, an occupational therapist, and a speech-language pathologist, among other specialties. While these appointments are scheduled for the person with dementia, the accompanying care partner receives information about pharmacological and non-pharmacological behavioral management strategies; long-term care planning support; dementia psychoeducation; psychotherapy and support group options for care partners; information regarding adult day, continuing care, and respite facilities; and other local resources. Further, care partners are often provided emotional support, validation, and encouragement; at times, the care partner and the person with dementia are separated during the appointment so a care partner can receive one-on-one validation and support (e.g., while the person with dementia is completing brief testing to inform treatment recommendations). Although once to twice yearly support in the multidisciplinary clinic is a lower frequency and intensity of support relative to the monthly support care partners receive in ICECaP, it is possible that there is too much overlap in support that was provided to both the ICECaP group and the control group to detect a signal. In the future, it may be more appropriate to restrict the control group to care partners in the community who are on the waitlist for or do not have access to specialty care services.
Lastly, as shown in post-hoc analyses, care partners in the ICECaP group who were withdrawn from the study prior to completion of the intervention reported higher rates of depression at baseline compared to care partners who completed the intervention completed the study. Consequently, this loss of participants who may have benefited from receiving 12 months of ICECaP could have contributed, at least in part, to the lack of a group-by-time effect. Future studies on dementia care partners may wish to include additional assessments at shorter time intervals to capture greater detail on the impacts of study participation and to allow for greater preservation of participant data given the progressive and terminal nature of dementia.
Supporting information
S1 File. Published ICECaP clinical trial protocol.
https://doi.org/10.1371/journal.pone.0309508.s001
(PDF)
S1 Table. Correlation matrix of engagement metrics and outcome data within the ICECaP group.
https://doi.org/10.1371/journal.pone.0309508.s003
(XLSX)
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