218 results on '"Crutch SJ"'
Search Results
2. Better conversations: a language and communication intervention for aphasia in posterior cortical atrophy
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Volkmer, A., primary, Farrington-Douglas, C, additional, Crutch, Sj, additional, Beeke, S, additional, Warren, Jd, additional, and Yong, Kxx, additional
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- 2022
- Full Text
- View/download PDF
3. The Development of Videoconference-Based Support for People Living With Rare Dementias and Their Carers: Protocol for a 3-Phase Support Group Evaluation
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Waddington, C, Harding, E, Brotherhood, E, Abbott, ID, Barker, S, Camic, PM, Ezeofor, V, Gardner, H, Grillo, A, Hardy, C, Hoare, Z, McKee-Jackson, R, Moore, K, O'Hara, T, Roberts, J, Rossi-Harries, S, Suarez-Gonzalez, A, Sullivan, MP, Edwards, RT, Williams, MVDB, Walton, J, Willoughby, A, Windle, G, Winrow, E, Wood, O, Zimmermann, N, Crutch, SJ, Stott, J, Waddington, C, Harding, E, Brotherhood, E, Abbott, ID, Barker, S, Camic, PM, Ezeofor, V, Gardner, H, Grillo, A, Hardy, C, Hoare, Z, McKee-Jackson, R, Moore, K, O'Hara, T, Roberts, J, Rossi-Harries, S, Suarez-Gonzalez, A, Sullivan, MP, Edwards, RT, Williams, MVDB, Walton, J, Willoughby, A, Windle, G, Winrow, E, Wood, O, Zimmermann, N, Crutch, SJ, and Stott, J
- Abstract
BACKGROUND: People living with rarer dementias face considerable difficulty accessing tailored information, advice, and peer and professional support. Web-based meeting platforms offer a critical opportunity to connect with others through shared lived experiences, even if they are geographically dispersed, particularly during the COVID-19 pandemic. OBJECTIVE: We aim to develop facilitated videoconferencing support groups (VSGs) tailored to people living with or caring for someone with familial or sporadic frontotemporal dementia or young-onset Alzheimer disease, primary progressive aphasia, posterior cortical atrophy, or Lewy body dementia. This paper describes the development, coproduction, field testing, and evaluation plan for these groups. METHODS: We describe a 3-phase approach to development. First, information and knowledge were gathered as part of a coproduction process with members of the Rare Dementia Support service. This information, together with literature searches and consultation with experts by experience, clinicians, and academics, shaped the design of the VSGs and session themes. Second, field testing involved 154 Rare Dementia Support members (people living with dementia and carers) participating in 2 rounds of facilitated sessions across 7 themes (health and social care professionals, advance care planning, independence and identity, grief and loss, empowering your identity, couples, and hope and dementia). Third, a detailed evaluation plan for future rounds of VSGs was developed. RESULTS: The development of the small groups program yielded content and structure for 9 themed VSGs (the 7 piloted themes plus a later stages program and creativity club for implementation in rounds 3 and beyond) to be delivered over 4 to 8 sessions. The evaluation plan incorporated a range of quantitative (attendance, demographics, and geography; pre-post well-being ratings and surveys; psycholinguistic analysis of conversation; facial emotion recognition; facilitato
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- 2022
4. 'Because my brain isn't as active as it should be, my eyes don't always see' - a qualitative exploration of the stress process for those living with posterior cortical atrophy
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Harding, E, Sullivan, MP, Woodbridge, R, Yong, KXX, McIntyre, A, Gilhooly, ML, Gilhooly, KJ, and Crutch, SJ
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Copyright © Article author(s) 2018. Objectives: To explore the stress process for individuals living with posterior cortical atrophy (PCA) and their families. Design A qualitative study using in-depth semi-structured dyadic and individual interviews with people living with a diagnosis of PCA and a family carer. Interview transcripts were thematically analysed. setting Participants’ homes. Participants 20 individuals in the mild to moderate stages of PCA and 20 family carers. Findings: Three major themes were identified: (1) the diagnostic journey: mostly an unsettling and convoluted process, owing to the early age of onset, rarity and atypical symptom profile of PCA. (2) Interactions with the physical environment: profound difficulties with functional and leisure activities were usually compensated for with adaptations maximising familiarity or simplicity. (3) Implications within the psychosocial environment: symptoms impacted individuals’ sense of independence and identity and required reallocations of roles and responsibilities. Ongoing uncertainties and the progressive nature of PCA caused most dyads to take a ‘one day at a time’ approach to coping. Relatively well-preserved insight and memory were a benefit and burden, as individuals shared the illness experience with family members and also compared their current situation to pre-diagnosis. The experience was framed by background and contextual factors and understood within an ever-changing temporal context. Conclusion The stress process in PCA is characterised by uncertainty and unpredictability from diagnosis through to ongoing management. The provision of tailored information about cortical visual problems and associated functional difficulties, time-sensitive environmental adaptations to help those with PCA to identify what and where things are and psychosocial interventions for the marital/family unit as a whole would be useful to improve both functional status and psychological well-being. Future research exploring (1) stress and coping in the later stages of PCA and (2) the nature and impact of visual impairment(s) in typical Alzheimer’s disease would be worthwhile. Economic and Social Research Council and National Institute for Health Research
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- 2018
5. Functional neuroanatomy of speech signal decoding in primary progressive aphasias
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Hardy, CJD, Agustus, JL, Marshall, CR, Clark, CN, Russell, LL, Brotherhood, EV, Bond, RL, Fiford, CM, Ondobaka, S, Thomas, DL, Crutch, SJ, Rohrer, JD, and Warren, JD
- Abstract
The pathophysiology of primary progressive aphasias remains poorly understood. Here, we addressed this issue using activation fMRI in a cohort of 27 patients with primary progressive aphasia (nonfluent, semantic, and logopenic variants) versus 15 healthy controls. Participants listened passively to sequences of spoken syllables in which we manipulated 3-key auditory speech signal characteristics: temporal regularity, phonemic spectral structure, and pitch sequence entropy. Relative to healthy controls, nonfluent variant patients showed reduced activation of medial Heschl's gyrus in response to any auditory stimulation and reduced activation of anterior cingulate to temporal irregularity. Semantic variant patients had relatively reduced activation of caudate and anterior cingulate in response to increased entropy. Logopenic variant patients showed reduced activation of posterior superior temporal cortex to phonemic spectral structure. Taken together, our findings suggest that impaired processing of core speech signal attributes may drive particular progressive aphasia syndromes and could index a generic physiological mechanism of reduced computational efficiency relevant to all these syndromes, with implications for development of new biomarkers and therapeutic interventions.
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- 2017
6. Functional neuroanatomy of auditory scene analysis in
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Golden, HL, Agustus, JL, Goll, JC, Downey, LE, Mummery, CJ, Schott, JM, Crutch, SJ, and Warren, JD
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1109 Neurosciences - Abstract
Auditory scene analysis is a demanding computational process that is performed automatically and efficiently by the healthy brain but vulnerable to the neurodegenerative pathology of Alzheimer's disease. Here we assessed the functional neuroanatomy of auditory scene analysis in Alzheimer's disease using the well-known ‘cocktail party effect’ as a model paradigm whereby stored templates for auditory objects (e.g., hearing one's spoken name) are used to segregate auditory ‘foreground’ and ‘background’. Patients with typical amnestic Alzheimer's disease (n = 13) and age-matched healthy individuals (n = 17) underwent functional 3T-MRI using a sparse acquisition protocol with passive listening to auditory stimulus conditions comprising the participant's own name interleaved with or superimposed on multi-talker babble, and spectrally rotated (unrecognisable) analogues of these conditions. Name identification (conditions containing the participant's own name contrasted with spectrally rotated analogues) produced extensive bilateral activation involving superior temporal cortex in both the AD and healthy control groups, with no significant differences between groups. Auditory object segregation (conditions with interleaved name sounds contrasted with superimposed name sounds) produced activation of right posterior superior temporal cortex in both groups, again with no differences between groups. However, the cocktail party effect (interaction of own name identification with auditory object segregation processing) produced activation of right supramarginal gyrus in the AD group that was significantly enhanced compared with the healthy control group. The findings delineate an altered functional neuroanatomical profile of auditory scene analysis in Alzheimer's disease that may constitute a novel computational signature of this neurodegenerative pathology.
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- 2015
7. Abnormalities of fixation, saccade and pursuit in posterior cortical atrophy
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Shakespeare, TJ, Kaski, D, Yong, KXX, Paterson, RW, Slattery, CF, Ryan, NS, Schott, JM, and Crutch, SJ
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Male ,genetic structures ,Clinical Neurology ,SQUARE-WAVE JERKS ,Fixation, Ocular ,Neuropsychological Tests ,agnosia ,17 Psychology And Cognitive Sciences ,Ocular Motility Disorders ,Alzheimer Disease ,visual function ,Saccades ,Humans ,ATTENTIONAL DISENGAGEMENT ,Aged ,FRONTOTEMPORAL LOBAR DEGENERATION ,Science & Technology ,Neurology & Neurosurgery ,Corticomedial Nuclear Complex ,parietal lobe ,Neurosciences ,oculomotor ,PROGRESSIVE SUPRANUCLEAR PALSY ,11 Medical And Health Sciences ,Alzheimer's disease ,Middle Aged ,COGNITIVE IMPAIRMENT ,Magnetic Resonance Imaging ,Pursuit, Smooth ,ALZHEIMERS-DISEASE ,PARKINSONIAN SYNDROMES ,ROC Curve ,CORTICOBASAL DEGENERATION ,Female ,Neurosciences & Neurology ,EYE-MOVEMENTS ,Atrophy ,HUMAN CEREBRAL-CORTEX ,Life Sciences & Biomedicine ,Alzheimer’s disease - Abstract
The clinico-neuroradiological syndrome posterior cortical atrophy is the cardinal ‘visual dementia’ and most common atypical Alzheimer’s disease phenotype, offering insights into mechanisms underlying clinical heterogeneity, pathological propagation and basic visual phenomena (e.g. visual crowding). Given the extensive attention paid to patients’ (higher order) perceptual function, it is surprising that there have been no systematic analyses of basic oculomotor function in this population. Here 20 patients with posterior cortical atrophy, 17 patients with typical Alzheimer’s disease and 22 healthy controls completed tests of fixation, saccade (including fixation/target gap and overlap conditions) and smooth pursuit eye movements using an infrared pupil-tracking system. Participants underwent detailed neuropsychological and neurological examinations, with a proportion also undertaking brain imaging and analysis of molecular pathology. In contrast to informal clinical evaluations of oculomotor dysfunction frequency (previous studies: 38%, current clinical examination: 33%), detailed eyetracking investigations revealed eye movement abnormalities in 80% of patients with posterior cortical atrophy (compared to 17% typical Alzheimer’s disease, 5% controls). The greatest differences between posterior cortical atrophy and typical Alzheimer’s disease were seen in saccadic performance. Patients with posterior cortical atrophy made significantly shorter saccades especially for distant targets. They also exhibited a significant exacerbation of the normal gap/overlap effect, consistent with ‘sticky fixation’. Time to reach saccadic targets was significantly associated with parietal and occipital cortical thickness measures. On fixation stability tasks, patients with typical Alzheimer’s disease showed more square wave jerks whose frequency was associated with lower cerebellar grey matter volume, while patients with posterior cortical atrophy showed large saccadic intrusions whose frequency correlated significantly with generalized reductions in cortical thickness. Patients with both posterior cortical atrophy and typical Alzheimer’s disease showed lower gain in smooth pursuit compared to controls. The current study establishes that eye movement abnormalities are near-ubiquitous in posterior cortical atrophy, and highlights multiple aspects of saccadic performance which distinguish posterior cortical atrophy from typical Alzheimer’s disease. We suggest the posterior cortical atrophy oculomotor profile (e.g. exacerbation of the saccadic gap/overlap effect, preserved saccadic velocity) reflects weak input from degraded occipito-parietal spatial representations of stimulus location into a superior collicular spatial map for eye movement regulation. This may indicate greater impairment of identification of oculomotor targets rather than generation of oculomotor movements. The results highlight the critical role of spatial attention and object identification but also precise stimulus localization in explaining the complex real world perception deficits observed in posterior cortical atrophy and many other patients with dementia-related visual impairment.
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- 2015
8. Erratum: Prominent effects and neural correlates of visual crowding in a neurodegenerative disease population
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Yong, KXX, Shakespeare, TJ, Cash, D, Henley, SMD, Nicholas, JM, Ridgway, GR, Golden, HL, Warrington, EK, Carton, AM, Kaski, D, Schott, JM, Warren, JD, and Crutch, SJ
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17 Psychology And Cognitive Sciences ,Science & Technology ,Neurology & Neurosurgery ,Clinical Neurology ,Neurosciences ,Neurosciences & Neurology ,11 Medical And Health Sciences ,Life Sciences & Biomedicine - Abstract
The publishers would like to apologise for an error introduced during copyediting into the paper Keir X. X. Yong, Timothy J. Shakespeare, Dave Cash, Susie M. D. Henley, Jennifer M. Nicholas, Gerard R. Ridgway, Hannah L. Golden, Elizabeth K. Warrington, Amelia M. Carton, Diego Kaski, Jonathan M. Schott, Jason D. Warren, Sebastian J. Crutch. Prominent effects and neural correlates of visual crowding in a neurodegenerative disease population. Brain 2014; 137: 3284–99; doi:10.1093/brain/awu293.
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- 2015
9. Auditory spatial processing in Alzheimer's disease
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Golden, HL, Nicholas, JM, Yong, KX, Downey, LE, Schott, JM, Mummery, CJ, Crutch, SJ, and Warren, JD
- Abstract
The location and motion of sounds in space are important cues for encoding the auditory world. Spatial processing is a core component of auditory scene analysis, a cognitively demanding function that is vulnerable in Alzheimer's disease. Here we designed a novel neuropsychological battery based on a virtual space paradigm to assess auditory spatial processing in patient cohorts with clinically typical Alzheimer's disease (n = 20) and its major variant syndrome, posterior cortical atrophy (n = 12) in relation to healthy older controls (n = 26). We assessed three dimensions of auditory spatial function: externalized versus non-externalized sound discrimination, moving versus stationary sound discrimination and stationary auditory spatial position discrimination, together with non-spatial auditory and visual spatial control tasks. Neuroanatomical correlates of auditory spatial processing were assessed using voxel-based morphometry. Relative to healthy older controls, both patient groups exhibited impairments in detection of auditory motion, and stationary sound position discrimination. The posterior cortical atrophy group showed greater impairment for auditory motion processing and the processing of a non-spatial control complex auditory property (timbre) than the typical Alzheimer's disease group. Voxel-based morphometry in the patient cohort revealed grey matter correlates of auditory motion detection and spatial position discrimination in right inferior parietal cortex and precuneus, respectively. These findings delineate auditory spatial processing deficits in typical and posterior Alzheimer's disease phenotypes that are related to posterior cortical regions involved in both syndromic variants and modulated by the syndromic profile of brain degeneration. Auditory spatial deficits contribute to impaired spatial awareness in Alzheimer's disease and may constitute a novel perceptual model for probing brain network disintegration across the Alzheimer's disease syndromic spectrum.
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- 2014
10. Early-onset Alzheimer disease clinical variants: multivariate analyses of cortical thickness.
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Ridgway GR, Lehmann M, Barnes J, Rohrer JD, Warren JD, Crutch SJ, Fox NC, Ridgway, Gerard R, Lehmann, Manja, Barnes, Josephine, Rohrer, Jonathan D, Warren, Jason D, Crutch, Sebastian J, and Fox, Nick C
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- 2012
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11. "I Want to Do Something" - Exploring What Makes Activities Meaningful for Community-Dwelling People Living With Dementia: A Focused Ethnographic Study.
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Harding E, Sullivan MP, Camic PM, Yong KXX, Stott J, and Crutch SJ
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- Humans, Female, Male, Aged, Aged, 80 and over, Alzheimer Disease psychology, Qualitative Research, Motivation, Middle Aged, Anthropology, Cultural, Independent Living psychology, Quality of Life, Dementia psychology, Activities of Daily Living
- Abstract
Supporting ageing in place, quality of life, and activity engagement are public health priorities for people with dementia. The importance of maintaining opportunities for meaningful activities has been widely acknowledged for those with dementia in long-term care, but little is known about what makes activities meaningful for, and how they are experienced by, people with different types of dementia in their own homes. This study used focussed ethnographic methods to explore the motivations and meanings of everyday activity engagement within the homes of 10 people with memory-led Alzheimer's disease and 10 people with posterior cortical atrophy. While participants' interactions with their everyday environments were challenged by their diagnoses, they were all finding ways to continue meaning-making via various activities. The main findings are encapsulated in three themes: (1) The fun and the function of activities; (2) Reciprocities of care, and (3) The constitution and continuity of (a changing) self. Ongoing engagement with both fun and functional activities offered participants living with different dementias opportunities to connect with others, to offer care and support (as well as receive it), and to maintain a sense of self and identity. Implications are discussed regarding the development and delivery of tailored interventions and support to enable continued engagement in meaningful activities for people with different types of dementia living in the community., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
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- 2024
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12. Associations between accelerated forgetting, amyloid deposition and brain atrophy in older adults.
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Lu K, Baker J, Nicholas JM, Street RE, Keuss SE, Coath W, James SN, Keshavan A, Weston PSJ, Murray-Smith H, Cash DM, Malone IB, Wong A, Fox NC, Richards M, Crutch SJ, and Schott JM
- Abstract
Accelerated long-term forgetting (ALF) is the phenomenon whereby material is retained normally over short intervals (e.g. minutes) but forgotten abnormally rapidly over longer periods (days or weeks). ALF may be an early marker of cognitive decline, but little is known about its relationships with preclinical Alzheimer's disease pathology, and how memory selectivity may influence which material is forgotten. We assessed ALF in 'Insight 46', a sub-study of the MRC National Survey of Health and Development (a population-based cohort born during one week in 1946) (n=429; 47% female; assessed aged ∼73 years). ALF assessment comprised visual and verbal memory tests: Complex Figure Drawing and the Face-Name Associative Memory Exam (FNAME). ALF scores were calculated as the percentage of material retained after 7 days, relative to 30 minutes. In 306 cognitively-normal participants, we investigated effects on ALF of β-amyloid pathology (quantified using 18F-Florbetapir-PET, classified as positive/negative) and whole-brain and hippocampal atrophy rate (quantified from serial T1-MRI over ∼2.4 years preceding the ALF assessment), as well as interactions between these pathologies. We categorized Complex Figure Drawing items as 'outline' or 'detail', to test our hypothesis that forgetting the outline of the structure would be more sensitive to the effect of brain pathologies. We also investigated associations between ALF and Subjective Cognitive Decline, measured with the MyCog questionnaire. Complex Figure 'outline' items were better retained than 'detail' items (mean retention over 7 days = 94% vs 72%). Amyloid-positive participants showed greater forgetting of the Complex Figure outline, compared to amyloid-negatives (90% vs 95%; P<0.01). There were interactions between amyloid pathology and cerebral atrophy, such that whole-brain and hippocampal atrophy predicted greater ALF on Complex Figure Drawing among amyloid-positives only (e.g. 1.9 percentage-points lower retention per ml/year of whole-brain atrophy [95% confidence intervals 0.5, 3.7]; P<0.05). Greater ALF on FNAME was associated with increased rate of hippocampal atrophy. ALF on Complex Figure Drawing also correlated with subjective cognitive decline (-0.45 percentage-points per MyCog point [-0.85, -0.05], P<0.05). These results provide evidence of associations between some measures of ALF and biomarkers of brain pathologies and subjective cognitive decline in cognitively-normal older adults. On Complex Figure Drawing, 'outline' items were better remembered than 'detail' items - illustrating the strategic role of memory selectivity - but 'outline' items were also relatively more vulnerable to ALF in individuals with amyloid pathology. Overall, our findings suggest that ALF may be a sensitive marker of cognitive changes in preclinical Alzheimer's disease., (© The Author(s) 2024. Published by Oxford University Press on behalf of the Guarantors of Brain.)
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- 2024
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13. Data-driven neuroanatomical subtypes of primary progressive aphasia.
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Taylor B, Bocchetta M, Shand C, Todd EG, Chokesuwattanaskul A, Crutch SJ, Warren JD, Rohrer JD, Hardy CJD, and Oxtoby NP
- Abstract
The primary progressive aphasias are rare, language-led dementias, with three main variants: semantic, non-fluent/agrammatic, and logopenic. Whilst semantic variant has a clear neuroanatomical profile, the non-fluent/agrammatic and logopenic variants are difficult to discriminate from neuroimaging. Previous phenotype-driven studies have characterised neuroanatomical profiles of each variant on MRI. In this work we used a machine learning algorithm known as SuStaIn to discover data-driven neuroanatomical "subtype" progression profiles and performed an in-depth subtype-phenotype analysis to characterise the heterogeneity of primary progressive aphasia. Our study included 270 participants with primary progressive aphasia seen for research in the UCL Queen Square Institute of Neurology Dementia Research Centre, with follow-up scans available for 137 participants. This dataset included individuals diagnosed with all three main variants (semantic: n=94, non-fluent/agrammatic: n=109, logopenic: n=51) as well as individuals with un-specified primary progressive aphasia (n=16). A data set of 66 patients (semantic n=37, non-fluent/agrammatic: n=29) from the ALLFTD North American cohort study, was used to validate our results. MRI scans were segmented and SuStaIn was employed on 19 regions of interest to identify neuroanatomical profiles independent of the diagnosis. We assessed the assignment of subtypes and stages, as well as their longitudinal consistency. We discovered four neuroanatomical subtypes of primary progressive aphasia, labelled S1 (left temporal), S2 (insula), S3 (temporoparietal), S4 (frontoparietal), exhibiting robustness to statistical scrutiny. S1 correlated strongly with semantic variant, while S2, S3, and S4 showed mixed associations with the logopenic and non-fluent/agrammatic variants. Notably, S3 displayed a neuroanatomical signature akin to a logopenic only signature, yet a significant proportion of logopenic cases were allocated to S2. The non-fluent/agrammatic variant demonstrated diverse associations with S2, S3, and S4. No clear relationship emerged between any of the neuroanatomical subtypes and the unspecified cases. At first follow up 84% of patients' subtype assignment was stable, and 91.9% of patients' stage assignment was stable. We partially validated our findings in the ALLFTD dataset, finding comparable qualitative patterns. Our study, leveraging machine learning on a large primary progressive aphasia dataset, delineated four distinct neuroanatomical patterns. Our findings suggest that separable spatio-temporal neuroanatomical phenotypes do exist within the PPA spectrum, but that these are noisy, particularly for nfvPPA and lvPPA. Furthermore, these phenotypes do not always conform to standard formulations of clinico-anatomical correlation. Understanding the multifaceted profiles of the disease, encompassing neuroanatomical, molecular, clinical, and cognitive dimensions, holds potential implications for clinical decision support., (© The Author(s) 2024. Published by Oxford University Press on behalf of the Guarantors of Brain.)
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- 2024
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14. What we mean when we say semantic: Toward a multidisciplinary semantic glossary.
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Reilly J, Shain C, Borghesani V, Kuhnke P, Vigliocco G, Peelle JE, Mahon BZ, Buxbaum LJ, Majid A, Brysbaert M, Borghi AM, De Deyne S, Dove G, Papeo L, Pexman PM, Poeppel D, Lupyan G, Boggio P, Hickok G, Gwilliams L, Fernandino L, Mirman D, Chrysikou EG, Sandberg CW, Crutch SJ, Pylkkänen L, Yee E, Jackson RL, Rodd JM, Bedny M, Connell L, Kiefer M, Kemmerer D, de Zubicaray G, Jefferies E, Lynott D, Siew CSQ, Desai RH, McRae K, Diaz MT, Bolognesi M, Fedorenko E, Kiran S, Montefinese M, Binder JR, Yap MJ, Hartwigsen G, Cantlon J, Bi Y, Hoffman P, Garcea FE, and Vinson D
- Abstract
Tulving characterized semantic memory as a vast repository of meaning that underlies language and many other cognitive processes. This perspective on lexical and conceptual knowledge galvanized a new era of research undertaken by numerous fields, each with their own idiosyncratic methods and terminology. For example, "concept" has different meanings in philosophy, linguistics, and psychology. As such, many fundamental constructs used to delineate semantic theories remain underspecified and/or opaque. Weak construct specificity is among the leading causes of the replication crisis now facing psychology and related fields. Term ambiguity hinders cross-disciplinary communication, falsifiability, and incremental theory-building. Numerous cognitive subdisciplines (e.g., vision, affective neuroscience) have recently addressed these limitations via the development of consensus-based guidelines and definitions. The project to follow represents our effort to produce a multidisciplinary semantic glossary consisting of succinct definitions, background, principled dissenting views, ratings of agreement, and subjective confidence for 17 target constructs (e.g., abstractness, abstraction, concreteness, concept, embodied cognition, event semantics, lexical-semantic, modality, representation, semantic control, semantic feature, simulation, semantic distance, semantic dimension). We discuss potential benefits and pitfalls (e.g., implicit bias, prescriptiveness) of these efforts to specify a common nomenclature that other researchers might index in specifying their own theoretical perspectives (e.g., They said X, but I mean Y)., (© 2024. The Author(s).)
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- 2024
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15. Suicide and dementia: A systematic review and meta-analysis of prevalence and risk factors.
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Desai R, Tsipa A, Fearn C, El Baou C, Brotherhood EV, Charlesworth G, Crutch SJ, Flanagan K, Kerti A, Kurana S, Medeisyte R, Nuzum E, Osborn TG, Salmoiraghi A, Stott J, and John A
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- Humans, Risk Factors, Prevalence, Suicide, Attempted statistics & numerical data, Suicide, Attempted psychology, Male, Dementia epidemiology, Dementia psychology, Suicide psychology, Suicide statistics & numerical data, Suicidal Ideation
- Abstract
Dementia is a global health concern with increasing numbers of people living long enough to develop dementia. People with dementia (PwD) may be particularly vulnerable to suicidality. However, suicide in PwD has not been thoroughly explored. The objective of this review was to determine the prevalence and risk factors of suicide in PwD. Five databases were searched from inception to July 2023. Peer-reviewed publications reporting prevalence, risk factors or quantitative summary data for suicide outcomes in PwD were included. Random effects models were used to calculate the pooled prevalence and effect sizes. 54 studies met inclusion criteria. In PwD, the point prevalence of suicidal ideation was 10 % (95 %CI=6 %;16 %), 2-year period prevalence of suicide attempts was 0.8 % (95 %CI=0.3 %;2 %), 10-year period prevalence of suicide attempts was 8.7 % (95 %CI=6.0 %%;12.7 %) and the incidence of death by suicide 0.1 % (95 %CI=0.1 %;0.2 %). Compared to not having dementia, a diagnosis of dementia increased risk of suicidal ideation (OR=1.62[95 %CI=1.17;2.24]) but not risk of suicide attempt (OR=1.77 [95 %CI=0.85;3.69]) or death by suicide (OR=1.30 [95 %CI=0.81;2.10]). People with moderate dementia had significantly increased risk of suicidal ideation than those with mild dementia (OR=1.59[95 %CI=1.11;2.28]), younger PwD were at increased risk of dying by suicide (OR=2.82[95 %CI=2.16;3.68]) and men with dementia were more likely to attempt (OR=1.28[95 %CI=1.25;1.31]) and die by suicide (OR=2.88[95 %CI=1.54;5.39]) than women with dementia. This review emphasises the need for mental health support and suicide prevention in dementia care, emphasising tailored approaches based on age, symptoms, and being male., Competing Interests: Declaration of Competing Interest None., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)
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- 2024
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16. Symptom-based staging for logopenic variant primary progressive aphasia.
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Hardy CJD, Taylor-Rubin C, Taylor B, Harding E, Gonzalez AS, Jiang J, Thompson L, Kingma R, Chokesuwattanaskul A, Walker F, Barker S, Brotherhood E, Waddington C, Wood O, Zimmermann N, Kupeli N, Yong KXX, Camic PM, Stott J, Marshall CR, Oxtoby NP, Rohrer JD, O'Shea F, Volkmer A, Crutch SJ, and Warren JD
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- Humans, Female, Male, Aged, Middle Aged, Disease Progression, Caregivers psychology, Cohort Studies, Australia, Aged, 80 and over, Severity of Illness Index, Alzheimer Disease diagnosis, Alzheimer Disease pathology, Alzheimer Disease complications, Aphasia, Primary Progressive diagnosis
- Abstract
Background and Purpose: Logopenic variant primary progressive aphasia (lvPPA) is a major variant presentation of Alzheimer's disease (AD) that signals the importance of communication dysfunction across AD phenotypes. A clinical staging system is lacking for the evolution of AD-associated communication difficulties that could guide diagnosis and care planning. Our aim was to create a symptom-based staging scheme for lvPPA, identifying functional milestones relevant to the broader AD spectrum., Methods: An international lvPPA caregiver cohort was surveyed on symptom development under an 'exploratory' survey (34 UK caregivers). Feedback from this survey informed the development of a 'consolidation' survey (27 UK, 10 Australian caregivers) in which caregivers were presented with six provisional clinical stages and feedback was analysed using a mixed-methods approach., Results: Six clinical stages were endorsed. Early symptoms included word-finding difficulty, with loss of message comprehension and speech intelligibility signalling later-stage progression. Additionally, problems with hearing in noise, memory and route-finding were prominent early non-verbal symptoms. 'Milestone' symptoms were identified that anticipate daily-life functional transitions and care needs., Conclusions: This work introduces a new symptom-based staging scheme for lvPPA, and highlights milestone symptoms that could inform future clinical scales for anticipating and managing communication dysfunction across the AD spectrum., (© 2024 The Authors. European Journal of Neurology published by John Wiley & Sons Ltd on behalf of European Academy of Neurology.)
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- 2024
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17. 'Talking lines': the stories of diagnosis and support as told by those with lived experience of rare forms of dementia.
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Rossi-Harries S, Harrison CR, Camic PM, Sullivan MP, Grillo A, Crutch SJ, and Harding E
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- Humans, Female, Male, Aged, Middle Aged, Aged, 80 and over, Social Support, Caregivers psychology, Interviews as Topic, Dementia diagnosis, Dementia psychology, Narration
- Abstract
Background: People living with, or caring for someone with, rare forms of dementia can encounter issues while obtaining a diagnosis and trying to access appropriate support. This can affect their wellbeing, quality of life, social relationships and employment status. This study makes use of an arts-based narrative approach to explore individual accounts of these experiences whilst also exploring how, in telling their stories, those affected by rare forms of dementia might invoke, and situate their stories in relation to, broader cultural narratives around dementia and illness., Methods: Semi-structured interviews were conducted via video-conferencing software with participants (N = 27), living with, or caring for someone with, a rare forms of dementia. Participants used line drawings to depict their journey from initial symptoms to the present day, followed by prompts to verbally narrate their experiences. All interview transcripts and line drawings were subjected to narrative analysis. Four sets of transcripts and drawings were then subjected to more in-depth analysis., Results: Analysis shed light on the struggles encountered by both care-partners and people with a diagnosis, while navigating a health and social care system that does not always understand their needs. This often led to individuals feeling isolated and unsupported. Accounts also depicted challenges to identity brought on by the process. The moment of diagnosis was also drawn in a complicated light. Individuals found comfort in gaining understanding, but felt fear at recognising upcoming challenges. Participants situated their own accounts against mainstream cultural narratives around what good support for cognitive impairment and dementia might look like, whilst also demonstrating the influential role they took on in pursuing the right care., Conclusions: The use of line drawing, alongside narrative interviews, allowed participants to tell complicated, sometimes anachronistic, stories about difficult experiences, whilst also reflecting on, and attaching meaning to, them. These stories highlighted pressing gaps in healthcare services and shone a light on the various pieces of collective action individuals were engaged in in order to improve them. Finally, in modelling some elements of the participants' service provision which were working, the narratives pointed to future directions services might move in., (© 2024. The Author(s).)
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- 2024
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18. Exploring experiential differences in everyday activities - A focused ethnographic study in the homes of people living with memory-led Alzheimer's disease and posterior cortical atrophy.
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Harding E, Sullivan MP, Camic PM, Yong KXX, Stott J, and Crutch SJ
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- Humans, Female, Male, Aged, Aged, 80 and over, Qualitative Research, Quality of Life psychology, Cerebral Cortex pathology, Independent Living, Alzheimer Disease psychology, Activities of Daily Living, Anthropology, Cultural, Atrophy
- Abstract
Background: Supporting ageing in place, quality of life and activity engagement are public health priorities for people living with dementia, but little is known about the needs and experiences of community-dwelling people with rarer forms of dementia with lesser known symptoms. Posterior cortical atrophy (PCA) is a rare form of dementia usually caused by Alzheimer's disease but which is characterised by diminished visual processing (rather than a dominant memory problem), which poses challenges for maintaining independence and accessing appropriate support., Methods: This study used a comparative qualitative design and focussed ethnographic methods to explore experiential differences in activity engagement for 10 people with the most common, memory-led presentation of Alzheimer's disease and 10 people with posterior cortical atrophy within their everyday home environments., Results: While the data collection revealed much rich variation in individual and contextual factors, some tentative high-level differences in the experiences of everyday activities could be drawn out, seemingly attributable to the different diagnoses' differing dominant symptoms. These included people with posterior cortical atrophy being less likely to use environmental cues to initiate activities, and more likely to withhold from asking for support because of preserved insight into the impact of this on carers. This lack of initiation of activities could be misinterpreted as apathy. People with posterior cortical atrophy also were discouraged from engaging in activities by disorientation within the home, and difficulties localising, identifying and manipulating objects. People with the more common, memory-led presentation of Alzheimer's disease exhibited more memory-based difficulties with engaging with activities such as forgetting planned activities, where to locate the items required for an activity and the steps involved. Despite these distinct symptom-led challenges, all participants and their family members demonstrated resourcefulness and resilience in making creative adaptations to support continued engagement in everyday activities, supporting the widely reported management strategies of people with dementia of the Alzheimer's type more generally., Conclusions: These findings offer helpful insights into some the differing impacts dementia related visual and memory impairments can have on everyday activity engagement, which will be helpful for others navigating these challenges and the health and social care practitioners working with people affected by these conditions. The findings also highlight the vast individual variation in the multitude of individual and contextual factors involved in everyday activity engagement, and suggest important areas for future work utilising methods which are similarly high in ecological validity and accessibility as the home-based focussed ethnographic methods utilised here., Competing Interests: Declaration of competing interest The authors declare that they have no competing interests., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)
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- 2024
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19. 'Misdiagnosed and Misunderstood': Insights into Rarer Forms of Dementia through a Stepwise Approach to Co-Constructed Research Poetry.
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Camic PM, Sullivan MP, Harding E, Gould M, Wilson L, Rossi-Harries S, Grillo A, McKee-Jackson R, Cox SM, Stott J, Brotherhood EV, Windle G, and Crutch SJ
- Abstract
This study investigated co-constructed research poetry as a way to understand the lived experiences of people affected by rarer dementia and as a means to use poetry to convey those experiences to healthcare professionals. Using mixed methods, 71 people living with rarer dementia and care-partners (stakeholders) contributed to co-constructing 27 poems with professional poets; stakeholders' verbatim words were analysed with descriptive qualitative analysis. Stakeholders were also surveyed and interviewed about their participation. Healthcare professionals ( n = 93) were surveyed to elicit their responses to learning through poetry and its acceptability as a learning tool. Poems conveyed a shared narrative of different aspects of lived experience, often owing to atypical symptoms, misunderstandings by professionals, lack of support pathways, and a continuous struggle to adapt. Stakeholder surveys indicated it was a valuable experience to both co-create and respond to the poems, whilst group interviews revealed people's experiences of the research poetry were characterised by reflection on lived experience, curiosity and exploration. Healthcare professionals' responses reinforced poetry's capacity to stimulate cognitive and affective learning specific to rare dementia support and prompt both empathy and critical thinking in practice. As the largest poetry-based study that we are aware of, this novel accessible approach of creating group poems yielded substantial information about the experiences and needs of those affected by rarer dementia and how poetry can contribute to healthcare education and training.
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- 2024
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20. How Do Care Partners of People with Rare Dementia Use Language in Online Peer Support Groups? A Quantitative Text Analysis Study.
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Hayes OS, El Baou C, Hardy CJD, Camic PM, Brotherhood EV, Harding E, and Crutch SJ
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We used quantitative text analysis to examine conversations in a series of online support groups attended by care partners of people living with rare dementias (PLWRD). We used transcripts of 14 sessions (>100,000 words) to explore patterns of communication in trained facilitators' ( n = 2) and participants' ( n = 11) speech and to investigate the impact of session agenda on language use. We investigated the features of their communication via Poisson regression and a clustering algorithm. We also compared their speech with a natural speech corpus. We found that differences to natural speech emerged, notably in emotional tone (d = -3.2, p < 0.001) and cognitive processes (d = 2.8, p < 0.001). We observed further differences between facilitators and participants and between sessions based on agenda. The clustering algorithm categorised participants' contributions into three groups: sharing experience, self-reflection, and group processes. We discuss the findings in the context of Social Comparison Theory. We argue that dedicated online spaces have a positive impact on care partners in combatting isolation and stress via affiliation with peers. We then discuss the linguistic mechanisms by which social support was experienced in the group. The present paper has implications for any services seeking insight into how peer support is designed, delivered, and experienced by participants.
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- 2024
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21. Updating the study protocol: Insight 46 - a longitudinal neuroscience sub-study of the MRC National Survey of Health and Development - phases 2 and 3.
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Murray-Smith H, Barker S, Barkhof F, Barnes J, Brown TM, Captur G, R E Cartlidge M, Cash DM, Coath W, Davis D, Dickson JC, Groves J, Hughes AD, James SN, Keshavan A, Keuss SE, King-Robson J, Lu K, Malone IB, Nicholas JM, Rapala A, Scott CJ, Street R, Sudre CH, Thomas DL, Wong A, Wray S, Zetterberg H, Chaturvedi N, Fox NC, Crutch SJ, Richards M, and Schott JM
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- Aged, Female, Humans, Male, Aging, Ambulatory Care, Brain, Observational Studies as Topic, Dementia
- Abstract
Background: Although age is the biggest known risk factor for dementia, there remains uncertainty about other factors over the life course that contribute to a person's risk for cognitive decline later in life. Furthermore, the pathological processes leading to dementia are not fully understood. The main goals of Insight 46-a multi-phase longitudinal observational study-are to collect detailed cognitive, neurological, physical, cardiovascular, and sensory data; to combine those data with genetic and life-course information collected from the MRC National Survey of Health and Development (NSHD; 1946 British birth cohort); and thereby contribute to a better understanding of healthy ageing and dementia., Methods/design: Phase 1 of Insight 46 (2015-2018) involved the recruitment of 502 members of the NSHD (median age = 70.7 years; 49% female) and has been described in detail by Lane and Parker et al. 2017. The present paper describes phase 2 (2018-2021) and phase 3 (2021-ongoing). Of the 502 phase 1 study members who were invited to a phase 2 research visit, 413 were willing to return for a clinic visit in London and 29 participated in a remote research assessment due to COVID-19 restrictions. Phase 3 aims to recruit 250 study members who previously participated in both phases 1 and 2 of Insight 46 (providing a third data time point) and 500 additional members of the NSHD who have not previously participated in Insight 46., Discussion: The NSHD is the oldest and longest continuously running British birth cohort. Members of the NSHD are now at a critical point in their lives for us to investigate successful ageing and key age-related brain morbidities. Data collected from Insight 46 have the potential to greatly contribute to and impact the field of healthy ageing and dementia by combining unique life course data with longitudinal multiparametric clinical, imaging, and biomarker measurements. Further protocol enhancements are planned, including in-home sleep measurements and the engagement of participants through remote online cognitive testing. Data collected are and will continue to be made available to the scientific community., (© 2024. The Author(s).)
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- 2024
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22. Symptom-led staging for semantic and non-fluent/agrammatic variants of primary progressive aphasia.
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Hardy CJD, Taylor-Rubin C, Taylor B, Harding E, Gonzalez AS, Jiang J, Thompson L, Kingma R, Chokesuwattanaskul A, Walker F, Barker S, Brotherhood E, Waddington C, Wood O, Zimmermann N, Kupeli N, Yong KXX, Camic PM, Stott J, Marshall CR, Oxtoby NP, Rohrer JD, Volkmer A, Crutch SJ, and Warren JD
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- Humans, Semantics, Neuropsychological Tests, Aphasia, Primary Progressive diagnosis, Alzheimer Disease
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Introduction: Here we set out to create a symptom-led staging system for the canonical semantic and non-fluent/agrammatic variants of primary progressive aphasia (PPA), which present unique diagnostic and management challenges not well captured by functional scales developed for Alzheimer's disease and other dementias., Methods: An international PPA caregiver cohort was surveyed on symptom development under six provisional clinical stages and feedback was analyzed using a mixed-methods sequential explanatory design., Results: Both PPA syndromes were characterized by initial communication dysfunction and non-verbal behavioral changes, with increasing syndromic convergence and functional dependency at later stages. Milestone symptoms were distilled to create a prototypical progression and severity scale of functional impairment: the PPA Progression Planning Aid ("PPA-Squared")., Discussion: This work introduces a symptom-led staging scheme and functional scale for semantic and non-fluent/agrammatic variants of PPA. Our findings have implications for diagnostic and care pathway guidelines, trial design, and personalized prognosis and treatment for PPA., Highlights: We introduce new symptom-led perspectives on primary progressive aphasia (PPA). The focus is on non-fluent/agrammatic (nfvPPA) and semantic (svPPA) variants. Foregrounding of early and non-verbal features of PPA and clinical trajectories is featured. We introduce a symptom-led staging scheme for PPA. We propose a prototype for a functional impairment scale, the PPA Progression Planning Aid., (© 2023 The Authors. Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)
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- 2024
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23. Pupil responses to colorfulness are selectively reduced in healthy older adults.
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van Leeuwen JEP, McDougall A, Mylonas D, Suárez-González A, Crutch SJ, and Warren JD
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- Humans, Aged, Color, Pupil physiology, Color Perception physiology
- Abstract
The alignment between visual pathway signaling and pupil dynamics offers a promising non-invasive method to further illuminate the mechanisms of human color perception. However, only limited research has been done in this area and the effects of healthy aging on pupil responses to the different color components have not been studied yet. Here we aim to address this by modelling the effects of color lightness and chroma (colorfulness) on pupil responses in young and older adults, in a closely controlled passive viewing experiment with 26 broad-spectrum digital color fields. We show that pupil responses to color lightness and chroma are independent from each other in both young and older adults. Pupil responses to color lightness levels are unaffected by healthy aging, when correcting for smaller baseline pupil sizes in older adults. Older adults exhibit weaker pupil responses to chroma increases, predominantly along the Green-Magenta axis, while relatively sparing the Blue-Yellow axis. Our findings complement behavioral studies in providing physiological evidence that colors fade with age, with implications for color-based applications and interventions both in healthy aging and later-life neurodegenerative disorders., (© 2023. The Author(s).)
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- 2023
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24. A mixed methods evaluation of a program exploring predeath grief and loss for carers of people with rarer dementias - CORRIGENDUM.
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Stevens-Neck R, Walton J, Alterkawi S, Brotherhood EV, Camic PM, Crutch SJ, Gerritzen EV, Harding E, McKee-Jackson R, Rossi-Harries S, Street RE, van der Byl Williams M, Waddington C, Wood O, and Moore KJ
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- Humans, Adaptation, Psychological, Grief, Caregivers, Dementia
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- 2023
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25. Situating support for people living with rarer forms of dementia.
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Sullivan MP, Camic PM, Harding E, Stott J, Windle G, Brotherhood EV, Grillo A, and Crutch SJ
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- Humans, England, Social Support, Surveys and Questionnaires, Wales, Dementia diagnosis, Dementia epidemiology, Dementia therapy
- Abstract
Background: Awareness of a multitude of diseases that can cause neurodegenerative decline and their unique symptom profiles in the dementia care and support sectors remains limited. Obtaining an accurate diagnosis and post-diagnostic care and support is a challenge for many people and their families. As part of a larger study examining multi-component forms of support for people living with rarer dementias, the aim of this present study was to examine how rare dementia was situated within the complex social groupings, their organization and embedded discursive constructions that broadly form dementia care and support delivery., Methods: Adopting a situational analysis approach, we undertook an examination of public documents and organizational websites within the support sector for people living with dementia in Canada, England, and Wales. We also surveyed professionals to further explore the situation at the point of care and support delivery. Consistent with our approach, data collection and analysis occurred concurrently including the development of a series of analytic maps., Results: Recognizing the complexities within the situation, our findings provided new insights on the situated structures for support action and the discursive representations that illuminate both the limitations of the current support landscape and possibilities for a more flexible and tailored rare dementia support. Alongside, the predominant universal versus tailored support positionings within our data reinforced the complexity from which a promising new social space for people living with rarer dementias is being cultivated., Conclusions: The social worlds engaged in supportive action with people living with rare dementia are less visible within the shadow of a universally constructed dementia support milieu and appear to be negotiated within this powerful arena. However, their evolving organization and discursive constructions point to an emerging new social space for people living with rarer conditions., (© 2023. BioMed Central Ltd., part of Springer Nature.)
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- 2023
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26. Thinking eyes: visual thinking strategies and the social brain.
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van Leeuwen JEP, Crutch SJ, and Warren JD
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The foundation of art processes in the social brain can guide the scientific study of how human beings perceive and interact with their environment. Here, we applied the theoretical frameworks of the social and artistic brain connectomes to an eye-tracking paradigm with the aim to elucidate how different viewing conditions and social cues influence gaze patterns and personal resonance with artworks and complex imagery in healthy adults. We compared two viewing conditions that encourage personal or social perspective taking-modeled on the well-known Visual Thinking Strategies (VTS) method-to a viewing condition during which only contextual information about the image was provided. Our findings showed that the viewing conditions that used VTS techniques directed the gaze more toward highly salient social cues (Animate elements) in artworks and complex imagery, compared to when only contextual information was provided. We furthermore found that audio cues also directed visual attention, whereby listening to a personal reflection by another person (VTS) had a stronger effect than contextual information. However, we found no effect of viewing condition on the personal resonance with the artworks and complex images when taking the random effects of the image selection into account. Our study provides a neurobiological grounding of the VTS method in the social brain, revealing that this pedagogical method of engaging viewers with artworks measurably shapes people's visual exploration patterns. This is not only of relevance to (art) education but also has implications for art-based diagnostic and therapeutic applications., Competing Interests: JL is the founder of The Thinking Eye, a social enterprise which translates novel insights from research into relationships between visual art processes and the social brain into services that aim to support psychological wellbeing and optimal cognitive functioning. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2023 van Leeuwen, Crutch and Warren.)
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- 2023
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27. 'The oxygen of shared experience': exploring social support processes within peer support groups for carers of people with non-memory-led and inherited dementias.
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Harding E, Rossi-Harries S, Alterkawi S, Waddington C, Grillo A, Wood O, Brotherhood EV, Windle G, Sullivan MP, Camic PM, Stott J, and Crutch SJ
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- Humans, Oxygen, Social Support, Self-Help Groups, Caregivers psychology, Dementia psychology
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Objectives: To explore support processes and behaviours taking place during online peer support groups for family carers of people living with rare, non-memory-led and inherited dementias (PLWRD)., Methods: Twenty-five family carers of PLWRD participated in a series of ongoing online peer support groups on the theme of 'Independence and Identity'. Transcripts from 16 sessions were analysed using qualitative directed content analysis with a coding framework informed by Cutrona & Suhr's (2004) Social Support Behaviour Code (SSBC)., Results: Most of the social support behaviours outlined in the SSBC were identified within the sessions, along with two novel social support categories - 'Experiential Support' and 'Community Support' - and novel support behaviours including 'Advocacy and Collective Action' and 'Uses Humour'. The SSBC code 'Relationship' appeared to be of central importance., Conclusions: This study sheds light on the unique challenges of the caring context for those affected by non-memory-led and inherited dementias and the significant contributions carers can offer to, and receive from, peers in similar situations. It highlights the importance of services which recognise the value of the informational and emotional expertise of carers of PLWRD and encourages the continued development and delivery of tailored support for these populations.
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- 2023
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28. Neuroimaging, clinical and life course correlates of normal-appearing white matter integrity in 70-year-olds.
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James SN, Manning EN, Storey M, Nicholas JM, Coath W, Keuss SE, Cash DM, Lane CA, Parker T, Keshavan A, Buchanan SM, Wagen A, Harris M, Malone I, Lu K, Needham LP, Street R, Thomas D, Dickson J, Murray-Smith H, Wong A, Freiberger T, Crutch SJ, Fox NC, Richards M, Barkhof F, Sudre CH, Barnes J, and Schott JM
- Abstract
We investigate associations between normal-appearing white matter microstructural integrity in cognitively normal ∼70-year-olds and concurrently measured brain health and cognition, demographics, genetics and life course cardiovascular health. Participants born in the same week in March 1946 (British 1946 birth cohort) underwent PET-MRI around age 70. Mean standardized normal-appearing white matter integrity metrics (fractional anisotropy, mean diffusivity, neurite density index and orientation dispersion index) were derived from diffusion MRI. Linear regression was used to test associations between normal-appearing white matter metrics and (i) concurrent measures, including whole brain volume, white matter hyperintensity volume, PET amyloid and cognition; (ii) the influence of demographic and genetic predictors, including sex, childhood cognition, education, socio-economic position and genetic risk for Alzheimer's disease ( APOE-ɛ4 ); (iii) systolic and diastolic blood pressure and cardiovascular health (Framingham Heart Study Cardiovascular Risk Score) across adulthood. Sex interactions were tested. Statistical significance included false discovery rate correction (5%). Three hundred and sixty-two participants met inclusion criteria (mean age 70, 49% female). Higher white matter hyperintensity volume was associated with lower fractional anisotropy [ b = -0.09 (95% confidence interval: -0.11, -0.06), P < 0.01], neurite density index [ b = -0.17 (-0.22, -0.12), P < 0.01] and higher mean diffusivity [ b = 0.14 (-0.10, -0.17), P < 0.01]; amyloid (in men) was associated with lower fractional anisotropy [ b = -0.04 (-0.08, -0.01), P = 0.03)] and higher mean diffusivity [ b = 0.06 (0.01, 0.11), P = 0.02]. Framingham Heart Study Cardiovascular Risk Score in later-life (age 69) was associated with normal-appearing white matter {lower fractional anisotropy [ b = -0.06 (-0.09, -0.02) P < 0.01], neurite density index [ b = -0.10 (-0.17, -0.03), P < 0.01] and higher mean diffusivity [ b = 0.09 (0.04, 0.14), P < 0.01]}. Significant sex interactions ( P < 0.05) emerged for midlife cardiovascular health (age 53) and normal-appearing white matter at 70: marginal effect plots demonstrated, in women only, normal-appearing white matter was associated with higher midlife Framingham Heart Study Cardiovascular Risk Score (lower fractional anisotropy and neurite density index), midlife systolic (lower fractional anisotropy, neurite density index and higher mean diffusivity) and diastolic (lower fractional anisotropy and neurite density index) blood pressure and greater blood pressure change between 43 and 53 years (lower fractional anisotropy and neurite density index), independently of white matter hyperintensity volume. In summary, poorer normal-appearing white matter microstructural integrity in ∼70-year-olds was associated with measures of cerebral small vessel disease, amyloid (in males) and later-life cardiovascular health, demonstrating how normal-appearing white matter can provide additional information to overt white matter disease. Our findings further show that greater 'midlife' cardiovascular risk and higher blood pressure were associated with poorer normal-appearing white matter microstructural integrity in females only, suggesting that women's brains may be more susceptible to the effects of midlife blood pressure and cardiovascular health., Competing Interests: N.C.F. has consulted for Biogen, Ionis, Eli Lilly and Roche and has served on a Data Safety Monitoring Committee for Biogen. J.M.S. has received research funding from Avid Radiopharmaceuticals (a wholly owned subsidiary of Eli Lilly), has consulted for Roche Pharmaceuticals, Biogen, and Eli Lilly, given educational lectures sponsored by GE, Eli Lilly and Biogen, and serves on a Data Safety Monitoring Committee for Axon Neuroscience SE. C.A.L. is now a full-time employee of Roche Products Ltd and a shareholder in Hoffmann La Roche. F.B. is a steering committee or iDMC member for Biogen, Merck, Roche, EISAI and Prothena, is a consultant for Roche, Biogen, Merck, IXICO, Jansen and Combinostics, has research agreements with Merck, Biogen, GE Healthcare and Roche, and is a co-founder and shareholder of Queen Square Analytics LTD. All other authors have no conflicts of interest to declare., (© The Author(s) 2023. Published by Oxford University Press on behalf of the Guarantors of Brain.)
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- 2023
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29. Video Conferencing Peer Support and Rarer Forms of Dementia: An Exploration of Family Carers' Positive Experiences.
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Rapley JM, Camic PM, Brotherhood E, Crutch SJ, and Harding E
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- Humans, Social Support, Self-Help Groups, Counseling, Qualitative Research, Family psychology, Caregivers psychology, Dementia psychology
- Abstract
Little is known regarding the nuanced experiences of family carers for people living with rare dementias (PLWRD), with no known literature exploring their positive experiences of caring discussed within peer support group settings. This article explores family carers of PLWRD's positive experiences reported in video conferencing peer support groups. Six peer support group sessions involving a total of nine participants were qualitatively analysed using thematic analysis, guided by the conceptual framework of positive aspects of caring (CFPAC) (Carbonneau et al., 2010). Six themes were identified: (1) Protecting, maintaining, enjoying and finding strength in their relationship with the PLWRD; (2) Using tools and resources in response to challenges; (3) Positive impact of interactions and others' responses to the dementia; (4) Overcoming barriers to taking a break while maintaining their wellbeing, (5) Maintaining positive outlooks and showing psychological resilience in adversity; and (6) Attributing meaning to the caring role. This article highlights family carers of PLWRD's positive psychological, physical and social resources, balanced against the challenges of caring and maintaining their wellbeing, and identifies ways of promoting family carers' positive caring experiences and resources within healthcare and supportive settings.
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- 2023
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30. Symptom-led staging for primary progressive aphasia.
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Hardy CJ, Taylor-Rubin C, Taylor B, Harding E, Gonzalez AS, Jiang J, Thompson L, Kingma R, Chokesuwattanaskul A, Walker F, Barker S, Brotherhood E, Waddington C, Wood O, Zimmermann N, Kupeli N, Yong KX, Camic PM, Stott J, Marshall CR, Oxtoby NP, Rohrer JD, Volkmer A, Crutch SJ, and Warren JD
- Abstract
The primary progressive aphasias (PPA) present complex and diverse challenges of diagnosis, management and prognosis. A clinically-informed, syndromic staging system for PPA would take a substantial step toward meeting these challenges. This study addressed this need using detailed, multi-domain mixed-methods symptom surveys of people with lived experience in a large international PPA cohort. We administered structured online surveys to caregivers of patients with a canonical PPA syndromic variant (nonfluent/agrammatic (nvPPA), semantic (svPPA) or logopenic (lvPPA)). In an 'exploratory' survey, a putative list and ordering of verbal communication and nonverbal functioning (nonverbal thinking, conduct and wellbeing, physical) symptoms was administered to 118 caregiver members of the UK national PPA Support Group. Based on feedback, we expanded the symptom list and created six provisional clinical stages for each PPA subtype. In a 'consolidation' survey, these stages were presented to 110 caregiver members of UK and Australian PPA Support Groups, and refined based on quantitative and qualitative feedback. Symptoms were retained if rated as 'present' by a majority (at least 50%) of respondents representing that PPA syndrome, and assigned to a consolidated stage based on majority consensus; the confidence of assignment was estimated for each symptom as the proportion of respondents in agreement with the final staging for that symptom. Qualitative responses were analysed using framework analysis. For each PPA syndrome, six stages ranging from 1 ('Very mild') to 6 ('Profound') were identified; earliest stages were distinguished by syndromic hallmark symptoms of communication dysfunction, with increasing trans-syndromic convergence and dependency for basic activities of daily living at later stages. Spelling errors, hearing changes and nonverbal behavioural features were reported at early stages in all syndromes. As the illness evolved, swallowing and mobility problems were reported earlier in nfvPPA than other syndromes, while difficulty recognising familiar people and household items characterised svPPA and visuospatial symptoms were more prominent in lvPPA. Overall confidence of symptom staging was higher for svPPA than other syndromes. Across syndromes, functional milestones were identified as key deficits that predict the sequence of major daily life impacts and associated management needs. Qualitatively, we identified five major themes encompassing 15 subthemes capturing respondents' experiences of PPA and suggestions for staging implementation. This work introduces a prototypical, symptom-led staging scheme for canonical PPA syndromes: the PPA Progression Planning Aid (PPA
2 ). Our findings have implications for diagnostic and care pathway guidelines, trial design and personalised prognosis and treatment for people living with these diseases.- Published
- 2023
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31. Effects of the visual environment on object localization in posterior cortical atrophy and typical Alzheimer's disease.
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Ocal D, McCarthy ID, Poole T, Primativo S, Suzuki T, Tyler N, Frost C, Crutch SJ, and Yong KXX
- Abstract
Introduction: Visual processing deficits in Alzheimer's disease are associated with diminished functional independence. While environmental adaptations have been proposed to promote independence, recent guidance gives limited consideration to such deficits and offers conflicting recommendations for people with dementia. We evaluated the effects of clutter and color contrasts on performances of everyday actions in posterior cortical atrophy and memory-led typical Alzheimer's disease., Methods: 15 patients with posterior cortical atrophy, 11 with typical Alzheimer's disease and 16 healthy controls were asked to pick up a visible target object as part of two pilot repeated-measures investigations from a standing or seated position. Participants picked up the target within a controlled real-world setting under varying environmental conditions: with/without clutter, with/without color contrast cue and far/near target position. Task completion time was recorded using a target-mounted inertial measurement unit., Results: Across both experiments, difficulties locating a target object were apparent through patient groups taking an estimated 50-90% longer to pick up targets relative to controls. There was no evidence of effects of color contrast when locating objects from standing/seated positions and of any other environmental conditions from a standing position on completion time in any participant group. Locating objects, surrounded by five distractors rather than none, from a seated position was associated with a disproportionately greater effect on completion times in the posterior cortical atrophy group relative to the control or typical Alzheimer's disease groups. Smaller, not statistically significant but directionally consistent, ratios of relative effects were seen for two distractors compared with none., Discussion: Findings are consistent with inefficient object localization in posterior cortical atrophy relative to typical Alzheimer's disease and control groups, particularly with targets presented within reaching distance among visual clutter. Findings may carry implications for considering the adverse effects of visual clutter in developing and implementing environmental modifications to promote functional independence in Alzheimer's disease., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2023 Ocal, McCarthy, Poole, Primativo, Suzuki, Tyler, Frost, Crutch and Yong.)
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- 2023
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32. Adulthood cognitive trajectories over 26 years and brain health at 70 years of age: findings from the 1946 British Birth Cohort.
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James SN, Nicholas JM, Lu K, Keshavan A, Lane CA, Parker T, Buchanan SM, Keuss SE, Murray-Smith H, Wong A, Cash DM, Malone IB, Barnes J, Sudre CH, Coath W, Modat M, Ourselin S, Crutch SJ, Kuh D, Fox NC, Schott JM, and Richards M
- Subjects
- Humans, Female, Adult, Aged, Male, Brain diagnostic imaging, Brain metabolism, Cognition, Amyloid beta-Peptides metabolism, Birth Cohort, Cognitive Dysfunction psychology
- Abstract
Few studies can address how adulthood cognitive trajectories relate to brain health in 70-year-olds. Participants (n = 468, 49% female) from the 1946 British birth cohort underwent 18F-Florbetapir PET/MRI. Cognitive function was measured in childhood (age 8 years) and across adulthood (ages 43, 53, 60-64 and 69 years) and was examined in relation to brain health markers of β-amyloid (Aβ) status, whole brain and hippocampal volume, and white matter hyperintensity volume (WMHV). Taking into account key contributors of adult cognitive decline including childhood cognition, those with greater Aβ and WMHV at age 70 years had greater decline in word-list learning memory in the preceding 26 years, particularly after age 60. In contrast, those with smaller whole brain and hippocampal volume at age 70 years had greater decline in processing search speed, subtly manifest from age 50 years. Subtle changes in memory and processing speed spanning 26 years of adulthood were associated with markers of brain health at 70 years of age, consistent with detectable prodromal cognitive effects in early older age., Competing Interests: Disclosure statement Sarah-Naomi James – Reports no disclosures, Jennifer M. Nicholas – Reports no disclosures, Kirsty Lu – Reports no disclosures, Thomas D. Parker - Supported by a Wellcome Trust Clinical Research Fellowship (200109/Z/15/Z)., Christopher A. Lane – Reports no disclosures, Ashvini Keshavan – Supported by a Wolfson Foundation Clinical Research Fellowship., Sarah E. Keuss – Reports no disclosures, Sarah M. Buchanan – Reports no disclosures, Heidi Murray-Smith – Reports no disclosures, David M. Cash – Supported by the UK Dementia Research Institute which receives its funding from DRI Ltd, funded by the UK Medical Research Council, Alzheimer’s Society and Alzheimer’s Research UK (ARUK‐PG2017‐1946), the UCL/UCLH NIHR Biomedical Research Centre, and the UKRI Innovation Scholars: Data Science Training in Health and Bioscience (MR/V03863X/1)) - Carole H. Sudre - Supported by an MRC platform grant (EP/M020533/1) and an Alzheimer's Society Junior Fellowship (AS-JF-17-011)., Josephine Barnes – Supported by a Senior ARUK fellowship., Ian B. Malone – Reports no disclosures, Will Coath – Reports no disclosures, Marc Modat – Supported by the Leonard Wolfson Experimental Neurology Centre and an Alzheimer's Society Project Grant (AS-PG-15-025)., Andrew Wong – Reports no disclosures, Diana Kuh – Reports no disclosures, Sebastien Ourselin – Reports no disclosures, Sebastian J. Crutch - Supported by an Alzheimer's Research UK Senior Research Fellowship (ARUK-SRF2013-8)., Nick C. Fox - supported by the UCL/UCLH NIHR Biomedical Research Centre, Leonard Wolfson Experimental Neurology Centre, and the UK Dementia Research Institute at UCL., Marcus Richards – Reports no disclosures, Jonathan M. Schott - supported by the UCL/UCLH NIHR Biomedical Research Centre, UCL Hospitals Biomedical Research Centre, and Leonard Wolfson Experimental Neurology Centre. Acknowledges the EPSRC (EP/J020990/1) and European Union's Horizon 2020 research and innovation programme (Grant 666992)., (Copyright © 2022 The Authors. Published by Elsevier Inc. All rights reserved.)
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- 2023
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33. Remote versus face-to-face neuropsychological testing for dementia research: a comparative study in people with Alzheimer's disease, frontotemporal dementia and healthy older individuals.
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Requena-Komuro MC, Jiang J, Dobson L, Benhamou E, Russell L, Bond RL, Brotherhood EV, Greaves C, Barker S, Rohrer JD, Crutch SJ, Warren JD, and Hardy CJ
- Subjects
- Humans, Bayes Theorem, Cross-Sectional Studies, Retrospective Studies, Pandemics, Prospective Studies, Neuropsychological Tests, Frontotemporal Dementia diagnosis, Alzheimer Disease diagnosis, Alzheimer Disease psychology, COVID-19 diagnosis, Aphasia
- Abstract
Objectives: We explored whether adapting neuropsychological tests for online administration during the COVID-19 pandemic was feasible for dementia research., Design: We used a longitudinal design for healthy controls, who completed face-to-face assessments 3-4 years before remote assessments. For patients, we used a cross-sectional design, contrasting a prospective remote cohort with a retrospective face-to-face cohort matched for age/education/severity., Setting: Remote assessments were conducted using video-conferencing/online testing platforms, with participants using a personal computer/tablet at home. Face-to-face assessments were conducted in testing rooms at our research centre., Participants: The remote cohort comprised 25 patients (n=8 Alzheimer's disease (AD); n=3 behavioural variant frontotemporal dementia (bvFTD); n=4 semantic dementia (SD); n=5 progressive non-fluent aphasia (PNFA); n=5 logopenic aphasia (LPA)). The face-to-face patient cohort comprised 64 patients (n=25 AD; n=12 bvFTD; n=9 SD; n=12 PNFA; n=6 LPA). Ten controls who previously participated in face-to-face research also took part remotely., Outcome Measures: The outcome measures comprised the strength of evidence under a Bayesian framework for differences in performances between testing environments on general neuropsychological and neurolinguistic measures., Results: There was substantial evidence suggesting no difference across environments in both the healthy control and combined patient cohorts (including measures of working memory, single-word comprehension, arithmetic and naming; Bayes Factors (BF)
01 >3), in the healthy control group alone (including measures of letter/category fluency, semantic knowledge and bisyllabic word repetition; all BF01 >3), and in the combined patient cohort alone (including measures of working memory, episodic memory, short-term verbal memory, visual perception, non-word reading, sentence comprehension and bisyllabic/trisyllabic word repetition; all BF01 >3). In the control cohort alone, there was substantial evidence in support of a difference across environments for tests of visual perception (BF01 =0.0404) and monosyllabic word repetition (BF01 =0.0487)., Conclusions: Our findings suggest that remote delivery of neuropsychological tests for dementia research is feasible., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY. Published by BMJ.)- Published
- 2022
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34. Peer support for people living with rare or young onset dementia: An integrative review.
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Sullivan MP, Williams V, Grillo A, McKee-Jackson R, Camic PM, Windle G, Stott J, Brotherhood E, and Crutch SJ
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- Humans, Peer Group, Hospitals, Dementia
- Abstract
Objectives: The aim of this integrative review was to identify and synthesize the literature on peer support interventions for people living with or caring for someone with a rare or young onset dementia., Design: A literature search of articles was performed using the Nipissing University Primo search system, a central index that enables simultaneous searches across databases which included MEDLINE (PubMed), Web of Science, PsycINFO, CINAHL, Sociological Abstracts, Cochrane Library., Results: The eleven papers that met the inclusion criteria spanned eighteen years and from five countries. Studies reported on peer support programs that were either hospital-based (n = 6) or community-based (n = 4), and were predominantly led by disciplines in the health sciences. Only one study did not involve delivering services. There was a range of methodological quality within the studies included in the review. Further analysis and synthesis led to the identification of three overarching peer support themes. These included: (1) peers as necessarily part of social support interventions; (2) a theoretical portmanteau; and (3) dementia spaces and relationality., Conclusion: Consistent with a much larger body of work examining peer involvement in social interventions, this review reinforced the valuable contribution of peers. A full understanding of the mechanisms of change was not achieved. Notwithstanding, the issue of studies neglecting to sufficiently conceptualize and describe interventions is an important one - drawing attention to the need to continue to explore varied delivery, including co-produced models, and more effective evaluation strategies to inform the dementia care sector.
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- 2022
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35. The Development of Videoconference-Based Support for People Living With Rare Dementias and Their Carers: Protocol for a 3-Phase Support Group Evaluation.
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Waddington C, Harding E, Brotherhood EV, Davies Abbott I, Barker S, Camic PM, Ezeofor V, Gardner H, Grillo A, Hardy C, Hoare Z, McKee-Jackson R, Moore K, O'Hara T, Roberts J, Rossi-Harries S, Suarez-Gonzalez A, Sullivan MP, Edwards RT, Van Der Byl Williams M, Walton J, Willoughby A, Windle G, Winrow E, Wood O, Zimmermann N, Crutch SJ, and Stott J
- Abstract
Background: People living with rarer dementias face considerable difficulty accessing tailored information, advice, and peer and professional support. Web-based meeting platforms offer a critical opportunity to connect with others through shared lived experiences, even if they are geographically dispersed, particularly during the COVID-19 pandemic., Objective: We aim to develop facilitated videoconferencing support groups (VSGs) tailored to people living with or caring for someone with familial or sporadic frontotemporal dementia or young-onset Alzheimer disease, primary progressive aphasia, posterior cortical atrophy, or Lewy body dementia. This paper describes the development, coproduction, field testing, and evaluation plan for these groups., Methods: We describe a 3-phase approach to development. First, information and knowledge were gathered as part of a coproduction process with members of the Rare Dementia Support service. This information, together with literature searches and consultation with experts by experience, clinicians, and academics, shaped the design of the VSGs and session themes. Second, field testing involved 154 Rare Dementia Support members (people living with dementia and carers) participating in 2 rounds of facilitated sessions across 7 themes (health and social care professionals, advance care planning, independence and identity, grief and loss, empowering your identity, couples, and hope and dementia). Third, a detailed evaluation plan for future rounds of VSGs was developed., Results: The development of the small groups program yielded content and structure for 9 themed VSGs (the 7 piloted themes plus a later stages program and creativity club for implementation in rounds 3 and beyond) to be delivered over 4 to 8 sessions. The evaluation plan incorporated a range of quantitative (attendance, demographics, and geography; pre-post well-being ratings and surveys; psycholinguistic analysis of conversation; facial emotion recognition; facilitator ratings; and economic analysis of program delivery) and qualitative (content and thematic analysis) approaches. Pilot data from round 2 groups on the pre-post 3-word surveys indicated an increase in the emotional valence of words selected after the sessions., Conclusions: The involvement of people with lived experience of a rare dementia was critical to the design, development, and delivery of the small virtual support group program, and evaluation of this program will yield convergent data about the impact of tailored support delivered to geographically dispersed communities. This is the first study to design and plan an evaluation of VSGs specifically for people affected by rare dementias, including both people living with a rare dementia and their carers, and the outcome of the evaluation will be hugely beneficial in shaping specific and targeted support, which is often lacking in this population., International Registered Report Identifier (irrid): DERR1-10.2196/35376., (©Claire Waddington, Emma Harding, Emilie V Brotherhood, Ian Davies Abbott, Suzanne Barker, Paul M Camic, Victory Ezeofor, Hannah Gardner, Adetola Grillo, Chris Hardy, Zoe Hoare, Roberta McKee-Jackson, Kirsten Moore, Trish O’Hara, Jennifer Roberts, Samuel Rossi-Harries, Aida Suarez-Gonzalez, Mary Pat Sullivan, Rhiannon Tudor Edwards, Millie Van Der Byl Williams, Jill Walton, Alicia Willoughby, Gill Windle, Eira Winrow, Olivia Wood, Nikki Zimmermann, Sebastian J Crutch, Joshua Stott. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 20.07.2022.)
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- 2022
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36. Phonemic restoration in Alzheimer's disease and semantic dementia: a preliminary investigation.
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Jiang J, Johnson JCS, Requena-Komuro MC, Benhamou E, Sivasathiaseelan H, Sheppard DL, Volkmer A, Crutch SJ, Hardy CJD, and Warren JD
- Abstract
Phonemic restoration-perceiving speech sounds that are actually missing-is a fundamental perceptual process that 'repairs' interrupted spoken messages during noisy everyday listening. As a dynamic, integrative process, phonemic restoration is potentially affected by neurodegenerative pathologies, but this has not been clarified. Here, we studied this phenomenon in 5 patients with typical Alzheimer's disease and 4 patients with semantic dementia, relative to 22 age-matched healthy controls. Participants heard isolated sounds, spoken real words and pseudowords in which noise bursts either overlaid a consonant or replaced it; a tendency to hear replaced (missing) speech sounds as present signified phonemic restoration. All groups perceived isolated noises normally and showed phonemic restoration of real words, most marked in Alzheimer's patients. For pseudowords, healthy controls showed no phonemic restoration, while Alzheimer's patients showed marked suppression of phonemic restoration and patients with semantic dementia contrastingly showed phonemic restoration comparable to real words. Our findings provide the first evidence that phonemic restoration is preserved or even enhanced in neurodegenerative diseases, with distinct syndromic profiles that may reflect the relative integrity of bottom-up phonological representation and top-down lexical disambiguation mechanisms in different diseases. This work has theoretical implications for predictive coding models of language and neurodegenerative disease and for understanding cognitive 'repair' processes in dementia. Future research should expand on these preliminary observations with larger cohorts., (© The Author(s) 2022. Published by Oxford University Press on behalf of the Guarantors of Brain.)
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- 2022
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37. More Than Meets the Eye: Art Engages the Social Brain.
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van Leeuwen JEP, Boomgaard J, Bzdok D, Crutch SJ, and Warren JD
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Here we present the viewpoint that art essentially engages the social brain, by demonstrating how art processing maps onto the social brain connectome-the most comprehensive diagram of the neural dynamics that regulate human social cognition to date. We start with a brief history of the rise of neuroaesthetics as the scientific study of art perception and appreciation, in relation to developments in contemporary art practice and theory during the same period. Building further on a growing awareness of the importance of social context in art production and appreciation, we then set out how art engages the social brain and outline candidate components of the "artistic brain connectome." We explain how our functional model for art as a social brain phenomenon may operate when engaging with artworks. We call for closer collaborations between the burgeoning field of neuroaesthetics and arts professionals, cultural institutions and diverse audiences in order to fully delineate and contextualize this model. Complementary to the unquestionable value of art for art's sake, we argue that its neural grounding in the social brain raises important practical implications for mental health, and the care of people living with dementia and other neurological conditions., Competing Interests: JL was the founder of the Thinking Eye, a social enterprise which translates novel insights from research into relationships between visual art processes and the social brain into services that aim to support psychological wellbeing and optimal cognitive functioning. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 van Leeuwen, Boomgaard, Bzdok, Crutch and Warren.)
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- 2022
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38. Singing and music making: physiological responses across early to later stages of dementia.
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Walker N, Crutch SJ, West J, Jones FW, Brotherhood EV, Harding E, and Camic PM
- Abstract
Background : Music based interventions have been found to improve wellbeing for people with dementia. More recently there has been interest in physiological measures to provide additional information about how music and singing impact this population. Methods: This multiple-case study design explored physiological responses (heart rate-HR, electrodermal activity-EDA, movement, and skin temperature-ST) of nine people with mild-to-moderate using simulation modelling analysis. Results : In study 1, the singing group showed an increase in EDA (p < 0.01 for 8/9 participants) and HR (p < 0.01 for 5/9 participants) as the session began. HR (p < 0.0001 for 5/9 participants) and ST (p < 0.0001 for 6/9 participants) increased during faster tempos. EDA (p < 0.01 all), movement (p < 0.01 for 8/9 participants) and engagement were higher during singing compared to a baseline control. In study 2 EDA (p < 0.0001 for 14/18 data points [3 music conditions across 6 participants]) and ST (p < 0.001 for 10/18 data points) increased and in contrast to the responses during singing, HR decreased as the sessions began (p < 0.002 for 9/18 data points). EDA was higher during slower music (p < 0.0001 for 13/18 data points), however this was less consistent in more interactive sessions than the control. There were no consistent changes in HR and movement responses during different music genre. Conclusions : Physiological measures provide valuable information about the experiences of people with dementia participating in musical activities, particularly for those with verbal communication difficulties. Future research should consider using physiological measures. video-analysis and observational measures to explore further how engagement in specific activities, wellbeing and physiology interact., Competing Interests: No competing interests were disclosed., (Copyright: © 2022 Walker N et al.)
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- 2022
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39. Altered visual and haptic verticality perception in posterior cortical atrophy and Alzheimer's disease.
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Day BL, Ocal D, Peters A, Bancroft MJ, Cash D, Kaski D, Crutch SJ, and Yong KXX
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- Atrophy, Haptic Technology, Humans, Posture, Space Perception, Visual Perception, Alzheimer Disease
- Abstract
There is increasing theoretical and empirical support for the brain combining multisensory information to determine the direction of gravity and hence uprightness. A fundamental part of the process is the spatial transformation of sensory signals between reference frames: eye-centred, head-centred, body-centred, etc. The question 'Am I the right way up?' posed by a patient with posterior cortical atrophy (PCA) suggests disturbances in upright perception, subsequently investigated in PCA and typical Alzheimer's disease (tAD) based on what looks or feels upright. Participants repeatedly aligned to vertical a rod presented either visually (visual-vertical) or haptically (haptic-vertical). Visual-vertical involved orienting a projected rod presented without or with a visual orientation cue (circle, tilted square (±18°)). Haptic-vertical involved orientating a grasped rod with eyes closed using a combination of side (left, right) and hand (unimanual, bimanual) configurations. Intraindividual uncertainty and bias defined verticality perception. Uncertainty was consistently greater in both patient groups than in control groups, and greater in PCA than tAD. Bias in the frontal plane was strongly directionally affected by visual cue tilt (visual-vertical) and grip side (haptic-vertical). A model was developed that assumed verticality information from multiple sources is combined in a statistically optimal way to produce observed uncertainties and biases. Model results suggest the mechanism that spatially transforms graviceptive information between body parts is disturbed in both patient groups. Despite visual dysfunction being typically considered the primary feature of PCA, disturbances were greater in PCA than tAD particularly for haptic-vertical, and are considered in light of posterior parietal vulnerability. KEY POINTS: The perception of upright requires accurate and precise estimates of orientation based on multiple noisy sensory signals. The question 'Am I the right way up?' posed by a patient with posterior cortical atrophy (PCA; purported 'visual variant Alzheimer's') suggests disturbances in the perception of upright. What looks or feels upright in PCA and typical Alzheimer's disease (tAD) was investigated by asking participants to repeatedly align to vertical a rod presented visually (visual-vertical) or haptically (haptic-vertical). PCA and tAD groups exhibited not only greater perceptual uncertainty than controls, but also exaggerated bias induced by tilted visual orientation cues (visual-vertical) and grip side (haptic-vertical). When modelled, these abnormalities, which were particularly evident in PCA haptic-vertical performance, were compatible with disruption of a mechanism that spatially transforms verticality information between body parts. The findings suggest an important role of posterior parietal cortex in verticality perception, and have implications for understanding spatial disorientation in dementia., (© 2021 The Authors. The Journal of Physiology published by John Wiley & Sons Ltd on behalf of The Physiological Society.)
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- 2022
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40. Injections of hope: supporting participants in clinical trials.
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Harding E, Robinson P, Wilson J, Crutch SJ, and Mummery CJ
- Abstract
Competing Interests: Competing interests: We have read and understood BMJ policy on declaration of interests and have the following interests to declare: CJM is on the Therapeutics Evaluation Committee for the DIAN-TU trial platform led by Washington University; she is a member of the Biogen steering committee for the aducanumab programme; she has been on advisory committees for Roche, IONIS, and WAVE.
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- 2021
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41. Visual short-term memory impairments in presymptomatic familial Alzheimer's disease: A longitudinal observational study.
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Pavisic IM, Nicholas JM, Pertzov Y, O'Connor A, Liang Y, Collins JD, Lu K, Weston PSJ, Ryan NS, Husain M, Fox NC, and Crutch SJ
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- Cross-Sectional Studies, Humans, Longitudinal Studies, Memory, Short-Term, Neuropsychological Tests, Alzheimer Disease complications, Alzheimer Disease genetics
- Abstract
Visual short-term memory (VSTM) deficits including VSTM binding have been associated with Alzheimer's disease (AD) from preclinical to dementia stages, cross-sectionally. Yet, longitudinal investigations are lacking. The objective of this study was to evaluate VSTM function longitudinally and in relation to expected symptom onset in a cohort of familial Alzheimer's disease. Ninety-nine individuals (23 presymptomatic; 9 symptomatic and 67 controls) were included in an extension cross-sectional study and a sub-sample of 48 (23 presymptomatic carriers, 6 symptomatic and 19 controls), attending two to five visits with a median interval of 1.3 years, included in the longitudinal study. Participants completed the "What was where?" relational binding task (which measures memory for object identification, localisation and object-location binding under different conditions of memory load and delay), neuropsychology assessments and genetic testing. Compared to controls, presymptomatic carriers within 8.5 years of estimated symptom onset showed a faster rate of decline in localisation performance in long-delay conditions (4s) and in traditional neuropsychology measures of verbal episodic memory. This study represents the first longitudinal VSTM investigation and shows that changes in memory resolution may be sensitive to tracking cognitive decline in preclinical AD at least as early as changes in the more traditional verbal episodic memory tasks., (Copyright © 2021 The Author(s). Published by Elsevier Ltd.. All rights reserved.)
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- 2021
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42. Psychosocial outcomes of dyadic arts interventions for people with a dementia and their informal caregivers: A systematic review.
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Bourne P, Camic PM, and Crutch SJ
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- Humans, Quality of Life, Caregivers, Dementia therapy
- Abstract
Dementia is a neurodegenerative syndrome that can lead to profound psychological and social challenges for people with dementia and their informal caregivers. Previous research has found positive effects of arts-based interventions for people with dementia and caregivers that have been dyadic in nature and the present article sought to review these findings. A systematic literature review was conducted to investigate psychosocial outcomes of dyadic arts interventions. PsychINFO, Medline, Web of Science and ASSIA databases (from journal inception to March 2020) were searched as well as Google Scholar and reference lists of relevant studies were searched. Interventions were delivered to people with dementia and their caregivers in community-based settings across five countries. Thirteen peer-reviewed journal articles met the criteria for inclusion in this review, six focusing on performing arts and seven on visual arts. The findings suggested that choral singing and visual arts interventions may have positive effects on psychosocial outcomes for both people with dementia and their informal caregivers. Improved well-being, quality of life, mood, enhanced identity and decreased social isolation were found in some studies. Importantly, across all studies, participants reported enjoying arts activities. This is the first review to systematically assess dyadic arts activities in a dementia context. These activities offer enjoyable and engaging experiences for many person with dementia and caregivers and were generally found to have positive results but mostly small sample size, lack of control groups and different outcome measures made comparisons challenging. Future research recommendations include further theoretical development, identifying key intervention components, and specifying relevant and measurable theoretically informed outcomes within dyadic interventions for this population., (© 2020 John Wiley & Sons Ltd.)
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- 2021
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43. Subjective cognitive complaints at age 70: associations with amyloid and mental health.
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Pavisic IM, Lu K, Keuss SE, James SN, Lane CA, Parker TD, Keshavan A, Buchanan SM, Murray-Smith H, Cash DM, Coath W, Wong A, Fox NC, Crutch SJ, Richards M, and Schott JM
- Subjects
- Aged, Anxiety diagnostic imaging, Anxiety metabolism, Brain diagnostic imaging, Brain metabolism, Cross-Sectional Studies, Depression diagnostic imaging, Depression metabolism, Female, Humans, Magnetic Resonance Imaging, Male, Neuropsychological Tests, Positron-Emission Tomography, Amyloid beta-Peptides metabolism, Anxiety psychology, Cognition physiology, Depression psychology, Mental Health
- Abstract
Objective: To investigate subjective cognitive decline (SCD) in relation to β-amyloid pathology and to test for associations with anxiety, depression, objective cognition and family history of dementia in the Insight 46 study., Methods: Cognitively unimpaired ~70-year-old participants, all born in the same week in 1946 (n=460, 49% female, 18% amyloid-positive), underwent assessments including the SCD-Questionnaire (MyCog). MyCog scores were evaluated with respect to
18 F-Florbetapir-PET amyloid status (positive/negative). Associations with anxiety, depression, objective cognition (measured by the Preclinical Alzheimer Cognitive Composite, PACC) and family history of dementia were also investigated. The informant's perspective on SCD was evaluated in relation to MyCog score., Results: Anxiety (mean (SD) trait anxiety score: 4.4 (3.9)) was associated with higher MyCog scores, especially in women. MyCog scores were higher in amyloid-positive compared with amyloid-negative individuals (adjusted means (95% CIs): 5.3 (4.4 to 6.1) vs 4.3 (3.9 to 4.7), p=0.044), after accounting for differences in anxiety. PACC (mean (SD) -0.05 (0.68)) and family history of dementia (prevalence: 23.9%) were not independently associated with MyCog scores. The informant's perception of SCD was generally in accordance with that of the participant., Conclusions: This cross-sectional study demonstrates that symptoms of SCD are associated with both β-amyloid pathology, and more consistently, trait anxiety in a population-based cohort of older adults, at an age when those who are destined to develop dementia are still likely to be some years away from symptoms. This highlights the necessity of considering anxiety symptoms when assessing Alzheimer's disease pathology and SCD., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.)- Published
- 2021
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44. Dissociable effects of APOE -ε4 and β-amyloid pathology on visual working memory.
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Lu K, Nicholas JM, Pertzov Y, Grogan J, Husain M, Pavisic IM, James SN, Parker TD, Lane CA, Keshavan A, Keuss SE, Buchanan SM, Murray-Smith H, Cash DM, Malone IB, Sudre CH, Coath W, Wong A, Henley SMD, Fox NC, Richards M, Schott JM, and Crutch SJ
- Subjects
- Humans, Amyloid beta-Peptides genetics, Memory, Short-Term, Apolipoprotein E4 genetics, Genotype, Alzheimer Disease diagnostic imaging
- Abstract
Although APOE -ε4 carriers are at significantly higher risk of developing Alzheimer's disease than non-carriers
1 , controversial evidence suggests that APOE -ε4 might confer some advantages, explaining the survival of this gene (antagonistic pleiotropy)2,3 . In a population-based cohort born in one week in 1946 (assessed aged 69-71), we assessed differential effects of APOE -ε4 and β-amyloid pathology (quantified using18 F-Florbetapir-PET) on visual working memory (object-location binding). In 398 cognitively normal participants, APOE -ε4 and β-amyloid had opposing effects on object identification, predicting better and poorer recall respectively. ε4-carriers also recalled locations more precisely, with a greater advantage at higher β-amyloid burden. These results provide evidence of superior visual working memory in ε4-carriers, showing that some benefits of this genotype are demonstrable in older age, even in the preclinical stages of Alzheimer's disease., Competing Interests: Competing Interests Statement All authors declare no competing interests.- Published
- 2021
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45. Singing and music making: physiological responses across early to later stages of dementia.
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Walker N, Crutch SJ, West J, Jones FW, Brotherhood EV, Harding E, and Camic PM
- Abstract
Background : Music based interventions have been found to improve the wellbeing of people living with dementia. More recently there has been interest in physiological measures to provide additional information about how music and singing impact this population. Methods: This multiple-case study design explored physiological responses (heart rate-HR, electrodermal activity-EDA, movement, and skin temperature-ST) of nine people with mild-to-moderate dementia during a singing group, and six people in the later stages of dementia during an interactive music group. The interactive music group was also video recorded to provide information about engagement. Data were analysed using simulation modelling analysis. Results : The singing group showed an increase in EDA (p < 0.01 for 8/9 participants) and HR (p < 0.01 for 5/9 participants) as the session began. HR (p < 0.0001 for 5/9 participants) and ST (p < 0.0001 for 6/9 participants) increased during faster paced songs. EDA (p < 0.01 all), movement (p < 0.01 for 8/9 participants) and engagement were higher during an interactive music group compared to a control session (music listening). EDA (p < 0.0001 for 14/18 participants) and ST (p < 0.001 for 10/18 participants) increased and in contrast to the responses during singing, HR decreased as the sessions began (p < 0.002 for 9/18 participants). EDA was higher during slower music (p < 0.0001 for 13/18 participants), however this was less consistent in more interactive sessions than the control. There were no consistent changes in HR and movement responses during different styles of music. Conclusions : Physiological measures may provide valuable information about the experiences of people with dementia participating in arts and other activities, particularly for those with verbal communication difficulties. Future research should consider using physiological measures with video-analysis and observational measures to explore further how engagement in specific activities, wellbeing and physiology interact., Competing Interests: No competing interests were disclosed., (Copyright: © 2021 Walker N et al.)
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- 2021
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46. Arts-based interventions for people living with dementia: Measuring 'in the moment' wellbeing with the Canterbury Wellbeing Scales.
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Strohmaier S, Homans KM, Hulbert S, Crutch SJ, Brotherhood EV, Harding E, and Camic PM
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Background: There is growing acknowledgement for the need to move beyond exclusive biomedical understandings of dementia and also focus on how to improve the lives and wellbeing of people living with dementia. A mounting body of research advocates for the benefits of arts-based interventions for this population. The purpose of this study was to explore the links between multiple components of arts-based interventions and subjective wellbeing in order to help assess if these activities might contribute to meaningful community-based dementia care initiatives. Methods: Using previously collected data across different intervention sites, a within- and between- participants design was used that assessed wellbeing through the Canterbury Wellbeing Scales (CWS) in people with mild-to-moderate dementias (N = 201) who participated in various community arts-based interventions (ABI). Data were analysed using non-parametric statistical analyses and bootstrapped moderation models. Results: Increases in subjective wellbeing were associated with all forms of ABI. Co-creative sessions significantly strengthened the relationship between number of sessions attended and overall wellbeing as well as optimism. No significant moderating effect was observed between number of sessions attended and carer presence. Conclusions: In the largest study of its kind to date to assess wellbeing using arts activities in a community-based dementia sample, findings support the use and acceptability of the CWS as a measurement tool for people with early-to-middle stages of dementia and suggest that the CWS can reliably measure wellbeing in this population. In addition, the positive effect of arts-based interactions on specific aspects of wellbeing were found, which provide a better understanding of the conditions under which these effects can be prolonged and sustained. Further research is needed to better understand the environmental, social, and psychological mechanisms through which these improvements operate., Competing Interests: No competing interests were disclosed., (Copyright: © 2021 Strohmaier S et al.)
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- 2021
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47. Retinal phenotyping of variants of Alzheimer's disease using ultra-widefield retinal images.
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Csincsik L, Quinn N, Yong KXX, Crutch SJ, Peto T, and Lengyel I
- Abstract
Background: Posterior cortical atrophy (PCA) is the most common atypical variant of Alzheimer's disease (AD). Changes associated with PCA in the brain affect the visual cortex, but little is known about retinal changes in PCA. In this study, we explored retinal phenotypic variations in typical AD (tAD) and PCA., Methods: Retinal phenotyping was carried out on ultra-widefield (UWF) images of 69 control, 24 tAD, and 25 PCA participants., Results: Individuals with tAD (odds ratio [OR] = 2.76 [confidence interval (CI):1.24 to 6.10], P = .012) and PCA (OR = 3.40 [CI:1.25 to 9.22], P = .016) were more likely phenotyped as hard drusen. tAD (OR = 0.34 [CI:0.12 to 0.92], P = .035) were less likely to have soft drusen compared to control. Almost 3-fold increase in reticular pseudodrusen formation in tAD (OR = 2.93 [CI:1.10 to 7.76], P = .030) compared to control was estimated., Discussion: Studying the peripheral retina may contribute to a better understanding of differences in retinal phenotypes of different AD variants., Competing Interests: LC was supported by an unrestricted PhD studentship from Optos plc. LC is currently employed by Optos plc., (© 2021 The Authors. Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring published by Wiley Periodicals, LLC on behalf of Alzheimer's Association.)
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- 2021
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48. Suspecting dementia: canaries, chameleons and zebras.
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Johnson JCS, McWhirter L, Hardy CJD, Crutch SJ, Marshall CR, Mummery CJ, Rohrer JD, Rossor MN, Schott JM, Weil RS, Fox NC, and Warren JD
- Abstract
The early and accurate diagnosis of dementia is more important than ever before but remains challenging. Dementia is increasingly the business of neurologists and, with ageing populations worldwide, will become even more so in future. Here we outline a practical, symptom-led, bedside approach to suspecting dementia and its likely diagnosis, inspired by clinical experience and based on recognition of characteristic syndromic patterns. We show how clinical intuition reflects underlying signature profiles of brain involvement by the diseases that cause dementia and suggest next steps that can be taken to define the diagnosis. We propose 'canaries' that provide an early warning signal of emerging dementia and highlight the 'chameleons' that disguise or mimic this, as well as the 'zebras' that herald a rare (and sometimes curable) diagnostic opportunity., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.)
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- 2021
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49. Development of the Video Analysis Scale of Engagement (VASE) for people with advanced dementia.
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Daniel Lai LL, Crutch SJ, West J, Harding E, Brotherhood EV, Takhar R, Firth N, and Camic PM
- Abstract
Background : The current study sought to develop a valid, reliable and unobtrusive tablet computer-based observational measure to assess engagement of people with advanced dementia. The Video Analysis Scale of Engagement (VASE) was designed to enable the rating of moment-by-moment changes in engagement during an activity, which would be useful for both future research and current residential care. Methods : An initial version of the VASE was tested. Face validity and content validity were assessed to validate an operational definition of engagement and develop an acceptable protocol for the scale. Thirty-seven non-professional and professional volunteers were recruited to view and rate level of engagement in music activities using the VASE. Results : An inter-class coefficient (ICC) test gave a high level of rating agreement across professionals and non-professionals. However, the ICC results of within-professionals were mixed. Linear mixed modelling suggested that the types of interventions (active or passive music listening), the particular intervention session being rated, time period of video and the age of raters could affect the ratings. Conclusions : Results suggested that raters used the VASE in a dynamic fashion and that the measure was able to distinguish between interventions. Further investigation and adjustments are warranted for this to be considered a valid and reliable scale in the measurement of engagement of people with advanced dementia in a residential care setting., Competing Interests: No competing interests were disclosed., (Copyright: © 2021 Daniel Lai LL et al.)
- Published
- 2021
- Full Text
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50. Eye-tracking indices of impaired encoding of visual short-term memory in familial Alzheimer's disease.
- Author
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Pavisic IM, Pertzov Y, Nicholas JM, O'Connor A, Lu K, Yong KXX, Husain M, Fox NC, and Crutch SJ
- Subjects
- Alzheimer Disease genetics, Case-Control Studies, Cohort Studies, Female, Genetic Predisposition to Disease, Humans, Male, Photic Stimulation, Alzheimer Disease physiopathology, Eye Movements, Eye-Tracking Technology, Memory, Short-Term, Visual Perception
- Abstract
The basis of visual short-term memory (VSTM) impairments in preclinical Alzheimer's disease (AD) remains unclear. Research suggests that eye movements may serve as indirect surrogates to investigate VSTM. Yet, investigations in preclinical populations are lacking. Fifty-two individuals from a familial Alzheimer's disease (FAD) cohort (9 symptomatic carriers, 17 presymptomatic carriers and 26 controls) completed the "Object-localisation" VSTM task while an eye-tracker recorded eye movements during the stimulus presentation. VSTM function and oculomotor performance were compared between groups and their association during encoding investigated. Compared to controls, symptomatic FAD carriers showed eye movement patterns suggestive of an ineffective encoding and presymptomatic FAD carriers within 6 years of their expected age at symptom onset, were more reliant on the stimuli fixation time to achieve accuracy in the localisation of the target. Consequently, for shorter fixation times on the stimuli, presymptomatic carriers were less accurate at localising the target than controls. By contrast, the only deficits detected on behavioural VSTM function was in symptomatic individuals. Our findings provide novel evidence that encoding processes may be vulnerable and weakened in presymptomatic FAD carriers, most prominently for spatial memory, suggesting a possible explanation for the subtle VSTM impairments observed in the preclinical stages of AD.
- Published
- 2021
- Full Text
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