Published work on dementia research co-production focuses on developing health and social care interventions. Less is written about practicalities and experiences of co-producing dementia research funding applications. UK public contributors are typically from white middle class populations. Widening involvement is essential for co-produced research that meaningfully addresses health inequalities. We provide an example of a diverse lived experience group co-producing a dementia research funding application. An NIHR Dementia Career Development award funded PPIE work to develop a broad research idea. A culturally diverse lived experience group consisted of one person living with dementia, four carers and one former carer. Virtual group sessions drew on each person's unique experiences and expertise. Two co-leads collaborated closely with the researcher. We reflected on our experiences of diversity and inclusion within the group, based on a coproduced set of questions to guide reflection. Written records of reflections were captured and refined by the group. We structured reflections into three overarching categories: Diversity and inclusion, Benefits to group members and Challenges. The group felt empowered, heard, and like equals in the process. Members valued diversity and mutual learning within the group. Involvement of co-leads was seen as democratic and inclusive. Some members felt Equality, Diversity and Inclusion (EDI) discussions were challenging. We share valuable lessons learned in the process, including suggestions for facilitating EDI discussions, building in funding for time and travel to support relationship building, and ensuring PPIE remuneration processes are accessible and streamlined.

Download full-text PDF

Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC11163838PMC
http://dx.doi.org/10.1177/14713012241231916DOI Listing

Publication Analysis

Top Keywords

dementia funding
12
diverse lived
12
lived experience
12
experience group
12
diversity inclusion
12
group
9
funding application
8
co-producing dementia
8
edi discussions
8
dementia
6

Similar Publications

We examine the efficacy of the Individualized Coordination and Empowerment for Care Partners of Persons with Dementia (ICECaP), an intervention that involves one-on-one individualized support from a dementia care coordinator for a dementia care partner, compared to an active control group. At least once monthly contact is made from a dementia care coordinator to the dementia care partner by telephone, video conferencing, email, or in-person support at clinical visits for the person with dementia. In this pilot randomized unblinded control trial of ICECaP, n = 61 (n = 90 randomized) care partners completed 12-months of the ICECaP intervention and n = 69 (n = 92 randomized) care partners received routine clinical support (controls) in an outpatient memory care clinic at an academic medical center, from which the participants were recruited.

View Article and Find Full Text PDF

NOTCH3 Mutation Causes Glymphatic Impairment and Promotes Brain Senescence in CADASIL.

CNS Neurosci Ther

January 2025

Department of Neurology, Mental and Neurological Disease Research Center, The Third Affiliated Hospital of Sun Yat-Sen University, Guangzhou, China.

Aims: The aim of this study is to investigate the role of glymphatic function of cerebral autosomal dominant arteriopathy, subcortical infarcts, and leukoencephalopathy (CADASIL), the most common monogenic small vessel disease caused by NOTCH3 mutation, and to explore potential therapeutic strategies to improve glymphatic function.

Methods: We assessed glymphatic influx and efflux function in CADASIL mouse models (Notch3) and correlated these findings with brain atrophy in CADASIL patients. We also investigated the underlying mechanisms of glymphatic impairment, focusing the expression of AQP4 in astrocytic endfeet.

View Article and Find Full Text PDF

Role of NLRP3 Inflammasome in Chronic Pain and Alzheimer's Disease-A Review.

J Biochem Mol Toxicol

February 2025

Department of Histology and Embryology, Faculty of Basic Medical Sciences, Hubei University of Medicine, Shiyan, People's Republic of China.

The coexistence of Alzheimer's disease (AD) and chronic pain (CP) in the elderly population has been extensively documented, and a growing body of evidence supports the potential interconnections between these two conditions. This comprehensive review explores the mechanisms by which CP may contribute to the development and progression of AD, with a particular focus on neuroinflammatory pathways and the role of microglia, as well as the activation of the NLR family pyrin domain containing 3 (NLRP3) inflammasome. The review proposes that prolonged pain processing in critical brain regions can dysregulate the activity of the NLRP3 inflammasome within microglia, leading to the overproduction of pro-inflammatory cytokines and excessive oxidative stress in these regions.

View Article and Find Full Text PDF

Background/objectives: Previous research indicates that extract (Gbe) may contribute to slowing down the progression of dementia. This retrospective cohort study analyzed the association between Gbe prescriptions and the progression of dementia severity in a real-world setting.

Methods: This study was conducted using data from patients with an initial diagnosis of mild or moderate dementia between January 2005 and December 2022 from the IQVIA™ Disease Analyzer database.

View Article and Find Full Text PDF

Biomarker Investigation Using Multiple Brain Measures from MRI Through Explainable Artificial Intelligence in Alzheimer's Disease Classification.

Bioengineering (Basel)

January 2025

Dipartimento di Elettronica, Informazione e Bioingegneria, Politecnico di Milano, 20133 Milan, Italy.

As the leading cause of dementia worldwide, Alzheimer's Disease (AD) has prompted significant interest in developing Deep Learning (DL) approaches for its classification. However, it currently remains unclear whether these models rely on established biological indicators. This work compares a novel DL model using structural connectivity (namely, BC-GCN-SE adapted from functional connectivity tasks) with an established model using structural magnetic resonance imaging (MRI) scans (namely, ResNet18).

View Article and Find Full Text PDF

Want AI Summaries of new PubMed Abstracts delivered to your In-box?

Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!