The LuBAIR™ Paradigm is a novel approach to ascribe meaning to behavioral expressions in advanced neurocognitive disorders when the reliability of a clinical assessment is limited. The meaning ascribed to each behavioral category was used to identify those who are likely to respond to the use of atypical antipsychotics in their management. De-prescribing was attempted on patients who qualified to enter this retrospective study. De-prescribing was defined as successful if individuals were completely withdrawn from AAP and remained off them for 60 days without the re-emergence of behaviors.

The LuBAIR™ Inventory was filled on two occasions. The data collected on the second occasion, in the successful and failed de-prescribed groups, were compared in this retrospective study. MANOVA, Chi-Square paired t-test statistical analyses were used to detect the differences in the behavioral categories between the two cohorts. Cohen d was used to measure effect size.

Patients who did not have Mis-Identification and Goal-Directed Expressions were more likely to successfully de-prescribe: X2 (1, N = 40) = 29.119 p < 0.0001 and X2 (1, N = 40) = 32.374, p < 0.0001, respectively. Alternatively, the same behavioral categories were more likely to be present in patients who failed de-prescribing: MANOVA and paired t-test (p < 0.0001).

Atypical antipsychotics, in their role as an antipsychotic and mood stabilizer, may be used to manage Mis-Identification and Goal-Directed Expressions, respectively.

DISTINCT is a Marie Sklodowska-Curie Innovative Training Network. Supported by the INTERDEM network and European Association of Geriatric Psychiatry, DISTINCT aimed to establish a multi-disciplinary, multi-professional and intersectorial European research framework, for assistive technologies to support social health in dementia. In this symposium, we present research associated with the maturity lifecycle (development to evaluation) of four technologies: the ROADMAP online self-management intervention; online peer support for people with young onset dementia; online acceptance and commitment therapy for caregivers (ACT); and the FindMyApps tablet-based intervention for people with dementia and their caregiver.

In 2019, 15 ESRs were recruited to 13 research organizations across 8 European countries. Research projects were launched in collaboration with people living with dementia and caregivers, and industry partners. Projects were adapted to meet challenges and opportunities due to the COVID-19 pandemic. The projects presented in this symposium employed a variety of research paradigms (user-centred design, feasibility and implementation studies, randomized controlled trials). Key insights from each project were combined into best practice guidance for developers, researchers, healthcare professionals and people living with dementia, covering the full innovation lifecycle.

All DISTINCT research projects are now in the final stages, having so far resulted in more than 35 peer reviewed publications and many contributions to international conferences. Insights were incorporated into the Best Practice Guidance for Human Interaction with Technology in Dementia, published in December 2022, which will be updated by the end of 2023 with further insights from completed projects. Key findings presented in this symposium concern: development of ROAD MAP online; best practices for, and barriers to, online peer support; acceptability and preliminary effectiveness of online ACT; effectiveness and cost effectiveness of FindMyApps.

There is growing evidence that assistive technologies are feasible and effective for supporting social health of people with dementia and caregivers. People living with dementia, formal and informal caregivers, policymakers, designers, and researchers can refer to the DISTINCT Best Practice Guidance to inform their approach to assistive technology. Future research can build on these results, to further understand and improve usability, (cost-)effectiveness, and implementation of assistive technology in dementia.

Scalable, cost-effective interventions to support social health in dementia are required to address growing prevalence in the face of healthcare workforce shortfalls. Until now, very few high quality studies have addressed the effectiveness of assistive technologies for social health in dementia, and almost none have evaluated the cost-effectiveness. Effectiveness of the FindMyApps intervention was investigated and an economic evaluation was undertaken.

A single-centre, non-blinded, randomized controlled trial (RCT) was conducted, comparing the effectiveness of FindMyApps with a digital care as usual control intervention (normal tablet computer with general advice). Primary outcomes measured at baseline and three month follow-up were social participation and self-management of community-dwelling people with mild cognitive impairment (MCI) or early stage dementia (MMSE 18-25), and sense of competence of their informal caregiver. Healthcare usage data was collected using a modified version of the RUD-lite instrument. Incremental costs and effectiveness associated with FindMyApps compared to the control intervention were estimated.

Data collection was completed in November 2022. Of 150 dyads randomized, follow-up data wereavailable from 128 dyads (14.7% loss to follow-up). The dataset has been cleaned and analyses are ongoing. Alongside main effects on primary outcomes, both a cost-effectiveness analysis and a cost- utility analysis will be reported, from a societal and healthcare perspective. Cost and effect differences between FindMyApps and digital care as usual will be estimated with bivariate regression analyses and incremental cost-effectiveness ratios will be reported (the difference in the mean total costs between the groups divided by the difference in mean effect between the groups). Cost-effectiveness acceptability curves will demonstrate the probability that FindMyApps is cost-effective compared to digital care as usual.

The results of this study establish the extent to which FindMyApps is effective and cost-effective for supporting social health in dementia. Implications for healthcare professionals, researchers and policymakers with respect to further implementation of FindMyApps are highlighted, as well as remaining uncertainty and directions for future research. The results of this study demonstrate the feasibility of large-scale (cost-)effectiveness evaluations with assistive technology, which should be replicated as gold-standard evidence for other technologies and health priorities.

Numerous e-health programs have shown the potential to enhance psychological and social health outcomes in informal caregivers of People with Dementia (PwD). However, there is still a need for evidence-based interventions tailored to the specific needs of this population, such as maintaining self-management and participating in meaningful activities. This mixed-methods study aims to evaluate the feasibility, acceptability, and preliminary effectiveness of a blended intervention based on acceptance and commitment therapy for informal caregivers of PwD, leading to a better understanding of intervention refinements for future controlled trials.

A single-arm clinical trial design is conducted. A total of 20 informal caregivers of PwD are recruited through memory clinics and social media platforms in the Netherlands. The ACT-IC intervention is delivered over a 9-week period and consists of a collaborative goal-setting session, nine online modules, and nine telephone-based motivational coaching sessions. Feasibility and acceptability are assessed using the attrition rate, adherence to, and engagement with the intervention, the proportion of missing data, and semi-structured interviews. Clinical outcome measures assess depression, anxiety, stress, sense of competence, burden, and self-efficacy at baseline and post-intervention.

Data collection will be completed by May 2023, and analyses are ongoing. Of the 20 caregivers, 19 completed the baseline assessment, and 3 dropped out. Results of an ANOVA investigating the effect of ACT-IC on the outcome measures at post-intervention will be reported, as well as the results of post-hoc analyses that explored the effect on outcomes of goal attainment and meaningful activities, observed use of the website, and reported adherence to the recommended frequency of website use.

The result will contribute to the need for further research on supportive e-health interventions for informal caregivers of PwD. The ACT-IC study is the first trial to apply an evidence-based blended approach to address and evaluate the specific shared needs of caregivers. The mixed-method approach may offer a better understanding of reasons for dropouts, as well as barriers and facilitators that informal caregivers experience over the course of the intervention. Furthermore, social interaction (telephone-based motivational coaching) might improve the feasibility and acceptability of the online ACT intervention.

Peer support can be very valuable for people with Young Onset Dementia (YOD) (diagnosis before the age of 65). People with YOD often experience stigma, putting them at a higher risk of social isolation. In the United Kingdom, availability of age-appropriate, in-person peer support services is inconsistent, and as a result many people may miss out on the potential benefits. Online peer support could be a solution, as it overcomes geographical barriers, and offers a variety of platforms and modes of communication. This study aimed to explore how people with YOD experience online peer support, identify potential barriers to online peer support, and get insights into how online peer support can be optimized. The findings were used to develop a Best Practice Guidance on online peer support for people with YOD, and specific guidelines for facilitators of online peer support groups.

This study was conducted between October 2019 and December 2022. It followed the Medical Research Council (MRC) guidelines on complex interventions and focused on the development stage. The study consisted of multiple sub-studies, which all contributed to the Best Practice Guidance. The sub-studies included literature reviews, focus groups, an online survey, and interviews. All participants were people living with YOD.

Participants described online peer support as their lifeline which gave them hope and a sense of purpose again, after an often very difficult diagnostic and post-diagnostic period. For people in rural areas or who were unable to travel, online was the only way in which they could connect with their peers. However, many were unaware that online peer support exists, what it entails, and how they could get involved. This indicates a need for better advertisement of and signposting to (online) peer support.

Online peer support can be beneficial for people with YOD. The Best Practice Guidance provides people with YOD with evidence-based information on what online peer support entails, facilitators with guidelines on how to optimize online peer support for people with YOD, and healthcare professionals with an opportunity to signpost people with YOD to online peer support.

To user-test a recovery-oriented, clinician-facilitated, web-based, self-management intervention accessible via mobile device: ROAD MAP. The initial programme theory underlying this research is that supporting the experiences of CHIME (connectedness, hope and optimism, identity, meaning in life and empowerment), in persons living with dementia (PLWD) will have health-promoting benefits for the PLWD.

The intervention will be delivered to 20 dyads of community-dwelling PLWDs and their carers via a five-week, online, recovery-based curriculum. Five convenience-sampled occupational therapists (OT) will be trained online in a 10-hour training programme to deliver the intervention. All data collection instruments are informed by realist evaluation (RE) methodology and enquire into initial programme theories (IPTs) used to develop the curriculum and the ROAD MAP digital tool. Data collection, between January and March 2023, will occur during both the OT training and the five-week pilot study. The OT facilitators will provide qualitative feedback on the ROAD MAP technology. Data will be collected via pre-post self-completion forms, semi-structured interviews, a focus group, and weekly guided reflective journal. PLWD’s self-reported, user experience will be live polled within the weekly one-hour long sessions of the pilot. Their digital usage analytics will be generated by the MyGuide platform on which the ROAD MAP intervention is built. These data will be manually screened for IPT relevance and used to test emerging programme theories.

All data will be collected by end of March 2023 and analysed by end of May 2023. NVivo will be used to generate refined programme theories according to RE methodology. This will provide evidence of plausible, causal context-mechanism-outcome configurations which may optimize the refined version of the ROAD MAP digital intervention, curriculum and facilitator training methods.

This study will increase knowledge of a methodology for developing useable and acceptable recovery-oriented telehealth tools for PLWD. This intervention could directly enhance the education of health care professionals and improve the equitable delivery of dementia services.

At the end of this workshop, participants will be able to:

1. - Integrate a human rights and dignity-based strategies into daily clinical care for older persons with mental health conditions

2. - Identify the effects of intersections of ageism, ableism, mentalism and elder abuse on the care provided to older persons with mental health conditions

3. - Describe and support the need for an international (UN) Convention on the rights of older persons to improve the care of older persons with mental health conditions

Our world faces rapid population aging. Based on the WHO estimates, nearly 20% of older persons will have mental health conditions such as dementia, depression, anxiety and substance use, often complicated by physical and psychosocial comorbidities. Various mental health inequalities exist in this vulnerable population negatively influencing their healthcare and social status. This includes the ‘triple jeopardy’ of ageism, ableism and mentalism. The ongoing COVID-19 crisis has only widened the marginalization of older persons and especially those with mental health conditions.

Even though there has been a paradigm-shift in neurobiological understanding of psychogeriatrics, dignity-based mental healthcare is still silent in research as well as practice. This workshop brings in recommendations to include the principles of rights, dignity, equality, equity and respect in clinical care for older persons living with mental health conditions, including dementia. These suggestions are based on literature review, position statements of global organizations working in this area, the Decade enablers of the UN Decade of Healthy Aging (2021-2030) and also clinical experience of the authors. Special focus will be on end-of-life care, advance directives and those in institutionalized settings.

The workshop will involve a strategic and interactive discussion based on real-life case vignettes. Feedback will be sought on the perceived status of dignity and human rights in current clinical practice. Focus will be on ensuring dignity and promoting human rights in routine clinical care and patient-physician communication, age-friendly healthcare settings for older persons and the role of dignity therapy. The need for an International Convention for the rights of older persons will also be highlighted with evidence.

Elder abuse and inadequate end-of-life care as two of the many common manifestations of the implicit bias and core root cause of the phenomenon of the “ageism spectrum”. Ensuring dignity and human rights in older persons can combat ageism and prevent elder abuse. Adequate sensitivity and training of professionals in this area will set the future pathway for dignified mental health interventions in the older persons with mental health conditions that are devoid of age-based discrimination and prejudice.

There is an urgent need for clinical blood biomarkers which can rule in/out neurological disorders early in those with psychiatric symptoms, personality or behavioural changes and/or functional decline together with cognitive symptoms. The neuronal axonal protein neurofilament light (NfL) is released from damaged neuronal axons and can be measured in in blood and cerebrospinal fluid (CSF). We have undertaken a series of studies aimed at examining the clinical utility of blood and CSF NfL in assisting with the distinction between psychiatric and neurodegenerative / neurological disorders.

Since 2016 we have measured blood and CSF NfL levels across multiple psychiatric and neurological populations recruited through Neuropsychiatry, Royal Melbourne Hospital and our collaborators (national and international). We have described our findings in a series of published studies. Data from our ongoing work, in larger cohorts and diagnostic groups, will be presented. The diagnostic groups include people with psychiatric disorders (schizophrenia, bipolar disorder, depression, functional neurological disorders), neurodegenerative disorders (Alzheimer’s disease, frontotemporal dementia, Huntington’s disease, Niemann-Pick Type C) and neurological disorders (e.g., epilepsy).

Our initial pilot study (n=129) found that CSF NfL was a promising biomarker in differentiating psychiatric from neurological disorders. In our larger follow up larger study (n=498) which included more diagnostic groups CSF NfL levels exhibited high accuracy (91%), sensitivity (92%), and specificity (87%) in differentiating psychiatric from neurological disorders, and distinguished behavioural variant frontotemporal dementia from frontal lobe syndrome phenocopies/mimics, with high accuracy. We have found that NfL is not elevated in people with treatment resistant schizophrenia compared to controls and is elevated in people with Niemann-Pick Type C compared to people with psychiatric disorders and controls. Further (unpublished) data has shown that these findings are replicated with plasma NfL levels across 400 further psychiatric, neurological and control participants.

NfL is a highly promising biomarker which differentiates psychiatric from neurological disorders with high sensitivity and specificity. The translation of NfL levels into standard clinical practice could substantially improve the clinical diagnostic process in people with complex neuropsychiatric and cognitive disorders.

Post-diagnosis young onset dementia (YOD) care is often fragmented, with services delivered across aged care, health care, and social care sectors. The aim of this project was to test the feasibility and effectiveness of a learning collaborative implementation strategy for improving the cross-sector integration of care for people with YOD.

We conducted a longitudinal mixed-methods process evaluation, and recruited one representative from three Australian aged care organisations, three disability care organisations, and three organisations contracted to deliver care navigation services. One representative from each organisation joined a learning collaborative within their local area and completed a six-module online education package incorporating written resources, webinars, collaboration, and expert mentoring. Participants identified gaps in services in their region and barriers to care integration, and developed a shared plan to implement change. Normalisation Process Theory was applied to understand acceptability, penetration, and sustainability of the implementation strategy, as well as barriers and enabling factors.

Dementia knowledge measured by the Dementia Knowledge and Awareness Scale was high among the professionals at the start of the implementation period (Mean = 39.67, standard deviation = 9.84) and did not change by the end (Mean=39.67, standard deviation = 8.23). Quantitative data demonstrated that clinicians dedicated on average half of the recommended time commitment to the project. However, qualitative data identified that the learning collaborative strategy enhanced commitment to implementing integrated care and promoted action toward integrating previously disparate care services. Participant commitment to the project was influenced by their sense of obligation to their team, and teams that established clear expectations and communication strategies early were able to collaborate and use the implementation plan more effectively (demonstrating collective action). Teams were less likely to engage in the collective action or reflexive monitoring required to improve care integration if they did not feel engaged with their learning collaborative.

Learning collaboratives hold promise as a strategy to improve cross-sector service collaboration for people with YOD and their families but must maximise group cohesion and shared commitment to change.

Awareness is the recognition of changes caused by deficits related to the dementia process. Awareness is related to a given object, like memory functioning or functional status. Objects of awareness can be grouped into a range of domains, including cognition, functional ability, emotional and social functioning, and behavioral difficulties. Preserved awareness in people with young onset dementia (YOD) has been reported; however, there is a lack of research investigating whether there are differences in the domains of awareness impairment according to the age at onset of dementia. This study compared the differences in awareness and its domains and examined associations with cognition, functionality, neuropsychiatric symptoms, social and emotional functioning, and quality of life (QoL) among people with YOD and late onset dementia (LOD).

A group of 136 people with dementia and their caregivers (YOD= 50 and LOD= 86) were consecutively selected. We assessed awareness of disease, dementia severity, cognition, functionality, neuropsychiatric symptoms, social and emotional functioning, and QoL.

People with YOD presented more neuropsychiatric symptoms and worse cognition and functional ability than those with LOD. Compared to people with LOD, there were higher levels of awareness total score, awareness of cognitive functioning and health condition, and awareness of functional activity impairments domains in people with YOD, even in the moderate stage of the disease. There were no significant differences between groups in the emotional state, and social functioning and relationships domains of awareness. Multivariate linear regressions showed that functionality had a broad relationship with awareness in people with YOD. In contrast, neuropsychiatric symptoms and QoL were more significant to the awareness of people with LOD.

Different clinical variables are associated with different domains in YOD and LOD groups, reinforcing the heterogeneity of awareness in dementia. Differences in awareness and its domains in YOD and LOD may be particularly relevant to enabling interventions focused on meeting their specific needs and those of their families.

Cognition and the ability to take care of daily activities and oneself gradually declines among people with dementia. Studies are scarce, especially regarding how people with young-onset dementia (YOD) (<65 years) experience the quality of their lives with the progression of dementia. People with dementia living alone face special challenges. The aim was to examine the experience of the quality of life with YOD as a single person.

The study presents a longitudinal case study with in-depth interviews exploring the experiences of a person with YOD. Individual interviews were conducted seven times over a period of three years from 2014 to 2017.

We examined if and how seven themes concerning the quality of life and well-being were fruitful for understanding the experiences of dementia in the everyday life of a single individual. The study explored needs and challenges during the development of dementia, and how the person reacted over time, set in context. The themes significant for well-being are: identity, connectedness, security, autonomy, meaning, growth and joy.

The study shows how treatment, support, and services must be individualized when dementia develops in order to support identity, resources and mastering capacity, and promote well-being.

LuBAIR™ Paradigm, a novel approach to ascribing meaning for behavioral expression in advanced neurocognitive disorder, was used to identify behavioral categories that are likely to respond to the use of atypical antipsychotics in their management.

A retrospective study.

St. Peter’s Hospital (SPH), Hamilton, Ontario, Canada.

Forty patients qualified for the study.

LuBAIR™ Inventory populated on all recruited patients on two separate occasions. The first time was within two weeks of admission and the second time was after sixty days, if they successfully de-prescribed off the AAP, or sooner, if they failed de-prescribing.

Chi-Square paired t-test and Cohen d Statistical tests were used to detect the difference in the behavioral categories between the two cohorts.

Seventeen patients were successfully de-prescribed, and twenty-three failed de-prescribing. Results on the LuBAIR™ Inventory, filled on the second occasion, in the successful de-prescribed and the failed de-prescribed groups compared using the Chi-Square Statistical test to detect the difference in the behavioral categories the two cohorts. Patients who did not have Mis-Identification Expressions (MiE) and Goal-Directed Expressions (GDE), amongst the cluster of behavioral categories in their clinical presentation, were more likely to successfully de-prescribe of AAP: X2 (1, N = 40) = 29.119 p<.0001 and X2 (1, N = 40) = 32.374, p<.0001, respectively. Alternatively, the same behavioral categories were more likely to be present in patients who failed de-prescribing: paired t-test and Cohen-d (P<0.0001).

The MIE and GDE were statistically significant, suggesting that these behaviors were more present in patients who failed de-prescribing. Atypical antipsychotics, in their role as an antipsychotic and mood stabilizer, may be used to manage Mis-Identification and Goal-Directed Expressions, respectively.

Previous research showed that people with young-onset dementia and their family caregivers spontaneously addressed the topic of euthanasia when talking about the broader topic of advance care planning. A better understanding of what people address and why may provide innovative insights to inform the evolving physician assisted dying legislation worldwide. This study aimed to identify what people with young-onset dementia and their family caregivers spontaneously expressed regarding (communication about) euthanasia when discussing the topic of advance care planning.

A secondary qualitative analysis was conducted, through the method of constant comparative analysis on semi-structured interviews. We included 10 people with young-onset dementia and 25 family caregivers in Flanders, Belgium.

Respondents described similar contexts for discussions about euthanasia: the topic arose at several key moments, usually with informal caregivers, and was motivated by patients considering the impact of disease progression both for themselves, thereby mainly wanting to avoid decline and maintain dignity, and their loved ones. Family caregivers paid considerable attention to the legality of euthanasia in dementia, specifically with regard to cognitive capacity, and elaborated on the difficulties and emotional impact of discussing euthanasia.

Considerations of people with young-onset dementia towards euthanasia appeared rooted in personal unbearable suffering and in expected interpersonal and societal consequences of their condition. Negative social framing of young-onset dementia might contribute to the livelihood of euthanasia in respondents’ thoughts. The incorporation of euthanasia as a legal end-of-life option was mirrored in its incorporation in patients’ and family caregivers’ thought framework.

Advance care planning (ACP), one of the key domains of palliative care, enables individuals to define and discuss goals and preferences for future treatment and care with family and healthcare professionals. By exploring the views of people with dementia on quality of life now and in the future, including the end of life, care provisions can be tailored to their values. The perspectives of people with young-onset dementia (YOD), with a symptom onset before the age of 65, may differ from those of older people with dementia given the different life phase and family context. Qualitative research methods can be used to elicit the attitudes and beliefs to generate insight into their perspectives.

Qualitive study, as part of the Care4Youngdem-study, using semi-structured interviews with a criterion-based purposive sample of community-dwelling people with YOD (n=10) and their (family) caregivers in the Netherlands. We adapted the interview guide based on discussion of the transcripts. Double coding of three interviews resulted in a codebook. The codes were subsequently analysed through thematic analysis.

Interviews took place between December 2019 and February 2022. The most prevalent dementia subtype was Alzheimer’s (n=7). Four overarching themes, based on 21 categories, were derived from the interviews: (1) connectedness with others, (2) sense of dignity, (3) acceptance versus no acceptance of the impact of dementia, (4) concerning oneself with the future versus not wishing to concern oneself with the future. Connectedness with others and a sense of dignity were deemed prerequisites for (future) quality of life but were affected by YOD. These themes overlapped in terms of axial codes. Ambiguities were seen in the attitude towards the impact of YOD and the preparation for the future. The degree of acceptance of YOD affected the orientation towards the future.

Family and professional caregivers should discuss with people with YOD how to maintain connectedness with others and a sense of dignity. Opposite ways of coping with the present and future were found. Professional caregivers should take personal coping styles into account when starting ACP conversations.