Dataset Information

Recruiting and Retaining Dyads of Hospitalized Persons with Dementia and Family Caregivers.

ABSTRACT: Persons with dementia have high rates of hospitalization, and along with their caregivers commonly experience negative hospital outcomes. The recruitment and retention of acutely ill older adults with dementia and caregivers can pose a challenge to investigators and threaten the validity of findings. The challenges encountered in an ongoing cluster randomized clinical trial in dyads of hospitalized persons with dementia and family care partners are described. The trial tests the efficacy of a nurse-family partnership model that aims to improve the following: (a) the physical and cognitive recovery in hospitalized persons with dementia, and (b) caregiver preparedness and anxiety. Strategies that address challenges include careful preplanning and preparation with the hospital site, strong communication with dyads and between team members, and honoring preferences and needs related to communication.

SUBMITTER: Boltz M

PROVIDER: S-EPMC9472232 | biostudies-literature | 2022 Mar

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Recruiting and Retaining Dyads of Hospitalized Persons with Dementia and Family Caregivers.

Boltz Marie M Kuzmik Ashley A Resnick Barbara B BeLue Rhonda R

Western journal of nursing research 20210812 3

Persons with dementia have high rates of hospitalization, and along with their caregivers commonly experience negative hospital outcomes. The recruitment and retention of acutely ill older adults with dementia and caregivers can pose a challenge to investigators and threaten the validity of findings. The challenges encountered in an ongoing cluster randomized clinical trial in dyads of hospitalized persons with dementia and family care partners are described. The trial tests the efficacy of a nu ...[more]

PMID: 34382886

Similar Datasets

Project description:There are currently 15 million Americans who provide over 80% of the care required by their family members with Alzheimer's disease and other dementias. Yet care for caregivers continues to be fragmented and few evidence-based interventions have been translated into routine clinical care and therefore remain inaccessible to most family caregivers. To address this gap, the Caring for the Caregiver program is being developed at UT Health San Antonio, School of Nursing to improve support services and health outcomes for family caregivers. Our purpose is to describe the engagement process undertaken to assess caregiver and community needs and how findings are informing program development.We are using a model of public engagement that consists of communication of information, collection of information from stakeholders, and collaboration where stakeholders are partners in an exchange of information to guide program activities. An assessment of the community was undertaken to identify resources/services for family caregivers. Subsequently, stakeholders were invited to a community-academic forum to discuss strategies to build on existing strengths for family caregiving and to identify gaps in care. Detailed notes were taken and all discussions were recorded and transcribed for analysis. Data were analyzed using thematic content analysis.We conducted site visits with 15 community agencies, interviewed 13 family caregivers, and attended community events including support groups and health and senior fairs. Fifty-three diverse stakeholders attended the community-academic forum. Participants identified existing assets within our community to support family caregivers. Consistent among groups was the need to increase awareness in our community about family caregivers. Themes identified from the discussion were: making the invisible visible, you don't know what you don't know, learning too late, and anticipating and preparing for the future.Incorporating caregiver and community stakeholders was critical to ensure that the priorities of our community are addressed in a culturally responsive accessible program for family caregivers. The forum served as important mechanism to partner with the community and will be an annual event where we can continue to work with our stakeholders around needs for practice, education, and research.

Project description:Background and objectivesProper symptom management, informal caregiver support, and service innovation are required to reduce dementia care burden. The objective of this study is to investigate the effect of the multicomponent LIVE (Learning, Innovation, Volunteering, Empowerment) intervention on caregiver experience of the self-perceived care situation, coordinator performance, and informal care time.Research design and methodsWe conducted a 24-month multicomponent, stepped-wedge randomized control trial including dyads of people ≥65 years with mild-to-moderate dementia with minimum weekly contact with their informal caregivers in Norway. The intervention was implemented by municipal coordinators over a 6-month period. This study investigates the first 6-month period (September 2019-March 2020) of the trial, due to the coronavirus disease 2019 (COVID-19) pandemic. Primary outcomes are changes in provision of informal care time assessed by Resource Utilization in Dementia Care (RUD) and informal caregiver experience assessed by the Clinical Global Impression of Change (CGIC). We use logistic regression and feedback system analysis to assess the reach of the multicomponent intervention.ResultsA total of 280 dyads were included at baseline, mean age of the person with dementia was 81.8 years, and 62.5% were female. After 6 months, the feedback system analysis reveals that the caregivers randomized to the intervention period reported improved caregiver situation (CGIG-T: intervention 0.63 (SD 2.4) vs control -0.43 (SD 1.7), p < .01), even though informal care time for activities of daily living was not reduced (p = .31). Informal caregivers registered a positive change for the Learning, Innovation, and Empowerment components, while no change was found for Volunteer support.Discussion and implicationsFindings illustrate the usefulness of dementia care coordinators that provide regular follow-up. We also show that complex intervention studies benefit from applying feedback system analysis. Meeting the needs of persons with dementia and their caregivers is a complex process that requires coordinated input from health services and user communities.Clinical trial registration numberNCT04043364.

Dataset Information

Recruiting and Retaining Dyads of Hospitalized Persons with Dementia and Family Caregivers.

Publications

Recruiting and Retaining Dyads of Hospitalized Persons with Dementia and Family Caregivers.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets