Funded Pilot Awards
Year 1
Connect for Caregivers
Sally Norton, PhD, RN, Principal Investigator
Connect for Caregivers was a mixed-methods intervention development study. The study involved qualitative interviews with caregivers who report loneliness, as well as a sample who report feeling socially connected, in order to understand the common barriers caregivers face to feeling social connected and satisfied with their relationships. This information was used to develop and pilot test a card sort task that functions as a prioritization tool to assist caregivers and those helping them (e.g., aging services care managers) identify personal barriers to connectedness and strategies most likely to be effective for them given their particular set of goals and challenges.
Why we conducted the study: We know that poor social connectedness and loneliness can put people at higher risk for poor health outcomes. We conducted this study because there are very few evidence-based intervention to decrease loneliness and improve social connectedness among caregivers of persons with dementia. We wanted to better understand the experience of caregivers of persons with dementia and their social connections in order to inform the intervention development from the lived experiences of people we hope the intervention will ultimately benefit. We wanted to develop an intervention that would help caregivers understand the importance of social connection and provide structured strategies for improving their own social connections.
What participants in the study did: The first 20 participants enrolled in the study were caring for someone with dementia. In semi-structured interviews, they shared their experiences of social connection with us including what was important to them, where they were struggling, what they would like to be doing, and how their experiences had changed over time. We then conducted a focus group with 8 care managers, professionals, who work with persons with dementia and their care partners. We asked about social connectedness and their perspectives on how it can change over time, how important social connectedness was in their work with patients and carers, their perception of the best timing to deliver (and not deliver) an intervention, and the frequency of the intervention. Based on the feedback from these first two groups we created an intervention draft and asked five more participants to review and provide feedback on the draft intervention. After further refinement, we conducted the single session intervention with 5 participants again asking for their assessments on whether the intervention was acceptable, feasible, usable, and sufficient.
What we found: That caregivers thought helping them boost their social connections was important and that the online delivery and content of the intervention was acceptable, feasible, and usable. They suggested that a one-time intervention was not sufficient. For the five final participants, we saw no improvement in loneliness but did see improvement in the knowledge of social connection with 3 participants noting improvement, one remained the same, with 1 reported a knowledge decrease. Four of five participants completed the goal they set for themselves.
Engage Psychotherapy to Promote Connectedness in Caregivers (“Social Engage”)
Kimberly Van Orden, PhD, Principal Investigator
Social Engage for Caregivers was also a mixed-methods intervention development study. The objective was to tailor a flexible behavioral intervention to assist caregivers in goal setting and problem solving around barriers. Social Engage psychotherapy was adapted for caregivers in this study because it is easy to learn on the part of both interventionists and patients and can be flexibly adapted to the caregiving context.
Why we conducted the study: The objective of the Engage Coaching Project was to develop useful strategies for helping individuals who are caring for a family member with dementia improve their social relationships and social supports. 30 adults aged 50 or older who were caring for a family member or friend with dementia enrolled in the study. At the start of the study, these individuals also reported feeling stressed due to caring for their family member/friend, as well as feeling isolated, left out, or that they lacked companionship, which are indicators that someone may be experiencing loneliness. The reason we conducted the trial is that loneliness and stress due to caregiving place an individual at risk for poor health and lower quality of life. While there can be many positive aspects of caregiving, some aspects of caregiving can make it harder to connect with others, which can make individuals more likely to experience feeling isolated, left out, or that they lack companionship.
What participants in the study did: All participants in the Engage Coaching Project were offered 8 Engage Coaching sessions (free of charge). This involved meeting with an Engage Coach on a weekly basis. The meetings were brief (approximately 30 mins) and were conducted via video or phone call. The coaching was designed to help participants enhance their relationships and improve well-being while managing stress. Coaches helped participants identify goals for improving their social relationships by completing a process we call ‘action planning,’ in which participants set a goal for the week, brainstorm strategies to meet the goal, and identify concrete steps to take to achieve the goal. Participants also worked with their coaches to identify any aspects of caregiving that presented barriers to improving relationships and then employing strategies to address those barriers. Participants also completed research assessments at the start of the study (before coaching) and three months later (after finishing coaching). At the final assessment, participants provided feedback on what was helpful (and not helpful) about coaching.
What we found: A total of 30 caregivers enrolled over 10 months, 25 completed 3-month follow-up assessments (83%), 25 completed at least 5 coaching sessions (83%), and all who completed the 3-month assessment reported the program was suitable and convenient. Participants who provided reasons for discontinuing sessions (n=4) all stated that caregiving responsibilities made it too challenging for them to participate. While not initially designed for remote delivery, the COVID-19 pandemic necessitated that coaching be delivered remotely for all participants, the majority of whom said that they preferred video or phone sessions due to challenges with scheduling or leaving the person with dementia home alone. We also found that 60% of participants demonstrated significant improvements (reductions) in loneliness, 48% in satisfaction with social relationships and activities, 72% in perceived social isolation, 71% for caregiving strain, and 80% for quality of life. These results are promising and support future study of Engage Coaching for Caregivers, including ways to integrate it into settings that provide services for dementia caregivers.
For more information:
- Engage Coaching for Caregivers was described at a national webinar: “engAGED Webinar on Social Engagement and Mental Health, engGAGED: The National Resource for Center for Engaging Older Adults, Social Engage Coaching,” on November 18, 2022, virtual event (recording available online).
- Engage Coaching for caregivers is also listed in the engAGED Innovations Hub (database for social connectedness interventions).
- Engage Coaching for Caregivers Manual download request.
- A manuscript describing the study was published: Van Orden K.A., Bower, E., Lutz, J., & Silva, C. (2023). Engage coaching for caregivers: a pilot trial to reduce loneliness in dementia caregivers.; Aging & mental health. 2023 Mar 10. 1080/13607863.2023.2187345
- Results of the trial are also publicly available on clinicaltrials.gov: https://clinicaltrials.gov/ct2/show/NCT04176601
- "Engage Coaching for Caregivers: a pilot trial to reduce loneliness in dementia caregivers" (NIHMS1885390)
https://www.nihms.nih.gov/about/publicaccess
Year 2
Conexión para Latinos (Connection for Latinos)
Caroline Silva, PhD, Principal Investigator
Hispanics/Latinos are expected to constitute 22% of the older adult population in the United States (U.S.) by 2060 and approximately half of U.S. Hispanic/Latino older adults mainly speak Spanish. Despite this, there are few interventions developed for Hispanic/Latino caregivers that are culturally attuned and available in Spanish, and none have reduced loneliness. The study objective is to extend the STAR Center foundational interventions developed in Year 1—the prioritization tool (“Connect for Caregivers”) and Engage Coaching—for Hispanic/Latino and Spanish-speaking caregivers, as well as culturally-tailor and test Engage coaching to increase social connection for this population.
What we found: For the first part of the study, initial results indicate the following as culturally-specific barriers to connectedness among Hispanic/Latino caregivers: feelings of obligation to family; family dynamics in culture; relocation; lack of Spanish language or culturally-attuned services / resources; lack of Hispanic/Latino community of other ADRD caregivers; and various logistical barriers (finances; time). For the second part of the study, we found that Engage Coaching was feasible and acceptable for Hispanic/Latino caregivers. A total of 10 caregivers enrolled over 8 months, 8 completed 3-month follow-up assessments (80%), 8 completed at least 6 coaching sessions (80%), and all who completed the 3-month assessment reported the program was appropriate, suitable, effective, and convenient. We also found that 63% of participants demonstrated significant improvements (reductions) in emotional loneliness and feeling like they do not belong. These results are promising and support the future study of brief behavioral interventions to increase social connection among Hispanic/Latino caregivers, including ways to integrate these types of interventions into settings that reach and provide services for Hispanic/Latino caregivers of a loved one with dementia.
Mindfulness for Caregivers
Autumn Gallegos, PhD, Principal Investigator
This study will apply an innovative technological approach to promote social connection in older caregivers for family members with ADRD – an understudied and vulnerable population. The objective is to examine acceptability and efficacy of mindfulness training for social isolation and loneliness in older caregivers for family members with ADRD. The intervention is a smartphone-based MBSR app (Headspace) or active control (breathing app) completed for 14 days. Digital health holds promise as a way to delivery brief interventions in a manner that fits with the busy schedules of caregivers and that be accessed anytime and from home.
Why we conducted the study: The objective of the Mobile Health Mindfulness Training was to develop useful strategies for helping individuals who are caring for a family member with dementia improve their social relationships and social supports. A total of 56 adults aged 50 or older who were caring for a family member or friend with dementia enrolled in the study. At the start of the study, these individuals also reported feeling stressed due to caring for their family member/friend, as well as feeling isolated, left out, or that they lacked companionship, which are indicators that someone may be experiencing loneliness. The reason we conducted the trial is that loneliness and stress due to caregiving place an individual at risk for poor health and lower quality of life. While there can be many positive aspects of caregiving, some aspects of caregiving can make it harder to connect with others, which can make individuals more likely to experience feeling isolated, left out, or that they lack companionship.
What participants in the study did: All participants in the Mobile Health Mindfulness Training were offered 14-day free access to the Headspace app or breathing app. The mindfulness intervention was delivered via Headspace, a mindfulness-based smartphone app. Participants were instructed to engage with the app’s first 10 introductory sessions. These sessions were intended to act as a general introduction to mindfulness meditation and incorporate techniques such as breath awareness and body scanning. Each session was completed daily for approximately 10 minutes. Upon completion of the introductory sessions, additional content for the four final sessions included sessions from the Reframing Loneliness course and the Kindness course. The participants randomized to the breathing app practiced resonant breathing for six breaths per minute for 10 minutes. All participants also completed research assessments at the start of the study (before the training) and two weeks later (after finishing the training). At the final assessment, participants provided feedback on their comfort of using mobile technology and satisfaction with the training.
What we found: A total of 56 caregivers enrolled over 17 months and 50 completed the training and pre- and post-training assessments (89%), and all who completed the post-training assessment reported they were satisfied or very satisfied with the program. Though not significant, we found that participants in the mindfulness group experienced decreased loneliness, and improved self-compassion and emotion regulation. Participants who used the breathing app demonstrated a significant decrease in loneliness and significant improvement in emotion regulation. Participants assigned to the breathing app reported significantly higher difficulties regulating their emotions at baselines and may have had more room to improve. Overall, these results demonstrate that older adult caregivers can use technology to improve experiences of loneliness and emotional well-being.
Year 3
Dyadic Life Review for Caregivers
Lee Kehoe, PhD, Lead Researcher
The objective of the project is to examine the role of an adapted behavioral intervention, Life Review Therapy, in improving social connection in caregivers. Participants are caregivers for family members with Mild Cognitive Impairment and advanced cancer who themselves are at least 50 years old and report loneliness, and their care receivers. The adapted intervention -- Relationship-Focused Life Review (RF-LR) – uses the evidence-based components of Life Review Therapy but with a focus on engaging the dyad in shared reminiscence. The counseling program is delivered together with the caregiver and care receiver via videoconferencing over eight weekly sessions. Questions follow the structure of an evidence-based Life Review Handbook, with questions selected and adapted to prompt shared reminiscence among the dyad. The goal of RF-LR is to enhance social connectedness (marked by relationship satisfaction) between dyad members, thereby ultimately reducing loneliness in lonely dyad members. This is a single-arm clinical trial with N=20 dyads (n=20 caregivers and n=20 care receivers) to examine changes in loneliness and relationship satisfaction. Data will also be collected on usability via mixed methods.
Improving Care Partner Outcomes Through Positive Connections
This study examines a behavioral intervention to improve social connection and reduce loneliness. The objective is to examine psychological mechanisms whereby a videoconference-delivered, group-format, strengths-based behavioral intervention focused on social connection—'Social LEAF’—reduces loneliness and isolation and improves quality of life for older caregivers of people living with DLB. This is an 18-month Stage I study examining Social LEAF, which teaches positive coping skills focused on improving social relationships and is delivered remotely in a group format—two minor adaptations to the original LEAF intervention in order to provide a more potent means of improving social connection. A pilot phase with n=20 caregivers (Aim 1) will address these minor adaptations regarding feasibility, acceptability, and signal for engaging the target mechanism (loneliness), with refinements as needed. A second phase (Aims 2-3) will involve a pilot randomized controlled trial comparing Social-LEAF (n=30) to waitlist control (n=30) on loneliness (primary outcome), positive affect (mechanism), and social engagement (mechanism). Data will also be collected on acceptability and perceived benefits using mixed methods.
What we found: We have completed data collection and hope to complete both qualitative and quantitative analyses this month from our Social-LEAF (Life Enhancing Activities For caregivers) study. Our initial qualitative findings strongly support our rationale for the study including: participants appreciated the ability to connect with other care partners of people with Lewy Body Dementia; participants really valued the social connections afforded by the group format; positively-focused skills provided benefits in caregiving. We also received many ideas and suggestions to further optimize this program. We are eager to see what our final data have to say as we begin to plan next steps.
Year 4
Moderators and Mechanisms of Loneliness Interventions: Social Engagement Coaching for Caregivers
Kathi L. Heffner, PhD, Principal Investigator
The current study will test whether caregivers’ responses to social cues (negative or positive) are predictive of loneliness outcomes in response to a loneliness intervention, Social Engage Coaching (S-ENG), and whether changes in social cue responses following S-ENG are associated with changes in loneliness. Markers of social cue responsivity - including cognitive, emotional, and physiological responses to negative or positive social cues (vocal tone of audio recordings, pictures of faces) - will be measured before and after S-ENG. Embedded in this study is a second objective to test whether a coach-facilitated online tool that helps identify a goal and action plan for social engagement can increase S-ENG intervention fidelity and improve caregivers' loneliness outcomes.