PRELIMINARY RESULTS OF THE CONFIDENCE FINANCIAL INTERVENTION FOR CAREGIVERS TO PERSONS LIVING WITH DEMENTIA
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PROVIDER: S-EPMC10735777 | biostudies-literature | 2023 Dec
REPOSITORIES: biostudies-literature
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Project description:ObjectiveAs the number of individuals diagnosed with dementia increases, so does the need to understand the preferences of persons living with dementia (PLWD) and caregivers for how clinicians can deliver a dementia diagnosis effectively, which can be a difficult process. This study describes the diagnostic communication preferences of PLWD and caregivers.MethodsWe conducted semi-structured individual phone interviews with two groups: PLWD who were diagnosed in the past two years (n = 11) and family caregivers of PLWD (n = 19) living in Florida. PLWD and caregivers were not recruited/enrolled as dyads.ResultsThe groups' communication preferences were largely similar. Data were analyzed thematically into five themes: communicate the diagnosis clearly, meet information needs, discuss PLWD/caregiver resources, prepare for continued care, and communicate to establish and maintain relationships.ConclusionParticipants wanted clear communication, information, and support, but differed in some details (e.g. the language used to describe the diagnosis and the amount/type of desired information). Clinicians can apply general principles but will need to tailor them to individual preferences of PLWD and caregivers.InnovationLimited research has elicited PLWD and caregivers' communication preferences for receiving dementia diagnoses, particularly through an individualized data collection method allowing for richer descriptions and deeper understanding.
| S-EPMC10828581 | biostudies-literature
Project description:Poor sleep is prevalent among caregivers of persons living with dementia and increases their risk for cognitive impairment and decline. In this cross-sectional, correlational study, we compared the cognitive function scores of caregivers with poor sleep with the demographically adjusted normed scores of the National Institutes of Health Toolbox Cognition Battery. Caregivers completed a 14-day sleep diary. On average, caregivers (n = 28) were 65.14 (±10.08) years, female, and White. Their average crystallized cognitive function composite score was significantly higher and their average fluid cognitive function composite score was significantly lower than the normative scores. Caregivers performed significantly worse on the processing speed domain measure. Poor sleep may affect how caregivers, including highly educated caregivers, process and respond to information, thus can influence how they safely perform complex caregiving tasks. Health care providers should consistently assess caregivers' sleep and cognitive abilities to promptly identify changes and provide timely interventions.
| S-EPMC9112431 | biostudies-literature
Project description:BackgroundPersons with dementia are likely to require care from various health care providers in multiple care settings, necessitating navigation through an often-fragmented care system. This study aimed to create a better understanding of care transition experiences from the perspectives of persons living with dementia and their caregivers in Ontario, Canada, through the development of a theoretical framework.MethodsConstructivist grounded theory guided the study. Seventeen individual caregiver interviews, and 12 dyad interviews including persons with dementia and their caregivers, were recorded and transcribed verbatim. The data were coded using NVivo 10 software; analysis occurred iteratively until saturation was reached.ResultsA theoretical framework outlining the context, processes, and influencing factors of care transitions was developed and refined. Gaining an in-depth understanding of the complex care transitions of individuals with dementia and their caregivers is an important step in improving the quality of care and life for this population.ConclusionThe framework developed in this study provides a focal point for efforts to improve the health care transitions of persons living with dementia.
| S-EPMC8086075 | biostudies-literature
Project description:Sleep disturbance is prevalent among caregivers of people living with dementia. However, gaps exist about caregivers' sleep patterns before and during their caregiving trajectory. This exploratory secondary analysis using a qualitative descriptive approach aimed to (1) identify and describe current caregivers' patterns of change in sleep before and during caregiving, and (2) understand caregivers' perceptions of their current sleep compared to their pre-caregiving sleep. We conducted semi-structured interviews with 19 caregivers taking part in a larger randomized controlled trial. Participants were female (n = 11), white (n = 13) and on average 63 years of age. Interview questions focused on caregivers' sleep patterns. The interviews were audio-recorded using a videoconferencing platform and ranged from 20 to 45 minutes. We conducted thematic analysis of the interview transcripts. Three distinct caregiver-sleep profiles emerged from the qualitative data: changed and dissatisfied, changed and satisfied, and unchanged and dissatisfied. Caregivers whose sleep was categorized as changed reported a difference when comparing their current sleep pattern to their pre-caregiving sleep pattern. This was usually a change from good to poor sleep. Caregivers whose sleep was unchanged had poor sleep pre-caregiving and continued to have poor sleep during caregiving. Caregivers also reported being satisfied or dissatisfied with their current sleep pattern, defined in terms of distress and impairment. These three subtypes highlight the heterogeneity of caregivers' sleep experiences and debut a useful clinical framework with which to identify, categorize, and target caregivers at risk for sleep disturbance, many who may be ready to engage in behaviors to improve their sleep. Knowing caregivers' sleep profiles will enable health care providers and researchers to determine caregivers' needs and readiness for interventions then work collaboratively with them to improve their sleep problems.
| S-EPMC10976108 | biostudies-literature
Project description:Background and objectivesCaregivers of persons with dementia report worse sleep when compared to the general population. The objective of this review was to synthesize evidence regarding the link between caregiver burden and dementia caregivers' sleep.Research design and methodsWe conducted a scoping review using a systematic search for pertinent literature in PubMed, CINAHL, and Web of Science through March 2022. Keywords included content areas of dementia, caregiver burden, and sleep. Inclusion criteria were informal caregivers of persons living with dementia, a measured relationship between informal dementia caregiver sleep and subjective caregiver burden variables, and original research. Non-English studies were excluded. Extracted data were organized in tables, compared, and synthesized.ResultsThe search yielded 540 nonduplicate articles screened by title and abstract; 118 full-text articles were reviewed; 24 were included. Most studies were cross-sectional, with variable sample sizes. Dementia caregivers had significantly poorer overall perceived sleep than noncaregivers across 4 studies that examined self-reported sleep measures. Eighteen studies investigated the association between caregiver burden and self-reported sleep quality, with 14 reporting a significant positive association between caregiver burden and self-reported sleep quality, and 4 finding null results. Only 2 of the 4 studies reporting the association between caregiver burden and objective sleep parameters (ie, actigraphy and polysomnography) reported a significant positive association for at least one sleep subdomain.Discussion and implicationsAlthough subjective sleep quality is commonly affected by dementia caregiving burden, there is a lack of corresponding evidence on the relationship between burden and objective sleep metrics. Healthcare providers should consider the dementia caregiver burden's impact on sleep and regularly assess caregivers' sleep difficulties. Future studies should focus on consistently measuring caregiver burden and sleep to promote dementia caregiver health and well-being.
| S-EPMC10901478 | biostudies-literature
Project description:In recent years, there has been a rapid increase in technology use in dementia caregiving, particularly the use of mobile applications (apps) which are highly accessible, cost-effective and intuitive. Yet, little is known about the experiences of family caregivers of persons living with dementia who use apps to support caregiving activities. This is of particular concern given that limited understandings of the user experience in designing technology have often led to end-users experiencing barriers in technology adoption and use. Using a qualitative descriptive approach, the purpose of the study was to explore the experiences of family caregivers of persons living with dementia on using apps in their caregiving roles. A purposive sample of five family caregivers in Ontario, Canada participated in two interviews each, with the second interview informed by photo-elicitation methods. Thematic analysis of the collected data revealed a central overarching theme, Connecting to support through apps in my, your and our lives, which explicated how apps played an important role in the lives of the caregiver, the care recipient and both together as a dyad. Three core themes also emerged: Adapting apps to meet individual needs of the dyad, Minimising the impact of the condition on the person and the family and Determining the effectiveness of apps. The findings highlighted that the value of apps extends beyond their mere functionality and their ability to help with care provision as they are also able to promote richer interpersonal connections, enhance personhood and sustain family routines. This research advances our understanding of the impact of app use in caregiving and provides direction for future research, policy, education, practice and app development.
| S-EPMC9237854 | biostudies-literature
Project description:Persons living with dementia (PLWD) have high emergency department (ED) utilization. Little is known about using telemedicine with PLWD and caregivers as an alternative to ED visits for minor acute health problems. This qualitative interview-based study elicited caregivers' perspectives about the acceptability of telemedicine for acute complaints. We performed telephone interviews with 28 caregivers of PLWD from two academic EDs, one in the Northeast and another in the South. Using a combined deductive-inductive approach, we coded interview transcripts and elucidated common themes by consensus. All caregivers reported they would need to participate in the telemedicine visit to help overcome communication and digital literacy challenges. People from racial/ethnic minority groups reported lower comfort with the virtual format. In both sites, participants expressed uncertainty about illness severity that could preclude using telemedicine for acute complaints. Overall, respondents deemed acute care telemedicine acceptable, but caregivers describe specific roles as crucial intermediaries to facilitate virtual care.
| S-EPMC10693729 | biostudies-literature
Project description:The study investigated COVID-19 vaccine acceptance, hesitancy, and barriers among family caregivers of rural community-dwelling persons living with dementia (PLwD). Three waves of telephone interviews with 26 family caregivers (96% White, 81% Female, Mage = 63 ± 12 years) were analyzed using thematic content analysis. At Wave 3, although all dyads were eligible, only 10 dyads had received their first dose of the vaccine. In 10 dyads, neither person had received the vaccine; in2 dyads, the caregivers did but the PLwD did not; and in 4 dyads, the caregiver did not but the PLwD did. Perceived direct and indirect health risks, cues from trusted allies, and ability to overcome vaccination barriers affected COVID-19 vaccination acceptance. Vaccine refusals were motivated by a low perceived risk of COVID-19, vaccine fear, and personal beliefs. Findings have implications for administration of preventative care practices for dementia family caregivers living in remote locations during a public health emergency.
| S-EPMC9791073 | biostudies-literature
Project description:BackgroundStress related to Alzheimer disease and related dementias (ADRD) is common, particularly among those who care for persons with challenging behaviors and personality or mood changes. Mindfulness and self-compassion programs are efficacious for managing stress. The skills of mindfulness and self-compassion, however, must be integrated with behavioral management skills in order to effectively improve caregiver stress.ObjectiveIn this study, we aimed to describe the development of the Mindful and Self-Compassionate Care (MASC) program, the first program that combines mindfulness and self-compassion with behavioral management skills to decrease caregiver stress, and its evaluation in the Supporting Our Caregivers in ADRD Learning (SOCIAL) study.MethodsUsing the National Institutes of Health (NIH) stage model, we describe 3 phases of work encompassing NIH Stages 1A and 1B. In phase 1, we conducted 5 focus groups (N=28) of stressed individuals caring for persons with ADRD and challenging behaviors. Rapid data analysis informed the development of a 6-week online intervention. Phase 2 (NIH stage 1A) includes an open pilot (N>10) with optional exit interviews. Phase 3 (NIH stage 1B) is a feasibility randomized controlled trial of the intervention versus the Health Education Program control. Primary outcomes focus on feasibility with secondary outcomes encompassing acceptability, credibility, fidelity, and signals of preliminary efficacy. Phase 1 follows traditional recommendations for qualitative analyses (at the point of thematic saturation) which was achieved after 5 focus groups (N=28). For the phase 2 open pilot, up to 12 participants will be recruited. For the phase 3 feasibility study, recruitment of 80 caregivers will allow the assessment of feasibility benchmarks. Data for phase 1 included 5 focus groups. In phases 2 and 3, data collection will occur through REDCap (Research Electronic Data Capture; Vanderbilt University) surveys and an optional qualitative exit interview. Analyses will include hybrid inductive-deductive analyses for qualitative data and assessment of changes in our intervention targets and outcomes using t tests and correlation analyses.ResultsIn phase 1, caregivers reported interest in a brief, online stress management program. Participants held misconceptions about mindfulness and self-compassion, but after detailed explanation thoughts, these skills could be helpful when directly linked to implementation during caregiving routines. Phases 2 and 3 will be completed by the end of 2025.ConclusionsWe describe the protocol for the Supporting Our Caregivers in ADRD Learning study, as well as the development and feasibility testing of the Mindful and Self-Compassionate Care intervention. Future work will include a fully powered efficacy-effectiveness randomized controlled trial.Trial registrationClinicalTrials NCT05847153; https://clinicaltrials.gov/study/NCT05847153; and ClinicalTrials.gov NCT06276023; https://clinicaltrials.gov/study/NCT06276023.International registered report identifier (irrid)DERR1-10.2196/58356.
| S-EPMC11512127 | biostudies-literature
Project description:BackgroundRacial/ethnic minority and immigrant caregivers of persons with dementia experience high rates of psychosocial stress and adverse health outcomes. Few culturally tailored mobile health (mHealth) programs were designed for these vulnerable populations.ObjectiveThis study reports the development of a culturally tailored mHealth program called Wellness Enhancement for Caregivers (WECARE) to improve caregiving skills, reduce distress, and improve the psychosocial well-being of Chinese American family caregivers of persons with dementia.MethodsCommunity-based user-centered design principles were applied in the program development. First, the structure and curriculum of the WECARE program were crafted based on existing evidence-based interventions for caregivers with input from 4 experts. Second, through working closely with 8 stakeholders, we culturally adapted evidence-based programs into multimedia program components. Lastly, 5 target users tested the initial WECARE program; their experience and feedback were used to further refine the program.ResultsThe resulting WECARE is a 7-week mHealth program delivered via WeChat, a social media app highly popular in Chinese Americans. By subscribing to the official WECARE account, users can receive 6 interactive multimedia articles pushed to their WeChat accounts each week for 7 weeks. The 7 major themes include (1) facts of dementia and caregiving; (2) the enhancement of caregiving skills; (3) effective communication with health care providers, care partners, and family members; (4) problem-solving skills for caregiving stress management; (5) stress reduction and depression prevention; (6) the practice of self-care and health behaviors; and (7) social support and available resources. Users also have the option of joining group chats for peer support. The WECARE program also includes a back-end database that manages intervention delivery and tracks user engagement.ConclusionsThe WECARE program represents one of the first culturally tailored social media-based interventions for Chinese American caregivers of persons with dementia. It demonstrates the use of community-based user-centered design principles in developing an mHealth intervention program in underserved communities. We call for more cultural adaptation and development of mHealth interventions for immigrant and racial/ethnic minority caregivers of persons with dementia.
| S-EPMC9562087 | biostudies-literature