Mild Behavioral Impairment (MBI) is a diagnostic construct defined by the later-life emergence of persistent neuropsychiatric symptoms (for example, apathy, anxiety, depression, amongst others) displayed by older adults, with the aim to identify individuals at increasing risk of future dementia. The construct is also related to AD biomarkers including beta-amyloid, tau, and cerebral atrophy. For the assessment of MBI, researchers developed the Mild Behavioral Impairment Checklist (MBI-C) (Ismail et al., 2017) evaluating five domains: decreased motivation, affective dysregulation, impulse dyscontrol, social inappropriateness, and abnormal thought and perception.

The purpose of this symposium is to present four contributions that allow increasing our knowledge of the added value of MBI in clinical diagnosis of neurocognitive disorders.

Firstly, Dr. Maurits Johansson from Lund University (Malmö, Sweden) presents an overview of the role of MBI in the contemporary clinical diagnostic criteria for AD and some perspectives for treatment in the future.

Then, Dr. Sabela C. Mallo from the University of Santiago de Compostela (Spain) and Dr. Byron Creese from the University of Exeter (UK) will talk on methodological issues regarding the MBI-C, the underlying structure of the instrument and the impact of the self and informant ratings in the results of the questionnaire.

Dr. Martin Vyhnalek from the Faculty of Medicine of Prague (Czech Republic) will discuss the MBI profile and severity in a sample of β-amyloid positive individuals with amnestic Mild Cognitive Impairment compared to Cognitively Normal older adults.

Lastly, Dr. Camilla Elefante and Giulio Emilio Brancati from the University of Pisa (Italy) will analyze the relationships and boundaries between MBI and late-life major primary psychiatric disorders in patients who attend to psychogeriatric settings.

The assessment of MBI involves two important issues: 1) to know the underlying structure of the Mild Behavioral Impairment Checklist (MBI-C) a questionnaire designed to evaluates Neuropsychiatric Symptoms (NPS) in pre-dementia states; and 2) to consider self and proxy (i.e., study partner) symptom ratings that may not capture comparable samples. Our objective is to give some answer to these questions: first, to analyze the underlying structure of the MBI-C at baseline and follow-up using Multidimensional Scaling (MDS) and two, to determine how self and proxy ratings and the choice of rating type impact in the results of the MBI-C.

To analyze MBI-C structure, 200 Subjective Cognitive Decline and Mild Cognitive Impairment patients from the CompAS longitudinal study completed baseline and follow-up assessments. Two-step bidimensional weighted dichotomous MDS were performed. All items were included in the first step. Items closely associated with each dimension (1 SD above or below the mean) were selected in a second step to obtain the final models solution.

We will also present a review of the literature on the importance of self and proxy MBI-C ratings. We will also present new empirical evidence based on data from over 10,000 cognitively normal.

Results from baseline and follow-up showed two dimensions: Dimension I (right-left) differentiate high and low emotional activation and Dimension II (top-down) high and low behavioral activation. The combination of both generates 4 quadrants: resistance, restlessness, flattening and desolation. The final models were built considering the most relevant items, with little differences between baseline and follow-up. The good fit of the models, type of two-dimensional solution and group weights were similar in baseline and follow-up.

Regarding our second objective, the results suggest that self and proxy ratings may not capture comparable samples and that the choice of rating type can indeed impact the conclusions drawn from analysis.

The 4 quadrants identified could be the most useful NPS to determine risk factors for predementia patients. Also, the findings suggest that the way of applying the MBI-C has relevant implications.

We aimed to examine the profile and severity of mild behavioral impairment (MBI) in a sample of β-amyloid positive individuals with amnestic mild cognitive impairment (aMCI)compared to cognitively normal older adults (CN). Within aMCI, we further examined the potential influence of APOE and BDN Frisk genetic polymorphisms on MBI severity.

We included 64 β-amyloid positive aMCI participants and 50 CN older adults from the Czech Brain Aging Study. The participants underwent neurological, comprehensive neuropsychological examination, APOE and BDNF genotyping, and magnetic resonance imaging.MBI was diagnosed with the Mild behavioral impairment checklist (MBI-C) developed for MBI case detection, and the diagnosis was based on the MBI-C total score ≥7. Additionally, self-report instruments for anxiety (the Beck Anxiety Inventory) and depressive symptoms (the Geriatric Depression Scale-15) were administered. The participants were stratified based on the presence of at least one risk allele in genes for APOE (i.e., e4 carriers and non-carriers) and BDNF (i.e., Met carriers and non-carriers). We used linear regressions to examine the between-group differences.

MBI symptoms (MBI-C total score ≥1) were present in 28% CN and 83% aMCI. Almost half (48.4%) of the aMCI individuals met the criteria for the MBI syndrome. Compared to the CN, the aMCI group displayed more affective, apathy, and impulse dyscontrol symptoms (p<0.001) but not social inappropriateness or psychotic symptoms. Furthermore, aMCI participants reported more depressive (p<0.01) but similar anxiety symptoms to CN on self-report measures. Within the aMCI group, APOE e4 and BDNF Met carriers did not differ from non-carriers in the severity of NPS in either instrument. However, the results suggested that an interaction between these polymorphisms influenced self-reported anxiety (p=0.034), with Met carriers/e4 non-carriers reporting the highest anxiety levels.

MBI is frequent in prodromal Alzheimer´s disease and characterized by affective, apathy, and impulse dyscontrol symptoms. APOE and BDNF risk genetic polymorphisms did not influence the NPS severity when considered separately; however, their interaction might influence anxiety, which warrants further investigation.

The research has received funding from the EEA/ Norway Grants 2014-2021 and the Technology Agency of the Czech Republic – project number TO01000215, Ministry of Health of the Czech Republic, grant no. 19-04-00560, National Institute for Neurological Research (Programme EXCELES, ID Project No. LX22NPO5107) - funded by the European Union – Next Generation EU and GAČR 22-33968S.

People with dementia can live full and meaningful lives after diagnosis, but still many people with dementia and their family care partners are dissatisfied with the process of getting a diagnosis and may also receive limited, if any, post-diagnostic support. The international COGNISANCE project aims to improve the communication of dementia diagnosis and post-diagnostic support. It is a 3-year project supported by the EU Joint Program for Neurodegenerative Disease Research (JPND), with partners in Australia (lead), Canada, Netherlands, UK, and Poland.

Based on the experiences of people with dementia, family care partners and health care professionals, and in partnership with them, we codesigned a website that provides structured information, resources and tools tailored to empower people with dementia and their family care partners. Effects of the campaign was evaluated using the RE-AIM framework. From our collective experiences, a ‘playbook’ was produced outlining how to deliver similar campaigns in other countries. Through these activities we aimed to improve health care practitioner’s diagnostic habits and provision of support, as well as increase help seeking by people with dementia and care partners.

In this symposium, you will hear about the latest results of four workpackages of this COGNISANCE project:

1. 1. A general overview of the rationale, goals, and design of the project will be presented by the principal investigator

2. 2. Data of a qualitative study will be presented on the experiences of receiving a diagnosis, and the barriers and facilitators towards post-diagnostic support, as well as on the differences and similarities between countries.

3. 3. The development of an online actionable guide Forward with dementia (www.forwardwithdementia.org) using a person-centered approach with target audience groups. The aim of this online guide was to support decision making and to help people find their way forward from a diagnosis of dementia.

4. 4. Data will be presented of the evaluation of the implementation and perceived impact of the Forward With Dementia websites and campaign in the five participating countries

People with dementia and informal caregivers utilize a variety of coping strategies to deal with the consequences of a dementia diagnosis. In the beginning they often rely on informal support, but research shows that they could benefit from formal support. The societal and cultural context may also influence how people deal with dementia. Yet, most research that takes place across countries or cultures provides little detail about cross-country differences or similarities. The purpose of this qualitative study is firstly to describe experiences of receiving a diagnosis and experiences, barriers and facilitators towards post-diagnostic support and secondly, and to examine differences and similarities between countries

A cross-country qualitative study with people with dementia recently diagnosed and their informal caregivers was carried out in Australia, Canada, the Netherlands and Poland between March 2020 and September 2020. A wide range of recruitment strategies and methods was adopted to aid recruitment and participation during the covid pandemic. Participants could participate in (online) Individual and dyadic interviews as well as online focus groups. To examine experiences after diagnosis and support, methods utilized ‘projective techniques’ whereby participants could project their experiences onto two fictional characters (a person with dementia, and her informal caregiver). A multi-step iterative inductive qualitative content analysis was carried out.

23 people with dementia and 53 informal caregivers participated. The following themes were identified; ‘getting a diagnosis, ‘coming to terms with dementia’, ‘support from friends and family’, ‘formal support’, ‘adapting to the role of informal caregiver’ and ‘living well with dementia’. ‘Formal support’ and ‘support from friends and family’ could serve as a barrier, facilitator or both in relation to ‘coming to terms with dementia’ and ‘adapting to the role of informal caregiver’. Coming to terms was a necessity for living well with dementia. ‘Adapting to the role of informal caregiver’ was an ongoing adaption process that was part of ‘coming to terms with dementia’ and extended into ‘living well with dementia’. Similarities of the themes across countries were larger than the differences.

Support should enable the process of coming to terms with dementia in a culturally appropriate manner.

Through a co-design process we set out to improve post diagnostic dementia support as part of a wider international programme. A partnership approach was taken with people living with dementia, carers and healthcare professionals.

A scoping review and thematic analysis of existing national and international dementia policies guidelines and campaigns were undertaken to identify gaps and to create a core evidence base. We established co-design local working groups in each of the five partner countries. A series of 20 objective led iterative workshops, four in each country over a period of six months were held. In this way a prototype website was designed, built, populated, and refined. Evidence based English language content was generated and edited collaboratively, core themes were derived from operationalising national Dementia Clinical Guidelines, utilising current evidence, responding to co-designers’ requests and formative research findings. The website was then adapted regionally through translation, links to local information, and including culturally appropriate images, stories and news items. These adapted sites were then user tested and further refined ahead of awareness raising campaigns.

We co-designed a dementia friendly accessible resource to support people living with dementia, carers and healthcare professionals for the first 12 months following diagnosis. The workshops determined that the resource should be available online, current, practical, and relevant at a regional and individual level. The need for a practical, empathetic and individually tailored resource was identified. Language, tone, and online accessibility were essential, particularly for people living with dementia. It was important that the content be written and presented specifically and discretely for people recently diagnosed with dementia, for care partners and for healthcare professionals.

We set out to improve the dialogue around dementia diagnosis. To empower patients and practitioners through providing information, practical tools, improving awareness of and access to available local supports. Through a person-centred approach with target audience groups together we have developed an online actionable guide Forward with dementia (https://www.forwardwithdementia.org) which supports decision making and to help people find their way forward from a diagnosis of dementia.

The Forward with Dementia (FWD) project is a dementia awareness campaign that was implemented across five countries. The campaign included components such as websites (in four languages – www.forwardwithdementia.org), webinars, newsletters, and social media posts. This campaign is the fourth phase of a three-year longitudinal mixed methods study with five phases in five countries: Canada (New Brunswick, Ontario, Quebec), Australia, the Netherlands, United Kingdom, and Poland. The purpose of this study is to evaluate the implementation and perceived impact of the FWD websites and campaign in the five participating countries.

The RE-AIM framework (Reach, Effectiveness, Adoption, Implementation, Maintenance) was used to guide the campaign evaluation. The evaluation was drawn from Google Analytics, surveys, individual interviews, and report cards. Data collection occurred between September 2021 and May 2022.

There were approximately 124,945 page views across all FWD websites during the campaign. Participants of the surveys and interviews reported engaging in a range of campaign activities. They read information about receiving a diagnosis, stories from persons with lived experience in dementia, news, and attended webinars (or watched recording). Most participants rated the information that they read on the website moderately, very, or extremely helpful. In addition, the majority of respondents said that they plan to visit the website again. During the interviews, participants shared that the website was easy to navigate, practical, and that it maintains a positive tone related to dementia. The co-design aspect of the campaign was considered a strength.

The findings indicate that the FWD campaign can provide support for people who have recently received a dementia diagnosis and their family or friends. In addition, the campaign may provide health and social care providers with a new source of information and tools to use and share with their clients. These results informed the development of a playbook to guide regions and countries beyond those involved in this project to implement similar initiatives.

The WHO Global Action Plan against Dementia calls for “at least 75% of member states providing carer support and training by 2025”. In response to the global target, WHO has developed iSupport aiming to provide support for caregivers of people living with dementia. The generic WHO iSupport has been translated and adapted in 39 countries and 37 languages so far. The adapted versions of WHO iSupport are now being implemented worldwide, usually as an online program for caregivers. The feasibility, accessibility, effectiveness and sustainability of the iSupport program in different cultural context is now being explored extensively. This symposium aims to share the up-to-date research findings and lessons learned on the adaptation and implementation process and users’ perspectives from diverse cultural background. It will include seven presentation and be divided into sessions: 3 presentations on Session I and 4 presentations on Session II.

Session I: The first presentation will be dedicated to overviewing the development and the progress of adaptation and implementation of WHO iSupport. The second presentation will focus on the adaptation of iSupport in Uganda. The presentation will inform the utility of iSupport in Sub-Sahara Africa. Based on individual semi-structural interview data from Tunisia, the third presentation will highlight that caregivers’ experience and needs are valuable for cultural adaptation of iSupport.

Session II: The first presentation will demonstrate how facilitator-enabled iSupport intervention would change the interaction and engagement in learning among Chinese caregivers living in Australia and Greater China. The second presentation will focus on adapting iSupport in Switzerland using a community-based participatory approach. The third presentation will show the potential benefit of raising awareness of the Russian society about dementia after the implementation of iSupport through digital technologies. The fourth presentation will report on the co-design of an adapted version of iSupport for young caregivers.

The symposium is expected to inform further development, improvement and implementation of WHO iSupport for diverse cultural background. This will be not only valuable information for participants who are interested in iSupport but also for those (interested in) investigating interventions developed in another cultural setting.

In this first presentation, we will present iSupport, WHO’s skills training and support program for caregivers of people living with dementia, and summarize the theoretical and empirical background for its development and cultural specific adaptations, and the lessons learned so far. WHO iSupport consists of 23 sessions in total, covering five modules: (a) what is dementia (one session); (b) being a carer (four sessions); (c) caring for me (three sessions); (d) providing everyday care (five sessions) and (e) dealing with changing behaviour (ten sessions).

The overview that we will present in this session will be based on the fast growing evidence on the adaptation and implementation of iSupport described in the scientific literature.

First steps have been undertaken to translate and adapt WHO iSupport systematically and culturally fair for several countries and specific target groups and first studies on the impact have been carried out. Published results from India, Portugal, Australia and Brazil will be summarized, also discussing some experienced barriers for implementation related to the way the intervention is provided and implemented, also related to cultural issues.

The scaling of programs like WHO iSupport remains challenging. Ongoing research shows that interventions for caregivers of people living with dementia especially in LMICs such as India require further consideration. However, low uptake and adherence help us better understand which barriers caregivers face and how future research might tailor iSupport and other online programs better to carers’ needs.

Support and training programmes such as iSupport, are more important than ever in the context of the ongoing COVID-19 pandemic. They present a real opportunity to help to reach the global target set by WHO that 75% of countries will provide support and training programmes for caregivers of people living with dementia by 2025.

Family caregivers of persons with ADRD face major stressful emotional, social and economic burdens, and the negative consequences associated with caregiving are well documented. Given the projected global increase in the number of people with dementia (82 million by 2030 and 152 million by 2050), plus a current Dementia prevalence among persons 60 years and older in Uganda, ranging from 5.5% to 20%, there is paucity of information regarding the psychotherapeutic management of challenges that family caregivers of persons with ADRD go through in many settings in sub-Sahara Africa, including Uganda. This study will contribute to the cultural adaptation of the WHO-iSupport that is an appropriate intervention for caregivers of persons with ADRD in Uganda.

To investigate the current approaches that caregivers use in the support of persons with ADRD, so as to inform the adaptation of the WHO iSupport intervention for Uganda.

This is a cultural adaptation study involving adaptation and pre-test the WHO-iSupport for family caregivers of persons with ADRD in Wakiso, Uganda. We are using a group consensus method that includes a professional translator and independent groups of bilingual experts. Caregivers of patients with ADRD are being recruited into the study. Data will be collected by the researcher and trained research assistants.

The primary outcome of this study is the adaptation of the WHO-iSupport psychotherapy.

Primary analyses will be based on Intention to treat (ITT) principle to avoid any biases that may occur by subjective choice of ineligible subjects. Summary statistics like age will be given as a mean (SD) while for categorical data will be given as a proportion and summarized in tables and graphs.

The proposed study is instrumental as it will be the first known study in our setting that provides a step-by-step guide in the cultural adaptation of an intervention for care giving of persons with ADRD. The A-iSupport is a caregiver focused intervention, that promises better health and care outcomes for family caregivers of persons with ADRD, thus reducing the health care load on mental health workers.

Caregivers of persons with Alzheimer’s disease or related dementia (ADRD) are essential for a better quality of life of those they care for. Their role can have a severe impact on their own physical and mental health, as well as on their social and financial situation, according to the current literature. For this reason, WHO has provided the iSupport tool to provide support to caregivers of people with ADRD. Its adaptation and implementation in Tunisia is challenged by the lack of Tunisian data concerning the experience and needs of this population.

To explore, in cooperation with the WHO, the experience of caregivers of persons with ADRD in Tunisia, and their potential training and support needs.

A qualitative cross-sectional study using individual semi-directive interviews was conducted with caregivers of persons with ADRD in Tunisia. Interviews were recorded and transcribed. A thematic analysis of the interviews was performed by two researchers.

Fifteen caregivers (11 women and 4 men) were interviewed on-site, or by telephone. Concerning their overall experience of caregiving, several main themes have emerged: The disruption of the relationship with the close relative (including the role switching, or the impossible mourning), the disruption of the relationship with oneself (including the forgetting of oneself, or the revision of priorities) and the disruption of the relationship with the others and the world (including the isolation and the withdrawal into the dyad caregiver - close relative with an ADRD, the lack of time, or the life as an unending daily struggle). When it comes to training and support needs, content and format preferences were identified.

This work helped us to adapt iSupport to the specific needs of caregivers in Tunisia. Data concerning their overall experience should provide an opportunity for a better adaptation of the social and policy context.

The number of children and adolescents who have caring responsibilities for a family member with dementia is rising. They need help to understand the illness, what changes are expected and how it can affect their family member. This presentation reports on the co-design of an adapted version of iSupport for young carers.

A theoretically driven co-design approach was followed, drawing on the lived experiences of young dementia carers. Young dementia carers (n=6, age 12-16) and professionals who work with young carers (n=5) took part in three workshops and provided individual contributions. Feedback was analysed and adaptations organized according to the dimensions of the Ecological Validity Model which addressed the structure and design, content, context and language. By focussing on these dimensions, we intended to increase the relevance, acceptability and comprehensibility of iSupport to this new target group while keeping the completeness of the theoretical premises underpinning it.

Informed by feedback from participants a number of adaptations were carried out. Case scenarios included in the original iSupport were edited and other new ones created to place the focus on a young character with caring responsibilities within a family unit. These characters were young people with a parent or grandparent living with dementia. Also, illustrations portraying human characters representing a range of ages and ethnicities were added throughout. These characters emphasised the actions described within the carer case scenarios. Adaptations to the ‘design’ and ‘language’ were also carried out. For example, the quantity and complexity of the text was reduced as much as possible without compromising its readability and meaning. Clarity and appeal were increased by changing font size, style and including brighter colour schemes. Adaptations resulted in the creation of iSupport for Young Carers.

iSupport for Young Carers is the first e-health intervention of its kind and aims to support the mental health, knowledge, and skills of young dementia carers. This new adaptation provides opportunities for other countries and demographic groups to translate and adapt iSupport for Young Carers to their specific cultural context.

The past decade has seen an explosion in the growth of technologies in mental health. Particularly, the scaled adoption of virtual care catalyzed by the COVID-19 pandemic has opened up new frontiers in how digital tools can be incorporated into psychiatry. No area of mental health care is as ripe for digital innovation as psychogeriatrics. In this session, an international group of clinicians and researchers will demonstrate how digital health in psychogeriatrics represents multiple cutting edges of innovation.

Our symposium will include 4 presentations, that represent original research from the USA, Ecuador, Norway, Kosovo and Australia. We will highlight clinical applications of these digital tools and aligned issues such as improved care access in low- and middle-income countries, the ethics of digital data collection and the potential for creating new liabilities.

We will focus on four distinct technologies and applications. Dr. Ipsit Vahia will discuss passive environmental sensing supported by signal processing and artificial intelligence (AI) in guiding treatment decision making, especially in dementia care. His presentation will include discussions on how AI can be incorporated into care while also preserving autonomy. Dr. Kreshnik Hoti will discuss the application of AI on voice-based signals to determine changes in pain levels and psychopathology. His presentation will include research conducted in collaboration between teams based in Australia and Kosovo and through a public-private partnership with a digital health startup. Dr. Ana Trueba will focus on digital interventions, specifically virtual reality (VR). She will present data from two studies, one from McLean hospital In the US, and the other from Ecuador that explore how VR can deliver evidence-based non-pharmacologic interventions. Dr. Bettina Husebø will present data from a project she oversees in Norway. Her talk will discuss how care in nursing homes can be improved by incorporating a range of digital approaches into nursing home care paradigms. A particular focus will be on the relationship between pain and behavior symptoms and dementia among nursing home dwelling older adults.

Thus, the symposium will address diagnostics, treatment and systems level care and how New technologies are shaping the evolution of psychogeriatrics worldwide.

Appropriate and personalized pharmacologic management of behavioral and psychologic symptoms in dementia (BPSD) is among the most complex clinical challenges in dementia care. Use of antipsychotics and mood stabilizers is common but accompanied by risk, including high likelihood of adverse effects that can lead to hospitalization or institutionalization. Information to support decision-making in these scenarios is typically obtained from self-report/caregiver report. This presentation will focus on demonstrating how data obtained through digital phenotyping may augment clinical decision making.

This presentation will include information from 3 completed or ongoing studies. The first looks at radio wave based sensing as a way of passively monitoring behavior and dementia. The second uses wearables to track the impact of psychopharmacologic changes in dementia. The third study focuses on incorporating data from electronic media (e-mail, text messages) impact psychotherapy in early and late life

Preliminary results indicate that passive sensing is able to accurately identify patterns of behavior as well as circumscribed clinical events with a precision that exceeds the current standard of care. Data and insights gained from these three ongoing studies are helping develop best practice models that can impact clinical outcomes.

Collectively, the data in this presentation will demonstrate to clinicians a range of approaches towards developing precision care for older adults with dementia and psychiatric diagnosis. These approaches share the common theme of emphasizing the human element in care, while augmenting it with a range of data that provide objective collateral information to guide more precise decision making. The session will also discuss issues that will impact precision care, including the potential for creating inequities, translation to low income settings and countries as well as the matter of data privacy and security.