Development of a Lived Experience Panel to inform the design of embedded pragmatic trials of dementia care interventions.

BACKGROUND: The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's Disease and Alzheimer's Related Dementia Clinical Trials (IMPACT) Collaboratory convened a Lived Experience Panel (LEP) to inform the development of research priorities and provide input on conducting embedded pragmatic clinical trials (ePCTs) of dementia care interventions. Given the importance of people with lived experience to dementia research, and the unique considerations of engaging people with dementia, we report on our process for the recruitment, selection, and initial convening of the IMPACT LEP. METHODS: The IMPACT Engaging Partners Team, in partnership with the Alzheimer's Association, sought nominations of individuals with mild cognitive impairment or early-stage dementia, care partners of other people living with dementia (PLWD), and proxy representatives for individuals with mid-to-late stage dementia. The 11-member LEP was composed of individuals with diverse personal experiences in part due to their age, race, ethnicity, gender, sexual orientation, geography, disability, or type of dementia. In its first year, the LEP met with IMPACT's Patient and Caregiver Relevant Outcomes Core and Ethics and Regulation Core. RESULTS: LEP members provided valuable insights and nuanced discussion of issues relevant to ePCTs in dementia care from a broad range of personal experience. Panelists identified key research priorities and provided insight on outcomes often studied by researchers. The LEP also informed investigators' approaches to waivers and modifications of written informed consent and evaluation of minimal risk. Summary reports of the LEP meetings with each Core are available on the IMPACT website. At the end of the first year, changes were made to the composition of the LEP, and opportunities were identified for expanding panelist engagement with IMPACT investigators, as were priorities and scope for future input. CONCLUSIONS: The IMPACT LEP provides a model for engaging PLWD and care partners in the research process as collaborators.

Classifying the non-metabolic demands of different physical activity types: The Physical Activity Demand (PAD) typology.

Different physical activity types vary in metabolic demand (intensity), but also in non-metabolic physical demand (balance, co-ordination, speed and flexibility), cognitive demand (attention, memory and decision making), and social demand (social interaction). Activity types with different combinations of demands may have different effects on health outcomes but this cannot be formally tested until such demands can be reliably quantified. The present Delphi expert consensus study aimed to objectively quantify the cognitive, physical and social demands of different core physical activity types and use these scores to create a formal Physical Activity Demand (PAD) typology. International experts (n = 40; experts in cognitive science, psychology, sports science and physiology; 7 different nationalities; 18 male/22 female; M = 13.75 years of disciplinary experience) systematically rated the intrinsic cognitive, physical and social demands of 61 common activity types over 2-rounds of a modified Delphi (expert consensus) study. Consensus (>70% agreement) was reached after 2 rounds on the demands of 59/61 activity types. Cognitive, physical and social demand scores were combined to create an overall non-metabolic demand rating for each activity type, and two-step cluster-analysis was used to identify groups of activities with comparable demand profiles. Three distinct clusters of activities were identified representing activity types with low (n = 12 activities; e.g. domestic cleaning), moderate (n = 23 activities; e.g. tai-chi) and high (n = 24 activities; e.g. football) total non-metabolic demands. These activity types were then organised into a formal typology. This typology can now be used to test hypotheses about if and why physical activity types with different combinations of cognitive, physical and social demands affect health outcomes in different ways.

Age Differences in Gaze Following: Older Adults Follow Gaze More than Younger Adults When free-viewing Scenes.

Previous research investigated age differences in gaze following with an attentional cueing paradigm where participants view a face with averted gaze, and then respond to a target appearing in a location congruent or incongruent with the gaze cue. However, this paradigm is far removed from the way we use gaze cues in everyday settings. Here we recorded the eye movements of younger and older adults while they freely viewed naturalistic scenes where a person looked at an object or location. Older adults were more likely to fixate and made more fixations to the gazed-at location, compared to younger adults. Our findings suggest that, contrary to what was observed in the traditional gaze-cueing paradigm, in a non-constrained task that uses contextualized stimuli older adults follow gaze as much as or even more than younger adults.

Adult Age Differences in Using Information From the Eyes and Mouth to Make Decisions About Others' Emotions.

OBJECTIVES: Older adults are often less accurate than younger counterparts at identifying emotions such as anger, sadness, and fear from faces. They also look less at the eyes and more at the mouth during emotion perception. The current studies advance understanding of the nature of these age effects on emotional processing. METHODS: Younger and older participants identified emotions from pictures of eyes or mouths (Experiment 1) and incongruent mouth-eyes emotion combinations (Experiment 2). In Experiment 3, participants categorized emotions from pictures in which face masks covered the mouth region. RESULTS: Older adults were worse than young at identifying anger and sadness from eyes, but better at identifying the same emotions from the mouth region (Experiment 1) and they were more likely than young to use information from the mouth to classify anger, fear, and disgust (Experiment 2). In Experiment 3, face masks impaired perception of anger, sadness, and fear more for older compared to younger adults. DISCUSSION: These studies indicate that older people are more able than young to interpret emotional information from the mouth, they are more biased to use information from the mouth, and suffer more difficulty in emotion perception when the mouth is covered with a face mask. This has implications for social communication in different age groups.

The Effects of Adult Aging and Culture on Theory of Mind.

OBJECTIVES: Older adults tend to have poorer Theory of Mind (ToM) than their younger counterparts, and this has been shown in both Western and Asian cultures. We examined the role of working memory (WM) in age differences in ToM, and whether this was moderated by education and culture (the United Kingdom vs. Malaysia). METHODS: We used 2 ToM tests with differing demands on updating multiple mental states (false belief) and applying social rules to mental state processing (faux pas). We also looked at the role of education, socioeconomic status, and WM. A total of 298 participants from the United Kingdom and Malaysia completed faux pas, false belief, and WM tasks. RESULTS: Age effects on some aspects of ToM were greater in the Malaysian compared to the UK sample. Malaysian older adults were poorer at faux pas detection, aspects of false belief, and WM compared to young adults. In subsequent moderated mediation analyses, we found that, specifically in the Malaysian sample, the mediating effects of WM on the age and ToM relationship occurred at the lowest levels of education. DISCUSSION: This pattern of results may reflect changes in the familiarity and cognitive load of explicit mental state attribution, along with cultural differences in the pace and nature of cognitive aging. Cultural differences in education and WM should be considered when researching age differences in ToM.

Revitalising sensualities of ageing with Parkinson's through dance.

Dance for Parkinson's can be characterised as a growing social movement which has become a worldwide phenomenon that gives rise to new questions about the meaning and importance of dance in relation to intersecting and overlapping identity categories of ageing and chronic conditions. In this article, we probe into the potentially constructive interplay between the lived experiences of Parkinson's dance as a space of revitalised sensuality and the cultural imaginations and values connected to the nexus between ageing and chronic conditions. Through a dialogic interpretive framework that recognises and ascribes value to the embodied experiences of Parkinson's dancers, we analyse how the experiences of living with Parkinson's as a chronic condition in the context of ageing are in interplay with the experiences of dancing as an embodied sensual activity. Consequently, we propose that, by emphasising the critical value of stories told by Parkinson's dancers, we are able to gain a more nuanced understanding of how Parkinson's dance affects the nexus between ageing and chronic conditions in revitalising and sensual ways.

Confronting the Complexities of "Co-Production" in Participatory Health Research: A Critical, Reflexive Approach to Power Dynamics in a Collaborative Project on Parkinson's Dance.

The literature on participatory health research describes various ways of overcoming obstacles to the co-production of knowledge by redressing power imbalances. In this article, we propose an approach to understanding and analyzing co-production which conceptualizes power, not as an obstacle but as an intrinsic, productive force in bringing "co-production" into being. In the approach, "co-production" is understood and analyzed as a tensional, complex, unstable entity that emerges in power-imbued negotiations of meanings throughout the research process. Focusing on a participatory project on Parkinson's dance, our purpose is to illustrate how the approach can generate knowledge about the complexities of "co-production." We also demonstrate how the approach can provide a foundation for a relational ethics that confronts the complexities head-on. In conclusion, we discuss the insights gained into the possibilities and challenges of co-production and the value of the approach as a foundation for relational ethics.

The interplay between gaze and consistency in scene viewing: Evidence from visual search by young and older adults.

Searching for an object in a complex scene is influenced by high-level factors such as how much the item would be expected in that setting (semantic consistency). There is also evidence that a person gazing at an object directs our attention towards it. However, there has been little previous research that has helped to understand how we integrate top-down cues such as semantic consistency and gaze to direct attention when searching for an object. Also, there are separate lines of evidence to suggest that older adults may be more influenced by semantic factors and less by gaze cues compared to younger counterparts, but this has not been investigated before in an integrated task. In the current study we analysed eye-movements of 34 younger and 30 older adults as they searched for a target object in complex visual scenes. Younger adults were influenced by semantic consistency in their attention to objects, but were more influenced by gaze cues. In contrast, older adults were more guided by semantic consistency in directing their attention, and showed less influence from gaze cues. These age differences in use of high-level cues were apparent early in processing (time to first fixation and probability of immediate fixation) but not in later processing (total time looking at objects and time to make a response). Overall, this pattern of findings indicates that people are influenced by both social cues and prior expectations when processing a complex scene, and the relative importance of these factors depends on age.

The Effects of Adult Ageing and Culture on the Tower of London Task.

Planning ability is important in everyday functioning, and a key measure to assess the preparation and execution of plans is the Tower of London (ToL) task. Previous studies indicate that older adults are often less accurate than the young on the ToL and that there may be cultural differences in performance on the task. However, potential interactions between age and culture have not previously been explored. In the current study we examined the effects of age on ToL performance in an Asian culture (Malaysia) and a Western culture (British) (n = 191). We also explored whether working memory, age, education, and socioeconomic status explained variance in ToL performance across these two cultures. Results indicated that age effects on ToL performance were greater in the Malaysian sample. Subsequent moderated mediation analysis revealed differences between the two cultures (British vs Malaysians), in that the age-related variance in ToL accuracy was accounted for by WM capacity at low and medium education levels only in the Malaysian sample. Demographic variables could not explain additional variance in ToL speed or accuracy. These results may reflect cultural differences in the familiarity and cognitive load of carrying out complex planning tasks.

Multiple sclerosis, emotion perception and social functioning.

People with multiple sclerosis (MS) can experience problems in interpreting others' emotions from faces or voices. However, to date little is known about whether difficulties in emotion perception in MS are related to broader aspects of social functioning. Also, there are few studies reporting the effect of MS on more ecologically valid assessments of emotion perception using multimodal videos. The current study looks at (1) the effect of MS on perceiving emotions from faces, voices and multimodal videos; (2) the possible role of slowed processing and executive dysfunction in emotion perception problems in MS and (3) the relationship between emotion perception and broader social functioning in MS. 53 people with MS and 31 healthy controls completed tasks of emotion perception and cognition, and assessed their levels of social support and social participation. Participants with MS performed worse than demographically matched controls on all measures of emotion perception. Emotion perception performance was related to cognitive measures in those with MS. Also, significant associations were found between emotion perception difficulties in MS and poorer social function. In particular, people with MS who had poorer emotion perception also reported lower levels of social support from their friends, and regression analysis showed that this prediction was maintained even when disease severity and cognitive function were taken into account. These results show that problems with emotion perception in MS extend to more realistic tasks and may predict key aspects of social functioning.

Imprinting methylation predicts hippocampal volumes and hyperintensities and the change with age in later life.

Epigenetic imprinting is important for neurogenesis and brain function. Hippocampal volumes and brain hyperintensities in late life have been associated with early life circumstances. Epigenetic imprinting may underpin these associations. Methylation was measured at 982 sites in 13 imprinted locations in blood samples from a longitudinal cohort by bisulphite amplicon sequencing. Hippocampal volumes and hyperintensities were determined at age 64y and 72y using MRI. Hyperintensities were determined in white matter, grey matter and infratentorial regions. Permutation methods were used to adjust for multiple testing. At 64y, H19/IGF2 and NESPAS methylation predicted hippocampal volumes. PEG3 predicted hyperintensities in hippocampal grey matter, and white matter. GNASXL predicted grey matter hyperintensities. Changes with age were predicted for hippocampal volume (MEST1, KvDMR, L3MBTL, GNASXL), white matter (MEST1, PEG3) and hippocampal grey matter hyperintensities (MCTS2, GNASXL, NESPAS, L3MBTL, MCTS2, SNRPN, MEST1). Including childhood cognitive ability, years in education, or socioeconomic status as additional explanatory variables in regression analyses did not change the overall findings. Imprinting methylation in multiple genes predicts brain structures, and their change over time. These findings are potentially relevant to the development of novel tests of brain structure and function across the life-course, strategies to improve cognitive outcomes, and our understanding of early influences on brain development and function.

The detrimental effects of mood on prospective memory are modulated by age.

Everyday fluctuations in mood can influence our ability to remember to carry out intentions (prospective memory [PM]). Theories of mood-cognition interaction make differing predictions about the effects of positive and negative mood states on cognition that may change in aging. To test these predictions, we looked at the effects of age and induced mood on different types of PM tasks. Results showed that on a task which required constant attentional monitoring (event-based PM) young adults' performance was impaired by negative mood, whereas older adults' performance was not influenced by mood. Further analyses indicated that the deleterious effects of negative mood states in young participants were related to decreased monitoring. In another task which required more intermittent monitoring (time-based PM), older adults' performance actually improved under positive mood, whereas young adults showed no effect of mood. Contrary to predictions, these age differences were not related to improved emotion regulation in old age. We conclude that young adults are more likely than older to show PM failures caused by negative mood. Future research priorities are outlined to better understand the motivational and task characteristics which influence this phenomenon. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Visual attentional orienting by eye gaze: A meta-analytic review of the gaze-cueing effect.

Given limitations in the amount of visual information that a person can simultaneously process through to conscious perception, selective visual attention is necessary. Visual signals in the environment aid this selection process by triggering reflexive shifts of covert attention to locations of potential importance. One such signal appears to be others' eye gaze. Indeed, a gaze-cueing effect, whereby healthy adults respond faster to targets that are presented at locations cued rather than miscued by eye gaze has been consistently observed in the empirical literature. Critically though, the influences of task and cue features on this effect are not well understood. To address this gap, we report a meta-analytic integration of 423 gaze-cueing effects using a multilevel approach. A gaze-cueing effect emerged across all levels of the assessed task and cue features, indicating that others' eye gaze reliably directs observers' attention. We found that the magnitude of the gaze-cueing effect was moderated by whether direct gaze cues preceded directional gaze cues or not; the cue-target stimulus onset asynchrony (SOA), whether participants had to detect, localize, or categorize targets; and the cue's facial expression. Whether or not the gaze cue remained on screen after the target appeared, and whether schematic faces, computer-generated faces, or images of real faces were used as cues, did not appear to reliably function as moderators. The theoretical implications of these findings are discussed, particularly in relation to the social attention system. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Engaging Stakeholders in the Design and Conduct of Embedded Pragmatic Clinical Trials for Alzheimer's Disease and Alzheimer's Disease-Related Dementias.

Embedded pragmatic clinical trials (ePCTs) of nondrug interventions for Alzheimer's disease and Alzheimer's disease-related dementias (AD/ADRD) are conducted in real-world clinical settings and designed to generate an evidence base to inform clinical and policy decisions about care for this vulnerable population. The ePCTs exist within a complex ecosystem of relationships between researchers, payors, policymakers, healthcare systems, direct care staff, advocacy groups, families, caregivers, and people living with dementia (PLWD). Because the rapid increase of the number of Americans with AD/ADRD outpaces curative treatments, there is an urgent need to mobilize the power of these relationships to improve dementia care and address a mounting public health crisis. Stakeholder engagement in ePCTs is essential to generate research questions, establish the relevancy of trials to the intended end users, and understand the factors that influence dissemination and implementation in real-world clinical settings. The process of including stakeholders in ePCTs for dementia is similar to stakeholder engagement in ePCTs for other diseases and conditions; however, the unique nature of embedded research, prevalence of caregiver and provider burden, and the progressive worsening of cognitive impairment in PLWD must be approached with additional strategies. This article presents key considerations of stakeholder engagement for ePCTs in AD/ADRD and main activities of the stakeholder engagement team in the National Institute on Aging IMPACT Collaboratory to move the field forward. J Am Geriatr Soc 68:S62-S67, 2020.

Minding the Gap Between the Policy and Practice of Patient-Centeredness: Cocreating a Model for Tensional Dialogue in the "Active Patient Support" Program.

Several studies identify obstacles to patient-centered care that can be eradicated by bridging the gap between policy goals and practice. In this article, "patient-centeredness" is theorized as an unstable entity riddled with intrinsic, ineradicable tensions. The purpose of the article is to propose a reflexive approach to the tensions as the most appropriate strategy for narrowing the gap between policy and practice. The reflexive approach is illustrated in an account of an action research project on a Danish, patient-centered initiative, "Active Patient Support." The account focuses on the development of a dialogic communication model through collaborative, reflexive analyses of the tensions in the enactment of "patient-centeredness" in dialogue between health care practitioners and citizens-in particular, the tension between empowerment and self-discipline. Finally, the conceptual expansion of one of the dimensions of patient-centeredness, "health-practitioner-as-person," is discussed as a platform for reflexivity, and the limitations of reflexivity are addressed.

Is Individualism Suicidogenic? Findings From a Multinational Study of Young Adults From 12 Countries.

The associations of individualistic versus collectivistic value orientations with suicidal ideation and attempts, attitudes towards suicide and towards suicidal individuals, and psychological distress were investigated across 12 nations (N = 5572 university students). We expected differential associations of value orientations with suicidal behavior and moderating effects of the prevailing value orientations in the various countries. Findings showed that intermediate levels of individualism appeared protective against suicide attempts across all investigated nations, but that, otherwise, there seemingly are no universal associations of individualism and collectivism with suicidal behaviors. High collectivism was associated with less suicidal ideation only in individualistic countries. Low individualism appeared to be a risk factor for suicidal ideation specifically in Muslim collectivistic cultures, whereas high individualism in Asian collectivistic cultures. Collectivistic values are uniformly associated with less permissive attitudes to suicide, whereas individualistic values with a more stigmatized view of suicidal behavior. Both individualistic and collectivistic values were associated with socially accepting attitudes to a suicidal peer, helping a suicidal friend, and emotional involvement. The associations of individualistic and collectivistic values with disapproving attitudes to suicidal disclosure were complex. Beliefs in punishment after death for suicide, seeing suicide as mental illness, and emotional involvement with a suicidal friend were lower in high-suicide-rate countries. These evidence patterns are discussed in the light of related research evidence, along with directions for future research in this area.

Task characteristics influence facial emotion recognition age-effects: A meta-analytic review.

Relative to their young counterparts, older adults are poorer at recognizing facial expressions. A 2008 meta-analysis of 17 facial emotion recognition data sets showed that these age-related difficulties are not uniform. Rather, they are greatest for the emotions of anger, fear, and sadness, comparative with happiness and surprise, with no age-effect found for disgust. Since then, there have been many methodological advances in assessing emotion recognition. The current comprehensive meta-analysis systematically tested the influence of task characteristics (e.g., photographs vs. videos). The meta-analysis included 102 data sets that compared facial emotion recognition in older and young adult samples (N = 10,526). With task type combined, the pattern of age-effects across emotions was mostly consistent with the previous meta-analysis (i.e., largest age-effects for anger, fear, sadness; no effect for disgust). However, the magnitude and direction of age-effects were strongly influenced by elements of task design. Specifically, videos produced relatively moderate age-effects across all emotions, which indicates that older adults may not exhibit a positivity effect for facial emotion recognition. For disgust recognition, older adults demonstrated superior accuracy to young adults for the most common image set (Pictures of Facial Affect). However, they were poorer than young adults at recognizing this emotion for all other stimulus formats and image sets, which suggests that they do not retain disgust recognition. We discuss the implications that such diversity in the age-effects produced by different facial emotion recognition task designs has for understanding real-world deficits and task selection in future emotion recognition studies. (PsycINFO Database Record (c) 2020 APA, all rights reserved).

Visual attention, biological motion perception, and healthy ageing.

Biological motion perception is the ability of the visual system to perceive complex human movement patterns. The previous studies have shown a direct link between attentional abilities and performance on biological motion tasks, both of which have been shown to deteriorate with age. However, it is not known whether there is a direct link between age-related deficits in biological motion processing and attention. Here, we investigated whether age-related changes in biological motion perception are mediated by impaired attentional abilities. To assess basic biological motion performance, we asked 42 younger (M = 21 years) and 39 older adults (M = 69 years) to indicate the facing direction of point-light actions. Performance did not differ between age groups. We assessed visual spatial and selective attentional abilities, using a range of tasks: conjunctive visual search, spatial cueing, and the Stroop task. Across all tasks, older adults were significantly slower to respond and exhibited larger interference/cueing effects, compared to younger adults. To assess attentional demands in relation with biological motion perception, participants performed a biological motion search task for which they had to indicate the presence of a target point-light walker among a varied number of distracters. Older adults were slower, and generally worse than younger adults at discriminating the walkers. Correlations showed that there was no significant relationship between performance in attention tasks and biological motion processing, which indicates that age-related changes in biological motion perception are unlikely to be driven by general attentional decline.

The Experiences of Persons Living with Dementia Planning for a Dementia Research Meeting. Lessons Learned From the National Research Summit on Care, Services, and Supports for Persons With Dementia and Their Caregivers.

OBJECTIVE: A stakeholder group for persons living with dementia (PLWD) was convened to support the work of a major US dementia research meeting. The objectives of this examination are to present the steps used to implement the Group and guidance for both PLWD and researchers for partnering on research conference planning and participation. METHODS: PLWD met monthly to provide input into the agenda for the 2017 Research Summit on Dementia Care and some Group members also presented at the Summit. Following the Summit, the Group reviewed their contributions and completed an evaluation of the Group process, identifying best practices to support future efforts. RESULTS: Group members were initially unsure about participating due to concerns about ability to contribute and concerns about disease progression. Members reported that participation was a positive experience, however, identifying Group-led governance and attention to Group work process as important contributors. In addition to giving input to the Summit and having the opportunity to interact with researchers, sharing personal experiences with each other was part of the value of the Group to members. Careful Group selection and attention to governance were among the Best Practices members. CONCLUSION: Despite initial uncertainty among members about participating as a Stakeholder Group to inform a national research meeting, members developed a successful process for governance, convening, and providing input to a major national research meeting. Group's self-evaluation yielded specific strategies likely to be useful in formation and implementation of future partnerships between researchers and persons living with dementia.