Dialogues in Neurodegenerative Disorders: Care, communication and biomedical challenges

Care, communication and biomedical challenges Abstract book Dialogues in Neurodegenerative Disorders: Care, communication and biomedical challenges Ljubljana, Slovenia Care, communication and biomedical challenges frontiersin.org 02 June 6–7, 2024, Ljubljana, Slovenia The abstracts in this collection have not been subject to any Frontiers peer review or checks, and are not endorsed by Frontiers. They are made available through the Frontiers publishing platform as a service to conference organizers and presenters. The copyright in the individual abstracts is owned by the author of each abstract or their employer unless otherwise stated. Each abstract, as well as the collection of abstracts, are published under a Creative Commons CC-BY 4.0 (attribution) licence (creativecommons.org/licenses/by/4.0/ ) and may thus be reproduced, translated, adapted and be the subject of derivative works provided the authors and Frontiers are attributed. For Frontiers’ terms and conditions please see: frontiersin.org/legal/terms-and-conditions. ISBN 9782832551257 DOI 10.3389/978-2-8325-5125-7 Citation Nimac, J., Galof, K., Čerček, U., Motaln, H., Žagar, T., Polanec, K., Drevenšek, G., Rogelj, B. (2024) Dialogues in Neurodegenerative Disorders:Care, communication and biomedical challenges Ljubljana, Slovenia Care, communication and biomedical challenges frontiersin.org 03 Table of Contents 15 Welcome to Dialogues in Neurodegenerative Disorders:Care, communication and biomedical challenges 21 Neurogenerative diseases yesterday, today and tomorrow Zvezdan Pirtošek 23 Sex differences in alzheimer’s disease: postmortem studies Dick F. Swaab 27 nEUROcare in Sri Lanka: A new frontier in neurodegenerative disease education Martin Persson 31 The global impact of dementia: equal access to treatment, care and support Wendy Weidner 35 Is prevention of neurodegenerative diseases realistic? Albert C. Ludolph Innovations in neurodegenerative disease research 40 Microbiota and neurodegenerative diseases Vladimira Vuletić 42 Gene-targeted therapy in amyotrophic lateral sclerosis Blaž Koritnik Care, communication and biomedical challenges frontiersin.org 04 47 Blood brain barrier integrity in ALS – a CSF study in more than 1000 patients Veronika Klose; Sarah Jesse; Jan Lewerenz; Jan Kassubek; Johannes Dorst; Angela Rosenbohm; Gabiele Nagel; Deborah Wernecke; Francesco Roselli; Hayrettin Tumani; Albert C. Ludolph 49 The holy grail of cognitive training in the treatment of cognitively impaired patients Nataša Klepac 52 Analysis of involuntary movements in patients with motor neuron disease Katarina Vogelnik Žakelj; Blaž Koritnik; Lea Leonardis; Leja Dolenc Grošelj; Tabish A Saifee; Janez Zidar; Maja Kojović 54 R47H TREM2 variant among serbian alzheimer’s disease patients Nikola Andrejić; Milica Pešić; Ana Marjanović; Marija Branković; Milena Janković; Gorana Mandić; Ivana Novaković; Tanja Stojković; Elka Stefanova 56 The role of cognitive reserve in cognitive functioning of patients with als: a systematic review Ana Kuder, Lea Leonardis Clinical practices and care 58 Attitudes towards aging and its relationship with quality of life among institutionalized older people Sudath Warnakulasuriya; U.G.N. Priyadarshani; I.M.P.S. Ilankoon; S.S.P. Warnakulasuriya; C.S.E. Goonewardene 61 From ancient roots to modern challenges: tracing the history and evolution of healthcare in sri lanka H.M.P. Herath Care, communication and biomedical challenges frontiersin.org 05 66 Social cognition in patients with ALS Sara Kadenšek; Vita Štukovnik; Blaž Koritnik 68 Communication, voice, and swallowing disorders in people with neurodegenerative disorders Andres Köster 70 Rehabilitation options for people with dementia after hip fracture Anja Grušovnik Mušič, Alenka Omerzel 72 A health promotion intervention to promote positive ageing among a group of older adults in a rural environment Kalpani Abhayasinghe; Gayani Munasinghe; Tharushi Gomas; Shaini Rashmika; Duminda Guruge Family relations, supportive environment, and social networks 75 Interprofessional cooperation, the key to safe and quality patient treatment Monika Ažman 79 Integrating mindfulness in occupational therapy: enhancing well-being and engagement for people with dementia Katarina Galof 84 Dialogues in neurodegenerative disorders: development of a community care process model Katarina Galof 89 Primary prevention and interventions to reduce cognitive decline Lucia Bergamini, Andrea Fabbo Care, communication and biomedical challenges frontiersin.org 06 91 A short review of research on psychological predictors and outcomes of decent work among nurses Katarina Kocbek; Ana Arzenšek 97 Challenges in caring for people with neurodegenerative disorders (NDDs); A narrative on Asian perspectives Dinithi Vidanage, Chandima Kumara Walpita Gamage, Prasanna Herath, Wasana Sudusinghe 101 The needs of caregivers of people with dementia Alenka Oven, Zorana Sicherl Innovations in neurodegenerative disease research – Brain banking and biomarkers 105 The role of biomarkers in the diagnosis of Alzheimer’s disease continuum Elka Stefanova 107 TDP-43 splicing regulation as a driver of pathology and potential diagnostic indication Emanuele Buratti 109 Phosphorylated RNA-binding proteins in neurodegenerative diseases Helena Motaln; Urša Čerček; Anand Goswami; Boris Rogelj 111 Expression of membrane proteins in altered in C9orf72 mutation-associated ALS and FTD Urša Čerček; Jerneja Nimac; Vera Župunski; Boris Rogelj 116 The protein interactome of TDP-43 in ALS: A mystery still waiting to be solved Jerneja Nimac; Sonja Prpar Mihevc; Julija Mazej; Helena Motaln; Vera Župunski; Boris Rogelj Care, communication and biomedical challenges frontiersin.org 07 Comprehensive patient care, from timely diagnosis to care planning 120 Establishing a European knowledge hub for social innovations: The case of MRRC UL SI-AHA Vlado Dimovski; Anamarija Kejžar; Jakob Sajovic; Simon Colnar; Gorazd Drevenšek 122 Multidisciplinary nature of management of patients with neurodegenerative disorders Renuka Dasanayaka 124 The Impact of Mindfulness Interventions on Parkinson’s Disease in Asia: A Narrative Review CKW Gamage, WS Sudusinghe, D Vidanage, HMP Herath 128 Disorders in sensory processing that affect memory storage mechanisms Myrto Patagia Bakaraki, Albana Lioumi 137 AI applied to neurodegenerative diseases: opportunities and challenges Špela Glišović Krivec; David Krivec; Tomaž Hitij; Luka Hočevar; Martina Drevenšek, Jakob Sajovic, Gorazd Drevenšek 141 Re-framing societal perception of neurodegenerative diseases for comfortable ageing Špela Glišović Krivec, David Krivec, Tomaž Hitij, Luka Hočevar, Martina Drevenšek, Jakob Sajovic, Gorazd Drevenšek Community health and care services 145 A hidden agenda: dementia as a risk factor for interpersonal violence Nena Kopčavar Guček Care, communication and biomedical challenges frontiersin.org 08 149 Student nurses’ knowledge and attitudes towards dementia care: A systematic review Maliga Wijesiri, Thilini Weerasingha, Nimantha Karunathilaka, Sarath Rathnayake 153 Perceived level of knowledge related to the neurodegenerative diseases and care among Sri Lankan healthcare professionals, educators and undergraduates Pramudika Kariyawasa, Nirmala Rathnayake, Bimba Wickramarachchi, Thamudi Sundarapperuma, Kumari De Silva 155 Sports in dementia Anamarija Kejžar Novelties in clinical assessment, evaluation, treatment 157 Late-Life depression: Prevention, assessment, treatment and care Polona Rus Prelog 161 Advanced stage Parkinson’s disease: Innovations in management and care Zvezdan Pirtošek 163 In vivo imaging of mouse brain damage and repair reveals their temporal dynamics in ischemia injury Srećko Gajović 165 Metabolic brain imaging and network analysis in neurodegenerative dementias Matej Perovnik 169 Exploring clinically meaningful advanced therapies in neurodegenerative diseases Milica G. Kramberger Care, communication and biomedical challenges frontiersin.org 09 171 Metabolic imaging and connectivity in neurodegenerative parkinsonisms Tomaž Rus Psychology in care for persons living with neurodegenerative disorders 173 North Macedonia interprofessional dementia care (NOMAD)-Personalized care plans for people with dementia and caregiver psychoeducation Gabriela Novotni, Marija Taneska, Antoni Novotni, Julia Fischer, Svetlana Iloski, Andrea Ivanovska, Vesna Dimitrova, Ljubisha Novotni, Miloš Milutinović, Boban Joksimoski, Ivan Chorbev, Shpresa Hasani, Vildan Dogan, Timo Grimmer, Alexander Kurz 177 Exploring the foundations: Theoretical constructs of person-centered care Anna Edvinsson 180 Navigating wellness together: The role of acceptance commitment therapy in healthcare Emma Edberg Matei, Martin Persson 184 Implementing the montessori approach in a nursing home: A case study of three months ofdementia care Polona Campolunghi Pegan 186 Development of the Sinhala version of dementia knowledge assessment scale: A validation study Sarath Rathnayake, Thilanka Jagoda Digital health 188 Data Spaces and Opportunities for Healthcare Jure Jeraj, Flavio Fuart, Boštjan Gomilšek Care, communication and biomedical challenges frontiersin.org 16 University of Ljubljana Spominčica - Alzheimer Slovenia nEUROcare and in collaboration to Alzheimer Europe and Alzheimer Disease International LIST OF ORGANIZERS Care, communication and biomedical challenges frontiersin.org 17 Welcome to Dialogues in Neurodegenerative Disorders Care, communication and biomedical challenges Dear colleagues, dear friends, dear neuroscience enthusiasts! Welcome to the abstract book of the conference Dialogues on Neurodegenerative Disorders. This conference was dedicated to the advancement of care and research in the field of neurodegenerative disorders (NDDs). Our ambition was to bring together distinguished professionals to explore new approaches and progress, uniting the minds from neuroscience, neurology, healthcare, psychology, new IT applications and family perspectives. Conference attendees collaborated with leading experts, shared groundbreaking knowledge and contributed to a community committed to improve the lives of those affected by NDD. We hope that the rich interplay of perspectives and insights will lead to better understanding, improved care and ultimately solutions to these challenges. We envision that engaging with this book of abstracts will open new horizons in NDD care and research. The main goal of the conference was to bridge the gap between scientific discoveries, medical practises, psychological approaches and social care for people with NDD and their families. In addition, our conference provided an opportunity for people affected by NDD to share their life stories and experiences in order to create a link between the academic and medical community and the people and their family members who are affected by these diseases on a daily basis. In the following chapters, readers will be introduced to the latest research on NDDs, innovative solutions, IT applications for the problems caused by NDDs, and best practises in care. We believe that by sharing interdisciplinary knowledge between many professions and the experiences of people with NDDs and their caregivers, we will help to improve the quality of life of people with NDDs. May this book provide valuable insights and inspiration. Care, communication and biomedical challenges frontiersin.org 18 ORGANIZING COMMITTEE Gorazd Drevenšek Katarina Galof David Krivec Anamarija Kejžar Štefanija Zlobec Martina Drevenšek Jakob Sajovic Jerneja Nimac Matej Kovačič Tanja Zdolšek Draksler SCIENTIFIC COMMITTEE Zvezdan Pirtošek Martin Persson Triin Jagomägi Steve Smith Boris Rogelj Gnanaselvam Kisokanth Sudath Shirely Pathmasiri Warnakulasuriya Pramudika Nirmani Kariyawasam BRGTK Weerasingha H. M. P. Herath Simon Colnar Vlado Dimovski Elly Anastasiades Care, communication and biomedical challenges frontiersin.org 19 Introduction In recent years, the field of neurodegenerative disorders has witnessed unprecedented developments, highlighting both the urgency and the potential in addressing these complex, debilitating diseases. Neurodegenerative disorders, including Alzheimer’s, Parkinson’s, Huntington’s, and Amyotrophic Lateral Sclerosis, pose significant challenges not only in terms of biological understanding and therapeutic interventions but also in patient care, caregiver support, and public health policy. These diseases affect millions worldwide, disrupting lives and communities and placing a heavy burden on healthcare systems globally. This abstract book, Dialogues in Neurodegenerative Disorders Care: Communication and Biomedical Challenges, compiles contributions that reflect a multidisciplinary approach to understanding and tackling neurodegenerative disorders. The gathered abstracts represent a convergence of clinical research, public health initiatives, technological innovations, and patient-centered care practices aimed at improving the quality of life for those affected by neurodegenerative conditions. The collection aims to serve as a platform for dialogue, bringing together researchers, healthcare professionals, policymakers, and advocates to share insights, foster collaboration, and inspire action. This compendium underscores the importance of interprofessional cooperation, the role of technological advances in diagnostics and care, and the necessity of societal and cultural sensitivity in managing these diseases. By fostering a community of shared knowledge and commitment, we hope this compilation will contribute meaningfully to the ongoing efforts to advance neurodegenerative disorder care. Care, communication and biomedical challenges frontiersin.org 20 On behalf of the editorial board, we extend our gratitude to all contributors and participants. Your dedication to this critical field of research is invaluable, and we look forward to the continued progress that these dialogues will inspire. Editorial board Jerneja Nimac, editor in chief Katarina Galof Urša Čerček Helena Motaln Tomaž Žagar Klementina Polanec Gorazd Drevenšek Boris Rogelj Care, communication and biomedical challenges 21 frontiersin.org Neurogenerative diseases yesterday, today and tomorrow Author Zvezdan Pirtošek – Department of Neurology, University Medical Center Ljubljana, Ljubljana, Slovenia; Department of Neurology, Faculty of Medicine, University of Ljubljana, Slovenia Citation Pirtošek, Z. Neurogenerative diseases yesterday, today and tomorrow. Background Neurodegenerative disorders, which encompass conditions such as Alzheimer’s disease, Parkinson’s disease, Huntington’s disease and amyotrophic lateral sclerosis, have emerged as significant health challenges in recent centuries, likely coinciding with increased human lifespan and evolving environmental factors. These disorders result from the progressive degeneration of the structure and function of the nervous system, leading to debilitating effects on cognition, movement, and overall quality of life. Content Historically, neurodegenerative diseases were rare, largely due to shorter human lifespans which limited the manifestation of such late-onset conditions. Early medical literature from the 19th century began to document cases of these disorders as lifespans extended and diagnostic capabilities improved. Alzheimer’s disease, for instance, was first described by Dr. Alois Alzheimer in 1906, highlighting the pathological changes in the brain that are now recognized as hallmarks of the disease. 22 Care, communication and biomedical challenges frontiersin.org Today, neurodegenerative disorders are a major focus of medical research and public health. Advances in neuroimaging, molecular biology, and genetics have provided profound insights into the etiology and progression of these conditions. For example, the identification of amyloid-beta plaques and tau tangles in Alzheimer’s disease, alpha-synuclein aggregates in Parkinson’s disease, and TDP-43 inclusions in ALS have revolutionized our understanding of these diseases at a molecular level. Moreover, genetic studies have uncovered numerous mutations and risk factors, such as the APOE ε4 allele in Alzheimer’s disease, which have been pivotal in understanding disease susceptibility and pathogenesis. Discussion Despite these advances, effective therapeutic interventions remain limited. Current treatments primarily offer symptomatic relief rather than curative solutions. Pharmacological approaches, alongside non-pharmacological interventions like physical therapy and cognitive rehabilitation, are employed to manage disease symptoms and improve patient quality of life. Research into disease-modifying therapies, including monoclonal antibodies targeting amyloid-beta and tau proteins, is ongoing and represents a promising area of future therapeutics. Conclusions Looking forward, the field of neurodegenerative research is poised to advance significantly through the integration of emerging technologies and interdisciplinary approaches. Precision medicine, leveraging genetic and biomarker data, aims to tailor treatments to individual patients, enhancing efficacy and reducing side effects. Additionally, advancements in stem cell research and gene therapy hold potential for regenerative treatments that could halt or even reverse neurodegenerative processes. Artificial intelligence (AI) and machine learning are expected to revolutionize early diagnosis and personalized treatment plans by analyzing vast datasets to identify patterns and predict disease progression. Furthermore, the increasing awareness and emphasis on lifestyle and environmental factors opens new avenues for prevention strategies, potentially mitigating the onset and progression of these debilitating disorders. Care, communication and biomedical challenges 23 frontiersin.org Sex differences in alzheimer’s disease: postmortem studies Author Dick F. Swaab – Netherlands Institute for Neuroscience, Netherlands Citation Swaab, D.F. Sex differences in alzheimer’s disease: postmortem studies. Background Women are more vulnerable to Alzheimer’s disease (AD) than men. We investigated, therefore, whether and at what age the typical neuropathological AD hallmarks, that is, β-amyloid (Aβ) and hyperphosphorylated-Tau (p-Tau) show sex differences; and whether such sex differences may occur already in cognitively intact elderly individuals. We first analyzed the entire post-mortem brain collection of all non-demented ‘controls’ and AD donors from our Netherlands Brain Bank (NBB, 245 men and 403 women), for the presence of sex differences in neuropathological AD hallmarks. Subsequently, we quantitatively studied possible sex differences in Aβ, Aβ42 and p-Tau in the entorhinal cortex of well-matched female (n = 31) and male (n = 21) clinically cognitively intact elderly individuals. We performed this study in the entorhinal cortex (EC), since this is one of the earliest structures affected in AD. Content In the NBB material, women had significantly higher Braak stages for p-Taustained tangles and amyloid scores than men, but only after 80 years of age. In the EC of cognitively intact elderly, women showed higher levels of p-Tau, but not Aβ or Aβ42 than men, and a significant interaction of sex with age was found only for p-Tau but not for Aβ or Aβ42. 24 Care, communication and biomedical challenges frontiersin.org Enhanced p-Tau in the entorhinal cortex may thus play a major role in the higher vulnerability to AD of women compared to men (Hu et al., 2021). Subsequently we identified in the cohort of cognitively intact elderly different molecular changes in the EC in relation to age. Changes in 12 characteristic molecules were determined in relation to age by quantitative immunohistochemistry or in situ hybridization in the EC. They were arbitrarily grouped into sex steroid-related molecules, markers of neuronal activity, neurotransmitter-related molecules, and cholinergic activity-related molecules. The changes in molecules indicated increasing local estrogen production and neuronal activity accompanied by a higher and faster p-Tau accumulation in women’s EC in relation to age, versus a mainly stable local estrogenic/androgenic and neuronal activity in men’s EC. The local estrogen system and neuronal activity was activated with age only in elderly women with intact cognition. Men and women seem to have different molecular strategies to retain cognition with aging (Chen et al., 2003). Some individuals show a discrepancy between cognition and the amount of typical neuropathological for Alzheimer’s disease (AD). The phenomenon of the presence of large numbers of plaques and tangles combined with intact cognition is known as ‘resilience’ to AD. To obtain an unbiased understanding of the molecular changes underlying resilience, we investigated global changes in gene expression in the superior frontal gyrus of a cohort of cognitively and pathologically well-defined late stage AD patients, resilient individuals and age-matched controls (n = 11-12 per group). 897 genes were significantly different between AD and control, 1121 between resilient and control and 6 between resilient and AD. Gene set enrichment analysis (GSEA) revealed that the expression of metallothionein (MT), that is binding heavy metals and of genes related to mitochondrial processes was higher in the resilient donors. When looking at sex-specific gene expression changes between resilient and AD donors, there were 72 differentially expressed genes (DEGs) between the female resilient and female AD donors and 32 between the male resilient and male AD donors. DEGs of female resilient donors were related to Care, communication and biomedical challenges 25 frontiersin.org mitochondrial processes, metallothionein and interferon signaling, while the DEGs of males did not belong to specific pathways. Furthermore, when using gene sets enriched analysis (GSEA) on the complete dataset including sex chromosomes, the results were similar as when combining both sexes as the majority of processes were either higher expressed in both sexes, such as gene sets related to mitochondria, or more highly expressed in both sexes in AD, like the TYROBP pathway. This suggests that on gene-set level mitochondrial genes were more highly expressed in both sexes, although these processes might be more active in female resilient donors than in male. Likewise, metallothionein (MT-I/II) protein levels and expression of genesets related to MT were only significantly higher in females. Interestingly, there were some gene-sets that were more highly expressed in either male or female resilient donors. These included gene sets related to translation, autophagy, and heats shock proteins (heat shock factor 1 activation and cellular response to heat stress) which were more highly expressed in male resilient subjects compared to male AD donors and in female AD compared to male resilient donors. Conversely, processes related to interferon signaling were more highly expressed in the female resilient donors but not in the male donors. Conclusions Concluding, from postmortem brain studies we start to get insights in the mechanisms behind the sex differences the development of AD, both in cognitively intact elderly and in individuals that show resilience to the AD process. The increased activity in females may for a period allow still normal cognition, but seems also to be the beginning of the end, i.e. of the process of dementing. 32 Care, communication and biomedical challenges frontiersin.org Content The focus addresses several of the most urgent issues in dementia care, highlighting key global challenges, including dementia’s societal impact, high costs of care, persistent stigma, gaps in diagnosis and post-diagnostic support, and barriers to medication access. Additionally, the Global Action Plan, ADI’s role, and key recommendations to improve dementia care worldwide are reviewed. Dementia affects a substantial number of people worldwide, with a new case diagnosed every three seconds, leading to an unprecedented increase in prevalence. In 2019, approximately 55 million people were living with dementia, a number projected to reach 78 million by 2030 and 139 million by 2050. This alarming surge underscores the need for immediate, coordinated action. Financially, the global economic burden of dementia is overwhelming, estimated at over USD $1.3 trillion in 2019. This cost is expected to nearly double, reaching USD $2.8 trillion by 2030, as more individuals require complex, long-term care. These figures emphasize the immense economic strain dementia places on families, communities, and healthcare systems, further reinforcing the need for comprehensive public health strategies. Stigma and diagnosis challenges also persist. Stigma negatively impacts diagnosis rates, treatment, and quality of life for those affected. Misconceptions about dementia are widespread, with the 2019 World Alzheimer Report, “Attitudes to dementia,” showing that two-thirds of the population mistakenly believe dementia is a natural part of aging. Additionally, 62% of healthcare practitioners view dementia as a normal part of ageing, leading to delays in diagnosis and inadequate support. In response, ADI advocates for awareness campaigns, including World Alzheimer’s Month, to dismantle misconceptions and promote inclusive care. A significant gap remains in formal diagnosis, as ADI estimates that 75% of people with dementia worldwide have not been formally diagnosed, translating to around 41 million undiagnosed cases. Long wait times are common, and essential diagnostic tools, such as PET scanners, are limited Care, communication and biomedical challenges 33 frontiersin.org in many areas. A survey across 14 countries indicated that timely, accurate diagnosis remains a substantial hurdle, particularly in lowand middleincome countries (LMICs) where resources are scarce. The 2022 World Alzheimer Report, “Life After Diagnosis: Navigating Treatment, Care, and Support,” highlights that 85% of people with dementia lack post-diagnostic support, often due to limited awareness of available resources. Access to medication also faces significant challenges. Global disparities limit effective dementia treatment, as no anti-dementia medications are currently included on the WHO Essential Medicines List (EML). In 2022, ADI, supported by colleagues from our Medical and Scientific Advisory Panel (MSAP) from Newcastle University and the London School of Economics and Political Science (LSE) applied to have donepezil included on the EML. As part of their evidence, they conducted a survey that found that although 85% of respondents indicated donepezil was available in their country, only 23% had reliable access, and it was entirely unavailable in some countries, such as Ethiopia and Uganda. The survey also noted that healthcare providers often prescribe antipsychotics as substitutes, despite potential side effects. An expert essay in the 2022 World Alzheimer Report underscores that, with appropriate oversight, these drugs offer significant benefits, and failing to ensure their accessibility is a missed opportunity for essential support. The WHO’s Global Action Plan on the Public Health Response to Dementia 2017-2025 recognizes the urgent need for action and outlines strategies for improving dementia care, reducing stigma, and advancing research. ADI plays a key role in achieving these goals, advocating for the development of national dementia strategies and promoting awareness across sectors. Additionally, ADI is taking part in the AD-RIDDLE project, supported by the EU Innovative Health Initiative and UK Research and Innovation, seeks to create a modular toolbox platform to improve early detection and treatment of Alzheimer’s disease. By addressing health system practices and focusing on stages from risk to early symptoms, AD-RIDDLE aims to address challenges in the management of Alzheimer’s disease, speeding up patient access to healthcare providers and precision risk reduction and/or precision medicine. 34 Care, communication and biomedical challenges frontiersin.org Finally, a review of key findings of the 2022 World Alzheimer Report provides a focus on how to improve post-diagnostic treatment and care worldwide, with several key recommendations highlighted. Governments are encouraged to prioritize National Dementia Plans, establishing and expanding structured care policies. Care models should be personcentered and culturally inclusive, focusing on individualized, culturally sensitive care. Strengthening support for caregivers is essential to help alleviate their emotional and financial burdens. Combatting stigma through public campaigns and educational initiatives can foster greater community understanding and inclusivity. Investment in prevention and research is crucial, particularly for cost-effective interventions and preventive strategies. Finally, further trials of cost-effective and evidenced-based psychosocial interventions are needed for effective dementia management, ensuring timely and appropriate care for those affected. Conclusion/Call to Action In conclusion, WHO member states are urged to call for an extension of the Global Action Plan on Dementia to 2035, aligned with Alzheimer’s Disease International’s vision of “prevention, care, and inclusion today, and cure tomorrow.” Such a commitment would foster national plans that promote coordinated dementia care, alleviating the personal, economic, and social burdens associated with dementia and promoting research into better treatment and an eventual cure. Care, communication and biomedical challenges 35 frontiersin.org Is prevention of neurodegenerative diseases realistic? Author Albert C. Ludolph – Department of Neurology, University of Ulm, Germany; German Center for Neurodegenerative Diseases (DZNE) Ulm, Ulm, Germany Citation Ludolph, A.C. Is prevention of neurodegenerative diseases realistic? Background The financial and social burden of neurodegenerative diseases is increasing (Livingstone et al., 2020). The demographic change and its impact on the number of dementia patients world-wide is the major factor, but also other neurodegenerative diseases such as Parkinson´s disease (PD), atypical parkinsonian syndromes such as MSA and PSP and motor neuron diseases play a role. This is particularly true for parts of the world where currently a rapid demographic change takes place. 1. What is prevention? According to the WHO, primary and secondary prevention are distinguished. “Disease prevention, understood as specific, population-based interventions for primary and secondary (early detection) prevention aiming to minimize the burden of diseases and associated risk factors (WHO 2024). Accordingly, primary preventionaims to prevent the manifestation of a disease or injury. This is done by preventing the impact of social and economic determinants, including the provision of information. This information could deal with nutrition, hygiene, immunization and vaccination 36 Care, communication and biomedical challenges frontiersin.org and the avoidance of exposures to hazards that cause disease or injury, or the alteration of unhealthy or unsafe behaviors. Examples for primary prevention include (WHO 2024): • legislation to ban or control the use of hazardous products or to encourage safe and healthy practices (for example use of seatbelts), • education about healthy and safe habits (for example nutrition, exercising regularly, not smoking, reduction of alcohol intake), • immunization against infectious diseases, • prevention by pharmacological interventions Secondary prevention may deal with early detection of a disease or its risk factors when this improves the chances for positive health outcomes (this comprises activities such as evidence-based screening programs for early detection of diseases) (WHO 2024). 2. The preclinical period in neurodegenerative diseases Is primary and secondary prevention of neurodegenerative diseases possible? In the late 20th century Prof. Heiko Braak performed a longitudinal neuroanatomical assessment of the major neurodegenerative diseases, PD and Alzheimer´s disease (AD) (Braak § Del Tredici 2009, 2015). He discovered that the formal pathogenesis of these diseases followed stereotyped anatomical rules, defined the human-specific aspects of the diseases, and most importantly, his findings clearly showed that a preclinical period of years to decades precedes the clinical disease. These findings are the major argument that an attempt to prevent neurodegeneration is theoretically doable – if this preclinical period is used to predict and finally prevent it. Care, communication and biomedical challenges 37 frontiersin.org 3. Genetic diseases The principal proof of concept of prevention of neurodegeneration is easier to perform in familial diseases in which a defined cause, such as a disease-causing mutation exists. If this cause of the disease is present and if it leads to disease with certainty, then preventive measures can be probed. Consequently, the proof of concept has been done in genetic diseases, the most impressive was the genetically defined motor neuron disease spinal muscular atrophy (SMA), by using gene replacement therapies and antisense nucleotides to influence gene expression (Wurster et al., 2018). Also, in a subform of the motor neuron disease amyotrophic lateral sclerosis (ALS) - caused by SOD mutations – early intervention with ASOs leads to a major decrease of protein expression and therefore opens the path to disease prevention (Miller et al., 2022). Currently, the modification of Tau expression is probed to influence the phenotype of Alzheimer´s disease (Mummery et al., 2023). 4. Sporadic diseases Prevention of sporadic diseases is a major challenge since the diagnosis cannot be assured preclinically. It has been shown in two large epidemiological studies that vagotomy (previously done for the treatment of peptic ulcers) reduces the risk of Parkinson´s disease (Svensson et al., 2015; Liu et el., 2017) – consistent with Braaks results that an established marker of the disease invades critical brain regions via the vagus nerve (Braak et al., 2009). This result may serve as a proof of principle that prevention is also possible also in sporadic diseases once the preclinical period is defined The epidemiology of dementias is changing. Whereas in the high-incomecountries the incidence of dementias seems to decrease, the opposite is true for middleand low-income countries (Livingstone et al., 2020). The latter is due to the changing demography and the absence of changes in life style associated with risk factors. This decrease of risk factors, however can be observed in the high-income countries; consequently, the incidence of dementias seems to decrease. The Lancet Dementia Commission (Livingston 38 Care, communication and biomedical challenges frontiersin.org et al., 2020) identified a number of risk factors which could be reduced to influence the number of patients suffering from dementias. In young age childhood education, in midlife alcoholism, increased blood pressure, traumatic brain injury, obesity, hearing impairment, in the population older than 65 years social isolation, depression, smoking, physical inactivity and diabetes are risk factors which could be influenced to reduce the burden of disease. Therefore, the commission recommended as individual preventive measures the treatment of blood pressure (< 130 mmHg systolic), to encourage the use of hearing aids, to discourage alcohol consumption, to prevent head trauma, to stop smoking regardless of age, reduce obesity and thereby reduce the risk of diabetes and to sustain mid-life and possibly late-life physical activity (Livingston et al., 2020). In old age, prevention should focus on depression, physical activity and social isolation. Obviously, these recommendations should influence health politics. Conclusion Although it may sound futuristic, prevention of neurodegenerative diseases is already done, in particular in high-income countries. Its anatomical basis was Braaks discovery that a preclinical period exists in at least Parkinson´s and Alzheimer´s disease. Recent epidemiological studies in both high-, middleand low-income countries clearly indicate that prevention is possible. However, many of the preventive measures are associated with economical factors, others are related to social and psychiatric factors (education, depression, social isolation in old age) and others are associated with life style (diabetes, alcoholism, brain trauma). Only a few such as treatment of hearing loss are acute straight-forward medical interventions, most others require political and individual foresight. Care, communication and biomedical challenges 39 frontiersin.org References Braak, H., and Del Tredici, K. (2009). Neuroanatomy and Pathology of Sporadic Parkinson´s disease. Adv. Anat. Embryol. Cell Biol. 201, 1–119. doi: 10.1007/s00401-008-0406-y Braak, H., and Del Tredici, K. (2015). Neuroanatomy and Pathology of Sporadic Alzheimer´s disease, Adv. Anat. Embryol. Cell Biol. 215, 1-163. doi: 10.1007/978-3-319-12679-1_1 Liu B., Fang, F., Pedersen, N.L., et al. (2017). Vagotomy and Parkinson disease – A Swedish register-based cohort study. Neurology 88, 1996-2002. doi: 10.1212/WNL.0000000000003961 Livingston, G., Huntley, J., Sommerlad, A., et al. (2020). Dementia prevention, intervention, and care: 2020 report of the Lancet commission. Lancet 396, 413-446. doi: 10.1016/S0140-6736(20)30367-6 Miller, T.M., Cudkowicz, M.E., Genge, A., et al. (2022). Trial of antisense oligonucleotide tofersen for SOD1 ALS. N Engl J Med 387, 1099-1110. doi: 10.1056/NEJMoa2204705 Mummery, C.J., Börjesson-Hanson, A., Blackburn, D.J., et al. (2023). Tautargeting antisense oligonucleotide MAPTRx in mild Alzheimer´s disease: a phase 1b randomized, placebo-controlled trial. Nat Med 29, 1437-1447. doi: 10.1038/s41591-023-02326-3 Svensson, E., Horvath-Puho, E., Thomsen, R.W., et al. (2015). Vagotomy and subsequent risk of Parkinson´s disease. Ann Neurol 78, 522-529. doi: 10.1002/ana.24448 Wurster, C., and Ludolph, A.C. (2018). Antisense oligonucleotides in neurological disorders. Ther Adv Neurol Disord 11, 1756286418776932. doi: 10.1177/1756286418776932 40 Care, communication and biomedical challenges frontiersin.org Innovations in neurodegenerative disease research Microbiota and neurodegenerative diseases Author Vladimira Vuletić – Clinical Hospital Center Rijeka; Medical faculty University of Rijeka, Rijeka Citation Vuletić, V. Microbiota and neurodegenerative diseases. Gut microbiota is producing all sorts of protective compounds. The main functions are: nutrients and metabolites absorption and synthesis, protection against pathogens, regulation of host immunity and regulation integrity of the intestinal epithelium. Progressive loss of neurons, neuronal damage and death in neurodegenerative diseases (NDD) are common cause impairment in cognitive and physical function, significant disability and a decline in the quality of life of patients. The role of the “gut-brain axis” and microbiota is the subject of the recent investigating of the pathogenic mechanism of many neurodegenerative diseases like Parkinson’s disease (PD), Alzheimer’s disease (AD), multiple sclerosis (MS), amyotrophic lateral sclerosis (ALS), etc. Findings of altered gut microbiota composition in people with neurodegenerative diseases are very important evidences connecting gut microbiota dysbiosis to neurodegenerative diseases. Some NDD (AD, PD, MS, ALS etc.) have a distinct characteristic of having a particular microbiota profile. Nevertheless, an imbalance between the types of organism present in a gut may influence the onset and progression Care, communication and biomedical challenges 41 frontiersin.org of neurodegenerative diseases. Studies have suggested that intestinal microbiota disturbance could be considered as a potential risk factor for some NDD and trigger for the formation of abnormal aggregation of known proteins like tau, α-synuclein, amyloid-β, etc. The important factor is a role of microbiota in modulating the responses of the intestinal and cerebral immune systems. If the studies will show the contribution of dysbiosis to onset of neurodegeneration and progression in NDD patients we will adapt a therapeutic approach and try to renew microbiota. The role of microbiota in possible neuroprotection has yet to be determined. It is hypothesized that factors that initiate abnormal misfolding pathology enter the gut via the nose or mouth and then in a prion-like propagation spread from the gut enteric nervous system to medulla. Usually, three most common mechanisms mentioned by which dysbiosis contributes to NDD pathology are: compromised intestinal barrier integrity, metabolic dysfunction, and immune dysregulation. It is easier to modify the microbiota. So, a therapeutic potential of gut-microbiota-modulating agents is promising: diet modifications, probiotics, prebiotics, synbiotics, fecal transplantation, bacterial consortium transplantation, bacteriophage therapy and the use of predatory bacteria. The aim is by modulating good and bad bacteria to affect neuro-inflammation. In conclusion, current evidence suggests that abnormalities in gut microbiota may contribute to onset and progression of NDD. Further studies are needed. 48 Care, communication and biomedical challenges frontiersin.org Methods CSF data from April 2012 to December 2021 could be obtained and compared with the phenotypical characteristics of the ALS Patients. We studied the integrity of the blood-CSF barrier in 1059 patients. The ALS cohort was compared to controls suffering from Alzheimer’s disease, Mild Cognitive impairment, tension headache and facial palsy. Results QAlb values of ALS patients were not significantly different from controls, but surprisingly did not increase with age. A lower QAlb correlated with longer and a high QAlb with shorter survival predominantly in male patients, less so in females. The QAlb was also influenced by diabetes mellitus and BMI. Conclusions We conclude that the survival of, in particular male ALS patients is influenced by the integrity of the blood-CSF barrier. Mechanistic studies are required to explore this relationship and its meaning for the pathogenesis of ALS further. Care, communication and biomedical challenges 49 frontiersin.org The holy grail of cognitive training in the treatment of cognitively impaired patients Author Nataša Klepac – Department of Neurology Clinical University Hospital Zagreb and Zagreb Medical School, Zagreb, Croatia Citation Klepac, N. The holy grail of cognitive training in the treatment of cognitively impaired patients. Background Cognitive training has shown promise in helping cognitive impaired patients, but it is essential to set realistic expectations and not consider it a “holy grail” solution. Cognitive training refers to various interventions and exercises designed to improve cognitive functions such as memory, attention, problem-solving, and processing speed. These programs often involve repeated practice of specific cognitive tasks to stimulate and strengthen neural connections in the brain. While cognitive training can be beneficial for some individuals with cognitive impairments, it is not a one-size-fits-all solution, and its effectiveness can vary from person to person. Here are some key points to consider: Efficacy Research has shown mixed results regarding the effectiveness of cognitive training. Some studies have reported positive outcomes, while others have found limited or no significant improvements. The response to cognitive 50 Care, communication and biomedical challenges frontiersin.org training may depend on various factors, including the type and severity of cognitive impairment, the specific training program used, the individual’s motivation, and the frequency and intensity of training. Multimodal Approach Cognitive training should be viewed as part of a broader multimodal approach to managing cognitive impairments. Combining cognitive training with other strategies, such as physical exercise, social engagement, and medication when necessary, may yield better overall results. Individualized Approach Each person’s cognitive impairment is unique, and a personalized approach to cognitive training is crucial. Tailoring the training program to an individual’s specific needs and capabilities is more likely to be effective. Long-term Maintenance The benefits of cognitive training may not always be sustained over the long term, especially if training is discontinued. Continuous engagement in cognitively stimulating activities may be necessary to maintain improvements. Early Intervention Starting cognitive training early in the progression of cognitive impairment may yield better results. In some cases, cognitive training may slow down the decline of cognitive functions rather than fully restoring them. Ethical Considerations It is essential to manage expectations and avoid making unrealistic promises to patients and their families. Miracle cures or instant improvements are not guaranteed through cognitive training. Care, communication and biomedical challenges 51 frontiersin.org Conclucions In conclusion, while cognitive training holds promise as an adjunctive tool in managing cognitive impairment, it is not a “holy grail” solution. It should be seen as part of a comprehensive and personalized approach that considers the individual’s specific condition, needs, and overall health. Research in this field is continually evolving, and future advancements may further enhance our understanding of cognitive training’s role in supporting cognitive health. 52 Care, communication and biomedical challenges frontiersin.org Analysis of involuntary movements in patients with motor neuron disease Author Katarina Vogelnik Žakelj – Division of Neurology, University Medical Centre Ljubljana, Slovenia; Institute of Clinical Neurophysiology, University Medical Centre Ljubljana, Slovenia Blaž Koritnik – Institute of Clinical Neurophysiology, University Medical Centre Ljubljana, Slovenia Lea Leonardis – Institute of Clinical Neurophysiology, University Medical Centre Ljubljana, Slovenia Leja Dolenc Grošelj – Institute of Clinical Neurophysiology, University Medical Centre Ljubljana, Slovenia Tabish A Saifee – UCL Queen Square Institute of Neurology, Queen Square, London, UK Janez Zidar – Institute of Clinical Neurophysiology, University Medical Centre Ljubljana, Slovenia Maja Kojović – Division of Neurology, University Medical Centre Ljubljana, Slovenia Citation Žakelj, K.V., Koritnik, B., Leonardis, L., Grošelj, L.D., Saifee, T.A., Zidar, J., Kojović, M. Analysis of involuntary movements in patients with motor neuron disease. Background Contrary to common reports in the literature, we frequently observed minipolymyoclonus, tremor, and pseudodystonic thumb posturing in patients with motor neuron disease in everyday clinical practice. To describe the characteristics, prevalence, and underlying mechanisms of these involuntary movements, we conducted a prospective clinical and electrophysiological study. Care, communication and biomedical challenges 53 frontiersin.org Methods Our study included 77 consecutive patients. We assessed involuntary movements both at rest and during action, recording the patients on video for detailed examination. During clinical evaluations, we assessed arm muscle tone, strength, and deep tendon reflexes. Additionally, a subset of patients underwent accelerometry paired with electromyography to analyze these movements. Results Involuntary movements were detected in 68.9% of the patients. These movements were categorized into rest minipolymyoclonus, thumb tremor, pseudodystonic thumb posture, action minipolymyoclonus, and action tremor. Approximately one-third of the patients reported that these movements adversely impacted their hand function. Logistic regression analysis showed that rest minipolymyoclonus and thumb tremor were more likely in patients with significant distal muscle weakness and lower spasticity. Similarly, action-related involuntary movements were more common among patients with greater weakness. Patients with brisk tendon reflexes were more prone to exhibit action tremor rather than action minipolymyoclonus. The action tremor was identified by a specific peak frequency in accelerometry and electromyography recordings, which decreased with added mass, suggesting a mechanical-reflex origin. Conclusions Involuntary movements are a prevalent but often overlooked aspect of motor neuron disease and can lead to functional impairments. Our findings suggest that these movements are primarily of peripheral origin, driven by non-fused contractions of enlarged motor units. Minipolymyoclonus occurs when motor units do not synchronize, whereas mechanical-reflex tremor arises when synchronization happens through the stretch reflex. 54 Care, communication and biomedical challenges frontiersin.org R47H TREM2 variant among serbian alzheimer’s disease patients Author Nikola Andrejić – Institute of Human Genetics, Faculty of Medicine University of Belgrade, Belgrade, Serbia Milica Pešić – Institute of Human Genetics, Faculty of Medicine University of Belgrade, Belgrade, Serbia Ana Marjanović – Neurology Clinic, University of Belgrade, Belgrade, Serbia Marija Branković – Neurology Clinic, University of Belgrade, Belgrade, Serbia Milena Janković – Neurology Clinic, University of Belgrade, Belgrade, Serbia Gorana Mandić – Neurology Clinic, University of Belgrade, Belgrade, Serbia Ivana Novaković – Institute of Human Genetics, Faculty of Medicine University of Belgrade, Belgrade, Serbia Tanja Stojković – Neurology Clinic, University of Belgrade, Belgrade, Serbia Elka Stefanova – Neurology Clinic, University of Belgrade, Belgrade, Serbia Citation Andrejić, N., Pešić, M., Marjanović, A., Branković, M., Janković, M., Mandić, G., Novaković, I., Stojković, T., Stefanova, E. R47H TREM2 variant among serbian alzheimer’s disease patients. Background Alzheimer’s disease (AD) is genetically heterogeneous neurodegenerative disorder characterized by the development of dementia. Genome-wide association studies have identified several rare, heterozygous variants of TREM2 that increase the risk of AD, including R47H TREM2. Objective To determine the frequency of the R47H variant of the TREM2 gene in clinically determined AD patients, and to asses cognitive status at the disease onset and its relationship with educational level. Care, communication and biomedical challenges 55 frontiersin.org Methods This study included 168 consecutive AD patients clinically assessed, by neurologists’ specialists in degenerative dementias. MMSET and Goldman score (GS) were included. Genotyping rs75932628 was conducted using Real-time PCR and TaqMan® SNP assay following manufacturer instructions. Results: The frequency of C allele was 98.8%, and T allele was present in 1.2% of heterozygous patients. GSs of 1, 2, 3, 3.5, and 4 were present in 4.2%, 1.8%, 8.3%, 22.6%, and 63.1%, respectively. No significant differences were observed in MMSET scores across different R47H variants (p=0.3786). Higher MMSET scores correlated with higher educational levels (r=0.3144; p=0.00003; r2=0.0988). Discussion Future in vivo models of AD and in patients are needed to elucidate the precise mechanisms linking TREM2 variants to AD. Conclusions RH47 TREM2 is a rare risk variant in Serbian AD population. 56 Care, communication and biomedical challenges frontiersin.org The role of cognitive reserve in cognitive functioning of patients with als: a systematic review Author Ana Kuder, Lea Leonardis – Institute of Clinical Neurophysiology, University Medical Centre Ljubljana, Slovenia Citation Kuder, A., Leonardis, L. The role of cognitive reserve in cognitive functioning of patients with als: a systematic review. Background Approximately half of patients with amyotrophic lateral sclerosis (ALS) experience cognitive impairment, with up to 15% of patients developing frontotemporal dementia (FTD). The cognitive reserve hypothesis suggests that differences in cognitive function between individuals with the same degree of neuropathological burden may be modulated by premorbid life experiences, such as educational and occupational attainment and leisure activities. This systematic review aimed to investigate the indicators used to measure cognitive reserve inpatients with ALS and the role of cognitive reserve on the cognitive functioning of patients with ALS. Methods A literature search was performed in PubMed, Scopus, Web of Science, PsychINFO and Embase, following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement guidelines. Care, communication and biomedical challenges 57 frontiersin.org Results Quantitative studies explicitly addressing cognitive reserve and cognition in patients with ALS were included. Six studies that met the inclusion criteria were reviewed, including a total of 649 patients with ALS. Educational attainment was the most commonly used indicator of cognitive reserve (five studies). Additional measures of cognitive reserve (e.g. occupational attainment, vocabulary) were used in four studies. One of the studies defined cognitive reserve as a combination of occupational characteristics. Conclusions Based on this review, we conclude that educational attainment is a robust indicator of cognitive reserve. The relationship between total years of formal education and educational attainment may also be an informative indicator. However, education alone is not a sufficient measure of cognitive reserve and other measures should be considered, e.g. occupational attainment, leisure activities or vocabulary. These findings point to the lack of uniformity in the measurement of cognitive reserve in ALS. The results of most studies support the hypothesis of cognitive reserve in ALS and the development of cognitive impairment or FTD. Higher cognitive reserve correlates positively with the preservation of cognitive function throughout the course of the disease, more so in the group of patients with some degree of cognitive impairment in the early stages of ALS. A higher cognitive reserve could play a particularly important role in the maintenance of verbal fluency. However, further studies are needed to replicate these findings and additional studies should be conducted to define the protective role of cognitive reserve for each cognitive domain, as the current results are inconclusive. 64 Care, communication and biomedical challenges frontiersin.org Modern Healthcare System, future directions and innovations The national healthcare system operates through a network of primary, secondary, and tertiary care facilities that provide free services to the population. Recent technological enhancements, including electronic health records and advanced surgical techniques, have improved patient outcomes and efficiency. The public sector dominates healthcare delivery, emphasizing accessibility and equity. Despite challenges, the system has been resilient, providing critical services even during economic downturns and public health crises. However, modernization is needed, particularly in health information systems, medical training, and infrastructure development. The private sector also plays a crucial role, in offering specialized services and reducing the burden on public facilities. Looking ahead, Sri Lanka aims to harness technology and innovation to enhance its healthcare system. This includes expanding telemedicine to reach remote areas and using predictive analytics and big data to improve health service planning and disease management. Community health worker programs are being expanded to provide essential services and education at the grassroots level. Innovations such as AI in disease management, advanced drug delivery systems, and policy simulation models are being explored to improve healthcare outcomes and efficiency. These advancements aim to create a more responsive and proactive healthcare system that can address health issues before they become critical. Sustainable healthcare financing models are also being developed to ensure healthcare remains accessible and affordable for all citizens, regardless of economic conditions. Conclusion The historical evolution of healthcare in Sri Lanka, from its ancient roots to the present, reveals a complex interplay of cultural, religious, and colonial influences. As Sri Lanka faces new challenges, it is essential to leverage its rich historical heritage and innovative technologies to ensure a resilient, efficient, and equitable healthcare system for all its citizens. This ongoing evolution, while challenging, provides a blueprint for sustainable health development and a healthier future for the Sri Lankan population. Care, communication and biomedical challenges 65 frontiersin.org By understanding and building on its history, Sri Lanka can navigate the complexities of modern healthcare and improve outcomes for all its citizens, ensuring that health remains a fundamental right for generations to come. 66 Care, communication and biomedical challenges frontiersin.org Social cognition in patients with ALS Author Sara Kadenšek – Ljubljana ALS Centre, Institute of Clinical Neurophysiology, University Medical Centre Ljubljana, Ljubljana, Slovenia Vita Štukovnik – Department of Psychology, Faculty of Arts, University of Maribor, Maribor, Slovenia Blaž Koritnik – Ljubljana ALS Centre, Institute of Clinical Neurophysiology, University Medical Centre Ljubljana, Ljubljana, Slovenia Citation Kadenšek, S., Štukovnik, V., Koritnik, B. Social cognition in patients with ALS. Background Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disorder that affects the motor neurons in the brain and spinal cord. This results in muscle atrophy, weakness, and potentially affects cognitive functions. Cognitive changes in individuals with ALS may manifest as deficiencies in social cognition. The primary objective of this research was to evaluate social cognitive abilities in patients diagnosed with ALS in comparison to a control group. Moreover, the study aimed to examine how the severity of motor impairment correlates to deficits in social cognition. The investigation sought to uncover variations in social cognition between ALS patients with onset in the bulbar region and those with spinal onset. We also wanted to explore the specific domains of social cognition that exhibit the most pronounced impairments in ALS patients. Methods A total of 30 ALS patients and 29 controls, matched by age, gender, and education, underwent a social cognition evaluation using the Social Cognition subtest on the Edinburgh Cognitive and Behavioral ALS Screen Care, communication and biomedical challenges 67 frontiersin.org (SC ECAS), the Reading the Mind in the Eyes Test (RMET), and the Edinburgh Social Cognition Test (ESCoT). Results Key findings of our research is that ALS patients demonstrated significantly poorer performance in SC ECAS and ESCoT in comparison to controls. We detected no correlation between motor impairment as assessed by the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) and impairment in social cognition. Patients with bulbar onset showed significantly poorer performance compared to patients with spinal onset on RMET and on ESCoT. Our findings indicate that individuals with ALS exhibited the lowest performance specifically in the domain of cognitive theory of mind. Conclusions The research findings confirm impairments of social cognition in ALS patients. These findings can serve as a basis for further research of social cognition, contributing to a better understanding of cognitive aspect in ALS, with the aim of improving the overall quality of life of ALS patients and their caregivers. 68 Care, communication and biomedical challenges frontiersin.org Communication, voice, and swallowing disorders in people with neurodegenerative disorders Author Andres Köster – University of Tartu, Institute of Dentistry, Estonia Citation Köster, A. Communication, voice, and swallowing disorders in people with neurodegenerative disorders. Background Swallowing and communication disorders are prevalent among individuals with neurodegenerative diseases. Prompt identification and management of these issues can help mitigate complications like weight loss, respiratory infections, and social withdrawal. Regular evaluation by healthcare professionals and the implementation of appropriate interventions are crucial for minimizing these risks. Theory Improving one’sunderstanding and management of potential swallowing and speech disorders in neurodegenerative patients leads to more effective coping with their condition. Providing counseling to the patient’s caregivers ensures enhanced coping mechanisms for both the patient and their support network, thereby enhancing their overall quality of life. Conclusions First-hand knowledge of swallowing disorders, safe swallowing rules, determining the correct food consistency, or ensuring adequate enteral feeding are invaluable assets in the treatment journey of a neurodegenerative Care, communication and biomedical challenges 69 frontiersin.org patient. Speech therapy plays a crucial role in providing essential skills for improved sociability, ultimately enhancing the quality of life for individuals grappling with neurodegenerative disorders. 70 Care, communication and biomedical challenges frontiersin.org Rehabilitation options for people with dementia after hip fracture Author Anja Grušovnik Mušič, Alenka Omerzel – Vitadom, Slovenia Citation Mušič, A.G., Omerzel, A. Rehabilitation options for people with dementia after hip fracture. Background Hip fracture is an injury mainly in older adults, usually caused by a fall, and is more common in people with dementia. It can affect the ability to walk and perform activities of daily living and independence. People with dementia have a more challenging time recovering from a hip fracture and have a higher chance of complications. Occupational therapists and physiotherapists are crucial in helping the patient regain independence and rehabilitate. However, rehabilitation is often demanding because established models of rehabilitation after hip fracture do not meet the complex demands of a person with dementia. Methods Data was obtained from a review of the available literature and searched in PubMed and Cochrane databases using an English keyword search string. The following keywords were used: hip fracture, older adult, dementia, rehabilitation, occupational therapy, physiotherapy, and multidisciplinary approach. Results Rehabilitation of people with dementia after hip fracture is challenging. Rehabilitation outcomes are often unsatisfactory, or rehabilitation goals Care, communication and biomedical challenges 71 frontiersin.org are only partially achieved over a significantly more extended period. They are frequently excluded from rehabilitation programmes due to poor rehabilitation potential. Despite this, studies report improvements even in people with dementia. They are often admitted to a nursing home because of their lack of independence in caring for themselves and moving around. There, people with dementia have good access to occupational therapy and physiotherapy. Discussion Despite the potential positive outcomes of rehabilitation, people with dementia are often excluded from rehabilitation programmes. Dementia and cognitive impairment are often exclusion factors for participation in research. As a result, there is almost no scientific evidence that rehabilitation is worthwhile. Conclusions Existing models of rehabilitation may provide some benefits, but the currently available research does not provide quality guidelines for the management of people with dementia after hip fracture surgery in institutions such as nursing homes. 72 Care, communication and biomedical challenges frontiersin.org A health promotion intervention to promote positive ageing among a group of older adults in a rural environment Author Kalpani Abhayasinghe – Faculty of Allied Health Sciences, General Sir John Kotelawala Defence University, Sri Lanka Gayani Munasinghe – Faculty of Allied Health Sciences, General Sir John Kotelawala Defence University, Sri Lanka Tharushi Gomas – Faculty of Allied Health Sciences, General Sir John Kotelawala Defence University, Sri Lanka Shaini Rashmika – Faculty of Allied Health Sciences, General Sir John Kotelawala Defence University, Sri Lanka Duminda Guruge – Department of Health Promotion, Faculty of Applied Sciences, Rajarata University of Sri Lanka, Sri Lanka Citation Abhayasinghe, K., Munasinghe, G., Gomas, T., Rashmika, S., Guruge, D. A health promotion intervention to promote positive ageing among a group of older adults in a rural environment. Background The process of preserving an optimistic outlook, feeling good about oneself, staying physically fit and healthy, and living life to the fullest as one ages is known as “positive ageing.” With support, protection, and care, it enables people and communities to recognize their potential for long-term physical, mental, spiritual, and social well-being and to participate in society in accordance with their needs, preferences, and capacity. The current study was conducted to explore the perspectives toward positive ageing among Care, communication and biomedical challenges 73 frontiersin.org a group of older adults and then to engage them and their family members in improving healthy ageing through a community-based health promotion intervention. Methodology: This is a survey-enhanced qualitative inquiry which integrates a questionnaire survey and a community-based health promotion intervention implemented in Galmuruwa area of the Puttalam District. In the first phase, a survey was carried out among a convenient sample of older adults in the selected setting (n=100) using an interviewer administered questionnaire. In the second phase, a health promotion intervention was carried out over a period of three months among a purposively selected group of older adults and their family members which included adolescents and caretakers. A contextually validated community-based health promotion model was used as the logical framework. This model describes the health promotion process in three stages namely, 1) Initiating the process, 2) Maintaining and directing towards the effectiveness, and 3) Monitoring and modifying the process. Both quantitative and qualitative data collection methods including questionnaire survey, group discussions, observations and reflective field journals by the researchers, and simple monitoring tools such as charts and calendars developed by the participants were used. Quantitative findings were analysed using simple descriptive statistics and thematic analysis method was used to analyse qualitative findings. Results A survey was conducted among 100 older adults. All the older adults were above 60 years of age. Sixty-nine of them were female and thirty-one of them were male. Out of 100 older adults, sixty-one individuals fell within the age range of 60-69 years. While thirty individuals were between 70-79 years and nine individuals were 80 years and above. The majority were Sinhalese, Buddhists. The health promotion process was carried out among a total of sixty-five older adults (out of 100) and their families including both adults and adolescents. Participants were able to initiate the process, identify the factors or determinants affected healthy ageing, prioritize, and implement potentially 80 Care, communication and biomedical challenges frontiersin.org practice addresses personal factors such as pain, emotional, and cognitive processes associated with physical injury or disability that negatively affect engagement in occupations. By enhancing attention and awareness of performance patterns, mindfulness helps reduce unproductive engagement in occupations. Additionally, it promotes an improved quality of subjective experiences and mindful engagement in occupations by facilitating a transition from a state of ‘doing’ to a state of ‘being.’ Ultimately, mindfulness complements existing treatment protocols that focus on physical, behavioral, and cognitive processes, thereby providing a holistic approach to occupational therapy. Mindfulness has garnered significant attention in recent years, evolving from its Buddhist origins to becoming an integral component across various fields, including psychology, healthcare, and social services. Its applications are now widespread, encompassing schools, workplaces, clinics, hospitals, prisons, the military, and corporations. Methods This review delves into the burgeoning evidence supporting mindfulness as a medical intervention, with a particular focus on its application in the fields of medicine and psychology. Additionally, it explores how mindfulness principles align with the core tenets of occupational therapy (OT), where mindfulness meditation is not merely a therapeutic technique but also a meaningful occupation in itself. A systematic review was conducted using prominent databases such as MEDLINE, Web of Science, and Scopus. Keywords such as “occupational therapy,” “mindfulness,” “mindfulness-based intervention,” and “meditation” were employed to identify relevant studies and articles. The selection criteria included peer-reviewed journal articles, clinical trials, and meta-analyses that examined the application of mindfulness in OT, as well as its impact on health outcomes, personal factors, performance patterns, and occupational engagement. This methodical approach ensured a comprehensive evaluation of the existing literature on the integration of mindfulness into OT practices. Care, communication and biomedical challenges 81 frontiersin.org Results From the literature reviewed, it is evident that mindfulness has a significant positive effect on personal factors, performance patterns, and engagement in occupations. These improvements contribute to better health outcomes, enhanced well-being, and an overall higher quality of life. Within the context of OT, mindfulness can serve both as a primary intervention and as a complementary approach, enriching existing therapeutic practices. Discussion Mindfulness as a therapeutic approach in OT comprises several key components. It facilitates participation in mindfulness meditation as a meaningful occupation, addressing personal factors such as pain, and emotional and cognitive processes associated with physical injury or disability. By increasing attention and awareness of performance patterns, mindfulness reduces unproductive engagement in occupations. Furthermore, it promotes a transition from a state of ‘doing’ to a state of ‘being,’ enhancing the quality of subjective experiences and mindful engagement in occupations. This holistic approach complements existing treatment protocols focused on physical, behavioral, and cognitive processes, thereby enriching OT practices. The integration of mindfulness within OT is interpreted diversely among researchers. Engagement in occupation closely aligns with mindfulness principles, encouraging OT practitioners to integrate mindfulness effectively into therapeutic practices. For instance, mindful engagement supports OT’s goal of enhancing meaningful activities for individuals with dementia, facilitating their ability to lead fulfilling lives and aligning with personcentered care approaches in dementia care (White et al., 2020). Mindfulness is linked to occupational engagement through practices such as active listening, present-moment awareness, non-judgment, self-reflection, and achieving a state of “flow” (White et al., 2020). Integrating mindfulness into occupational literature can reshape the understanding and approach to human occupation by introducing constructs such as presence in 82 Care, communication and biomedical challenges frontiersin.org occupation, awareness, engagement, well-being, and fulfillment (Goodman et al., 2019). Moreover, mindfulness serves as a self-care strategy promoting balance, self-regulation, and self-compassion, deeply rooted in the foundational principles of OT (Gutman et al., 2020; Andrews et al., 2021). In practice, OTs employ mindfulness through formal methods like Mindfulness-Based Stress Reduction (MBSR), informal techniques such as yoga, and personal mindfulness practices (White et al., 2020). The dual role of mindfulness for OTs, both personally and therapeutically, allows it to be integrated into occupation-based interventions effectively (Elliot, 2015). Implementing mindfulness enables OTs to adopt non-judgmental attitudes, improve active listening skills, role model behaviors, and manage stress related to caregiving more effectively, particularly for individuals with dementia. It is argued that OTs can seamlessly integrate mindfulness into daily activities without additional training, using client-centered approaches that incorporate mindfulness where applicable (White et al., 2020). Despite cognitive impairments, mindfulness enhances cognitive functioning by improving awareness and attention, which are crucial for effective engagement in occupations (Andrews et al., 2021). Research indicates that mindfulness interventions support active participation in occupations among individuals recovering from stroke (Andrews et al., 2021) and those with Parkinson’s disease (Hill et al., 2021). Furthermore, mindfulness contributes to social well-being by fostering improved interpersonal relationships, selfacceptance, kindness, better communication, and a stronger self-relationship (Hill et al., 2021). Conclusion Mindfulness offers a comprehensive therapeutic approach in occupational therapy, addressing various personal and performance factors. Its integration into OT practices represents a significant advancement in therapeutic approaches, particularly for individuals with dementia. By enhancing attention, awareness, and engagement in meaningful occupations, Care, communication and biomedical challenges 83 frontiersin.org mindfulness significantly improves the effectiveness of interventions. This, in turn, contributes to better health outcomes, overall well-being, and an enhanced quality of life for individuals. References Andrews, A., Atler, K., Portz, J., VanPuymbroeck, M., Rose, C., & Schmid, A. (2021). Occupational therapist’s use of yoga in post-stroke care: A descriptive qualitative study. British Journal of Occupational Therapy, 84(4), 240-250. https://doi.org/10.1177/0308022620910371 Elliot, N. (2015). Exploring mindfulness meditation in occupational therapy: An introduction to basic practice. OT Now, 17(1), 6-8. Goodman, V., Wardrope, B., Myers, S., Cohen, S., McCorquodale, K., & Kinsella, E. (2019). Mindfulness and human occupation: A scoping review. Scandinavian Journal of Occupational Therapy, 26(3), 157-170. https://doi.or g/10.1080/11038128.2018.1483422 Hill, H., Swink, L., Atler, K., Anderson, A., Fling, B., & Schmid, A. (2021). Merging yoga and occupational therapy for Parkinson’s disease improves fatigue management and activity and participation measures. British Journal of Occupational Therapy, 84(4), 230-239. https://doi. org/10.1177/0308022620909086 White, B., Brousseau, P., Daigneault, J., Harrison, E., Lavallee, V., & St Cyr, K. (2020). Are we missing opportunities? How occupational therapists would benefit from connecting mindfulness to occupational participation. Open Journal of Occupational Therapy, 8(2), 1-9. https://doi.org/10.15453/21686408.1650 84 Care, communication and biomedical challenges frontiersin.org Dialogues in neurodegenerative disorders: development of a community care process model Author Katarina Galof – University of Ljubljana, Faculty of Health Sciences, Occupational Therapy Department Citation Galof, K. Dialogues in neurodegenerative disorders: development of a community care process model. Background The growing population of older adults worldwide underscores the need to facilitate aging in a home environment (Friedman et al., 2019). Older individuals are entitled to live healthy, safe, and fulfilling lives, free from poverty and social exclusion (Vertot, 2020). In 2019, individuals aged 65 or older constituted 16.5% of the U.S. population and 20.3% of the European Union population, with Slovenia reaching 21.1% in 2021 (SURS, 2020). In response, policymakers in Slovenia have initiated pilot projects to establish a long-term care system, focusing on entry thresholds and service provision. The objective of this study is to develop a Community Care Process (CCP) model aimed at supporting aging in place for individuals with dementia. This model seeks to integrate formal and informal care teams to comprehensively address individual needs, thereby ensuring the maintenance of health and well-being. Care, communication and biomedical challenges 85 frontiersin.org Methods An inductive, theory-based research approach was employed to develop the CCP model. The process involved several key stages, including identifying the specific needs of people with dementia, planning and designing appropriate care services, and evaluating the effectiveness of the model. The development and evaluation of the CCP model were guided by a spiral model methodology encompassing four levels: concept development, new product development, product growth, and product maintenance. Results The CCP model was successfully developed, including steps such as communication, planning, risk analysis, design, practical implementation, and evaluation. The model integrates various professional actors from health and social systems as well as laypersons, ensuring comprehensive care that adapts to the needs of people with dementia. Development of the Community Care Process Model (CCP) The CCP model was developed to integrate and perform daily activities in a home environment, maintaining autonomy and independence (Hlebec, 2014; Galof & Gričar, 2017). A person-centred care approach guided the model’s design, emphasizing partnership, empowerment, engagement, cooperation, and adaptation. Environmental factors, such as low income, chronic diseases, limited social support, and inadequate housing, were crucial in developing the CCP model. Spiral Model Methodology The spiral model methodology allows clear tracking of human resource development to meet individual users’ needs in neurodegenerative disorders care. Each level or stage progresses through basic steps, describing a 360° turn before moving to the next stage. The stages (I-IV) include concept development, new product development, product growth, and product maintenance. 86 Care, communication and biomedical challenges frontiersin.org Levels and Steps of the CCP Spiral Model Level I – Concept Development Project: Initiated by the elderly, this stage identified the needs for independent living and daily activity integration. A team of experts defined these needs, leading to the concept development project. Level II – New Product Development Project: This stage involved communicating with potential users, planning services, conducting risk analyses, designing services, implementing practical tests, and evaluating the services. Level III – Product Growth Project: This stage focused on expanding long-term care services, based on feedback and data from previous levels. It involved spreading information, planning expanded services, conducting further risk analyses, and continuously improving services. Level IV – Product Maintenance Project: This stage concentrated on maintaining and improving services. It involved ongoing communication, long-term planning, continuous risk analysis, and service adaptation based on users’ changing needs. Discussion The CCP model’s person-centred care highlights the importance of partnership, empowerment, engagement, cooperation, and adaptation. The spiral methodology ensures comprehensive tracking and development of human resources, facilitating aging in place. By addressing personal and environmental factors, the CCP model enhances health, well-being, and quality of life for people with dementia. Discussion The implementation of the CCP model demonstrates the importance of a person-centred approach, focusing on partnership, empowerment, engagement, cooperation, and adaptation. The spiral methodology effectively tracks the development of human resources required for longterm care, facilitating aging in place and maintaining autonomy. Care, communication and biomedical challenges 87 frontiersin.org FIGURE 1 Characteristic fields (A-F) and levels (I-IV) of the spiral model, adapted for people with dementia in neurodegenerative disorders care. (A) communication with potential users, (B) planning, (C) risk analysis, (D) design, (E) practical implementation, (F) evaluation, (I) concept development project, (II) new product development project, (III) product growth project, (IV) product maintenance project. Conclusion The CCP model integrates formal and informal care services to support aging at home. It represents a structured, person-centred care approach, promoting independence and well-being for individuals with dementia. This model offers a sustainable solution for neurodegenerative disorder care, emphasizing continuous improvement and adaptation. The CCP model represents a significant advancement in neurodegenerative disorder care, providing a structured approach to integrating care services in a home environment. This model supports the independence and well-being of people with dementia, offering a viable solution for aging at home. 88 Care, communication and biomedical challenges frontiersin.org References Friedman, E. M., Shih, R. A., Langa, K. M., & Hurd, M. D. (2019). Effects of aging and informal caregiving on health outcomes and costs. Journal of the American Geriatrics Society, 67(9), 1856-1861. Galof, K., & Gričar, B. (2017). Integration of long-term care services in the home environment: The case of Slovenia. Social Work, 56(6), 469-482. Hlebec, V. (2014). Age and social exclusion. Quality Aging, 17(4), 3-13. Quinn, J. F. (2013). Ageing and the labor market: A U.S. perspective. Journal of Population Ageing, 6(1-2), 55-71. SURS. (2020). Elderly residents of Slovenia. Ljubljana: Statistical Office of the Republic of Slovenia. Vertot, N. (2020). Intergenerational solidarity and aging in Slovenia. Social Work Discussions, 36(96), 27-45. Care, communication and biomedical challenges 89 frontiersin.org Primary prevention and interventions to reduce cognitive decline Author Lucia Bergamini, Andrea Fabbo – UOC Geriatria e Disturbi Cognitivi, AUSL Modena, Italy Citation Bergamini, L., Fabbo, A. Primary prevention and interventions to reduce cognitive decline. World Alzheimer Report 2023 focuses on “Reducing risk of Dementia: Never Too Early, Never Too Late.” This means that dementia prevention is a priority objective and among the tasks of dementia nationals programs must be considered the implementation of community programs aimed at preventing the disease, and improving cognitive abilities in MCI and in all stages of dementia. In 2020 Livingston published a review in Lancet and identifies 12 modifiable risk-factor; management and control of risk factors can reduce 40% of all forms of dementia. The USL Company of Modena, has always been at the forefront, along with the social-welfare network associations, in the management of the problem dementia through a dedicated network of services, part of these dedicated to prevention. Community programs dedicated to the prevention of dementia, both primary and secondary, are aimed at elderly people, living in the community, and stimulate cognitive and motor skills in socialization contexts to reduce isolation and loneliness. 96 Care, communication and biomedical challenges frontiersin.org El-Gazar, H. E., Shawer, M., Alkubati, S. A., & Zoromba, M. A. (2024). The role of psychological ownership in linking decent work to nurses’ vigor at work: A two-wave study. Journal of Nursing Scholarship. https://doi. org/10.1111/jnu.12970 ILO (2020). Improving nurses’ and midwives’ working conditions: An investment in resilience for all. https://www.ilo.org/resource/news/ improving-nurses-and-midwives-working-conditions-investment-resilienceall (Last access: May 19 2024). Sönmez, B., Keskin, A. Y., Demir, Ö. İ., Emiralioğlu, R., & Güngör, S. (2022). Decent work in nursing: Relationship between nursing work environment, job satisfaction, and physical and mental health. International Nursing Review, 70(1), 78–88. https://doi.org/10.1111/inr.12771 Wang, D., Jia, Y., Hou, Z., Xu, H., Zhang, H., & Guo, X. (2019). A test of psychology of working theory among Chinese urban workers: Examining predictors and outcomes of decent work. Journal of Vocational Behavior, 115, 103325. https://doi.org/10.1016/j.jvb.2019.103325 World Health Organization: WHO. (2024, May 3). Nursing and midwifery. https://www.who.int/news-room/fact-sheets/detail/nursing-and-midwifery (Last access: May 19 2024). Xue, B., Feng, Y., Hu, Z., Chen, Y., Zhao, Y., Li, X., Yang, Y., Zhang, J., Zhang, Y., & Luo, H. (2024a). Assessing the mediation pathways: How decent work affects turnover intention through job satisfaction and burnout in nursing. International Nursing Review. https://doi.org/10.1111/inr.12939 Xue, B., Feng, Y., Zhao, Y., Li, X., Yang, Y., Zhang, J., Zhang, Y., Hu, Z., & Luo, H. (2024b). Decent work, work engagement, and turnover intention among registered nurses: a cross-sectional study. BMC Nursing, 23(1). https://doi. org/10.1186/s12912-023-01662-6 Care, communication and biomedical challenges 97 frontiersin.org Challenges in caring for people with neurodegenerative disorders (NDDs); A narrative on Asian perspectives Author Dinithi Vidanage, Chandima Kumara Walpita Gamage, Prasanna Herath, Wasana Sudusinghe – General Sir John Kotelawala Defence University, Rathmalana, Sri Lanka Citation Vidanage, D., Gamage, C.K.W., Herath, P., Sudusinghe, W. Challenges in caring for people with neurodegenerative disorders (NDDs); A narrative on Asian perspectives. Background Neurodegenerative (NDDs) are a public health concern and a leading cause of disability and dependency among the elderly. Regions like Asia, Latin America and Africa are currently witnessing rapid demographic aging. It has been estimated that, globally, about 10 million people develop NDD each year, and nearly 60% of these estimates reside in lowand middle-income countries. In most developing countries, older people, whether or not widowed, typically live with their families in multigenerational households. The care network has often been developed with a family centered approach in people with NDD where multiple socio-economic challenges play into account. The priorities should be made clear to identify the barriers available in Asian countries in providing quality care for people with NDDs. Thus, this review sort to gather information published in the Asian countries with regards to the challenges in caring for people with NDDs. 98 Care, communication and biomedical challenges frontiersin.org Methods Original research articles, abstracts, reviews, and letters to the editor, published in the English language, during the last five years (2019 to 2023) were searched on databases (Google Scholar, PubMed, ResearchGate, Hinari, etc). The studies conducted in Asian countries were considered. Search terms such as “neurodegenerative disorders, challenges in NDD care, dementia care, NDD in Asia, and Alzheimer’s disease” were used during the thorough literature search. Reference lists of included full papers were also searched online, if relevant. Articles published in languages other than English, studies conducted in non-Asian countries, and literature older than five years from the date of publication were excluded from the review. The included literature was thoroughly considered for the aim of the study, study setting, study design, main findings and conclusion. Results Twenty-four publications were considered relevant according to the inclusion criteria. Most of the publications were found related to dementia care (ten papers). Few others (four papers) have considered caring for people with Alzheimer’s disease and Parkinson’s disease (two papers). This review found studies published in India, Sri Lanka, Nepal, Bangladesh, Indonesia, and Pakistan with regards to NDD care. Three main themes were identified as the ‘challenges’ in caring for people with NDDs, according to the main findings of the published literature. The themes included “Informal caregivers involve in NDD care”, “Lack of specialized training for healthcare professionals in care of NDDs” and “inadequate social/health services available for NDD care”. Under the informal caregivers involved in NDD care, it has been noted that less empowerment of caregivers, limited knowledge/resources/skills in caring for people with NDDs, no formal preparation of caregivers, late presentation of people with NDDs to healthcare services, caring responsibilities at home is shared by all members, etc. as challenges. With regards to the second theme, this review notified the inadequacy of specialized training of healthcare professionals in NDD care. The challenges included the wide range of differences in attitudes towards NDDs and Care, communication and biomedical challenges 99 frontiersin.org inadequate knowledge of dementia among nursing staff, unavailability of national policy on healthcare professional education and training to improve dementia care practice, lack of integrating education and training of dementia care in the undergraduate programs of medicine and nursing, deficits in the knowledge of dementia and a low level of positive attitude among the healthcare professionals who work in hospital settings where people with dementia are cared for, etc. This review further captured that Asian populations have fewer available facilities in the health sector for the care of people with NDDs. There are few assisted living facilities or institutions that provide long-term care in lowincome countries. Some countries even do not find cost-effective services available for people with NDDs. In most settings, families do play a vital caring role in looking after older adults with NDDs. In addition, inadequate resources and funding provided by the government organizations, insufficient workforce, unavailability of special palliative care services, etc. were identified. Discussion The inadequate training of healthcare professionals in NDD care reflects a systemic issue in Asian countries compared to the developed nations in the world. This needs to be addressed through comprehensive education and training programs. Bridging the gap in knowledge and fostering positive attitudes among healthcare professionals can significantly improve the quality of care provided to individuals with NDDs. Additionally, the scarcity of specialized facilities and services for NDD care in low-income countries poses a significant challenge compared to highincome countries. Lack of access to assisted living facilities and palliative care services further compounds the difficulties faced by patients and their families. Overall, addressing these challenges requires a multi-faceted approach involving policy changes, education initiatives, and increased funding to improve the quality of care for individuals with NDDs in Asian countries. 100 Care, communication and biomedical challenges frontiersin.org Conclusion Low and middle-income countries encounter significant gaps in providing quality care for people with NDDs. The main challenges include informal caregiving, inadequate specialized training of NDD among healthcare workers, and the gaps in social/health services available for the care of people with NDDs. Establishing promising initiatives such as specialized training for healthcare workers, setting up cost-effective or free-of-charge training services for family caregivers, running special care units for people with NDD at every main hospital in the country, and establishing social services with a trained workforce, conducting more research to improve evidence-based practice could be suggested to fill up the gaps. Care, communication and biomedical challenges 101 frontiersin.org The needs of caregivers of people with dementia Author Alenka Oven, Zorana Sicherl – Faculty of Health Sciences, University of Ljubljana, Slovenia Citation Oven, A., Sicherl, Z. The needs of caregivers of people with dementia. Background Dementia is a syndrome that manifests itself in disorders of higher cortical functions, particularly memory, comprehension, thinking, orientation, and judgement, leading to significant impairment in daily activities. As dementia progresses, affected individuals require increasing assistance with daily activities, meaning that they are increasingly dependent on family members for care. This shift in responsibility has a significant impact on family caregivers and often leads to chronic fatigue, social isolation, financial strain, and reduced quality of life. Occupational therapy also plays an important role in supporting both the person with dementia and the caregiver by providing strategies to manage daily tasks and maintain functioning for as long as possible. The primary aim of this study was to understand the experiences of family members who care for relatives with dementia. We explored the challenges faced by caregivers, their coping mechanisms, and the impact of caregiving on their lives. In addition, we also investigated family caregivers’ knowledge of occupational therapy as a possible formal help. 102 Care, communication and biomedical challenges frontiersin.org Methods Qualitative research was conducted using semi - structured interviews with five family members caring for a person with dementia in their home environment. The participants, aged between 41 and 71 years, have been a primary caregiver for two to six years. The interviews focused on their experiences, the impact of the disease on their lives and their awareness and utilization of occupational therapy services. The data from these interviews were analysed using qualitative content analysis, which led to the identification of key categories, each comprising several subcategories that provide a comprehensive understanding of the caregiving experience: Results The analysis revealed four main categories in relation to caregivers’ experiences: coping with a loved one’s illness, the impact of dementia on the individual, the experience and consequences of caregiving, and support in caring for a person with dementia. Within these categories, several subcategories emerged, to illustrate the different challenges faced by caregivers. 1. Coping with a loved one’s illness: Family caregivers described their initial reactions to the dementia diagnosis, which ranged from shock to denial to gradual acceptance. They reported difficulties in understanding the disease, its symptoms, its progression and the changes in their loved one’s behaviour. Although most of information upon diagnosis was provided by medical specialist, most of caregivers struggled with not receiving clear information and guidance from doctors and other medical staff on how to manage the illness, leading to feelings of helplessness and frustration. Caregivers expressed feelings of anxiety, helplessness, and grief as they witnessed the decline of their loved ones. 2. The impact of dementia on the individual: Dementia has a profound impact on the behaviour and abilities of a person with dementia. Caregivers noted significant changes in their loved ones, including memory loss, confusion, mood swings, and altered social interactions. These changes often led to challenging situations, such as managing aggression, wandering and communication difficulties. The progressive Care, communication and biomedical challenges 103 frontiersin.org nature of dementia meant that caregivers constantly had to adapt to new challenges as the disease progressed. It has also become increasingly important over time to promote the implementation of daily activities of a person with dementia. 3. The experience and consequences of caregiving: Caregiving is physically and emotionally demanding. Caregivers reported high levels of stress, exhaustion, and burnout due to the relentless nature of the care required. Most experienced a loss of personal time, leading to the abandonment of hobbies and social activities. The constant need for care also strained relationships within the family, and some caregivers expressed feelings of resentment, guilt, and isolation. The financial burden was also a major problem especially for those who had to reduce their working hours or give up their job to provide care. 4. Support in caring for a person with dementia: Caregivers emphasized the importance of both formal and informal support systems. Formal support systems included healthcare services, usually consultation with nurses. However, most caregivers were unaware of these services or had limited access to them. Informal support, particularly from family and friends, was crucial for emotional support, but caregivers often felt that their needs were overlooked or misunderstood by those around them. Some of them were aware of occupational therapies and what help they can provide, and the option of referring to an occupational therapist for support in managing daily activities and adapting the home environment would be beneficial but was underutilized. Discussion and Conclusion People with dementia need a lot of encouragement and help from caregivers to perform daily activities. Most care for people with dementia is provided by an informal network of family members. Caring for a person with dementia at home presents many challenges that have a significant impact on the wellbeing of a caregiver. Caregivers experience lack of information, mental and emotional overload, stress, burnout and loneliness as well as psychological and emotional strain, which leads to a poorer quality of life. Caregivers also 104 Care, communication and biomedical challenges frontiersin.org begin to abandon a healthy lifestyle, which worsens their state of health. When caring for a person with dementia, family members also need help, which can be both formal and informal. They have been found to make use of both types of help. The findings of our study point out the importance of providing comprehensive support to family caregivers, including better access to information, healthcare services and also occupational therapy. Occupational therapists can play an important role in improving the quality of life for both the caregiver and the person with dementia by providing practical solutions and emotional support. There is a need to increase awareness and utilization of occupational therapy services among caregivers. In addition, the healthcare system should prioritize the development of more robust support structures for families dealing with dementia and recognize the crucial role that caregivers play in the long-term care of family members with dementia. Care, communication and biomedical challenges 105 frontiersin.org Innovations in neurodegenerative disease research – Brain banking and biomarkers The role of biomarkers in the diagnosis of Alzheimer’s disease continuum Author Elka Stefanova – Faculty of Medicine University of Belgrade, Belgrade, Serbia; Neurology Clinic, University of Belgrade, Belgrade, Serbia Citation Stefanova, E. The role of biomarkers in the diagnosis of Alzheimer’s disease continuum. Background Rapid progress in determining classic cerebrospinal fluid (CSF) biomarkers has contributed to understanding the dynamic links between the pathophysiological processes associated with Alzheimer’s disease (AD). Beta-amyloid Aβ (A), and tau (T) which include Phospho tau (F-Tau) and Total tau (T-tau) are recognized as classic CSF biomarkers in AD. Recently, a less invasive and more accessible procedure has been the determination of these basic biomarkers and other new specific biomarkers from blood/plasma. More recently, it has been shown that increased reactivity of astrocytes plays a role in the association of Ab with early tau phosphorylation in preclinical AB, and this is indicated by elevated glial fibrillary acidophilic protein (GFAP) in plasma. 112 Care, communication and biomedical challenges frontiersin.org in the cytoplasm of neurons. The pathology of HRE mutation results from three proposed mechanisms. The first is the formation of RNA foci by transcribed repeats and the sequestration of RNA-binding proteins which are then unavailable for cellular processes. The second is the toxicity of dipeptides: GA, GR, GP, PA, PR translated from HRE RNA. The last mechanism is loss of function of C9orf72 protein due to HRE insertion. Neurodegenerative diseases are associated with mutations in proteins termed aminoacyl-tRNA synthetases (ARS). They catalyse the esterification of tRNA to its codogenic amino acid. If this does not occur, the tRNA remains empty. Irregularities in the performance of ARS are associated with insufficient or incorrect aminoacylation of tRNA, which can lead to errors in protein synthesis: misincorporation, frameshifting, or premature insertion of a stop codon. This was shown in many neurodegenerative diseases like Charcot-Marie-Tooth and Alzheimer’s disease. Uncharged tRNAs bind the kinase GCN2 which leads to activation of the integrated stress response (ISR) via phosphorylation of the eIF2α, resulting in formation of SGs. Activation of ISR also depends on the activation of other three kinases: PERK, PKR and HRI, which are activated in response to various stressors. SG are dynamic cytoplasmic membranelles organelles that allow energy to be conserved only for processes necessary for cell survival by inhibiting translation. SG sequester untranslated mRNAs, RNA-binding proteins, translation factors, and other components involved in translation that are no longer available to the cell until the stress subsides. In a recently published article our group showed that antisense (G4C2)n RNA derived from C9orf72 mutation interact with α-subunit of cytoplasmic protein phenylalanine-tRNA synthetase (FARSA) (Malnar Črnigoj et al., 2023). This protein attaches amino acid phenylalanine onto tRNAphe. We showed that this interaction results in decreased aminoacylation of tRNAphe and incorporation of phenylalanine into proteins. Proteins rich in phenylalanine (over 10 % of phenylalanine in their sequence) are reduced in C9orf72patient derived cells and cerebellum tissue. Care, communication and biomedical challenges 113 frontiersin.org Methods We performed gene ontology (GO) analysis of phenylalanine proteins that have 2 (435 proteins) and 3σ (60 proteins) over the average phenylalanine content. Additionally, we determined the proteins that have regions rich in phenylalanine. We used in house written programme to look for proteins that have more than 5 x phenylalanine in 15 amino acid window (248 proteins) and 6 x phenylalanine in 25 amino acid window (413 proteins). We performed gene ontology (GO) analysis using DAVID on those proteins with three different GO terms: biological processes, cellular components and protein domain keyword analysis. The activation of GCN2-dependant stress response was observed on HEK293 cells transfected with sense and antisense repeats and controls. Specific inhibitor of GCN2 kinase A-92 was used to check the activation of GCN2 kinase. Results Through bioinformatic analysis, we revealed that the majority of proteins rich in phenylalanine content localize to membranes, with the endoplasmic reticulum being particularly prominent. The same was observed for proteins with phenylalanine rich regions. The most enriched biological processes indicated involvement in various membrane functions such as sensory signaling and various transport pathways. We observed notable downregulation and changed localisation of these proteins in cells derived from C9orf72 patients. Additionally, we investigated stress responses with the emphasis on the induction of the starvation response in the presence of the repeats. We showed that sense and antisense repeats are able to induce GCN2depandant stress response. Importantly, this stress response differed between sense and antisense repats oneand two-day after transfection. The effect of sense (G4C2)n repeats was higher 2 days after transfection. On the other hand antisense (C4G2)n repeats significantly increased the phosphorylation of eIF2α one day after transfection where the response to GCN2 was also 114 Care, communication and biomedical challenges frontiersin.org significant. After two days the cellular stress response was not significant anymore. Discussion One of the biggest questions in the field continues to be which of the three proposed C9orf72 mutation hypotheses contributes most strongly, though probably not exclusively, to the development of ALS and FTD. We showed that the majority of phenylalanine rich proteins are membrane proteins, significantly enriched in ER and involved in many membrane functions like signal transduction and transport pathways. This is expected since phenylalanine is one of the most abundant amino acids in transmembrane domains. Abnormalities in ER function can affect homeostasis and protein misfolding, which is notably pronounced in ALS and FTD and neurons which are sensitive even to small amounts of misfolded proteins (Waldron et al., 2019). We showed that the eIF2α pathway is activated in the presence of both repeats which are able to activate the ISR through GCN2. This is more pronounced with the antisense transcripts. Observed differences stress response activation need to be taken into account in similar experiments as they are usually performed at the same time point for both repeats. We presented new cellular processes that may be altered in the C9orf72 mutation in connection to phenylalanine dysregulation. The presented results offer new potential targets for therapeutic development. Care, communication and biomedical challenges 115 frontiersin.org References Liu, Y., Engelman, D. M., and Gerstein, M. (2002). Genomic analysis of membrane protein families: abundance and conserved motifs. Genome Biol 3, 1–12. doi: 10.1186/GB-2002-3-10-RESEARCH0054/FIGURES/5 Malnar Črnigoj, M., Čerček, U., Yin, X., Ho, M. T., Repic Lampret, B., Neumann, M., et al. (2023). Phenylalanine-tRNA aminoacylation is compromised by ALS/FTD-associated C9orf72 C4G2 repeat RNA. Nature Communications 2023 14:1 14, 1–15. doi: 10.1038/s41467-023-41511-3 Rothstein, J. D., Baskerville, V., Rapuri, S., Mehlhop, E., Jafar-Nejad, P., Rigo, F., et al. (2024). G2C4 targeting antisense oligonucleotides potently mitigate TDP-43 dysfunction in human C9orf72 ALS/FTD induced pluripotent stem cell derived neurons. Acta Neuropathol 147, 1–14. doi: 10.1007/S00401-02302652-3/FIGURES/6 Waldron, A. L., Wilcox, C. E., Francklyn, C. S., and Ebert, A. M. (2019). Knock-down of Histidyl-tRNA Synthetase causes cell cycle arrest and apoptosis of neuronal progenitor cells in vivo. Front Cell Dev Biol 7, 447779. doi: 10.3389/FCELL.2019.00067/BIBTEX 116 Care, communication and biomedical challenges frontiersin.org The protein interactome of TDP-43 in ALS: A mystery still waiting to be solved Author Jerneja Nimac – Department of Biotechnology, Jožef Stefan Institute, Ljubljana, Slovenia; Graduate School of Biomedicine, Faculty of Medicine, University of Ljubljana, Ljubljana, Slovenia Sonja Prpar Mihevc – Department of Biotechnology, Jožef Stefan Institute, Ljubljana, Slovenia; Veterinary Faculty, University of Ljubljana, Ljubljana, Slovenia Julija Mazej – Department of Biotechnology, Jožef Stefan Institute, Ljubljana, Slovenia Helena Motaln – Department of Biotechnology, Jožef Stefan Institute, Ljubljana, Slovenia Vera Župunski – Faculty of Chemistry and Chemical Technology, University of Ljubljana, Ljubljana, Slovenia Boris Rogelj – Department of Biotechnology, Jožef Stefan Institute, Ljubljana, Slovenia; Faculty of Chemistry and Chemical Technology, University of Ljubljana, Ljubljana, Slovenia Citation Nimac, J., Mihevc, S.P., Mazej, J., Motaln, H., Župunski, V., Rogelj, B. The protein interactome of TDP-43 in ALS: A mystery still waiting to be solved. Backgorund: Amyotrophic lateral sclerosis (ALS) and frontotemporal dementia (FTD) are neurodegenerative disorders in which protein aggregates are main pathophysiological features. In almost all ALS cases (97%) and in more than 60% of FTD cases, these aggregates contain the protein TDP43 (transactive response DNA-binding protein of 43 kDa). Proteins rarely perform cellular functions individually. Rather, they are usually involved in dynamic networks in which they interact with other proteins and TDP-43 Care, communication and biomedical challenges 117 frontiersin.org is no exception. This protein plays an important role in various phases of RNA metabolism, including mRNA transport and mRNA splicing (Mihevc et al., 2017), as well as in the regulation of stress response via the formation of stress granules (Luisier et al., 2018). In these processes, TDP-43 interacts with a variety of proteins (Lee et al., 2022). Under pathological conditions TDP-43 becomes mislocalized and is the main component of pathological cytoplasmic protein aggregates (Neumann et al., 2006), thus risking alteration of the interactome. Methods To unravel the mystery of the TDP-43 interactome, we investigated the interactome of wild-type TDP-43 and TDP-43 without nuclear localization signal (ΔNLS), which mimics the pathological conditions of ALS. We established inducible mammalian cell lines stably expressing wtTDP-43 or TDP-43ΔNLS in fusion with the biotin ligase BioID2. To label the interaction partners of both TDP-43 variants, we exploited BioID2 activity. After induction of its activity, the biotinylated proteins were isolated from the cell lysates by pull-down assay. The isolated proteins were identified by liquid chromatography-mass spectrometry (LC-MS). MS analysis revealed a list of unique and common interactors of wtTDP-43 and TDP-43ΔNLS, which were validated by Western blotting, immunocytochemistry and proximity ligation assay (PLA). To determine the cellular localization and function of the newly discovered interactors, we performed bioinformatic analyses. Results The proximity-dependent biotin identification method (BioID), followed by LC-MS, showed that wtTDP-43 interacts primarily with proteins of the ribonucleoprotein and splicesome complexes and with paraspeckles, whereas the interactors of mutant TDP-43 (TDP-43ΔNLS) are components of the cytoplasmic stress granules (SG) and processing bodies (P-bodies). Further investigation of selected interacting proteins revealed that MAML1 may be a unique wtTDP-43 interactor, while SFPQ, NONO and FUS are common interactors of both TDP-43 variants, but are more abundant in the wtTDP-43 fraction. For ATXN2L and PUM1, our results showed that they are unique interactors of mutant TDP-43. 118 Care, communication and biomedical challenges frontiersin.org Discussion The protein interactions of TDP-43, both in the presence and absence of NLS, resulted in a list of interacting proteins. Some of these proteins are common to both wtTDP-43 and TDP-43ΔNLS, suggesting that TDP-43 is not the only mislocalized protein in neurodegenerative diseases such as ALS and FTD. For instance, we observed that the nuclear protein SFPQ interacts with TDP-43ΔNLS, which mimics pathological conditions. This result is consistent with the study by Luisier et al. showing that SFPQ is mislocalized to the cytoplasm in pathology (Luisier et al., 2018). This suggests that, in addition to TDP-43, several other RNA-binding proteins leave the nucleus and do not return to the nucleus to resume their normal localization and biological function. Thus, pathological mechanisms leading to ALS may involve loss of regulatory functions related to paraspeckle function and/ or transcription. The altered subcellular localization of TDP-43 in ALS has raised questions about its function since its discovery. However, it is still unknown whether the protein loses functions, acquires new ones or both under pathological conditions. In our study, we identified not only common but also unique interactors of wtTDP-43 and TDP-43ΔNLS. This implies a dual role of TDP-43 in terms of interactions in pathology - where it can both gain and lose interactions and with these functions. According to the findings of the present study, pathological mechanisms could also be associated with SG and P-bodies due to enhanced interactions of P-bodies and stressrelated proteins with mutant TDP-43ΔNLS. In addition, the novel interactors of TDP-43 identified in this study could also be involved in the aggregation mechanism or have neuroprotective effects. Conclusions This study provides important insights into the altered protein interactions of TDP-43 under pathological conditions resembling ALS and FTD. Our research has shown that both wtTDP-43 and mutant TDP-43ΔNLS interact with a distinct yet overlapping set of proteins, highlighting the complexity of the role of TDP-43 in neurodegenerative diseases. Understanding the functions of these interacting proteins could potentially pave the way for their use as therapeutic targets and biomarkers for the treatment and diagnosis of ALS. Care, communication and biomedical challenges 119 frontiersin.org References Lee, Y. B., Scotter, E. L., Lee, D. Y., Troakes, C., Mitchell, J., Rogelj, B., et al. (2022). Cytoplasmic TDP-43 is involved in cell fate during stress recovery. Hum Mol Genet 31, 166. doi: 10.1093/HMG/DDAB227 Luisier, R., Tyzack, G. E., Hall, C. E., Mitchell, J. S., Devine, H., Taha, D. M., et al. (2018). Intron retention and nuclear loss of SFPQ are molecular hallmarks of ALS. Nature Communications 2018 9:1 9, 1–15. doi: 10.1038/s41467-01804373-8 Mihevc, S. P., Darovic, S., Kovanda, A., Česnik, A. B., Župunski, V., and Rogelj, B. (2017). Nuclear trafficking in amyotrophic lateral sclerosis and frontotemporal lobar degeneration. Brain 140, 13–26. doi: 10.1093/BRAIN/ AWW197 Neumann, M., Sampathu, D. M., Kwong, L. K., Truax, A. C., Micsenyi, M. C., Chou, T. T., et al. (2006). Ubiquitinated TDP-43 in frontotemporal lobar degeneration and amyotrophic lateral sclerosis. Science (1979) 314, 130–133. 120 Care, communication and biomedical challenges frontiersin.org Comprehensive patient care, from timely diagnosis to care planning Establishing a European knowledge hub for social innovations: The case of MRRC UL SI-AHA Author Vlado Dimovski – School of Economics and Business, University of Ljubljana, Slovenia Anamarija Kejžar – Faculty of Social Work, University of Ljubljana, Slovenia Jakob Sajovic – Faculty of Medicine, University of Ljubljana, Slovenia Simon Colnar – School of Economics and Business, University of Ljubljana, Slovenia Gorazd Drevenšek – Faculty of Medicine, University of Ljubljana, Slovenia Citation Dimovski, V., Kejžar, A., Sajovic, J., Colnar, S., Drevenšek, G. Establishing a European knowledge hub for social innovations: The case of MRRC UL SI-AHA. Social innovations can be in the form of new products, actions, systems, processes, technical solutions and services that are addressing a pressing social issue and aim to improve the quality of life and societal wellbeing. A practical example of a social innovation represents the establishment of the multidisciplinary research and development center of University of Ljubljana for social innovations for active and healthy ageing. The main purpose of the center is to explore, promote and implement new solutions and modern concepts for active and healthy ageing that strive towards creating a positive attitude towards all age groups and a future of solidarity for all generations. One of its main objectives is to address most pressing issues related to the Care, communication and biomedical challenges 121 frontiersin.org trend of ageing of the global population. With the functioning of the center, we aim to enable better cooperation, enhance knowledge transfer and exchange of best practices for included stakeholders. Its long-term ambitious vision is to become a European knowledge hub in the field of active and healthy ageing. Another key pillar of its functioning is its multidisciplinary approach that acts as a catalyst for new social innovations and promotes research excellence and aims to have a positive impact on society. 128 Care, communication and biomedical challenges frontiersin.org Disorders in sensory processing that affect memory storage mechanisms Author Myrto Patagia Bakaraki, Albana Lioumi Citation Bakaraki, M.P., Lioumi, A. Disorders in sensory processing that affect memory storage mechanisms. Background Understanding the intricate relationship between sensory processing and cognitive impairments is crucial for advancing neurological rehabilitation. Sensory processing refers to the brain’s ability to interpret and organize sensory information from the environment, allowing individuals to respond appropriately. When this system is disrupted, it can lead to significant cognitive and behavioral challenges, particularly in areas like memory, executive function, and self-awareness. Sensory processing disorders not only complicate an individual’s interaction with the world but also have farreaching implications for cognitive health and daily functioning. Research in this field highlights how disruptions in sensory processing can affect brain regions essential for memory and decision-making, such as the hippocampus and frontal cortex. These disruptions often lead to diminished self-consciousness and impaired decision-making, as the brain struggles to integrate sensory inputs into coherent perceptions. Tests like the Stroop test and the Wisconsin Card Sorting Test are frequently used to assess these impairments, as they can reveal deficits in cognitive control, flexibility, and motivation. Individuals with sensory processing disorders may experience difficulties managing their behaviors, setting goals, and maintaining focus, all of which are critical for independent functioning and quality of life. Care, communication and biomedical challenges 129 frontiersin.org Moreover, recent studies have focused on the role of memory in selfawareness. Research suggests that an individual’s ability to recognize and respond to cognitive limitations depends heavily on how memory processes operate within the brain. When sensory processing is disrupted, memory consolidation and recall are often impaired, further complicating one’s ability to recognize cognitive issues. For instance, individuals with memory deficits may struggle to remember personal experiences accurately, which can lead to a fragmented sense of identity and hinder their ability to make informed decisions. This exploration into the connections between sensory processing, memory, and executive functions offers new insights into the rehabilitation of individuals affected by brain pathologies, such as traumatic brain injuries (TBIs), strokes, and neurodegenerative diseases like dementia. By understanding how sensory processing disorders impact cognitive functions and self-perception, this research seeks to inform more targeted therapeutic strategies. Ultimately, it contributes to a broader understanding of the factors that shape cognitive resilience and adaptability in the face of neurological challenges. Methods The primary focus of this research is to examine whether the dynamic relationship among memory, emotion, and decision-making plays a more critical role in personal development than a consistent emotional state with minimal reflection on past experiences. By exploring the interactions between these cognitive and emotional variables, the study aims to shed light on how they collectively influence an individual’s evolving sense of self. This inquiry has significant implications for understanding the cognitive and emotional foundations of identity, especially in the context of individuals facing neurological impairments. To approach this research question, a multifaceted methodology was designed to capture and analyze data on sensory processing, cognitive function, and emotional regulation. A range of assessment tools were selected to evaluate different aspects of cognitive and functional abilities, 130 Care, communication and biomedical challenges frontiersin.org providing a comprehensive picture of how individuals process information and engage with their environment. Key among these tools are the Trail Making Test Part A and Part B (Trail Making AB), the SDR (Speed of Decision Responding) index, and the ADL (Activities of Daily Living) questionnaire, each chosen for its relevance in assessing the targeted cognitive and functional domains. The Trail Making AB test serves as a measure of functional cognitive ability, particularly executive functions such as task switching, cognitive flexibility, and processing speed. This test is divided into two parts: Part A assesses visual attention and task-switching speed, while Part B requires participants to alternate between numbers and letters, providing a more complex assessment of cognitive control and flexibility. The results from this test offer insights into the participants’ ability to maintain focus, switch tasks efficiently, and process information under various cognitive demands—skills that are essential for daily life and decision-making. The SDR index is employed to measure the speed and responsiveness of decision-making. Given that rapid and accurate decision-making is a critical aspect of both personal safety and adaptive behavior, this metric allows researchers to observe how sensory and cognitive processing limitations impact real-time decisions. The SDR index provides a quantifiable measure of cognitive responsiveness and can indicate areas where participants may experience difficulty in decision-making under time constraints, shedding light on how sensory processing issues may delay or distort decision-making processes. In addition to these cognitive assessments, the ADL questionnaire (Activities of Daily Living) is used to evaluate the functional abilities and engagement levels of both patients and their caregivers. This questionnaire plays a dual role: it assesses the daily living capabilities of individuals with cognitive impairments, while also capturing caregiver perspectives on the functional limitations they observe. The ADL questionnaire is particularly useful in this study for detecting early signs of dementia and tracking the progression of functional decline. By incorporating both self-reports from patients Care, communication and biomedical challenges 131 frontiersin.org and proxy reports from caregivers, the research gathers a holistic view of daily functioning, capturing subjective experiences alongside objective assessments. The ADL questionnaire also enables researchers to examine caregiver burden and perspective, as caregivers are often the first to notice subtle changes in cognitive or functional ability. The questionnaire distinguishes between two types of reports: self-reports from the individuals themselves, which provide insight into their perceived abilities, and proxy reports from caregivers, who offer a third-person perspective on daily functioning. This dual-reporting approach not only enriches the data but also highlights discrepancies between patients’ self-perception and observed reality, offering deeper insights into cognitive decline and sensory processing disruptions. To ensure the reliability and validity of these tools, preliminary pilot studies were conducted across a diverse sample of adults, including individuals with neurological impairments such as dementia, post-stroke symptoms, and traumatic brain injuries. Participants underwent testing over 2-3 sessions, depending on their cognitive abilities, with no more than a six-month interval between assessments. This approach allowed the research team to refine the assessment protocols and ensure that they captured a range of functional and cognitive outcomes relevant to the study’s objectives. Data analysis in this study involves both quantitative and qualitative approaches. Quantitative data from the Trail Making AB test and SDR index are statistically analyzed to determine relationships between sensory processing, cognitive responsiveness, and executive function. Qualitative data from the ADL questionnaire are also analyzed to explore themes in caregiver burden, patient engagement, and the effects of sensory processing disorders on daily life and self-perception. Overall, this methodology offers a comprehensive framework for exploring the complexities of sensory processing disorders, providing a robust data set to examine how memory, emotion, and decision-making contribute to self-identity and functional independence. By integrating cognitive testing 132 Care, communication and biomedical challenges frontiersin.org with functional assessments, this research aims to generate a nuanced understanding of the challenges faced by individuals with sensory processing impairments and to inform targeted interventions in clinical practice. Research This study utilized a rigorous, multi-phase research design to ensure comprehensive data collection and validity of the measurement tools. The development and refinement of these tools involved pilot studies conducted with a diverse sample of adults, including individuals with neurological impairments, to confirm the accuracy and relevance of the assessments. These pilot studies served as a preliminary phase to test the reliability of the Trail Making AB test, the SDR (Speed of Decision Responding) index, and the ADL (Activities of Daily Living) questionnaire. Participants in the pilot studies came from varied backgrounds and clinical conditions, allowing the research team to evaluate the effectiveness of these tools across a broad spectrum of cognitive and functional abilities. Participants in the main study were assessed over 2-3 sessions, depending on their cognitive competence and capacity to complete the tests. Each session was designed to accommodate individual differences in stamina and cognitive endurance, especially given the challenges faced by those with neurocognitive disorders. A maximum six-month interval was maintained between the final assessments to minimize the influence of time-related changes in cognitive function, thereby capturing a more stable and accurate representation of each participant’s abilities. This approach was essential for understanding how sensory processing and cognitive impairments interact over time and ensuring consistency across assessments. Data collection was conducted at multiple medical centers and hospitals throughout Attica, allowing for a broad sample that included patients diagnosed with dementia, individuals recovering from strokes, and those with traumatic brain injuries. These diverse clinical settings facilitated access to a range of participants with varying levels and types of cognitive impairments, providing valuable insights into how sensory processing disorders manifest across different neurological conditions. By incorporating respondents Care, communication and biomedical challenges 133 frontiersin.org from multiple facilities, this study aimed to achieve a high degree of representativeness and generalizability in its findings, which is essential for informing future clinical interventions. Inclusion criteria for participants were carefully defined to ensure that the study’s findings would be applicable to specific neurological populations. All participants were required to meet established diagnostic criteria to qualify for the study, ensuring a consistent baseline for comparison across conditions. Specifically, the inclusion criteria were based on the DSM-IV (Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition) for diagnosing cognitive and sensory processing disorders, and the NINCDSADRDA (National Institute of Neurological and Communicative Disorders and Stroke and the Alzheimer’s Disease and Related Disorders Association) guidelines. These criteria, developed by the National Institute of Neurological Disorders and Stroke (NINDS) and the Alzheimer’s Disease and Related Disorders Association, provided a standardized framework for diagnosing dementia and related disorders. By adhering to these widely recognized guidelines, the study ensured that participants were accurately diagnosed, thereby enhancing the reliability and relevance of the findings. Throughout the study, extensive data were collected on each participant’s cognitive performance, sensory processing capabilities, and daily functional abilities. The Trail Making AB test provided quantitative data on cognitive flexibility and processing speed, particularly in terms of executive function, while the SDR index measured responsiveness in decision-making. The ADL questionnaire, completed by both patients and their caregivers, provided qualitative insights into daily living challenges, caregiver burden, and the functional impact of sensory processing issues. The combination of these tools allowed for a multi-dimensional analysis of how sensory processing disorders affect cognitive function and day-to-day activities. This research design also accounted for the subjective experiences of both patients and caregivers, recognizing the importance of capturing not only measurable cognitive outcomes but also the lived experiences of those dealing with sensory processing and cognitive impairments. Caregivers 134 Care, communication and biomedical challenges frontiersin.org provided proxy reports, offering an external perspective on functional decline and behavioral changes, while patients provided self-reports where possible, allowing the study to capture any discrepancies between perceived and observed abilities. This dual-reporting method enriched the dataset and offered a nuanced understanding of the impact of sensory processing disorders on both individuals and their caregivers. The extensive dataset collected in this study provides a robust foundation for analyzing the interplay between sensory processing, cognitive function, and emotional regulation. By exploring these complex relationships in a diverse sample of patients, this research contributes valuable insights into how sensory processing disorders influence memory, decision-making, and the overall sense of self. The findings are expected to inform clinical approaches in neurological rehabilitation, particularly for individuals affected by dementia, stroke, and brain injuries, offering new avenues for intervention that address both cognitive and functional impairments. Results Impact of Processing Disorders on Cognitive Function and Identity The study found that processing disorders significantly disrupt memory consolidation. Sensory processing issues were shown to inflame the progression of dementia. Recovery rates among post-stroke patients varied depending on the severity of their sensory processing disorders. Individuals with traumatic brain injuries exhibited significant improvements in cognitive function and memory when engaged in occupational therapy programs emphasizing sensory processing and integration. Role of Sensory Integration and Executive Functions The study highlighted the critical role of the hippocampus in merging and interpreting incoming stimuli. Sensory processing disorders can disrupt this function, leading to cognitive and memory impairments. Enhancing sensory data utilization improves interaction with the environment and overall cognitive functioning. The frontal lobe’s role in combining information Care, communication and biomedical challenges 135 frontiersin.org from various brain regions is crucial for goal-directed behavior. Disruptions in sensory processing can impact these executive functions. Tools like the Stroop test and the Wisconsin Card Sorting Test were effective in evaluating executive functions and identifying cognitive deficits related to brain pathology. ADL Assessment Tool and Identity The ADL questionnaire measures functional abilities and levels of engagement in both patients and their caregivers. It helps in early detection of dementia and assessing the functional decline. The study used both self-reports from patients and proxy reports from caregivers to gather comprehensive data on functional decline and caregiver burdens. The ADL assessment tool was found effective in monitoring daily functioning, providing insights and understanding the impact on caregiver responsibilities. The study explored the dynamic relationship between memory, emotion, and decision-making. It suggests that these factors significantly influence personal development and identity formation. Processing disorders such as dementia, strokes, and TBIs impact a person’s identity and self-perception. Occupational therapy intervention scan help individuals maintain their sense of self despite cognitive challenges. Discussion The findings from this study underscore the significant impact of sensory processing disorders on cognitive functions, particularly memory and executive processes. Disruptions in sensory integration, such as those affecting the hippocampus and frontal lobe, can impair memory consolidation and goal-directed behavior, leading to broader cognitive deficits. Tools like the Stroop test and the Wisconsin Card Sorting Test proved valuable in identifying these deficits, offering insights into the degree of impairment and informing clinical decisions. Additionally, the study highlights the importance of early identification and intervention in managing sensory processing disorders in populations with dementia, cerebrovascular events, and traumatic brain injuries (TBIs). Utilizing 136 Care, communication and biomedical challenges frontiersin.org tools like the ADL questionnaire not only helps assess functional abilities but also provides valuable information for caregivers, allowing a better understanding of daily challenges and caregiver burden. The potential for occupational therapy interventions to mitigate these deficits is promising. Therapeutic approaches that emphasize sensory integration could help individuals with TBIs or post-stroke conditions improve cognitive functioning and retain a sense of self, despite the cognitive challenges they face. However, there remains a need for further research to refine these interventions, exploring their long-term effects and efficacy across diverse patient populations. Future studies should delve into the dynamic relationships among memory, emotion, and decision-making, particularly in how they affect personal identity and self-perception. Expanding on this research could yield deeper insights into how sensory processing disorders alter self-awareness and motivation, thus informing therapeutic strategies that foster personal development and well-being in individuals with neurological impairments. Care, communication and biomedical challenges 137 frontiersin.org AI applied to neurodegenerative diseases: opportunities and challenges Author Špela Glišović Krivec – Institute Everykind, education about nature and health, Slovenia David Krivec – Institute Everykind, education about nature and health, Slovenia Tomaž Hitij – Faculty of Medicine, University of Ljubljana, Slovenia; Institute for Palaeobiology and Evolution, Slovenia Luka Hočevar – Faculty of Medicine, University of Ljubljana, Slovenia Martina Drevenšek – Faculty of Medicine, University of Ljubljana, Slovenia Jakob Sajovic – University Medical Centre Ljubljana, Slovenia Gorazd Drevenšek – Faculty of Medicine, University of Ljubljana, Slovenia Citation Krivec, Š.G., Krivec, D., Hitij, T., Hočevar, L., Drevenšek, M., Sajovic, J., Drevenšek, G. AI applied to neurodegenerative diseases: opportunities and challenges. Background Neurodegenerative diseases (NDDs) usually have long prodromal periods and identifying the risk factors is crucial for early intervention and for delaying the disease onset. Researchers already use data-driven approaches with Artificial Intelligence (AI) for NDDs assessment and prediction. The origins of industrial AI dates back to the 1950s and AI with demonstrable medical applications began in the 1970s. The modern era of AI began in the early 2000s with its applications to healthcare and daily living. Besides being used in clinical settings, and as AI also allows the acquisition of information outside of physician-patient encounters, it is offering real-world, continuous data that can support decision-making and treatment. With the increasing adoption of wearables, improvements in gene sequencing, electronic health records implementation, etc., the health space encounters individual healthcare data 144 Care, communication and biomedical challenges frontiersin.org Conclusions As we are all creatures of habits, we are including simple steps for behaviour changes in everyday life of people with risk or with NDD, and developing approaches that will support people in managing oral hygiene, social and physical activity and thus support them in comfort ageing. We also tackle the ageing and age-related NDDs framing with approach that each person shall continue to live well, with an active and healthy life; staying involved in a social network; taking care of own self, educate and stay curious, and accept the individual process of ageing. Care, communication and biomedical challenges 145 frontiersin.org Community health and care services A hidden agenda: dementia as a risk factor for interpersonal violence Author Nena Kopčavar Guček – Community Healthcare Center of Ljubljana and Medical Faculty, University of Ljubljana Citation Guček, N.K. A hidden agenda: dementia as a risk factor for interpersonal violence. Background Interpersonal violence is a multifaceted issue with numerous contributing factors, among which cognitive impairments like dementia are emerging as significant but underexplored. Dementia, a progressive neurodegenerative disorder characterized by cognitive decline and behavioral changes, can increase the risk of aggressive behaviors and violence, posing threats to both patients and their caregivers. This abstract delves into the nexus between dementia and interpersonal violence, outlining the epidemiology, underlying mechanisms, risk factors, and preventive strategies. Content Dementia affects millions worldwide, predominantly in the elderly population. As cognitive faculties deteriorate, patients may exhibit a range of behavioral and psychological symptoms of dementia (BPSD), including aggression, agitation, and paranoia. These symptoms can escalate to violent behaviors, creating hazardous situations within domestic settings, healthcare facilities, and the community. The prevalence of violence in dementia patients varies widely, with studies indicating that 20-50% of individuals with dementia may exhibit aggressive behaviors at some point. 146 Care, communication and biomedical challenges frontiersin.org Such violence can manifest as verbal threats, physical assaults, or even sexual aggression, significantly impacting the safety and well-being of caregivers, family members, and the patients themselves. On the other side, patients with dementia can be victims of violence, and they are unable to relay the information to the authorities. While a standardized definition of elder abuse is still lacking, the most often reported forms of abuse are physical abuse, sexual abuse, financial/material abuse, and neglect/abandonment. The WHO and several scientific experts are now urging for a consensus on definitions, subtypes, and categorization as well as research methods on the topic. Data and studies on elder abuse and the understanding of the phenomenon are still quite limited; a recent meta-analysis tried to estimate the scale of the problem and indicated a combined prevalence for overall elder abuse in the past year between 14.3% and 15.7%, psychological abuse being the most common form both in community and residential settings. In Slovenia, 18% of all cases of violence reported the social care and the police including elderly citizens. The pathophysiology of dementia-related violence is complex, involving neurobiological, psychological, and environmental factors. Neurobiological changes in brain regions associated with impulse control, such as the frontal lobes and limbic system, are implicated. Psychologically, patients may experience confusion, fear, and frustration due to their cognitive decline, leading to defensive or reactive aggression. Environmental triggers, such as overcrowding, noise, and caregiver stress, can exacerbate these behaviors. Several risk factors heighten the likelihood of violence in dementia patients. These include the severity and type of dementia, with Alzheimer’s disease, frontotemporal dementia, and Lewy body dementia showing higher associations with aggressive behaviors. Comorbid psychiatric conditions like depression and anxiety, a history of prior violent behavior, and substance abuse further increase this risk. The caregiving environment also plays a pivotal role; understaffing, lack of training, inadequate support, and high-stress levels among caregivers are significant contributors to violent incidents. Care, communication and biomedical challenges 147 frontiersin.org Discussion Addressing the issue of dementia-related violence requires a multifaceted approach. Early identification and management of BPSD are crucial. Pharmacological treatments, including antipsychotics, mood stabilizers, and antidepressants, are commonly used but must be carefully monitored due to potential side effects and ethical considerations. Non-pharmacological interventions, such as cognitive-behavioral therapy, environmental modifications, and caregiver education, have shown promise in reducing aggression. Tailored care plans that incorporate personalized strategies to manage triggers and stressors can significantly mitigate the risk of violence. Caregiver support is paramount in managing dementia-related violence. Training programs focusing on deescalation techniques, communication skills, and stress management can empower caregivers to handle challenging behaviors more effectively. Support groups and respite care services provide much-needed relief and reduce caregiver burnout, which is often a precursor to violent incidents. Healthcare systems must also prioritize resources and policies that support the safe and humane care of dementia patients, including sufficient staffing, appropriate training, and accessible mental health services. Non-governmental organizations, such as Alzheimer Slovenia, offer educational and support groups for caregivers as well as counseling and safe points for people with dementia. Research into dementia and interpersonal violence remains limited, with a need for more comprehensive studies to better understand the epidemiology and mechanisms involved. Longitudinal studies tracking the progression of dementia and associated violent behaviors can provide insights into critical intervention points. Additionally, exploring the efficacy of various therapeutic approaches in diverse populations can help develop best practices for managing BPSD. Public awareness campaigns are essential to destigmatize dementia and educate the community about the potential for violence and the importance of supportive care. Policymakers must recognize the impact of dementiarelated violence on public health and allocate resources to address this 148 Care, communication and biomedical challenges frontiersin.org growing issue. Integrating dementia care into broader violence prevention strategies can enhance the safety and quality of life for both patients and caregivers. Conclusion Dementia is a significant risk factor for interpersonal violence, driven by complex neurobiological, psychological, and environmental factors. Understanding and addressing this risk requires a holistic approach encompassing early intervention, comprehensive caregiver support, and ongoing research. By fostering a supportive and informed care environment, the safety and well-being of individuals with dementia and those around them can be significantly improved. Care, communication and biomedical challenges 149 frontiersin.org Student nurses’ knowledge and attitudes towards dementia care: A systematic review Author Maliga Wijesiri – Department of Nursing and Midwifery, Faculty of Allied Health Sciences, General Sir John Kotelawala Defence University, Sri Lanka Thilini Weerasingha – Department of Nursing, Faculty of Allied Health Sciences, University of Peradeniya, Sri Lanka Nimantha Karunathilaka – Department of Nursing and Midwifery, Faculty of Allied Health Sciences, General Sir John Kotelawala Defence University, Sri Lanka Sarath Rathnayake – Department of Nursing, Faculty of Allied Health Sciences, University of Peradeniya, Sri Lanka Citation Wijesiri, M., Weerasingha, T., Karunathilaka, N., Rathnayake, S. Student nurses’ knowledge and attitudes towards dementia care: A systematic review. Background Dementia is a global health problem. Providing care for people with dementia is challenging since they present with other comorbidities, declining functional and cognitive abilities and personality deterioration. Nurses should have good knowledge and attitudes toward the provision of care for people with dementia. This study aims to synthesise evidence related to the knowledge and attitudes of nursing students toward dementia care. Methods This is an ongoing systematic review. The study protocol was registered on the PROSPERO website (PROSPERO ID: CRD42023476123). Five electronic databases were searched; PubMed, MEDLINE, CINAHL, Web of Science 150 Care, communication and biomedical challenges frontiersin.org and PsycINFO. This review included peer-reviewed, full-text English journal articles published from 2013 to 2023 on knowledge and attitudes toward dementia care among nursing students. Rayyan data management software was used for reference management, and duplications were removed. A two-stage approach involving three independent researchers selected relevant papers. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guideline was followed in the screening process. Jonna Briggs Institute (JBI) critical appraisal tools were used to assess the methodological quality of selected articles. Results The search found 3848 articles. Following the removal of duplicates (n=1037), 2811 articles were entered for the screening (ti/ab). Following the ti/ab screening, 2775 articles were excluded and 36 articles were selected for the full-text screening. Finally, 6 cross-sectional studies, 5 quasiexperimental studies and one cohort study were included. The kappa value for the full-text screening was 0.709. Information about all included studies was extracted to an Excel sheet, including author, year, country, the aim of the study, study design, study setting, population characteristics, sample size, data collection instruments, and main outcomes. The tools used to assess dementia care knowledge included Dementia Knowledge Assessment Tool 2 (DKAT 2) (n=3), Dementia Knowledge Assessment Scale (DKAS) (n=1), Alzheimer’s Disease Knowledge Scale (ADKS) (n=3), UJA-Alzheimer’s Care Scale (n=1) and Dementia Knowledge Questionnaire (n=1). In the assessment of attitudes towards dementia, the Dementia Attitudes Scale (DAS) (n=6) and Attitudes to Dementia Questionnaire (ADQ) (n=2) were used. Based on the cross-sectional studies, lower and moderate levels of knowledge and attitude mean scores among student nurses towards dementia care were found. One study compared the knowledge and attitude scores within different educational backgrounds working in various geriatric settings and found that the student nurses’ overall knowledge and attitudes were at a lower level when compared to nurse practitioners. Concerning attitudes, one study found that 100% of the students reported positive attitudes towards people with dementia. Furthermore, the nursing students reported low confidence in aspects of medication-related care and a lack of confidence and frustration Care, communication and biomedical challenges 151 frontiersin.org in working with patients with dementia due to a lack of knowledge and experience. In quasi-experimental studies, the main approach used was the pre-test and post-test design to test the effect of supportive aged care placement, critical reflection opportunities, and different educational exposures and experiences. The results showed that nursing students had poor knowledge of dementia before interventions and their knowledge level was significantly improved after participation in supported clinical placements at residential aged care facilities. Students were more comfortable and demonstrated a gain in knowledge after these interventions than the comparative groups. Sociodemographic factors such as gender, year of study, seniority in nursing, having a family member with dementia, having prior education about dementia, practical experience in clinical placements, and a higher level of education on dementia care were significantly associated with higher knowledge levels whereas having sufficient knowledge of dementia and prior exposure to offering care to a person with dementia associated with attitudes scores towards dementia care. Discussion This systematic review synthesised information related to knowledge and attitudes towards dementia care among nursing students and outlined basic steps such as article search, screening, and quality appraisal of the selected articles. Furthermore, the summary of the findings of three types of research studies such as cross-sectional, quasi-experimental and cohort studies highlighted the importance of the comprehensive approach to support student nurses towards caring for people with dementia. The next steps should involve checking the heterogeneity for possible meta-analysis. Conclusion Nursing students show relatively poor or moderate levels of knowledge and positive, moderately positive and lower levels of attitudes toward dementia care. The factors associated with dementia knowledge among students were sociodemographic factors, prior experience working with dementia persons, and having more education and clinical training. The factors associated with 152 Care, communication and biomedical challenges frontiersin.org attitudes toward dementia care were having more knowledge of dementia and prior exposure to work with persons with dementia. Interventions such as aged care placement, different types of educational exposures and clinical experience can significantly improve the knowledge and attitudes towards dementia among nursing students. Updating nursing curricula is essential. Including dementia clinical placements in nursing student training is recommended. Care, communication and biomedical challenges 153 frontiersin.org Perceived level of knowledge related to the neurodegenerative diseases and care among Sri Lankan healthcare professionals, educators and undergraduates Author Pramudika Kariyawasa, Nirmala Rathnayake, Bimba Wickramarachchi, Thamudi Sundarapperuma, Kumari De Silva – Department of Nursing, Faculty of Allied Health Sciences, University of Ruhuna, Sri Lanka Citation Kariyawasa, P., Rathnayake, N., Wickramarachchi, B., Sundarapperuma, T., Silva, K.D. Perceived level of knowledge related to the neurodegenerative diseases and care among Sri Lankan healthcare professionals, educators and undergraduates. Background The demographic shift of the growing elderly proportion in Sri Lanka contributes to the rising prevalence of neurodegenerative diseases (NDD). Comprehensive knowledge of NDD among healthcare professionals is important to ensure optimal care for affected individuals. Objective To assess the perceived level of knowledge related to NDD and care. Methods A cross-sectional study was conducted among 150 healthcare professionals, educators and students. The perception of self-knowledge was assessed 256 Care, communication and biomedical challenges frontiersin.org responsiveness correlates with the progression of dementia, as assessed by ADAS-Cog. Methods The study involved 19 female participants from a nursing home, ranging in age from 74 to 97, who were diagnosed with Alzheimer’s dementia. Pupillometric data were collected while subjects listened to familiar and unfamiliar musical pieces in both vocal and instrumental forms. The ADASCog scale was used to assess the severity of dementia symptoms among the participants. Results Results indicated that familiar music prompted greater pupil dilation compared to unfamiliar music, suggesting a higher level of engagement or physiological response. However, no significant correlation was found between pupil responsiveness and dementia progression as measured by the ADAS-Cog scale. The data did not show significant differences in pupil response between vocal and instrumental music. However, surprising correlations between responses to familiar and unfamiliar music, regardless of vocality, were observed. Responses to familiar music were significantly correlated to each other, as were the responses to unfamiliar music, but no familiar-unfamiliar correlation in pupil response was observed. Discussion The study suggests that familiar music could be more effective in eliciting physiological responses in dementia patients, potentially aiding in therapeutic interventions. Although the pupil response did not correlate with the severity of dementia, the influence of music on patient responsiveness was evident, underscoring the potential of musical interventions in the care and stimulation of individuals with dementia. Furthermore, the separation in correlations between pupil responses to familiar and unfamiliar music perhaps reflect the separate cognitive systems underlying stimuli salience and orientation. Care, communication and biomedical challenges 257 frontiersin.org Conclusion Familiar music has a pronounced impact on physiological responses in dementia patients, which could inform future therapeutic practices. However, further research with a larger sample size and more varied musical genres may provide deeper insights into the mechanisms through which music affects individuals at different stages of dementia. Future Directions Future studies could expand the range of musical stimuli and explore the long-term effects of regular musical engagement on dementia progression and quality of life. 258 Care, communication and biomedical challenges frontiersin.org The Impact of oral health indicators on cognitive function in elderly populations (A study on ADAS scores and oral health) Author Gregor Gros – Faculty of Medicine, University of Ljubljana, Slovenia Eva Veršič – Faculty of Medicine, University of Ljubljana, Slovenia Jakob Sajovic – Faculty of Medicine, University of Ljubljana, Slovenia; Department of Orthodontics, University Medical Centre Ljubljana, Slovenia Martina Drevenšek – Faculty of Medicine, University of Ljubljana, Slovenia Citation Gros, G., Veršič, E., Sajovic, J., Drevenšek, M. The Impact of oral health indicators on cognitive function in elderly populations (A study on ADAS scores and oral health). Background Cognitive decline in the elderly population is a growing concern. In Slovenia, there are approximately 40.000 people currently living with dementia. By 2030, we expect this number to rise by 1-2% (Lovrečič et al., 2020). The strain on healthcare institutions, carers and the broader society thus necessitates finding new strategies for managing patients, alleviating symptoms, early detection and prevention of the development of dementia (Lovrečič et al., 2020). Especially in Alzheimer’s disease (AD), microbiota was recently uncovered, as a promising biomarker and/or a potential mediating factor on the development and progression of the disease[2,3]. Poorer oral health, the loss of mastication ability suppressing the mastication-related brainderived neurotrophic factor release, loss of oral micriobiome biodiversity and associated pro-inflammatory responses that weaken the blood-brain barrier Care, communication and biomedical challenges 259 frontiersin.org are proposed as possible links between oral health and the oral microbiome (Orr et al, 2020; Wu et al., 2021). Increased plaque occurrence was also tied to a greater risk for development of AD[2,3]. Yet this area is still poorly researched (Orr et al, 2020; Wu et al., 2021), thus this study aimed to explore how age, plaque occurrence, the presence of teeth and the number of own teeth relate to cognitive performance in the elderly, as assessed by the Alzheimer’s Disease Assessment Scale (ADAS). Methods The study included 25 elderly individuals aged 72 to 99, 16 of whom had their own teeth. A standard clinical dental examination was carried out, with the number of remaining teeth, plaque occurrence, bleeding occurrence and the depth of periodontal sockets was measured. The ADAS was carried out and the cognitive subdomain scores were collected, with the data collection protocol being carried out in residential care facilities where the elderly participating in the study lived. A linear multivariate regression model was used to analyze the obtained data, with the ADAS-cog serving as the predicted variable. All the other variables that fit the criteria for inclusion in the model (e.g. variance inflation factor < 10; no positive tableplot collinearity diagnostic; model has normal standardized residuals; Durbin-Watson statistic between 1.5 and 2.5) were used as the predictors, namely age, the number of remaining teeth, whether the participant has any own teeth remaining (categorical) and plaque occurrence. Results The analysis showed that the model was better than null, with a significant amount of explained variance (14.3%, p=0.043). Age (β2 = 1.585, SE = 0.489, p = 0.004) and plaque occurrence (β2 = 0.287, SE = 0.107, p = 0.015) were found to be significantly associated with cognitive impairment. Conversely, the presence and the number of remaining own teeth showed no significant effect on cognitive function. Discussion We confirm previous results showing a significant association between plaque occurrence and cognitive impairment. Mechanisms of action for 260 Care, communication and biomedical challenges frontiersin.org this association should be studied in depth and, should they prove at all causative, new prevention strategies should be implemented, that focus on maintaining good oral health. Future studies should explore microbial profiles in connection with cognitive decline or use clustering strategies to uncover micrbiome changes related to AD. The results of the present study and previous findings of oral health and AD severity connection should be rigorously verified. Conclusion Plaque occurrence may be associated with AD severity. More studies are needed to explore this finding. References Lovrečič, B., Jelenc, M., Korošec, A., Vidovič, M., Lovrečič, M. (2020). The Prevalence of Dementia in Europe and in Slovenia: The Review and Estimate of Dementia for Slovenia for 2018 and Projection for 2030. Coll. Antropol. 44, 55–60. Orr, M.E., Reveles, K.R., Yeh, C.K., Young, E.H., Han, X. (2020). Can oral health and oral-derived biospecimens predict progression of dementia? Oral Dis. 26, 249–58. Wu, Y.F., Lee, W.F., Salamanca, E., Yao, W.L., Su, J.N., Wang, S.Y., et al. (2021). Oral Microbiota Changes in Elderly Patients, an Indicator of Alzheimer’s Disease. Int. J. Environ. Res. Public Health, 18, 4211. Care, communication and biomedical challenges 261 frontiersin.org Public health promotion and communication Exploring the health and quality of life of older adults Author Simon Colnar – School of Economics and Business, University of Ljubljana, Slovenia Gorazd Drevenšek – Faculty of Medicine, University of Ljubljana, Slovenia Anamarija Kejžar – Faculty of Social Work, University of Ljubljana, Slovenia Jakob Sajovic – Faculty of Medicine, University of Ljubljana, Slovenia Vlado Dimovski – School of Economics and Business, University of Ljubljana, Slovenia Citation Colnar, S., Drevenšek, G., Kejžar, A., Sajovic, J., Dimovski, V. Exploring the health and quality of life of older adults. Background In times of an ageing population, we explore older individuals’ satisfaction with their general health and quality of life. The rising share of older adults has further enhanced the need to gain in-depth knowledge on how to maintain or improve the health of older adults. In a similar vein, ageing of the population has increased the necessity to ensure that older adults are able to live independently and enjoy a good quality of life. In our research, we propose that factors of physical health, experiencing of life, relationships with other people, the environment and nutritional habits can have a significant impact on an individual’s satisfaction with their general health and quality of life. 262 Care, communication and biomedical challenges frontiersin.org Results Our sample consists of 105 residents of the Republic of Slovenia who belong to the age group of 65+ years and provided quantitative and qualitative responses based on previously validated measurement scales. Results were obtained with statistical analysis of quantitative data and thematic analysis of qualitative data regarding factors that potentially influence general health and quality of life of older adults. Conclusions With our research we are able to provide concrete theoretical and practical contributions that can positively influence the active and healthy ageing process of older adults. Care, communication and biomedical challenges 263 frontiersin.org Communication strategies for neurodegenerative disorders Author Bimba Wickramarachchi; – Faculty of Allied Health Sciences, University of Ruhuna, Sri Lanka Citation Wickramarachchi, B. Communication strategies for neurodegenerative disorders. Neurodegenerative diseases such as Alzheimer’s, Parkinson’s, and Huntington’s significantly impact patients’ communication abilities due to the progressive deterioration of brain functions. Initially, patients may experience mild impairments that do not heavily impact daily communication. However, as the diseases progress, severe communication challenges arise, including cognitive-communication impairments, aphasia, dysarthria, and apraxia. Each condition uniquely affects speech, language comprehension, motor skills, and cognitive functions, making it difficult for patients to express themselves and understand others, ultimately reducing their quality of life. Effective communication strategies are crucial to support these patients. Techniques such as offering simple instructions, allowing time for responses, avoiding difficult language, and using non-verbal cues can greatly assist. Augmentative and Alternative Communication (AAC) methods, ranging from no-tech options like gestures and sign language to high-tech solutions like speech-generating devices, play a vital role in facilitating communication. AAC ensures that patients can maintain functional communication, participate in daily activities, and stay connected with their surroundings despite their impairments. 264 Care, communication and biomedical challenges frontiersin.org Healthcare professionals must be trained to recognize communication deficits and assist patients in selecting and using appropriate communication aids. Socio-economic and cultural factors, such as the cost of devices and social acceptance, must also be considered to ensure the effective use of AAC systems. By optimizing communication, these strategies aim to enhance the quality of life for individuals with neurodegenerative disorders, enabling them to express their needs, maintain their social roles, and preserve their mental and social well-being. Care, communication and biomedical challenges 265 frontiersin.org Huntington’s disease: A key part of neurodegenerative disease care education Author Stephen Smith – Workforce Training and Education Directorate, NHS England, East of England Citation Smith, S. Huntington’s disease: A key part of neurodegenerative disease care education. Background Designing and developing an education programme for those giving day to day care for people with a neurological disorder, whether in an informal or professional role, poses the problem of deciding which of the many conditions to highlight. There are more than 600 neurological diseases, including genetic conditions, developmental disorders, physical injuries to the brain and spinal cord, mental health conditions, tumours, infections, cerebrovascular disease and neurodegenerative disorders (Garcia and Bustos, 2018). It is not feasible to address all of these in any course. Even in programmes focused on neurodegerative disorders (NDDs), it is not realistic to cover all diagnoses in any depth. Care models are often tailored to a specific condition such as AD or PD, yet there is significant overlap in care needs across various diagnoses (van de Marck et al., 2019). Many developers avoid a diagnosis-orientated approach to course design, preferring to structure content around generic issues (for example, movement disorder, 272 Care, communication and biomedical challenges frontiersin.org Results The majority of caregivers had limited awareness of dementia. Caregivers attributed diverse meanings to dementia signs and symptoms, its causes and role of caregiving. Caregivers’ low levels of knowledge and dementia awareness as well as contextual and religious beliefs appeared to have an association with the attributed meanings. The illness perceptions ranged from not recognising the behavioural and psychological symptoms of dementia (BPSD) as relating to an illness, perceiving forgetfulness as a ’normal’ part of ageing, denial of BPSD (e.g. deliberate actions of PwD). Most of the caregivers identified and labelled the BPSD as ‘madness’, ‘a mental illness’, or ‘an illness caused by neuronal death or injury’ while only three caregivers could name the condition as dementia. Co-occurring factors such as lifestyle of PwD, chronic physical or psychological illnesses, and stressful and traumatic life events such as loneliness or death of a family member were considered as main causations for onset of dementia. Caregivers drew on a range of religious or culturally accepted concepts to explain the cause of dementia. such as, ‘Karma’, ‘sins and merits’, ‘God’s wish’, ‘bad stars or fate’, ‘astrological misalignment of the living environment’, ‘possession of supernatural spirits’, or ‘witchcraft’. The themes of connectedness, engagement and ‘awakening’ predominantly represented the positive experiences of caregiving, while the themes of control, stigma, blame and shame and represented the negative aspects. Caregivers experienced a significant sense of burden of care due to the influence of extended family and wider social context when compared to actual caregiving activities. Alternative traditional healing methods were widely practised, as first-line and sole treatment for dementia or as a complementary treatment along with western medical treatments. Experience of burden was often driven by either caregiving activities with PwD or the wider socio-cultural context. Discussion Findings revealed that the caregivers’ personal values, beliefs, attitudes, socio-cultural and religious views largely influenced the conceptualisation of meanings of dementia and their caregiving role. The caregivers undergo Care, communication and biomedical challenges 273 frontiersin.org a transformation of their perceptions and experience along the journey of caregiving. This includes creating new meanings to role of caregiving, as well as transformation of the self. Acceptance of ‘caregiving career’, being committed to full time caregiving and learning to cope was demonstrated through a Buddhist way of thinking. Conclusions The findings highlight the importance of increasing dementia awareness in the study context and developing facilities and health care services to support PwD and their family caregivers through an integration of western medical care model and traditional or complementary care models. There is an increasing need to address the socio-culturally sensitive care pathways ways of dementia management, with particular emphasis on providing longterm, home-based care. 274 Care, communication and biomedical challenges frontiersin.org Perceived level of knowledge related to the neurodegenerative diseases and care among Sri Lankan healthcare professionals, educators and undergraduates Author Pramudika Kariyawasam, Nirmala Rathnayake, Bimba Wickramarachchi, Thamudi Sundarapperuma, Kumari De Silva – Department of Nursing, Faculty of Allied Health Sciences, University of Ruhuna, Sri Lanka Citation Kariyawasam, P., Rathnayake, N., Wickramarachchi, B., Sundarapperuma, T., Silva, K.D. Perceived level of knowledge related to the neurodegenerative diseases and care among Sri Lankan healthcare professionals, educators and undergraduates. Background The demographic shift of the growing elderly proportion in Sri Lanka contributes to the rising prevalence of neurodegenerative diseases (NDD). Comprehensive knowledge of NDD among healthcare professionals is important to ensure optimal care for affected individuals. Objective To assess the perceived level of knowledge related to NDD and care. Methods A cross-sectional study was conducted among 150 healthcare professionals, educators and students. The perception of self-knowledge was assessed Care, communication and biomedical challenges 275 frontiersin.org using a pre-tested questionnaire with 24 items which consist 10 point Likert scale starting from uncertain to outstanding. Data was analyzed using descriptive statistics and Chi-square test. Results Mean age (SD) of the participants was 29.8 (8.3) and the two third of the participants were females (64.5%). The basic knowledge related to the NDDs was above average among 69.1% (n=103) participants. Overall knowledge on NDD and relevant care was above the average level among 65.3% (n=98) of the participants. More than 50% of the respondents rated their knowledge above average for all the statements provided to assess knowledge on NDDs. Level of education and the discipline of study were significantly associated with the overall knowledge on NDD care (p<0.05). Those who had achieved a high level of education background and educators had a high level of perception on self-knowledge. Conclusion The study results highlight the need to implement an educational programme to enhance knowledge and NDD care. Inter-professional educational programmes will be important to improve the multidisciplinary care that should be provided for patients with NDDs. 276 Care, communication and biomedical challenges frontiersin.org Perspectives of stakeholders on developing a masters degree in neurodegenerative disease care for healthcare workers in sri lanka-a qualitative study Author Thamudi Sundarapperuma, Nirmala Rathnayake, Bimba Wickramarachchi, Pramudika Kariyawasam, Kumari De Silva; – Department of Nursing, Faculty of Allied Health Sciences, University of Ruhuna, Sri Lanka Citation Sundarapperuma, T., Rathnayake, N., Wickramarachchi, B., Kariyawasam, P., Silva, K.D. Perspectives of stakeholders on developing a masters degree in neurodegenerative disease care for healthcare workers in sri lanka-a qualitative study. Background Neurodegenerative disorders (NDD) are an emerging health trend around the globe. Providing care for patients with NDD is a challenge for all healthcare workers. Introducing a new master’s degree program would be a promising initiative. To achieve the optimum success of the program, real-life challenges need to be identified. This study aimed to explore the needs and ideas of different stakeholders in starting a Master’s degree in NDD care. Methods This qualitative action study was carried out in Galle District, Sri Lanka with the participation of purposefully selected. Thirty stakeholders in five focus Care, communication and biomedical challenges 277 frontiersin.org group discussions, done until the data saturation was achieved. Thematic analysis was used. Results All the stakeholders completed a diploma or degree related to their field. Sixteen sub-themes emerged under the following four major themes; “Expectations”, “Facilities”, “Barriers”, and “Suggestions”. Accreditations of the institution that offers the master’s program were a major expectation of the participants. The favorable workplace environment was identified as a major facilitator that enhanced enrollment. Family commitments were identified as a major barrier. All participants suggested preparing a course considering the emerging needs and trends of the world. Conclusion Institutional accreditation and workplace support are essential to initiate the planned educational programs successfully. The curriculum should be alive and continuous updates are important considering global healthcare trends. 278 Care, communication and biomedical challenges frontiersin.org Necessity of initiation of a master degree programme on neurodegenerative disease care in Sri Lanka Author Kumari De Silva, Priyanthi Nirmala Rathnayake – University of Ruhuna, Sri Lanka Citation Silva, K.D., Rathnayake, P.N. Necessity of initiation of a master degree programme on neurodegenerative disease care in Sri Lanka. Background A needs analysis was conducted to identify the necessary of initiation of a master degree program in NDD care specific to elderly at the University of Ruhuna as the main hub of higher education in the Southern Sri Lanka. Methods A cross-sectional survey was conducted involving 150 healthcare professionals, educators, students and lay people. A self-administered questionnaire was administered. Results Notably, the majority (65.8%) were unaware of any master’s level education program on NDD care. They believe that establishing professionals with specific training would enhance the quality of patient care (77.4%, n=120). Furthermore, 82.0% (n=127) strongly agree or agree with the importance of upgrading NDD related professions and research and development in Sri Lanka. Moreover, a 30.3% agreed, and 49.0% strongly agreed on the Care, communication and biomedical challenges 279 frontiersin.org importance of exploring job market both locally and internationally with a master’s degree. Further, significance was mentioned including an increased elderly population (94.2%), potential economic development and foreign income generation (66.5%), and improvements in health indicators within Sri Lanka (73.5%). Conclusions The need analysis strongly supports for initiating a master degree program in NDD care at University of Ruhuna which was identified. 280 Care, communication and biomedical challenges frontiersin.org Empowering through understanding: Counseling essentials in neurogenerative care Author Andri Christodoulou, Marilena Mousoulidou, Elly Anastasiades – School of Health Sciences, Department of Psychology, Neapolis University Pafos, Paphos, Cyprus Keywords: neurogenerative care, counseling skills, therapeutic relationship, healthcare providers, workshop Citation Christodoulou, A., Mousoulidou, M., Anastasiades, E. Empowering through understanding: Counseling essentials in neurogenerative care. Background Neurodegenerative diseases, such as dementia, Alzheimer’s disease, and Parkinson’s disease, present significant challenges for patients, families, and healthcare providers (Armitage and Fonkem, 2023). These conditions often lead to progressive physical, cognitive, and emotional decline, necessitating advanced medical interventions and compassionate support (Wong et al., 2023). Understanding each patients’ unique challenges and needs is crucial for designing effective person-centred care plans.Counselling skills are essential for healthcare professionals to communicate effectively with clients, manage their emotional responses, and comprehend their unique needs. These skills enable healthcare providers to develop comprehensive, personalized care strategies that address the specific challenges faced by individuals with neurodegenerative diseases.  Care, communication and biomedical challenges 281 frontiersin.org This workshop is designed for healthcare providers working in neurodegenerative care. Its primary aim is to bridge the gap between clinical expertise and understanding patients’ needs, facilitating the creation of person-centered care plans. The workshop includes interactive sessions focused on essential counseling skills, equipping healthcare professionals with the tools necessary to enhance communication, manage emotional responses, and understand the unique needs of their patients. Ultimately, the goal is to foster understanding, enhance communication, and improve patient outcomes through personalized, empathetic care. Methods The workshop consists of interactive sessions covering three fundamental counseling skills: (a) empathy, (b) active listening, and (c) effective communication. Each session includes theoretical background, interactive examples, and practical activities designed for healthcare professionals. The workshop fosters an environment where participants can explore and practice these skills in a supportive setting through a series of interactive sessions and practical exercises. Participants are encouraged to reflect on their experiences, engage in role-playing scenarios, and collaborate with colleagues to refine their counseling techniques. Workshop Structure and Activities The workshop consists of interactive sessions covering three core counseling skills essential for neurodegenerative care: empathy, active listening, and effective communication. Each session begins with a theoretical overview emphasizing the importance of these skills in providing person-centered care. The empathy session highlights understanding and sharing the feelings of patients and their families through theoretical insights and case studies (Moudatsou et al., 2020). Participants engage in role-playing scenarios to practice expressing and responding with empathy. In the active listening session, participants learn to fully engage with patients to understand their concerns and needs, a crucial aspect of therapeutic communication (Hunting Pompon, 2021). Theoretical foundations are explored, followed by interactive examples of nurse-patient interactions. Group activities allow participants to practice active listening techniques, such as paraphrasing and