Dementia Family Caregivers Research Articles

THE ATTITUDES OF CHINESE AMERICAN FAMILY CAREGIVERS OF OLDER PEOPLE WITH DEMENTIA TOWARD TUBE FEEDING

Abstract The aim of this study is to examine the attitudes toward feeding in Chinese American dementia family caregivers. 53 Chinese American dementia caregivers were interviewed in 2021-2022. The survey included their anticipated decisions for tube feeding if their care recipients are at the end of life, goals of care, and knowledge of tube feeding. 32.7% of them would choose tube feeding for individuals with dementia at the end of life; however, 53.9% are confident that the patient would not choose tube feeding if patients are able to make decisions. 92.3% prepared to relieve pain and discomfort as much as possible. 42.3 % of them thought tube feeding are recommended to use if oral feeding difficulties arise. More than 60% thought tube feeding can improve survival and nutrition status. More education is needed for the decision-making regarding tube feeding at the end of life for Chinese American dementia caregivers.

EMPLOYING DESIGN THINKING METHODS TO CREATE BEHAVIORAL INTERVENTIONS THAT SUPPORT AFRICAN AMERICAN CAREGIVERS

Abstract Design Thinking provides an empathy-based creative problem-solving approach to intervention and/or patient-centered care design that seeks to articulate the right problem space and propose appropriate solutions to challenges encountered by individuals in specific contexts, such as healthcare. This abstract illustrates the application of the Design Thinking approach in the context of dementia caregiving. Emory’s Roybal Center for Caregiving Mastery conducted a three-part design studio workshop with African American dementia family caregivers to understand and identify prioritized solutions to their caregiving challenges. The workshops followed the Double-Diamond design process model that is divided into four phases (Discover, Define, Develop, and Deliver) and that emphasizes divergent and convergent modes of thinking. The process first encourages divergent thinking to explore a problem space and then employs convergent thinking to identify the salient problem and develop the right solution. The workshop’s Discover stage provided a broad and deep contextual understanding of the range of unmet needs African American caregivers experience in their interactions with healthcare personnel and systems. The Define phase enabled the convergent review and prioritization of the list of needs to be addressed. The Develop phase generated 17 intervention ideas. Finally, the Deliver phase focused on converging and validating the proposed interventions. The workshops concluded that having access to caregiver-focused resources supporting mental/physical self-care, such as support groups and peer programs, can be beneficial interventions to potentially improve knowledge, awareness, and caregiving mastery among African Americans American caregivers.

DEVELOPING AND TESTING THE FEASIBILITY OF A TEXT MESSAGE DEMENTIA CAREGIVER SUPPORT INTERVENTION FOR LATINOS

Abstract Latinos experience several disparities in dementia including poor caregiver mental health and caregiving support access. Latinos’ ubiquitous cell phone ownership and use of text messaging may offset those disparities. During this session, we will describe the development and feasibility testing findings of CuidaTEXT. CuidaTEXT is a tailored Short Messaging Service-based text message intervention to support Latino dementia family caregivers. This intervention was developed using mixed-methods research. This research resulted in a bilingual six-month intervention with automatic daily messages for all participants that address dementia education, self-care, social support, end-of-life, care of the person with dementia, behavioral symptoms, and problem-solving strategies. Participants who need more in-depth support, can use two functions: 1) every time they send a keyword-driven message (e.g., STRESS), they will receive an automatic message to support them with that topic, 2) for any other message they send (live chat), a coach will respond to their specific needs.

CAREGIVER PARTICIPATION IN VIDEO VISITS: CHALLENGE OR OPPORTUNITY?

Abstract Rapid expansion of telehealth in response to COVID revealed a digital divide for many patients, particularly older adults. Given the technical complexity of video visits (which may include downloading novel software and enabling a camera and microphone), video visits may be out of reach for older patients with less technological experience or with age and condition-related changes such as sensory loss or cognitive impairment. Involving caregivers in video visits (particularly technical set-up) may not only increase patient access but also enhance clinical care by allowing for collaboration with family. Caregivers may themselves benefit from video visits, given that video offers increased options for caregiver support. Though caregivers are often identified as critical components to older adults’ accessing telehealth and may also benefit from telehealth services, caregivers’ own technical needs are not well-understood. This symposium discusses caregivers’ involvement in telehealth from multiple perspectives. The first presentation includes findings from a national clinician survey about caregivers’ support role in occupational therapy video visits, including barriers and benefits (Gately et al). The second presentation includes findings from a regional survey of interprofessional clinicians about telehealth modalities to provide dementia family caregiver support during COVID-19 (Quach et al). The third presentation includes family caregivers’ technology assistance requirements before and during a virtual, seven-session group skills training program, including benefits of individualized assistance (Moo et al). The fourth presentation includes caregiver perspectives about tele-geriatrics visits, highlighting caregivers’ support role and enhancements of video versus phone (Boudreau et al).

CAREGIVER DEPRESSION AND PROGRESS TOWARD VALUES: AN AUTOREGRESSIVE CROSS-LAGGED PANEL MODEL

Abstract Acceptance and Commitment Therapy (ACT) is an established in-person therapy but can be provided self-guided online. Recently, online ACT has been adapted to support dementia family caregivers. A primary goal of ACT is to connect individuals with their self-identified values, with the assumption that increased progress towards values will lead to improved well-being. While there are established negative associations between depression and progress towards values, the lagged influence of progress toward values at one time point on another time point within intervention is less understood. Our sample was 51 dementia caregivers who completed an online self-guided ACT intervention. Participants were 80.3% female, 53% spouse, with a mean age of 65.98 (SD =11.66). We created an auto-regressive cross-lagged panel model to examine longitudinal associations between progress towards values and depressive symptoms at three time points. Controlling for time 1 (pre-intervention) depressive symptoms, progress towards values at time 1 significantly predicted depression at time 2 (β = -.427, p < 0.01) and progress towards values at time 2 (β = .716, p < 0.001). Depression at time 2 significantly predicted progress towards values at time 3 (β = -.515, p < 0.001) and depressive symptoms at time 3 (β = .580, p < 0.001). The R^2 range from .30-.43. Our analyses suggest that participants’ initial progress toward values strongly negatively predicted their subsequent depressive symptoms, which then predicted later progress towards values. These findings demonstrate the potential reciprocal relationship between progress towards values and depressive symptoms within ACT intervention.

TECHNOLOGY TO SUPPORT OLDER ADULTS' HEALTH, SAFETY, AND WELLBEING

Abstract Technology has revolutionized the ability to deliver interventions to support older adults’ health, safety, and wellbeing, and technology-based solutions have become increasingly important in the delivery of remote care during the COVID-19 pandemic. However, these interventions and novel approaches require a careful understanding of older adults’ needs, preferences, and abilities, and need to undergo tests of feasibility, acceptability, and efficacy. This session will present a sampling of research examining the development, testing, and implementation of technology-based solutions to support older adults. R. Azevedo will present on the development of a novel digital therapeutic for the self-management of hypertension medication adherence among older adults. S. Kwon will present on the initial efficacy of an app-based mindfulness-meditation intervention to alleviate stress and depressive symptoms among bereaved older adults. Y. Du will discuss the use of a commercial fitness tracker to facilitate activity self-monitoring among overweight diabetic older adults with and without kidney disease. S. Dimmick will discuss the development of a novel augmented reality (AR) safety checklist to reduce fall risk among older adults. Finally, F. Jain will present on the development of a new mobile application platform to meet the needs of family dementia caregivers informed by focus groups and an inductive and deductive mixed method analytic approach. Themes of the necessity of a user-centered design approach in the development of technology-solutions will be emphasized.

The Impact of COVID‐19 on Family Dementia Caregivers: Insights from a Memory Clinic in Germany

AbstractBackgroundFamily dementia caregiving is associated with a high burden on the caregiving relatives. With the worldwide spread of coronavirus SARS‐CoV‐2, new stress factors were added for both the caregivers and the PwD, as they had to further limit their social contacts due to statutory restrictions and they belong to the groups of people with a higher risk of a severe COVID‐19 disease course. Our aim was therefore, to investigate the impact of the COVID‐19 pandemic on the care situation and well‐being of family dementia caregivers.MethodSemi‐structured telephone interviews with family dementia caregivers (n = 20) were conducted, recorded, transcribed and analysed thematically. This study was embedded within a larger randomised controlled trial (RCT) assessing the effectiveness of a digitally supported care management programme.ResultNegative consequences reported were a decrease in support for caregiving responsibilities, adverse consequences for the PwD, and problems in connection with organising a COVID‐19 vaccination. New care requirements included the responsibility to ensure that the PwD complies with the corona security measures as well as the additional care tasks for the family caregivers that could no longer be guaranteed by third parties. Positive changes that were highlighted by some participants were that they had more time for their care responsibilities due to fewer visits from family or friends and as well as reduced perceived stress for the PwD. For the majority of participants, the impact was primarily reduced by the persistence of private and professional support services and their own coping strategies.ConclusionDespite some negative consequences, the results showed that the COVID‐19 pandemic had little overall impact on the caregiving situation of family dementia caregivers. These were surprising results as they stand in contrast to previous research findings. The overall low impact reported could be due to several factors. The interviews took place around the time of the second lockdown in Germany, which was generally described as a “light version” with back‐up measurements in place ensuring healthcare services operating almost as usual. In addition, an already restricted lifestyle as well as the fact that some caregivers received a care management programme at the time could have mitigated the impact.

The Experiences of Son’s caring for a parent with Alzheimer’s Disease

AbstractBackgroundAmong primary caregivers (individuals who indicate having the most responsibility for helping their relatives) of people with dementia, over half take care of their parents. Most caregivers (66 percent) live with the care recipient in the community (Fisher, et al., 2011). The responsibilities of caring for someone with dementia often fall to women (Kasper et al., 2015). Men are underrepresented in the literature pertaining to family caregiving in dementia. Yet, they play an important role in providing care for cognitively impaired older adults in the community (Houde, 2001). While there is extensive literature on caregiving in dementia, only a few studies have emphasized the caregiving role of men (Coe & Neufeld, 1999; Kramer, 2000; Russell, 2007a, 2007b).MethodWe employed the meta‐ethnography methodology. Five electronic bibliographic databases were used to retrieve studies published from 1997‐2021 that explored son caregivers' experiences of caring for a parent with Alzheimer’s Disease. Five qualitative studies were finally included for the synthesis, based on the eligibility criteria.ResultCommon themes that emerged in the son’s experiences include a sense of loss, stress, and enduring the caregiving journey. Son’s caregiver roles included case manager, disease educator to in home paid help, and coping with sibling conflicts. Two studies showed positive outcomes.ConclusionThis review provides a deeper understanding of son’s caregivers' experiences of caring for a parent with Alzheimer’s Disease. The findings can help healthcare providers in the development and implementation of tailored interventions specific to son’s caregiver needs.

Dementia Spousal Caregiving.

Dementia family caregiving has been linked to depression, anxiety, insomnia, and other negative mental health symptoms, particularly among spousal caregivers who are most likely to have higher levels of caregiving hours. Further, depressive symptoms often present differently based on caregiver race and ethnicity. This study aimed to examine the association between spousal caregiving hours and self-reported depressive symptoms as well as identify any racial/ethnic disparities in depression self-reporting. Data was drawn from Wave 9 (2008) of the Health and Retirement Study and included 10,120 participants. Linear regression was used to evaluate the relationships between caregiving hours and depression symptoms. Further, a negative binomial model was used to test whether race/ ethnicity moderated the relationship between caregiving hours and self-reported depressive symptoms. As expected, self-reported depressive symptoms increased as caregiving hours increased (1.65, SD = 2.02, p <0.01). Among the racial and ethnic groups evaluated, Latinx participants experienced the highest levels of depressive symptoms relative to caregiving hours. Dementia affects families. Care and consideration of the family are as important as the care of the individual affected by a dementia-related diagnosis. Depression is a serious anticipated mental health outcome linked to dementia family caregiving responsibilities. As such, there is a need for increased culturally responsive professional screening and treatment for depression among family caregivers. Relatedly, primary care providers play an important role in identifying patients serving as family caregivers and offering necessary supports and referrals.

Using participatory approaches in the development of a digital care assessment for family caregivers of people with dementia

AbstractBackgroundParticipatory approaches are increasingly used in technology development research to improve care and support for people with dementia and their caregivers. People with lived experience are able to provide valuable contributions and insights into their needs which can increase acceptance and use of interventions. Dementia family caregiving is associated with high burden. To increase time‐efficiency and to ensure prompt service provision, our aim was to develop a digitally supported unmet needs assessment to better identify and manage care and support needs of family dementia caregivers.MethodUsing a participatory approach with caregivers and clinicians, the assessment was piloted for its content and technical usability in a memory clinic with interviews, think‐aloud protocols and written feedback. Data were analysed thematically. The development of the assessment was embedded within a randomised controlled trial examining the effectiveness of a digitally supported care management intervention for family caregivers.ResultRegarding the assessment’s content, caregivers (n = 18) commented on the simplification of questions and answer options and suggested that they preferred direct questions whether care or support is needed in specific areas. Professional clinicians (n = 9) suggested that a focus on caregivers' care responsibilities was important. They commented on the order of instruments as well as the importance of avoiding duplicate questions. Reduction of completion time was named by both groups as important. Regarding the assessment’s tablet usability, caregivers provided information on the handling of the tablet, the ease of manual clicking and simple navigation. Professional clinicians commented primarily on the assessment’s layout and suggested one question at a time as well as adding an assessment progression bar. The final unmet needs assessment comprised several validated questionnaires with 57 questions examining a person’s self‐reported unmet needs, health‐related quality of life, caregiver burden, social support and the use of medical and non‐medical services and resource utilisation.ConclusionThe participatory approach allowed us to incorporate aspects into the development of the digital assessment that we would have missed otherwise. The input of people with lived experience has supported the development of the assessment ensuring a higher degree of acceptability. For future projects, a higher level of involvement is sought.

Cultural and ethnic differences in dementia family caregiving: A comparison of the experiences of Chinese American and non‐Chinese American dementia caregivers

AbstractBackgroundThe responsibilities of caring for a dementia patient are mentally and physically challenging, often resulting in adverse effects on a family caregiver’s psychological well‐being as well as the quality of care that the patient receives. While the experiences of White dementia caregivers from Western cultures have been well studied, there is a lack of understanding on how the racial, ethnic, and cultural nuances of caregivers from minority populations may influence dementia caregiving. Specifically, the research on Chinese American immigrant dementia caregivers is very sparse, which is concerning considering that Asian Americans are the fastest growing ethnic group in the United States and that Chinese Americans are the largest subgroup of Asian Americans. This study aims to explore the experiences of Chinese American dementia caregivers, focusing on processes of grief, coping mechanisms, and perceptions of stigma.MethodOver 100 adult Chinese American and non‐Chinese American dementia family caregivers were recruited across the U.S. Their experiences with grief, coping, and stigma were surveyed using adapted versions of pre‐existing validated grief, coping, and stigma scales (i.e., the Marwit‐Meuser Caregiver Grief Inventory, the Coping Strategies Inventory, and the Affiliate Stigma Questionnaire). Participants also had the option to elaborate on the ways their cultural values may have influenced their caregiving in open‐ended questions.ResultInteresting and important differences between Chinese American and non‐Chinese American participants' emotional and psychological reactions to caregiving have been observed. Thematic analysis of open‐ended questions revealed additional challenges characterizing Chinese American caregivers’ experiences with caregiving, including feelings of filial piety, language barriers, and discrimination and lack of support from medical facilities and professionals.ConclusionEmotional and psychological reactions to caregiving differ between Chinese American and non‐Chinese American dementia family caregivers. Recognition of these differences is important for those who work with this growing population.

Culturally and linguistically appropriate home visit intervention for underserved dementia family caregivers: Preliminary results from a randomized controlled trial

AbstractBackgroundFamily caregivers of persons with dementia (PWD) suffer from stress and negative health outcomes related to round‐the‐clock caregiving responsibilities. Often caregivers lack awareness of community resources. Community Health Workers (CHW) have proven effective in educating families and can implement interventions that aim to reduce the impact of stress on their health. To alleviate caregiver burden among dementia family caregivers, this study has CHWs’ visit family caregivers’ homes offering education, stress reduction, and compassionate support/listening.MethodsParticipants were recruited from Southern California via non‐profit organizations, senior centers, and adult day services. Participants were randomly assigned to CHW home‐visit intervention group (IG) or control group (CG) with resource information only. The intervention includes stress reduction techniques of mindful breathing and compassionate support/listening, (2) education on dementia caregiving skills to handle difficult behaviors of PWD, and (3) resource information. The 3‐month intervention is given by bilingual CHWs who speak English, Spanish, Vietnamese, or Korean. A linear mixed model was used to compare differences from baseline to 3‐month on each outcome (caregiver burden, PWD behaviors ‐ memory, distress, disruption) between IG and CG. Exit interviews were conducted for IG participants.Results26 family caregivers participated in the study (12 Korean, 9 Vietnamese, 3 Hispanic, 2 Caucasian); 14 spouses (54%), 12 off‐spring (46%); 18 females (69%), age from 34 to 89 (mean = 66.8 sd = 12.6). IG Participants showed a significant decrease in caregiving burden compared to CG (coefficient = ‐7.68, p = .0041). PWD behaviors were significantly decreased from baseline to 3 months but no difference by group. However, there was a trend for improvement of PWD’s memory problems in the IG compared to the CG (coefficient = ‐2.43, p = .056). Language specific exit interviews showed that educational materials were valuable and communication skills training was helpful as was CHW home visits. Most participants reported the benefit of mindful breathing and practiced it when overwhelmed or having sleep problems. The overall satisfaction of the intervention was high (mean = 4.4 of 5). Recruitment is on‐going but challenging during the pandemic.ConclusionPreliminary results showed the CHW led home‐visit intervention helped improve burden and PWD memory problems and was acceptable by the family caregivers of PWD.

The Impact of COVID‐19 on Family Dementia Caregivers in Vietnam ‐ Insights from A Memory Clinic in Ho Chi Minh City

AbstractBackgroundThe COVID‐19 pandemic has unprecedented consequences on stress, isolation, and financial well‐being for family caregivers of people with dementia globally. In Vietnam, soaring COVID‐19 cases have led to widespread social distancing, isolation, and quarantine orders from the government. To date, limited evidence exists about the situation of persons with dementia and their family caregivers during the pandemic in Vietnam.ObjectivesThe study aimed to provide insights into the impact of the COVID‐19 pandemic on family caregivers of people with dementia.MethodsMixed methods were used, and data collection took place in two rounds. In the first round during the first wave of infections at Ho Chi Minh City, semi‐structured interviews with caregivers and health care workers (n = 16) were conducted and analysed thematically. In the second round, this data will be complemented with survey data from family caregivers of people with dementia (n = 30). The survey includes a combination of closed‐ and open‐ended questions on the impact of the pandemic on the caregivers’ health and caregiving responsibilities.ResultsResults of the first round of data collection showed a high impact of the pandemic on caregivers resulting in negative psychosocial and emotional consequences of caregivers such as worry, stress, frustration as well as restrictions in time and place. Caregivers had reduced access to counselling services needed. At the same time, treatment services for people with dementia were reduced or even halted. The results from the survey will give additional insights into the impact of the COVID‐19 pandemic on family caregivers of people with dementia, including their challenges and concerns. These results will help to adapt counselling and treatment services for dementia family caregivers and will be presented in detail.ConclusionThe study will lead to a better understanding of the impact of the COVID‐19 pandemic on family caregivers of people with dementia and will facilitate the adaptation of the existing as well as integration of new topics into our caregiver counselling program. Additionally, the development of (digital) self‐help groups for caregivers could be another option to prevent disruption of the health care system and to ensure ongoing service provision despite pandemic‐related restrictions.

Effectiveness of a digitally supported care management program for family and other informal dementia caregivers: baseline data from the GAIN randomized controlled trial

AbstractBackgroundAlmost two‐thirds of people with dementia (PwD) living at home receive care from a family or other informal caregiver. For the caregiver this can result in a work load comparable or above a full‐time employment position. Evidence shows that family caregivers have a higher risk for psychiatric and non‐psychiatric diseases like depression, anxiety, and arterial hypertension compared to non‐caregivers. A dyadic approach on disease management and the assessment of unmet needs can help to reduce the burden of care and increase the quality of life of caregivers and PwD. The cluster randomized “Gesund Angehörige Pflegen” (GAIN) trial conducted in general practitioner (GP) practices and memory clinics in Northern Germany aims to evaluate the effectiveness of a digitally supported care management programme to reduce unmet needs of informal caregivers of PwD.MethodThe recruitment for the GAIN trial began in October 2020 and will end in January 2022 with an estimated sample size of n = 200 caregiver. The GAIN baseline assesses the caregiver’s self‐reported unmet needs (Camberwell Assessment of Need for the Elderly, CANE), health‐related quality of life (EQ‐5D‐5L), caregiver burden (Zarit Burden Interview, ZBI), social support (Lubben Social Network Scale, LSNS), the use of medical and non‐medical services and resource utilisation.ResultA blinded interims data quality control analysis (n = 86) documented 10.45 unmet needs on average, 4.55 unmet needs for the caregivers and 5.9 unmet needs connected to the PwD triggering a maxium of 8 suggested interventions per unmet need. These results are higher compared to the previous studies on unmet needs of dementia caregivers. The recruitment for the trial is currently still ongoing. Complete baseline results will be presented at the conference.ConclusionThe use of a tablet‐based expert assessment system in memory clinics or GP praxis to identify unmet needs is well feasible. Caregivers of PwD recruited at GPs or memory clinics for the GAIN trial report a high number of unmet needs indicating the importance of a structured and in‐depth assessment to allow a personalized and dyadic treatment of family caregivers and PwD.

Findings from a National Consensus Conference: Interdisciplinary Action Steps to Enhance Support for Dementia Family Caregivers

AbstractBackgroundIn 2021, loved ones of individuals with Alzheimer’s disease and related dementias (ADRD) provided an estimated $271 billion worth of unpaid care (Alzheimer’s Association, 2022). While there is mounting consensus for the need to support caregivers, interdisciplinary collaborations are necessary to facilitate the translation of evidence‐based programs into real‐world solutions (Gitlin et al., 2015).MethodsWith funding from the National Institute on Aging, Weill Cornell Medicine hosted “The 2021 Conference on Engaging Family and Other Unpaid Caregivers of People with Dementia in Healthcare Delivery.” The hybrid (virtual/in‐person) event convened interdisciplinary experts from across the nation to establish a policy‐ and practice‐ aligned research agenda aimed at advancing the science of ADRD caregiving. These experts consisted of caregivers of people with ADRD, healthcare providers, researchers, health plan providers, and non‐profit organizations. The conference involved expert panels on caregiving‐related topics (e.g., public policies, intervention research), small group breakout sessions to identify major recommendations, and prioritization of the recommendations through voting.ResultsThe resulting recommendations centered on five topic areas: caregiver identification and assessment, caregiver training, provider training, provider reimbursement, and technology. Two cross‐cutting themes—the need for implementation science and leveraging frameworks of intersectionality— permeated throughout all recommendations. The committee recommended actionable next steps to address the need for training and support across the care continuum, acknowledging that a one‐size‐fits‐all approach is inadequate in addressing the needs of a group as diverse as ADRD caregivers (Alzheimer’s Association, 2022). The group advocated for the development of training programs tailored to the care recipient’s disease stage and caregiver’s preferences.ConclusionThe Alzheimer’s Association and similar organizations are uniquely positioned to support work in the area of caregiver training. These organizations could collaborate with researchers to develop or expand opportunities to aid ADRD caregivers in medical treatment protocols, financial planning, and end‐of‐life preparation. Medical practices could then implement referral protocols connecting ADRD caregivers with local Alzheimer’s Association Chapters, providing much‐needed support. Bridging the gap between training and support could lead to positive outcomes for caregivers, their care recipients, and society at large (Nichols et al., 2017; Rowe et al., 2016; Guterman et al., 2019).

Daily Stressors, Social Support, and Mental Health Experiences of Dementia Family Caregivers

AbstractBackgroundFamily members providing informal care to individuals living with dementia have an increased risk of depression and anxiety. While risk and protective factors of poor mental health outcomes have previously been identified, little is known about the day‐to‐day circumstances in which depression and anxiety‐related symptoms are more likely to appear among dementia caregivers. The purpose of this study was to identify contextual factors associated with daily depression and anxiety symptom experience among dementia family caregivers.MethodA national sample of family caregivers (N = 165) completed daily diary surveys over 21 days (n = 2,841). Mixed‐level models were used to examine relationships between daily behavioral symptoms of dementia (BSDs), emotional and instrumental social support, and depression and anxiety‐related symptoms.ResultDepression and anxiety symptoms were endorsed by 141 (85.45%) and 155 (93.94%) caregivers, respectively. Dementia caregivers were more likely to report depression (OR = 1.15, 95% CI: 1.11‐1.18, p &lt; 0.001) and anxiety (OR = 1.12, 95% CI: 1.09‐1.16, p &lt; 0.001) on a given day when BSDs were present and perceived as more bothersome than usual. Specific BSDs, including restless behaviors and intense emotions, also increased the daily odds of experiencing depression and anxiety symptoms. Further, the daily odds of depression decreased on days when caregivers reported informal instrumental support (OR = 0.67, 95% CI: 0.4‐0.92, p &lt; 0.05), while the daily odds of anxiety increased on days when caregivers reported emotional support (OR = 1.46, 95% CI: 1.07‐1.99, p &lt; 0.05).ConclusionThe risk of experiencing depression and anxiety symptoms varies daily based on the presence of specific contextual factors. The results from this study demonstrate the dynamic nature of mental health in the context of dementia caregiving. These findings support the need for ecologically‐valid interventions to improve the day‐to‐day well‐being of dementia family caregivers.

Letters of Intent for Pilot Projects Affirm the Heterogeneity of Dementia Family Caregiving

AbstractBackgroundThe Emory Roybal Center for Dementia Caregiving Mastery (P30AG064200) supports pilot intervention projects designed to enhance informal caregiving mastery and seeks to further their development, following the NIH Stage Model. The Center’s core assertions are that dementia caregiving is heterogeneous in nature and that caregiving role demands are positioned within a variety of intersections involving dementia stage and type, the nature of care tasks, caregiver‐care recipient relationships, and/or other social determinants including race/ethnicity, culture, class, and geography. Thus, interventions to develop/enhance caregiving mastery must be designed within the context of these intersections. This presentation demonstrates the resonance of the Center’s central theme and illustrates the wide range of caregiving situations/contexts investigators seek to address.MethodWe analyzed the letters of intent (LOI) investigators submitted to the Center In its three years of operation. The LOIs describe context/situation‐specific caregiving mastery interventions investigators seek to develop.ResultIn three years, the Center received 67 LOIs from investigators in 26 U.S. states. Most (85%) were from female investigators; the majority were from early‐stage (Assistant Professor) investigators (52%) and investigators from underrepresented groups (54%). Responses came from 10 different disciplines (including Behavioral Sciences (including Social Work), 14; Nursing, 12; and Medicine, 10). Proposed interventions fell into three broad (sometimes intersecting) categories: specific caregiving populations (e.g., racial/ethnic groups; specific caregiving relationships); specific caregiving challenges (e.g., skilled care tasks, managing delirium or chronic pain, caregiver self‐care); and dementia types (e.g., MCI, Lewy Body Disease (LBD), and Frontotemporal Dementia). To date, the Center has provided support for pilot projects aiming to enhance mastery in caregivers of persons with Primary Progressive Aphasia and with LBD and couples living with MCI, among Native American caregivers and those from the LGBTQ community and rural caregivers, and those faced with skilled care tasks and who needed to develop skills through distance means.ConclusionThe Center has supported pilot projects that illustrate the importance of appreciating the heterogeneity of dementia caregiving. The voluminous response to the LOI call demonstrates the salience of the heterogeneity theme and underscores the need for additional work to enhance dementia caregiving mastery in its many contexts.

DEMENTIA CAREGIVER SUPPORT PROGRAM IN VIETNAM: DEVELOPMENT, IMPLEMENTATION AND FIRST RESULTS

AbstractBackgroundPrevious studies on support programs including psychoeducation, care training, and counselling have shown to be beneficial for family dementia caregivers with the potential to reduce care giver burden. In this pre‐post study, we aimed to assess the effects of a new support program to reduce caregivers’ burden.MethodsWe developed and conducted a 4‐week support program (4 sessions, 1.5 hours each). An 8‐module course developed by the German Center for Neurodegenerative Diseases (DZNE) and the German Alzheimer’s Society was culturally adapted to fit into the Vietnamese context. Caregivers of people with dementia were invited to participate in the program at Hospital 30‐4 in Ho Chi Minh City, Vietnam.Caregiver burden was assessed with the 22‐item Zarit Burden Interview (ZBI) at baseline and after the intervention using the Wilcoxon signed‐rank test.ResultsA total of 15 caregivers underwent the study. The mean age was 52.7 years, 67% of patients were women, the mean time duration of care was 16 (±9.5, max 30) months. Wilcoxon signed‐rank test indicated that median ZBI scores post‐intervention (median = 40) were not statistically significant difference to the median pre‐intervention (median = 44, Z = 34.5, p = 0.26).ConclusionOur study showed no statistically significant change of burden, however, a tendency towards a reduction of the ZBI score after the intervention. The reasons for not reaching significance might be the small sample size of the intervention. Furthermore, the ZBI assessment directly after the end of the program might miss the effect of the intervention as participants will need time for the implementation of new coping strategies.

Evaluation of virtual caregiver support groups for young-onset dementia family caregivers

ABSTRACT A model of a virtual psychotherapeutic support group was developed for young-onset dementia (YOD; people with dementia under the age of 65) caregivers; one group for adult children and one for spouses. This pilot study evaluated the impact of support groups on YOD caregivers’ psychosocial well-being, coping abilities, and knowledge. At post, psychosocial measures revealed an increase in the number of coping strategies rated as helpful among the 13 spousal and 14 adult children caregivers who completed the study. Adult children were observed to have a reduction in both the negative impact of caregiving and depression scores. Caregivers reported that being able to share experiences with other caregivers in similar circumstances helped them feel supported and less alone. The virtual support groups demonstrated the potential to reduce the negative impact of caregiving, especially among adult children, and showed that the groups could improve knowledge and capacity building for all caregivers.

A text message intervention to support latino dementia family caregivers (CuidaTEXT): feasibility study

ABSTRACT Objectives To test the feasibility, acceptability, and preliminary efficacy of CuidaTEXT: a bidirectional text message intervention to support Latino dementia family caregivers. Methods CuidaTEXT is a six-month, bilingual intervention tailored to caregiver needs (e.g., education, problem-solving, resources). We used convenience sampling and reached 31 potential participants via clinics, registries, community promotion, and online advertising. We enrolled 24 Latino caregivers in a one-arm trial and assessed feasibility, acceptability, and preliminary efficacy within six months. Results None of the participants unsubscribed from CuidaTEXT and 83.3% completed the follow up survey. Most participants (85.7%) reported reading most text messages thoroughly. All participants reported being very or extremely satisfied with the intervention. Participants reported that CuidaTEXT helped a lot (vs not at all, a little, or somehow) in caring for their care recipient (71.4%; n = 15), for themselves (66.7%; n = 14), and understanding more about dementia (85.7%; n = 18). Compared to baseline, at six months caregiver behavioral symptom distress (0–60) decreased from 19.8 to 12.0 and depression (0–30) from 8.8 to 5.4 (p < .05). Conclusions CuidaTEXT demonstrated high levels of feasibility, acceptability, and preliminary efficacy among Latino caregivers. Clinical implications CuidaTEXT’s feasibility and potential for widespread implementation holds promise in supporting Latino caregivers of people with dementia.