Virginia Terwilliger Gallagher

UNSTRUCTURED Instructed not to include for research letter.

Background: The majority of family dementia caregivers in the United States (U.S.) are now young and middle-aged adults. However, little research has been conducted to understand how caregiver needs and preferences for support differ depending on their phase of adulthood. This study evaluated differences in mental health, caregiving readiness, desired supports, and intervention preferences among early (60 years) adulthood dementia caregivers. Methods: A cross-sectional survey was conducted with 202 family dementia caregivers aged 22 to 88. Caregivers completed validated measures of burden, anxiety, depression, well-being, time pressure, dementia knowledge, caregiving preparedness, and positive aspects of caregiving. Desired supports and preferences for intervention format, program type, and frequency were assessed. Analyses examined both categorical adulthood phase and continuous age associations with caregiver outcomes, with alpha thresholds of p<.05. Results: Early adulthood caregivers self-reported higher anxiety symptoms (relative to late adulthood caregivers) and perceived time pressure (relative to middle and late adulthood caregivers). Relative to late adulthood caregivers only, early adulthood caregivers more frequently endorsed desired support for supplemental care and safety tools for the person with dementia, as well as willingness to engage in individual counseling and automated, digital supports. Relative to both middle adulthood and late adulthood caregivers, they also more frequently expressed desired support for their own mental health. Conclusions: Dementia caregiving in early adulthood is associated with distinct psychological and practical support needs, suggesting life course–informed interventions may enhance relevance and engagement. Key Points: Interventions to support dementia caregiver mental health and burden have historically overlooked the quickly growing contingent of early to middle adulthood, non-spousal caregivers. This paper addresses a critical gap in our understanding of mental health, caregiving readiness, desired supports, and intervention preferences among these cohorts. Early adulthood dementia caregivers report greater anxiety, perceived time pressure, desire for mental health and supplemental care support, and willingness to engage in digital support interventions. Effective interventions for mental health and caregiving readiness among dementia caregivers should address distinct practical and psychological support needs and preferences across different phases of adulthood.

Background and Objectives: Family caregivers face elevated risks for mental and physical health issues but have difficulty accessing informational and supportive resources. Chat-based artificial intelligence (AI) tools, such as chatbots using large language models (LLMs), may offer scalable, personalized support. This scoping review maps the existing literature on chatbots for family caregivers. Research Design and Methods: Following our preregistered protocol and following the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist, we searched PubMed, Embase, Web of Science, and CINAHL (January–February 2025) for English-language, peer-reviewed articles on AI/chatbots and caregivers. Eligibility included any article on the use of a chatbot in the caregiving context. Screening and data extraction were performed in duplicate using Covidence. Articles were charted by article type ((1) existing chatbots [e.g., ChatGPT] applied to caregiving context; (2) new chatbots developed for caregiving context; (3) “other” article types) and synthesized narratively. Results: Of 505 records screened, 30 met inclusion criteria. Seventeen evaluated existing chatbots (primarily ChatGPT), nine described development of new chatbots, and four were commentaries, reviews, or qualitative studies. Most focused on dementia or cancer caregiving. The majority of new or existing chatbot articles focused on provision of informational support, and less often on emotional support or local resources. Chatbot evaluations were typically conducted by experts assessing response accuracy and readability; few reported evaluations by caregivers. Discussion and Implications: Evidence suggests that chatbots provide largely accurate, accessible caregiving-related information, though findings for emotional support and safety were limited and mixed. Research remains early-stage, with no randomized controlled trials.

Introduction: Family caregivers frequently experience sleep challenges that impact their own health and ability to provide care for a care recipient (i.e., the person a caregiver supports). Cognitive-behavioral therapy for insomnia (CBT-I) effectively treats insomnia, but there is limited evidence regarding caregivers’ perceived impacts of this intervention. The current study evaluated caregivers’ experiences using Sleep Healthy Using The Internet (SHUTi), an Internet-delivered CBT-I intervention. Method: The sample comprised caregivers with insomnia who supported care recipients requiring medium- or high-intensity care for any condition, including Alzheimer’s disease/dementia (21%), cancer (11%), or a mobility problem (11%). Participating caregivers who used SHUTi ( n = 82; age M = 53.20, 85% female, 59% lived with the care recipient) provided open-ended feedback about their experience. Responses were analyzed using a rapid content analysis approach. Results: Responses revealed that caregivers perceived benefits of SHUTi to their functioning and their understanding of sleep . Caregivers described how the intervention improved their overall daytime abilities, mood, and caregiving capacity. They also shared how the intervention helped them prioritize sleep and self-care, gave them insight into their sleep, and increased their knowledge of healthy sleep. Discussion: Caregivers reported wide-ranging benefits from CBT-I beyond improved sleep. Despite the untailored nature of this intervention, several caregivers described positive impacts on their caregiving capabilities and outlook, resulting from the program helping them to improve their sleep and self-care more broadly. These results suggest that framing caregiver-focused health interventions as important to both caregivers and care recipients may increase caregivers’ uptake of such resources.

Background: The population caring for both an older adult and a minor child, known as “sandwiched” caregivers, is growing due to demographic shifts. Most research on the sandwiched caregivers exclusively focuses on adult children, overlooking others like neighbors or grandchildren. Moreover, little is known about sandwiched caregivers of persons living with dementia. This study compares well‐being of sandwiched and non‐sandwiched caregivers of individuals with and without dementia, with a focus on the role of additional help from family and friends and restriction in social activities. Method: Data from 1,728 caregivers of 1,156 older adults were analyzed from the 2022 National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC). Four groups were compared: Sandwiched, Dementia (S+D); Sandwiched, No Dementia (S‐D); Non‐Sandwiched, Dementia (NS+D); Non‐Sandwiched, No Dementia (NS‐D). Linear regressions predicted caregiver well‐being, adjusting for demographic and care‐related variables, with social participation restriction and family/friend help as moderators. Analyses are weighted and adjusted for NHATS/NSOC's complex survey design. Results: A majority of S+D caregivers were biological, step, or in‐law children of the person with dementia (72%), followed by other relatives (21%), and unpaid caregivers like friends or neighbors (7%). Sandwiched caregivers are more likely to receive additional help, be employed, and belong to racial‐ethnic minority groups relative to non‐sandwiched caregivers ( p s< .001). In terms of well‐being, compared to S+D caregivers, S‐D caregivers had significantly higher well‐being ( B = 2.91, p < .001), as did NS+D caregivers ( B = 1.66, p = .021), but not NS‐D caregivers ( B = 1.03, p = 163). Linear regression interaction effects revealed differential impacts of social restriction on well‐being across caregiver groups, such that S‐D caregivers ( B = ‐1.73, p < .001) and NS+D ( B = ‐1.01, p = .013) report significantly worse well‐being associated with increased participation restriction compared to S+D. Additional support from family and friends did not significantly moderate the relationship between caregiver groups and well‐being. Conclusion: This research underscores vulnerability in well‐being among sandwiched caregivers, especially those involved in dementia care. While sandwiched caregivers often have additional care support, those caring for non‐dementia care recipients are particularly sensitive to restrictions in social activities due to caregiving. Interventions are needed to address the wellbeing needs of sandwiched caregivers.

Objective: We evaluated generational differences in caregiver mental and social health to assess the need for targeted interventions for specific generations or age groups. Methods: We utilized cross-sectional 2022 data from a national caregiver survey. Using the cohort-based, life course framework, across n = 537 caregivers and n = 537 demographically matched non-caregivers, we tested the impact of generation, caregiving status, and generation-by-caregiving status interaction on psychological distress, social isolation, and life meaning using ANOVAs. Results: Results revealed significant effects of generation and caregiving status on mental health and social isolation, as well as a generational effect on life meaning (ps < .001). Post-hoc analyses revealed higher psychological distress, social isolation, and lower life meaning scores among Millennial caregivers relative to all other caregiver generations (ps ≤ 0.021). Conclusions: Younger caregiver generations are at risk for mental and social health outcomes and warrant targeted intervention.

Background: Dementia care partners are at elevated risk of adverse mental health outcomes and often feel unprepared for their caregiving role. Individualized Coordination and Empowerment for Care Partners of Persons with Dementia (ICECaP) is an intervention that involves one-on-one individualized support from a dementia care coordinator for a dementia care partner. At least once monthly contact is made from a dementia care coordinator to the dementia care partner by telephone, video conferencing, email, and/or in-person support. Aims: We aimed to determine whether ICECaP improves care partner readiness and whether improvements in readiness are associated with mental health improvements. Methods: In this randomized control trial of ICECaP, n = 61 care partners completed 12-months of the ICECaP intervention, and n = 69 care partners received routine clinical support (controls) in an outpatient memory care clinic (ClinicalTrials.gov: NCT04495686). We compared changes in care partner preparedness, dementia knowledge, and self-efficacy from baseline to 12-months between ICECaP and controls. Results: ICECaP care partners improved on self-reported preparedness for caregiving from baseline to 12-months to a significantly greater degree versus controls (p =.001, η_p ² = 0.066); no group differences were detected on change in dementia knowledge or self-efficacy over time. Exploratory analyses revealed that within the ICECaP group, longitudinal improvement in preparedness was significantly associated with longitudinal decreases in self-reported caregiving burden and negative reactions to behavioral symptoms of dementia (corrected ps < 0.05). Discussion/Conclusions: ICECaP significantly improves dementia caregiver preparedness, which is associated with improved mental health.

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.

Background: Prior research on factors associated with sleep problems among care partners (CPs) of persons with cognitive decline (PwCD) are often limited by imprecise (i.e., single yes/no questions) measures of insomnia, burden, and CP mental health. This study aimed to: 1) determine the prevalence of insomnia disorder using DSM‐5 criteria among PwCD CPs in an outpatient memory care clinic, and 2) identify risk factors for CP insomnia symptoms using rigorous measures. We hypothesized that caregiver burden, depression, and role overload would be the strongest predictors of PwCD CP insomnia symptoms.Methods: In this cross‐sectional survey study, PwCD CPs completed a demographic and caregiving questionnaire; a modified Insomnia Severity Index (ISI) that included assessment of frequency, duration, and impact of insomnia symptoms per DSM‐5 insomnia disorder criteria A‐D; Short Form Zarit Burden Interview; and the Hospital Anxiety and Depression Scale. Multiple linear regressions using forward elimination were used to determine the most robust predictive model of PwCD CP insomnia symptoms (ISI).Results: Among all CPs (n = 80), 10.00% met DSM‐5 insomnia criteria A‐D. Regarding ISI score classification, 26.00% CPs had clinically significant symptoms of insomnia (ISI≥10). The most robust risk factor model [R² = .423, F(3,76) = 18.605, p<.001] for CP insomnia symptoms included CP anxiety (β = .374, p = .004), CP‐PwCD co‐dwelling status (β = ‐.229, p = .012), and burden (β = .255, p = .042), and did not include factors such as demographics and PwCD nighttime needs and behaviors. Among CPs who co‐dwelled with the PwCD (n = 65), the most robust risk factor model [R² = .412, F(2,62) = 21.764, p<.001] for CP insomnia symptoms included CP burden (β = .392, p = .004) and CP anxiety (β = .309, p = .022), and did not include other factors.Conclusions: CP mental health symptoms and caregiving burden appear to be notable risk factors for PwCD CP insomnia symptoms, which has implications for intervention approaches for CPs.