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The Porchlight Project: A Pilot Study to Adapt the Senior Companion Program to Enhance Memory Care Services and Supports.

ABSTRACT: Older adult volunteer programs present an important opportunity to provide low cost, community-based support to families living with Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD). In this mixed methods pilot study, volunteers (n = 15) from the Minnesota Senior Companion Program received training in AD/ADRD and palliative care, with the objective of providing more "dementia capable" support to people living with memory loss and their family caregivers. Volunteers applied their skills by engaging clients in a series of guided conversations over 3 months of dementia capable visits. Despite enrollment challenges, volunteers, clients, and caregivers reported that the intervention was appropriate and useful to improve understanding of memory loss and enhance volunteer-client communication. Results of the pilot study were used to refine the Porchlight Project for a future statewide evaluation.

SUBMITTER: Rosebush CE

PROVIDER: S-EPMC8127785 | biostudies-literature | 2021 Jan-Dec

REPOSITORIES: biostudies-literature

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The Porchlight Project: A Pilot Study to Adapt the Senior Companion Program to Enhance Memory Care Services and Supports.

Rosebush Christina E CE Stabler Henry H Nkimbeng Manka M Louwagie Katie K Fields Noelle L NL Jutkowitz Eric E Shippee Tetyana P TP Gaugler Joseph E JE

Gerontology & geriatric medicine 20210101

Older adult volunteer programs present an important opportunity to provide low cost, community-based support to families living with Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD). In this mixed methods pilot study, volunteers (<i>n</i> = 15) from the Minnesota Senior Companion Program received training in AD/ADRD and palliative care, with the objective of providing more "dementia capable" support to people living with memory loss and their family caregivers. Volunteers ...[more]

PMID: 34036120

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Project description:BACKGROUND:The Korean Undiagnosed Diseases Program (KUDP) was launched in January 2017 as a one-year pilot project to address the increasing global interest in patients with undiagnosed rare diseases. The purpose of this paper is to summarize the project results and emphasize the unmet research needs among patients with undiagnosed rare diseases in Korea. RESULTS:Patient enrollment, assessment, and diagnostic processes were determined by the KUDP clinical expert consortium. Patients followed a diagnostic workflow after being categorized into one of four groups: I) insufficient clinical information or lack of standard diagnostic processes; II) undiagnosed due to low disease awareness; III) clinically diagnosed but unconfirmed genetically due to genetic heterogeneities; or IV) unknown disease due to complex, atypical clinical presentations. After excluding two patients from group I, 97 patients were enrolled, including 10 in group II, 67 in group III, and 20 in group IV. Most of them (92 of 97, 94.8%) were pediatric patients (< 18 years old) and 59 (60.8%) were male. The primary symptoms for 80 patients (82.5%) were neurologic. During the one-year pilot study, 72 patients completed a diagnostic assessment including clinical and molecular genetic analyses; some patients also underwent pathological or biochemical analysis. Twenty-eight of these patients (28/72, 38.9%) achieved molecular genetic diagnosis. Thirteen patients were diagnosed based on traditional tests, including biochemical assay, single or targeted genetic analysis, and chromosomal microarray. We performed whole exome sequencing on 52 patients, among whom 15 (28.8%, 15/52) reached a final diagnosis. One new disorder was identified via international collaboration. CONCLUSIONS:Using an efficient clinical diagnostic workflow, this KUDP pilot study resulted in a fair diagnostic success rate, improving the potential for additional diagnoses and new scientific discovery of complex and rare diseases. KUDP also satisfied unmet needs for rare diseases with multisystem involvement, highlighting the value of emerging genomic technologies for further research into rare and still-undiagnosed conditions.

Project description:The National Institutes of Health (NIH) established the Building University Infrastructure Leading to Diversity (BUILD) initiative to increase engagement and retention of undergraduates from diverse backgrounds in biomedical research. Portland State University, in partnership with ten other academic institutions, received a BUILD award and developed the BUILD EXITO (Enhancing Cross-Disciplinary Infrastructure and Training at Oregon) project. The EXITO program offers a three-year research and mentorship experience for undergraduates in biomedical, behavioral, social science, clinical, and bioengineering disciplines. The BUILD initiative also emphasizes enhancing research capacity and infrastructure through institutional change and faculty development. A key piece of EXITO's program to enhance research capacity is offering faculty an opportunity to apply for up to $50,000 of funding to carry out a one-year pilot study. We conducted two separate RFAs for this purpose, closely modeled on NIH's Small Grant Program (R03), over two years. Principal Investigators of pilot projects were encouraged to include EXITO students, or other undergraduate students, on their research teams. Students then worked on these research projects as part of EXITO's intensive mentored research program. This paper reports on methods to conduct and implement a pilot project program intended to train primarily junior faculty members to write and submit an NIH proposal and fund successful applicants to gather pilot project data to aid in applying for future proposals. We provided a step-by-step rigorous submission and review process. We provided proposal writing and revising workshops, technical support, and helped pilot project Principal Investigators (PIs) with biosketches, IRB applications, IUCUC documents, budgets, and other proposal sections. We secured at least three external (not at any BUILD EXITO institution) reviewers for each proposal. PIs revised proposals before resubmitting and receiving their final scores. Across two RFAs, we provided funds twenty PIs to conduct pilot projects; these projects included at least 21 students working on them who received mentoring in research methods and in disseminating results. This paper describes important lessons learned, including the importance of: allotting sufficient time to recruit reviewers; recruiting reviewers through a variety of sources and methods; and assisting PIs in engaging with research administration staff at Portland State University and partner institutions. Challenges included: finding an optimal timeline that was neither too compressed nor too stretched out; encouraging applicants from distant partner institutions to apply and keeping them engaged and retained through the entire process; and assisting PIs from partner institutions to efficiently utilize Portland State University's sponsored projects department if similar resources were not available at their home institutions. Our goal is to provide guidance and insights to faculty and research-administration staff at other institutions interested in replicating or adapting EXITO's program to enhance institutional research capacity.

Dataset Information

The Porchlight Project: A Pilot Study to Adapt the Senior Companion Program to Enhance Memory Care Services and Supports.

Publications

The Porchlight Project: A Pilot Study to Adapt the Senior Companion Program to Enhance Memory Care Services and Supports.

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