Supporting early-career dementia researchers: Identifying support needs and ways forward via a European study.

INTRODUCTION: Early-career researchers contribute significantly to dementia research and clinical practice. However, a growing group of early-career dementia researchers (ECDRs) lack appropriate support throughout their careers. Thus, we aim to (i) explore support needs, (ii) determine recommendations, and (iii) set the agenda for organizations to better support ECDRs. METHODS: An iterative, explanatory sequential mixed-methods design was applied. First ECDRs' needs were identified using an online survey informed by the Vitae Researcher Development Framework. Next, priority areas were selected and explored qualitatively with ECDRs in two workshops, utilizing the World Café methodology. RESULTS: Sixty-five ECDRs throughout Europe completed the survey, with the majority reporting that greater support is needed in terms of funding and career opportunities, social support and well-being, and "wide-reaching" dissemination. DISCUSSION: Based on the findings, six recommendations for support organizations, funding bodies, and universities to better support ECDRs are formulated, each intended for specific target audiences. HIGHLIGHTS: This article reports on focal points of career-related support needed in doctoral education and postdoctoral employment to foster a healthier academic environment, including finance, work-life balance, dissemination of research findings, and supervision, both in general and in dementia fields specifically. Funding and resources were identified as a significant challenge, and there was a call for more long-term positions and transition funding for postdoctoral researchers. Early-career dementia researchers addressed the need for support in producing outputs for non-academic audiences, including people living with dementia. The importance of disseminating research to diverse audiences has long been recognized; thus, it is critical that early-career dementia researchers be supported in this effort. Recommendations were formulated for researcher support (organizations), funding bodies, and universities. These recommendations include providing support for disseminating research to non-academic audiences, offering training in supervision skills, and promoting peer-to-peer mentoring and social activities for early-career dementia researchers.

How are early-career dementia researchers considered and supported on a national level by dementia plans and organizations? An overview of global policy approaches.

INTRODUCTION: Despite representing an essential workforce, it is unclear how global policy efforts target early-career dementia researchers (ECDRs). Thus, this study aimed to provide an overview of policies through which ECDRs are considered and supported by dementia plans and organizations. METHODS: G20 member states were evaluated for their national dementia plan alongside policies of leading dementia organizations. Data targeting support for ECDRs were extracted and subject to content analysis using inductive coding. Findings were categorized and narratively synthesized. RESULTS: Only China, Denmark, England, Greece, Northern Ireland, Scotland, Spain, and the United States mentioned ECDRs in their national plan. Additionally, 17 countries formalized ECDR support via dementia organizations. Support efforts included research funding, dissemination and networking, career development, and research advice. DISCUSSION: Few nations formally recognized ECDRs in dementia plans or through dementia organizations. To facilitate equal prospects for ECDRs, top-down approaches are urged to enhance and align their efforts. HIGHLIGHTS: Few G20 countries (8/46) had national dementia plans for early-career researchers. Targeted support comes from government and nongovernmental dementia organizations. Support includes funding, training, advice, research dissemination, and networking. Inconsistent definitions and eligibility criteria are barriers to accessing support. Global coordination and top-down policy will aid early-career dementia researchers.

Intervention mechanisms of an experience sampling intervention for spousal carers of people with dementia: a secondary analysis using momentary data.

Objectives: A psychosocial intervention for spousal carers of people with dementia promoted emotional well-being through self-monitoring and personalized feedback, as demonstrated in a previous randomized controlled trial. The mechanism behind the intervention effects is thought to lie in increased awareness of, and thus, engagement in behaviours that elicit positive emotions (PA). This secondary analysis tests the assumption by investigating momentary data on activities, affect, and stress and explores the relevance of personalized feedback compared to self-monitoring only.Methods: The intervention was based on the experience sampling method (ESM), meaning that carers self-monitored own affect and behaviours 10 times/day over 6 weeks. The experimental group received personalized feedback on behaviours that elicit PA, while the pseudo-experimental group performed self-monitoring only. A control group was also included. ESM-data of 72 carers was analysed using multilevel mixed-effects models.Results: The experimental group reported significant increases in passive relaxation activities over the 6 weeks (B = 0.28, SE = 0.12, Z = 2.43, p < .05). Passive relaxation in this group was negatively associated with negative affect (r = -0.50, p = .01) and positively associated with activity-related stress (r = 0.52, p = .007) from baseline to post-intervention. Other activities in this or the other groups did not change significantly.Conclusion: Carer's daily behaviours were only affected when self-monitoring was combined with personalized feedback. Changing one's daily behaviour while caring for a person with dementia is challenging and aligned with mixed emotions. Acknowledging simultaneously positive and negative emotions, and feelings of stress is suggested to embrace the complexity of carer's life and provide sustainable support.

The necessity for sustainable intervention effects: lessons-learned from an experience sampling intervention for spousal carers of people with dementia.

OBJECTIVES: Caring for a person with dementia can be challenging over the years. To support family carers throughout their entire caregiving career, interventions with a sustained effectivity are needed. A novel 6-week mobile health (mHealth) intervention using the experience sampling method (ESM) showed positive effects on carers' well-being over a period of 2 months after the intervention. In this study, the effects after 6 months of the selfsame intervention were examined to evaluate the sustainability of positive intervention effects. METHOD: The 6-week mHealth intervention consisted of an experimental group (ESM self-monitoring and personalized feedback), a pseudo-experimental group (ESM self-monitoring without feedback), and a control group (providing regular care without ESM self-monitoring or feedback). Carers' sense of competence, mastery, and psychological complaints (depression, anxiety and perceived stress) were evaluated pre- and post-intervention as well as at two follow-up time points. The present study focuses on the 6-month follow-up data (n = 50). RESULTS: Positive intervention effects on sense of competence, perceived stress, and depressive symptoms were not sustained over 6-month follow-up. CONCLUSION: The benefits of this mHealth intervention for carers of people living with dementia were not sustained over a long time. Similarly, other psychosocial interventions for carers of people with dementia rarely reported long-lasting effects. In order to sustainably contribute to carers' well-being, researchers and clinicians should continuously ensure flexible adjustment of the intervention and consider additional features such as ad-hoc counseling options and booster sessions. In this regard, mHealth interventions can offer ideally suited and unique opportunities.

Child and Parent Risk and Resilience Factors as Predictors of Long-term Recovery in Youth Undergoing Spinal Fusion Surgery.

OBJECTIVES: Undertreated pediatric postsurgical pain negatively affects health-related quality of life (HRQOL) and functioning and may lead to chronic postsurgical pain (CPSP). Predictors of recovery have been identified but more research is needed, particularly regarding resilience, social factors, and long-term effects. The aim of the present study was to investigate child and parent risk and resilience factors as predictors of long-term postsurgical recovery for adolescents. METHODS: Participants were patients with Adolescent Idiopathic Scoliosis (AIS), 12 to 18 years old, undergoing spinal fusion, and their parents. Recruitment occurred at the orthopedic units at 4 hospitals in Belgium. Data were collected before surgery (T0), at 3 (T1) and 6 weeks (T2), 6 months (T3), and 1 year (T4) post surgery. Multiple regression models were used to evaluate the predictive effect of pain intensity, pain catastrophizing, psychological flexibility, and pain acceptance on long-term functioning, HRQOL, and pain. RESULTS: The sample comprised 100 adolescents and 61 parents. Pain at T0, T1, and T3 and adolescent pain catastrophizing (T0) predicted health-related quality of life, functioning, and pain at T4 (while pain at T2 predicted HRQOL and pain). Parent pain catastrophizing predicted pain at T4. Adolescent and parental psychological flexibility predicted HRQOL, and parent psychological flexibility also predicted pain at T4. Adolescent acceptance at T1 predicted pain, and acceptance at T2 predicted HRQOL, at T4. DISCUSSION: The study identified pain and adolescent pain catastrophizing as risk factors, and adolescent and parental psychological flexibility and adolescent pain acceptance as resilience factors, for long-term recovery in youths undergoing spinal fusion. Postsurgical pain management targeting these factors may therefore promote recovery for these adolescents.

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

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

The use of Acceptance and Commitment Therapy (ACT) in informal caregivers of people with dementia and other long-term or chronic conditions: A systematic review and conceptual integration.

Informal caregivers are the primary source of support for adults with chronic conditions and disabilities. Empirical research highlights chronic stress and other risks of adverse outcomes of caregiving. Acceptance and Commitment Therapy (ACT) is an emerging evidenced-based practice that shows promise in improving an array of outcomes, theoretically by increasing psychological flexibility as the primary process of change. Research has begun to evaluate ACT among informal caregivers of adult populations, and a systematic review is now needed to summarise this evidence base. Electronic searches from five databases, including PubMed, PsycInfo, Embase, CINAHL, and Cochrane Library, yielded an initial 7896 hits, which after screening for inclusion criteria, resulted in 21 clinical trials. Studies were coded to synthesise the feasibility, effectiveness, and quality of evidence. Findings show that ACT was reported to be largely feasible and acceptable. However, the efficacy of ACT was mixed, with a more consistent pattern for informal caregivers of people with dementia. Several methodological quality issues limited the findings. However, theoretical synthesis and preliminary evidence support the promising effect of ACT in subgroups of informal caregivers. Research on the process of change, as well as larger-scale, methodologically rigorous trials, are needed to consolidate these findings.

Using Personas in the development of eHealth interventions for chronic pain: A scoping review and narrative synthesis.

Objectives: Behavioral eHealth interventions can enhance self-management and improve well-being in people with chronic pain. The development of these interventions calls for a user-centered approach to ensure that patient needs are appreciated. However, it may be challenging to involve patients; particularly during the early stages of the process. Fictional user profiles, known as Personas, can represent needs and guide designing eHealth interventions. This article provides a comprehensive overview of the use of Personas in the development of behavioral eHealth interventions for people with chronic pain with the aim to identify benefits and challenges. Methods: Bibliographic databases (Medline, Web of Science Core Collection, PsycInfo, CINAHL) and registries (PubMed Central, medaRxiv) were systematically searched. In a double-reviewing process, n = 6830 hits and n = 351 full-texts were screened and read. Ten peer-reviewed studies published between 2017 and 2022 were included in the narrative synthesis. Findings: Ten studies reported using "Pain Personas" in the development of eHealth interventions for such purposes as to gain a shared understanding of the user and to discuss solutions in team meetings, or for patients to identify with (if Personas are included in the intervention). Personas were based on qualitative and/or quantitative data. However, the procedure for creating Personas was only described in half of the included studies (n = 5). These five studies provided descriptive details of the Personas (i.e., picture, name, narrative of their pain behavior, technological skills, and motivation). Conclusions: Although Personas have been used by pain researchers in recent projects and were highlighted as an important ingredient in the development process, available design guidelines for the creation and use of Personas are not followed or communicated transparently. Benefits and challenges when using Personas in the development of eHealth interventions for people with chronic pain are discussed to support future eHealth efforts and to improve the quality of eHealth innovation in the field of pain.

Feedback based on experience sampling data: Examples of current approaches and considerations for future research.

Methodologies such as the Experience Sampling Method (ESM) or Ecological Momentary Assessment allow the gathering of fine-graded, dynamic, personal data within a patient's daily life. Currently, it is studied whether feedback based on experience sampling data (ESM-based feedback) can be used as a clinical tool to inform shared decision-making in clinical practice. Although the potential of feedback is recognized, little is known on how to generate, use, and implement it. This article (i) presents n = 15 ongoing ESM projects within the Belgian-Dutch network for ESM research wherein ESM-based feedback is provided to various patient populations, and (ii) summarizes qualitative data on experiences with ESM-based feedback of researchers (n = 8) with extensive expertise with ESM (average of 10 years) involved in these ongoing studies. The following aspects appear to be of relevance when providing ESM-based feedback: training for healthcare professionals and researchers, the use of online interfaces and graphical visualizations to present data, and interacting with patients in a face-to-face setting when discussing the contextual relevance and potential implications. Prospectively, research may build on these aspects and create coherent consensus-based guidelines for the use of ESM-based feedback.

Impact of the COVID-19 pandemic on early career dementia researchers: A global online survey.

INTRODUCTION: The World Health Organization recognizes dementia as a public health priority and highlights research as an action to respond to the consequences, with early career dementia researchers (ECDRs) representing the key driving force. Due to the COVID-19 pandemic, however, biomedical and psychosocial dementia research was strained worldwide. The aim of this study was to understand the impact of the pandemic on ECDRs. METHODS: In autumn 2021, the Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment (ISTAART) Professional Interest Area to Elevate Early Career Researchers (PEERs) and University College London conducted an online survey querying ECDRs' experiences during the COVID-19 pandemic. The survey was shared through the ISTAART network, social media, podcasts, and emailing lists. Data were analyzed using descriptive and inferential statistics. RESULTS: Survey data from n = 321 ECDRs from 34 countries were analyzed (67.6% women; 78.8% working in academia). Overall, 77.8% of ECDRs surveyed indicated research delays, 53.9% made project adjustments, 37.9% required additional or extended funding, and 41.8% reported a negative impact on career progression. Moreover, 19.9% felt unsupported by their institutions and employers (33% felt well supported, 42.7% somewhat supported). ECDR's conference attendance remained the same (26.5%) or increased (More: 28.6%; a lot more: 5.6%) since the start of the pandemic. Continental differences were visible, while the impact of the pandemic did not differ greatly based on ECDRs' sociodemographic characteristics. CONCLUSIONS: The COVID-19 pandemic had a substantial impact on ECDRs worldwide and institutions, employers, and funding bodies are urged to consider the implications and lessons-learned when working with, managing, and promoting ECDRs. Strategies related to the pandemic and general career support to improve ECDRs career progression are discussed, including social media training, digital networking, and benefits of hybrid events. Global resources specific for ECDRs are highlighted.

Development, evaluation and implementation of a digital behavioural health treatment for chronic pain: study protocol of the multiphase DAHLIA project.

INTRODUCTION: Chronic pain affects about 20%-40% of the population and is linked to mental health outcomes and impaired daily functioning. Pharmacological interventions are commonly insufficient for producing relief and recovery of functioning. Behavioural health treatment is key to generate lasting benefits across outcome domains. However, most people with chronic pain cannot easily access evidence-based behavioural interventions. The overall aim of the DAHLIA project is to develop, evaluate and implement a widely accessible digital behavioural health treatment to improve well-being in individuals with chronic pain. METHODS AND ANALYSIS: The project follows the four phases of the mHealth Agile Development and Evaluation Lifecycle: (1) development and pre-implementation surveillance using focus groups, stakeholder interviews and a business model; (2) iterative optimisation studies applying single case experimental design (SCED) method in 4-6 iterations with n=10 patients and their healthcare professionals per iteration; (3) a two-armed clinical randomised controlled trial enhanced with SCED (n=180 patients per arm) and (4) interview-based post-market surveillance. Data analyses include multilevel modelling, cost-utility and indicative analyses.In October 2021, inter-sectorial partners are engaged and funding is secured for four years. The treatment content is compiled and the first treatment prototype is in preparation. Clinical sites in three Swedish regions are informed and recruitment for phase 1 will start in autumn 2021. To facilitate long-term impact and accessibility, the treatment will be integrated into a Swedish health platform (www.1177.se), which is used on a national level as a hub for advice, information, guidance and e-services for health and healthcare. ETHICS AND DISSEMINATION: The study plan has been reviewed and approved by Swedish ethical review authorities. Findings will be actively disseminated through peer-reviewed journals, conference presentations, social media and outreach activities for the wider public. TRIAL REGISTRATION NUMBER: NCT05066087.

Smartphone-Based Experience Sampling in People With Mild Cognitive Impairment: Feasibility and Usability Study.

BACKGROUND: Daily functioning of people with cognitive disorders such as mild cognitive impairment (MCI) is usually depicted by retrospective questionnaires, which can be memory-biased and neglect fluctuations over time or contexts. OBJECTIVE: This study examines the feasibility and usability of applying the experience sampling method (ESM) in people with MCI to provide a detailed and dynamic picture of behavioral, emotional, and cognitive patterns in everyday life. METHODS: For 6 consecutive days, 21 people with MCI used an ESM app on their smartphones. At 8 semi-random timepoints per day, participants filled in momentary questionnaires on mood, activities, social context, and subjective cognitive complaints. Feasibility was determined through self-reports and observable human-technology interactions. Usability was demonstrated on an individual and group level. RESULTS: Of the 21 participants, 3 dropped out due to forgetting to carry their smartphones or forgetting the study instructions. In the remaining 18 individuals, the compliance rate was high, at 78.7%. Participants reported that momentary questions reflected their daily experiences well. Of the 18 participants, 13 (72%) experienced the increase in awareness of their own memory functions as pleasant or neutral. CONCLUSIONS: Support was found for the general feasibility of smartphone-based experience sampling in people with MCI. However, many older adults with MCI are currently not in possession of smartphones, and study adherence seems challenging for a minority of individuals. Momentary data can increase the insights into daily patterns and may guide the person-tailored development of self-management strategies in clinical settings.

Measuring within-day cognitive performance using the experience sampling method: A pilot study in a healthy population.

INTRODUCTION: People with depression, anxiety, or psychosis often complain of confusion, problems concentrating or difficulties cognitively appraising contextual cues. The same applies to people with neurodegenerative diseases or brain damage such as dementia or stroke. Assessments of those cognitive difficulties often occurs in cross-sectional and controlled clinical settings. Information on daily moment-to-moment cognitive fluctuations and its relation to affect and context is lacking. The development and evaluation of a digital cognition task is presented. It enables the fine-grained mapping of cognition and its relation to mood, intrapersonal factors and context. METHODS: The momentary Digit Symbol Substitution Task is a modified digital version of the original paper-and-pencil task, with a duration of 30 seconds and implemented in an experience sampling protocol (8 semi-random assessments a day on 6 consecutive days). It was tested in the healthy population (N = 40). Descriptive statistics and multilevel regression analyses were used to determine initial feasibility and assess cognitive patterns in everyday life. Cognition outcome measures were the number of trials within the 30-second sessions and the percentage of correct trials. RESULTS: Subjects reported the task to be easy, pleasant and do-able. On average, participants completed 11 trials with 97% accuracy per 30-second session. Cognitive variation was related to mood, with an interaction between positive and negative affect for accuracy (% correct) (p = .001) and an association between positive affect and speed (number of trials) (p = .01). Specifically, cheerful, irritated and anxious seem to covary with cognition. Distraction and location are relevant contextual factors. The number of trials showed a learning effect (p < .001) and was sensitive to age (p < .001). CONCLUSION: Implementing a digital cognition task within an experience-sampling paradigm shows promise. Fine-tuning in further research and in clinical samples is needed. Gaining insight into cognitive functioning could help patients navigate and adjust the demands of daily life.

A narrative synthesis systematic review of digital self-monitoring interventions for middle-aged and older adults.

OBJECTIVE: Self-monitoring is crucial to raise awareness for own behaviors and emotions, and thus facilitate self-management. The composition of self-monitoring within interventions, however, varies and guidelines are currently unavailable. This review aimed to provide a comprehensive overview of technology-based self-monitoring interventions that intend to improve health in middle-aged and older adults (>45 years). METHODS: Five online databases were systematically searched and articles were independently screened. A narrative synthesis of 26 studies with 21 unique interventions was conducted. Primary focus lay on the composition of self-monitoring within interventions, including technology used, health-aspects monitored, and type of feedback provided. Secondly, the usability of/adherence to the self-monitoring treatment, intervention effects, and their sustainability were examined. FINDINGS: Studies concentrated on middle-aged adults (mean of 51 years). Mobile technologies seem necessary to ensure flexible self-monitoring in everyday life. Social health aspects were rarely monitored. Mechanisms and the sustainability of intervention effect are understudied. CONCLUSION: Digital self-monitoring technologies hold promise for future trials as they seem suitable to understand and support health-related self-management. Key elements including automatic and personal feedback following the blended care principle were highlighted and may guide study designs. Prospectively, research is especially needed to study sustained self-monitoring to support disease prevention and lasting lifestyle changes.