COVID-19-induced acute loss of consciousness in Marchiafava-Bignami disease: a case report.

Among the various manifestations of COVID-19, the neurological implications of SARS-CoV-2 infection are of significant concern. Marchiafava-Bignami disease (MBD), a neurodegenerative disorder, exhibits a clinical spectrum ranging from mild progressive dementia in its chronic form to states of acute coma and varied mortality rates. Acute MBD primarily occurs in chronic alcoholics and malnourished individuals and is characterized by sudden loss of consciousness, seizures, confusion, and psychosis. We herein report a case of MBD presenting as acute loss of consciousness after the development of COVID-19. The patient presented with a history of fever and upper respiratory infection and was diagnosed with SARS-CoV-2 infection. He developed a neurological syndrome characterized by altered consciousness and convulsions, and brain magnetic resonance imaging revealed abnormal signals in the corpus callosum and frontoparietal lobes. Considering his alcohol intake history and the absence of other differential diagnoses, we diagnosed him with acute MBD triggered by COVID-19. After high-dose vitamin B1 and corticosteroid therapy, his clinical symptoms improved. In this case, we observed a temporal sequence between the development of COVID-19 and acute exacerbation of MBD. This case adds to the mounting evidence suggesting the potential effect of SARS-CoV-2 on the neurological system.

Factors That Influence Successful Adoption of Real-Time Location Systems for Use in a Dementia Care Setting: Mixed Methods Study.

BACKGROUND: Technology has been identified as a potential solution to alleviate resource gaps and augment care delivery in dementia care settings such as hospitals, long-term care, and retirement homes. There has been an increasing interest in using real-time location systems (RTLS) across health care settings for older adults with dementia, specifically related to the ability to track a person's movement and location. OBJECTIVE: In this study, we aimed to explore the factors that influence the adoption or nonadoption of an RTLS during its implementation in a specialized inpatient dementia unit in a tertiary care rehabilitation hospital. METHODS: The study included data from a brief quantitative survey and interviews from a convenience sample of frontline participants. Our deductive analysis of the interview used the 3 categories of the Fit Between Individuals, Task, and Technology framework as follows: individual and task, individual and technology, and task and technology. The purpose of using this framework was to assess the quality of the fit between technology attributes and an individual's self-reported intentions to adopt RTLS technology. RESULTS: A total of 20 health care providers (HCPs) completed the survey, of which 16 (80%) participated in interviews. Coding and subsequent analysis identified 2 conceptual subthemes in the individual-task fit category, including the identification of the task and the perception that participants were missing at-risk patient events. The task-technology fit category consisted of 3 subthemes, including reorganization of the task, personal control in relation to the task, and efficiency or resource allocation. A total of 4 subthemes were identified in the individual-technology fit category, including privacy and personal agency, trust in the technology, user interfaces, and perceptions of increased safety. CONCLUSIONS: By the end of the study, most of the unit's HCPs were using the tablet app based on their perception of its usefulness, its alignment with their comfort level with technology, and its ability to help them perform job responsibilities. HCPs perceived that they were able to reduce patient search time dramatically, yet any improvements in care were noted to be implied, as this was not measured. There was limited anecdotal evidence of reduced patient risk or adverse events, but greater reported peace of mind for HCPs overseeing patients' activity levels.

Social prescribing for people living with dementia (PLWD) and their carers: what works, for whom, under what circumstances and why - protocol for a complex intervention systematic review.

INTRODUCTION: Dementia is a complex medical condition that poses significant challenges to healthcare systems and support services. People living with dementia (PLWD) and their carers experience complex needs often exacerbated by social isolation and challenges in accessing support. Social prescribing (SP) seeks to enable PLWD and their carers to access community and voluntary sector resources to support them address such needs. Existing research, however, does not describe what SP interventions are currently in place in dementia care. Little is known about the needs these interventions are designed to address, the reasons that lead PLWD and their carers to participate in them, their effectiveness and the extent to which they could increase positive health outcomes if adopted and how. METHODS AND ANALYSIS: A complex intervention systematic review of SP for PLWD and/or their carers will be conducted using an iterative logic model approach. Six electronic (MEDLINE, EMBASE, PsycINFO, CINAHL, Scopus and Cochrane/CENTRAL) and two grey literature databases (EThOS and CORE) were searched for publications between 1 January 2003 and June 2023, supplemented by handsearching of reference lists of included studies. Study selection, data extraction and risk of bias assessment, using Gough's Weight of Evidence Framework, will be independently performed by two reviewers. A narrative approach will be employed to synthesise and report quantitative and qualitative data. Reporting will be informed by the Preferred Reporting Items for Systematic Review and Meta-Analysis Complex Interventions extension statement and checklist. ETHICS AND DISSEMINATION: No ethical approval is required due to this systematic review operating only with secondary sources. Findings will be disseminated through peer-reviewed publications, conference presentations and meetings with key stakeholders including healthcare professionals, patient and carer groups, community organisations (eg, the Social Prescribing Network and the Evidence Collaborative at the National Academy for Social Prescribing), policymakers and funding bodies. PROSPERO REGISTRATION NUMBER: CRD42023428625.

Protocol for a construct and clinical validation study of MyCog Mobile: a remote smartphone-based cognitive screener for older adults.

INTRODUCTION: Annual cognitive screening in older adults is essential for early detection of cognitive impairment, yet primary care settings face time constraints that present barriers to routine screening. A remote cognitive screener completed on a patient's personal smartphone before a visit has the potential to save primary care clinics time, encourage broader screening practices and increase early detection of cognitive decline. MyCog Mobile is a promising new remote smartphone-based cognitive screening app for primary care settings. We propose a combined construct and clinical validation study of MyCog Mobile. METHODS AND ANALYSIS: We will recruit a total sample of 300 adult participants aged 65 years and older. A subsample of 200 healthy adult participants and a subsample of 100 adults with a cognitive impairment diagnosis (ie, dementia, mild cognitive impairment, cognitive deficits or other memory loss) will be recruited from the general population and specialty memory care centres, respectively. To evaluate the construct validity of MyCog Mobile, the healthy control sample will self-administer MyCog Mobile on study-provided smartphones and be administered a battery of gold-standard neuropsychological assessments. We will compare correlations between performance on MyCog Mobile and measures of similar and dissimilar constructs to evaluate convergent and discriminant validity. To assess clinical validity, participants in the clinical sample will self-administer MyCog Mobile on a smartphone and be administered a Mini-Cog screener and these data will be combined with the healthy control sample. We will then apply several supervised model types to determine the best predictors of cognitive impairment within the sample. Area under the receiver operating characteristic curve, accuracy, sensitivity and specificity will be the primary performance metrics for clinical validity. ETHICS AND DISSEMINATION: The Institutional Review Board at Northwestern University (STU00214921) approved this study protocol. Results will be published in peer-reviewed journals and summaries provided to the study's funders.

Association between hemoglobin trajectories and the incidence of dementia in a cohort of females aged 55-79 years.

PURPOSE: To assess the association between pattern changes in hemoglobin levels over time and the incidence of dementia using trajectories in females aged 55-79 years. MATERIALS AND METHODS: We conducted a retrospective cohort study using females of aged 55-79 years from the National Health Insurance Service National Health Screening Cohort in Korea. To identify hemoglobin trajectories over eight years (2002-2009), we performed a three-step approach comprising measures of change, factor analysis, and cluster analysis. Univariate and multivariate Cox proportional hazard models were used to assess the associations between hemoglobin trajectories and the incidence of dementia. RESULTS: We included 20,195 of 235,742 female participants. New dementia (N = 2664) was developed during follow-up period (2010-2015). Five hemoglobin trajectories were identified: high, mid, low, increasing, and decreasing. With high as a reference, the hazard ratios (HRs) for low and decreasing trajectories were significant, 1.28 (95% confidence interval [CI], 1.13-1.45) and 1.21 (95% CI, 1.10-1.34) in univariate models, respectively. However, only the HR for the decreasing trajectory was significant, 1.12 (95% CI, 1.01-1.24) after adjustment for confounders. CONCLUSION: The decreasing trajectory of hemoglobin levels within the normal range was associated with dementia. Even females aged 55-79 years without anemia might be vulnerable to dementia development risk.

Exploring vascular contributions to cognitive impairment and dementia (ENIGMA): protocol for a prospective observational study.

BACKGROUND: Post-stroke cognitive impairment (PSCI) is common. However, the underlying pathophysiology remains largely unknown. Understanding the role of microvascular changes and finding markers that can predict PSCI, could be a first step towards better screening and management of PSCI. Capillary dysfunction is a pathological feature of cerebral small vessel disease and may play a role in the mechanisms underlying PSCI. Extracellular vesicles (EVs) are secreted from cells and may act as disease biomarkers. We aim to investigate the role of capillary dysfunction in PSCI and the associations between EV characteristics and cognitive function one year after acute ischemic stroke (AIS) and transient ischemic attack (TIA). METHODS: The ENIGMA study is a single-centre prospective clinical observational study conducted at Aarhus University Hospital, Denmark. Consecutive patients with AIS and TIA are included and followed for one year with follow-up visits at three and 12 months. An MRI is performed at 24 h and 12 months follow-up. EV characteristics will be characterised from blood samples drawn at 24 h and three months follow-up. Cognitive function is assessed three and 12 months after AIS and TIA using the Repeatable Battery for the Assessment of Neuropsychological Status. DISCUSSION: Using novel imaging and molecular biological techniques the ENIGMA study will provide new knowledge about the vascular contributions to cognitive decline and dementia. TRIAL REGISTRATION: The study is retrospectively registered as an ongoing observational study at ClinicalTrials.gov with the identifier NCT06257823.

Nurses' perception of uncertainty regarding suspected pain in people with dementia: A qualitative descriptive study.

OBJECTIVES: This study aims to qualitatively examine nurses' perception of uncertainty regarding suspected pain in people with dementia (PWD). DESIGN: The study utilized a qualitative descriptive design. PARTICIPANTS: The participants in this study were nurses with a minimum of six months of experience caring for PWD and currently working in a university hospital in Irbid, Jordan. Twenty-five participants were selected using convenience sampling from the selected hospital. RESULTS: Four major themes and 12 subthemes relating to nurses' perceptions of uncertainty regarding suspected pain in PWD emerged. The main themes were (a) the culture-bound nature of uncertainty regarding suspected pain in PWD, (b) dimensions of uncertainty regarding suspected pain in PWD, (c) indicators of uncertainty regarding suspected pain in PWD, and (d) assessment methods of uncertainty to suspected pain in PWD. Moreover, for each major theme, different subthemes were developed. CONCLUSIONS: It is crucial to address factors influencing -nurses' uncertainty regarding suspected pain in PWD to improve pain assessment and management in PWD. Additionally, the study identified five indicators of uncertainty: complicated decision-making, knowledge deficit, bias, intuition, and misconceptions. Effective assessment methods, such as semi-structured interviews and simulated assessments, should be employed to evaluate uncertainty accurately. By addressing these issues and utilizing appropriate assessment approaches, healthcare professionals can enhance pain management for individuals with dementia.

A Web-Based Intervention Based on Acceptance and Commitment Therapy for Family Caregivers of People With Dementia: Mixed Methods Feasibility Study.

BACKGROUND: Acceptance and commitment therapy (ACT), as an empirically based third-wave cognitive behavioral therapy, has shown promise in enhancing well-being and functioning across diverse populations. However, in the context of caregiving, the effect size of available ACT interventions remains at best moderate, sometimes accompanied by high dropout rates, highlighting the need for more effective and feasible intervention designs. OBJECTIVE: The objective of our study was to evaluate the feasibility and acceptability of a fully online ACT program designed for family caregivers of people with dementia. This study aimed to boost psychological flexibility and support caregivers, enabling them to realize and prioritize their own life values alongside their caregiving responsibilities. METHODS: A mixed methods feasibility study using an uncontrolled pretest-posttest design was conducted. This intervention included a 9-week web-based self-help program based on ACT incorporating collaborative goal setting and weekly web-based motivational coaching for family caregivers of people with dementia. This study involved 30 informal caregivers recruited through memory clinics and social media platforms in the Netherlands and received approval from the Medical Ethics Committee of the Maastricht University Medical Center+ (NL77389.068.21/metc21-029). RESULTS: A total of 24 caregivers completed the postintervention assessment, indicating a high adherence rate (24/29, 83%). Caregivers reported positive feedback regarding collaborative goal setting, but some found challenges in implementing new skills due to their own habitual responses or the unpredictable context of dementia caregiving. Personalizing the intervention based on individual value preferences was highlighted as beneficial. CONCLUSIONS: Compared to other web-based self-help ACT interventions for family caregivers, this intervention showed a high adherence and sufficient level of feasibility, which underscores the use of personalization in delivering web-based interventions. Moreover, the potential of this ACT-based intervention for family caregivers of people with dementia was demonstrated, suggesting that further research and a larger-scale controlled trial are warranted to validate its effectiveness. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2022-070499.

Visual Cognitive Assessment Test: Utility of the brief cognitive battery for early screening of cognitive impairment in Chongqing, China.

OBJECTIVES: Early detection of cognitive impairment is essential for timely intervention. Currently, most widely used cognitive screening tests are influenced by language and cultural differences; therefore, there is a need for the development of a language-neutral, visual-based cognitive assessment tool. The Visual Cognitive Assessment Test (VCAT), a 30-point test that assesses memory, executive function, visuospatial function, attention, and language, has demonstrated its utility in a multilingual population. In this study, we evaluated the reliability, validity, and diagnostic performance of the VCAT for screening early cognitive impairment in Chongqing, China METHODS: A total of 134 individuals (49 healthy controls (HCs), 52 with mild cognitive impairment (MCI), and 33 with mild dementia) completed the Mini-Mental State Examination (MMSE), Montreal Cognitive Assessment (MoCA), VCAT, and domain-specific neuropsychological assessments. The diagnostic performances of MMSE, MoCA, and VCAT were evaluated using the area under the curve (AUC), sensitivity, and specificity. Construct validity of the VCAT was assessed with well-established domain-specific cognitive assessments. Reliability was measured using Cronbach's alpha. RESULTS: The VCAT and its subdomains demonstrated both good construct validity and internal consistency (α = 0.577). The performance of VCAT was comparable to that of MoCA and MMSE in differentiating mild dementia from nondemented groups (AUC: 0.940 vs. 0.902 and 0.977, respectively; p = .098 and .053) and in distinguishing cognitive impairment (CI) from HC (AUC: 0.929 vs. 0.899 and 0.891, respectively; p = .239 and .161), adjusted for education level. The optimal score range for VCAT in determining dementia, MCI, and HC was 0-14, 15-19, and 20-30, respectively. CONCLUSION: The VCAT proves to be a reliable screening test for early cognitive impairment within our cohort. Being both language and cultural neutral, the VCAT has the potential to be utilized among a wider population within China.

Anticoagulation Patterns Among Community-Dwelling Older Adults With Atrial Fibrillation.

OBJECTIVES: To assess clinicians' prescribing practices for anticoagulation in older adults with atrial fibrillation or atrial flutter (AF/F) and determine factors common among those without anticoagulation. METHODS: We performed a community-based retrospective cohort study of adults aged 65 years and older with a history of nonvalvular AF/F to determine the rate of oral anticoagulation utilization. We also assessed for associations between anticoagulation use and comorbid conditions and common geriatric syndromes. RESULTS: A total of 3832 patients with a diagnosis of nonvalvular AF/F were included (mean [SD] age, 79.9 [8.4] years), 2693 (70.3%) of whom were receiving anticoagulation (51.7%, a vitamin K antagonist; 48.1%, a direct-acting oral anticoagulant). Patients with higher Elderly Risk Assessment index (ERA) scores, a surrogate for health vulnerability, received anticoagulation less often than patients with lower scores. The percentage of patients with a history of falling was higher among those who did not receive anticoagulation than among those who did (44.4% vs 32.8%; P < .001). Similarly, a diagnosis of dementia was more common in the no-anticoagulation group than the anticoagulation group (18.5% vs 12.7%; P < .001). CONCLUSIONS: A substantial proportion of older adults with AF/F do not receive anticoagulation. Those without anticoagulation had higher risk of health deterioration based on higher ERA scores and had a higher incidence of dementia and fall history. This suggests that the presence of geriatric syndromes may influence the decision to withhold anticoagulation.

Primary caregivers' experiences of caring for people living with dementia in Ghana: a phenomenological study.

BACKGROUND: Dementia is often associated with functional impairments that limit the independence of persons living with dementia (PwD). As such, many PwD often require a higher level of support provided by persons referred to as caregivers. Such caregiving activities tend to strain and stress the caregiver. Nonetheless, Ghana lacks empirical evidence and understanding of the effects of caring for PwD on the lives of primary caregivers. To help narrow this knowledge gap, we explored the perspectives of primary caregivers about the impacts of caring for PwD in Ghana. METHODS: Using a descriptive phenomenological design, we conducted in-depth interviews with primary caregivers in the Ashanti region, Ghana. A semi-structured interview guide was used as the data collection instrument. The data analysis followed Collazi's thematic analysis framework. All coding and categorization were done in NVivo-12. RESULTS: Five themes emerged from the analysis. These themes included (a) sacrifice of personal interests, and time commitments; (b) financial strain and negative impact on job; (c) feelings of stress and burnout; (d) experience of abuse and stigma; and (e) perceived blessing of caregiving. CONCLUSION: The study's findings resonate with existing literature, highlighting the consistent struggles faced by caregivers. Sacrificing personal interests, navigating financial strains, and grappling with stress and burnout emerged as pervasive themes. We conclude that despite the negative impacts of caring for PwD, caregivers perceived their role as associated with blessings, deriving positive meaning and fulfilment from their caregiving journey. This study underscores a need to build more compassionate communities in rural settings of Ghana.

Identification of Risk Factors for Gliptin-associated Bullous Pemphigoid among Diabetic Patients.

Drug-associated bullous pemphigoid has been shown to follow long-term gliptin (dipeptidyl-peptidase 4 inhibitors) intake. This study aimed at identifying risk factors for gliptin-associated bullous pemphigoid among patients with type 2 diabetes. A retrospective study was conducted in a tertiary centre among diabetic patients exposed to gliptins between the years 2008-2021. Data including demographics, comorbidities, medications, and laboratory results were collected using the MDClone platform. Seventy-six patients with type 2 diabetes treated with dipeptidyl-peptidase 4 inhibitors who subsequently developed bullous pemphigoid were compared with a cohort of 8,060 diabetic patients exposed to dipeptidyl-peptidase 4 inhibitors who did not develop bullous pemphigoid. Based on a multivariable analysis adjusted for age and other covariates, Alzheimer's disease and other dementias were significantly more prevalent in patients with bullous pemphigoid (p = 0.0013). Concomitant use of either thiazide or loop diuretics and gliptin therapy was associated with drug-associated bullous pemphigoid (p < 0.0001 for both). While compared with sitagliptin, exposure to linagliptin and vildagliptin were associated with bullous pemphigoid with an odds ratio of 5.68 and 6.61 (p < 0.0001 for both), respectively. These results suggest gliptins should be prescribed with caution to patients with type 2 diabetes with coexisting Alzheimer's and other dementias, or patients receiving long-term use of thiazides and loop diuretics. The use of sitagliptin over linagliptin and vildagliptin should be preferred in these patients.

[Travel time to memory clinics in Bavaria: A geographical analyses within the framework of digiDEM Bayern]. / Räumliche Erreichbarkeit von Gedächtnisambulanzen ­ Eine geographische Analyse im Rahmen von digiDEM Bayern.

BACKGROUND: Memory clinics can contribute significantly to a qualified diagnosis of dementia. Since the accessibility of medical facilities is an important predictor for their utilisation, the aim of this study was to determine the accessibility of memory clinics for persons with dementia in Bavaria. METHODS: We used a Geographic Information System (GIS) to determine travel times to the nearest memory clinic for all Bavarian municipalities based on OpenStreetMap road network data. RESULTS: The majority of the modelled persons with dementia in Bavaria (40%; n = 93,950) live in communities with an average travel time of 20 to 40 minutes to the nearest memory clinic. Almost 7,000 (3%) require more than one hour. Especially persons from rural communities have to travel significantly longer distances than people from urban areas. CONCLUSION: In view of demographic developments, there is an urgent need for memory clinics to be accessible throughout the country for all persons with dementia, regardless of where they live. The systematic development of memory clinics in areas with long travel times or the establishment of mobile diagnostic services could help to improve dementia care.

Equine-assisted services for people living with dementia: a systematic review.

BACKGROUND: Dementia has a significant impact on the social, physical, and psychological wellbeing of people living with dementia, their families and society. Animal-assisted interventions can have positive effects on the health and wellbeing of people living with dementia. Equine-assisted services are animal-assisted non-pharmacological interventions which have improved the health and wellbeing of diverse populations. The impact of participating in equine-assisted services on the health and wellbeing of people with dementia is unclear. A systematic review was conducted to synthesise evidence investigating the effects of participating in equine-assisted services on the health and wellbeing of people living with dementia. DESIGN: Systematic review following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. METHODS: The databases CINAHL, EMBASE, MEDLINE, and Web of Science were searched for any research published prior to 14 June 2023. Peer-reviewed publications in the English language utilizing methods deriving quantitative and/or qualitative data were eligible. Methodological quality of included studies was assessed using the Mixed Methods Appraisal Tool. Findings from studies were synthesised using a deductive approach. RESULTS: Of the 223 articles screened, six met the inclusion criteria: four quantitative and two qualitative studies. The six studies represent four separate equine interventions. Studies were of moderate to strong quality. Participants were people living with dementia (n = 44, mean age range 70-83 years), dementia care partners (n = 5, mean age 58), and equine-assisted services providers (n = 5). Interventions varied in duration, activities conducted, outcomes measured, and measurement tools used. Studies found a favourable impact of participating in equine-assisted services on the neuropsychiatric symptoms and quality of life of people living with dementia. Participating in equine-assisted services improved well-being, functional abilities, social participation, and communication, while also having a positive effect on social, emotional, and behavioural outcomes, and physical health. CONCLUSIONS: The limited but high-quality literature investigating the impact of equine-assisted services among people living with dementia suggests that equine-assisted services can have a positive impact on the health and wellbeing of people living with dementia. Additional robust studies contributing to the evidence base are warranted; such studies can support the development of programs and further elucidate the impact of participation.

Different Splice Isoforms of Peripheral Triggering Receptor Expressed on Myeloid Cells 2 mRNA Expressions are Associated With Cognitive Decline in Mild Dementia Due to Alzheimer's Disease and Reflect Central Neuroinflammation.

Triggering receptor expressed on myeloid cells 2 (TREM2) is upregulated in activated microglia and may be related to cognitive decline in patients with Alzheimer's disease (AD). There is conflicting evidence regarding the association of peripheral TREM2 mRNA expression/soluble TREM2 (the extracellular domain of TREM2) with cognitive function/neuroinflammation in patients with AD. Herein, we studied the TREM2 and TREM2alt mRNA expression and their association with the cognitive performance in subjects with mild dementia due to AD and healthy controls. In a subgroup of patients with AD, magnetic resonance spectroscopy was used to measure the myo-inositol level in the posterior cingulate cortex, a surrogate marker for neuroinflammation. The results showed that increased TREM2 and TREM2alt mRNA expression is associated with AD pathogenesis at the mild dementia stage, thereby serving as a potential biomarker for early symptomatic stage of AD. TREM2 may exert protective effects on both cognition and central neuroinflammation.

Active involvement in scientific research of persons living with dementia and long-term care users: a systematic review of existing methods with a specific focus on good practices, facilitators and barriers of involvement.

BACKGROUND: Active involvement of persons living with dementia (PLWD) and long-term care (LTC) users in research is essential but less developed compared to other patient groups. However, their involvement in research is not only important but also feasible. This study aims to provide an overview of methods, facilitators, and barriers for involving PLWD and LTC users in scientific research. METHODS: A systematic literature search across 12 databases in December 2020 identified studies involving PLWD, LTC users, or their carers beyond research subjects and describing methods or models for involvement. Qualitative descriptions of involvement methods underwent a risk of bias assessment using the Critical Appraisal Skills Programme (CASP) Qualitative Checklist 2018. A data collection sheet in Microsoft Excel and thematic analysis were used to synthesize the results. RESULTS: The eighteen included studies delineated five core involvement methods spanning all research phases: advisory groups, formal and informal research team meetings, action groups, workshops, and co-conducting interviews. Additionally, two co-research models with PLWD and carers were found, while only two studies detailed LTC user involvement methods. Four distinct involvement roles were identified: consulting and advisory roles, co-analysts, co-researchers, and partners. The review also addressed barriers, facilitators, and good practices in the preparation, execution, and translation phases of research, emphasizing the importance of diversity, bias reduction, and resource allocation. Trust-building, clear roles, ongoing training, and inclusive support were highlighted. CONCLUSIONS: Planning enough time for active involvement is important to ensure that researchers have time to build a trusting relationship and meet personal needs and preferences of PLWD, LTC users and carers. Researchers are advised not to presume the meaning of burden and to avoid a deficit perspective. A flexible or emergent design could aid involved persons' ownership of the research process. TRIAL REGISTRATION: Prospero 2021: CRD42021253736.