The concept of developing collaborative partnerships with community-based organizations (CBOs) is based on the community psychology perspective of forming reciprocal, nonexploitative partnerships with community members. This perspective has evolved from the empowerment literature which views the community psychologist as a collaborator with community members who participate in all aspects of an intervention and evaluation. This article presents a conceptual model of effective university-CBO partnerships, with emphasis on HIV prevention research. A six stage model is presented, with emphasis on the beginning stages of developing collaborations with AIDS related CBOs. These stages are: 1. Selecting a potential CBO partner; 2. Developing a reciprocal relationship; 3. Deciding on a research question; 4. Conducting the research/evaluation; 5. Analyzing and interpreting the data; and 6. Dissemination. Barriers to effective collaboration are discussed. These barriers include having different goals, relationships that are not perceived as mutually beneficial, unfamiliarity with cultural norms, and power differentials between university based researchers and CBO staff and community members. Strategies to avoid these potential problems are presented.
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http://dx.doi.org/10.1300/j005v19n01_01 | DOI Listing |
Preclinical Alzheimer's prevention trials require a multi-year commitment from diverse, cognitively unimpaired individuals willing to receive biomarker results of confirmed Alzheimer's pathology and possible ApoE4 status. Participants learn new terms such as ARIA, edema and microhemorrhage and undergo numerous MRI scans for safety monitoring. They take quarterly composite Alzheimer's assessments that are anxiety-provoking and highlight weaknesses which may have been unrecognized in daily life.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
The University of Sydney, Camperdown, NSW, Australia.
Background: People with dementia and their care givers are provided limited guidance in medication management, potentially contributing to medication-related harm. Importantly, there are no resources that provide comprehensive medication management guidance across care settings. To ensure that resources are co-designed, genuine involvement of people with dementia, their care givers and the community in identifying the priorities for medication management guidance resources is needed.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
Brown University School of Public Health, Providence, RI, USA.
Background: The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's Disease and Alzheimer's Related Dementia (AD/ADRD) Clinical Trials (IMPACT) Collaboratory, in partnership with the Alzheimer's Association, convened a Lived Experience Panel (LEP), a group of 9-12 individuals, including people living with cognitive symptoms, proxies representing people with an advanced cognitive disorder or who are deceased, and care partners of a person living with dementia. The aim was for the LEP members to share their experiences with research, inform the development of research priorities, and provide input on conducting embedded pragmatic clinical trials (ePCTs) of dementia care interventions. Given the importance of providing a space for people with lived experiences to share their thoughts and recommendations, we continue to report on the final stage of LEP in its original design.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
Otsuka America Pharmaceutical Inc., Princeton, NJ, USA.
Background: Over the past 3 years, the Global Council on Alzheimer's Disease (GCAD) has conducted research on lived experience and care partner journeys. Specifically, this research has focused on the experiences of individuals from historically underrepresented populations, including LGBTQ+, Black, Hispanic/Latino, and Asian communities. The goal has been to identify how these journeys might diverge across communities, understand various nuances that exist across cultures, and recognize the impact these might have on seeking diagnosis, care, and support.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
SingHealth Community Hospitals, Singapore, Singapore.
Background: Social robots have been used in other countries for improvement of quality of life for persons with dementia.
Method: LOVOT was introduced as an adjunct to regular therapy sessions (either Physiotherapy or Occupational Therapy) and as an interactive companion during the patient's inpatient stay. The project was carried out over a span of 6 weeks (weekdays) for a maximum of 10-15 mins on an ad-hoc basis.
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