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6. Premorbid musical experience influences socio‐emotional functioning in behavioural variant frontotemporal dementia

Author

Hooft, Jochum J., primary, Benhamou, Elia, additional, Herreros, Claudia Albero, additional, Jiang, Jessica, additional, Levett, Benjamin, additional, Core, Lucy, additional, Requena‐Komuro, Mai‐Carmen, additional, Hardy, Chris JD, additional, Tijms, Betty M., additional, Pijnenburg, Yolande A.L., additional, and Warren, Jason D, additional

Published
2023
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11. Symptom‐led staging for semantic and non‐fluent/agrammatic variants of primary progressive aphasia

Author

Hardy, Chris J. D., primary, Taylor‐Rubin, Cathleen, additional, Taylor, Beatrice, additional, Harding, Emma, additional, Gonzalez, Aida Suarez, additional, Jiang, Jessica, additional, Thompson, Laura, additional, Kingma, Rachel, additional, Chokesuwattanaskul, Anthipa, additional, Walker, Ffion, additional, Barker, Suzie, additional, Brotherhood, Emilie, additional, Waddington, Claire, additional, Wood, Olivia, additional, Zimmermann, Nikki, additional, Kupeli, Nuriye, additional, Yong, Keir X. X., additional, Camic, Paul M., additional, Stott, Joshua, additional, Marshall, Charles R., additional, Oxtoby, Neil P., additional, Rohrer, Jonathan D., additional, Volkmer, Anna, additional, Crutch, Sebastian J., additional, and Warren, Jason D., additional

Published
2023
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19. Impaired phonemic discrimination in logopenic variant primary progressive aphasia

Author

Johnson, Jeremy C. S., primary, Jiang, Jessica, additional, Bond, Rebecca L., additional, Benhamou, Elia, additional, Requena‐Komuro, Maï‐Carmen, additional, Russell, Lucy L., additional, Greaves, Caroline, additional, Nelson, Annabel, additional, Sivasathiaseelan, Harri, additional, Marshall, Charles R., additional, Volkmer, Anna P., additional, Rohrer, Jonathan D., additional, Warren, Jason D., additional, and Hardy, Chris J. D., additional

Published
2020
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20. P2‐514: CAN EYETRACKING METRICS PROVIDE INSIGHT INTO THE DIAGNOSIS OF DIFFERENT DEMENTIA TYPES? A SPATIAL ANTICIPATION TASK

Author

Pavisic, Ivanna M., primary, Primativo, Silvia, additional, Yong, Keir, additional, Russell, Lucy L., additional, Hardy, Chris J.D., additional, Bond, Rebecca L., additional, Marshall, Charles R., additional, Brotherhood, Emilie V., additional, Warren, Jason D., additional, Rohrer, Jonathon D., additional, and Crutch, Sebastian J., additional

Published
2018
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23. [P2-479]: SELF-SCHEMA ALTERATIONS IN DEMENTIA

Author

Bond, Rebecca L., primary, Russell, Lucy L., additional, Marshall, Charles R., additional, Hardy, Chris JD., additional, Dick, Katrina M., additional, Woollacott, Ione OC., additional, Rohrer, Jonathan D., additional, Robinson, Oliver J., additional, Roiser, Jonathan P., additional, and Warren, Jason D., additional

Published
2017
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26. [P1-335]: THEMES AND VARIATIONS IN PPA: A CLINICAL AND NEUROBIOLOGICAL ANALYSIS OF THE UCL COHORT

Author

Hardy, Chris J.D., primary, Marshall, Charles R., additional, Bocchetta, Martina, additional, Harding, Sophie, additional, Russell, Lucy L., additional, Agustus, Jennifer L., additional, Bond, Rebecca L., additional, Brotherhood, Emilie V., additional, Carton, Amelia M., additional, Clark, Camilla N., additional, Cohen, Miriam H., additional, Dick, Katrina M., additional, Foulkes, Alexander JM., additional, Koriath, Carolin, additional, Gordon, Elizabeth, additional, Paterson, Ross W., additional, Slattery, Catherine F., additional, Woollacott, Ione OC., additional, Mead, Simon, additional, Mummery, Catherine J., additional, Rossor, Martin N., additional, Schott, Jonathan M., additional, Fox, Nick C., additional, Crutch, Sebastian J., additional, Rohrer, Jonathan D., additional, and Warren, Jason D., additional

Published
2017
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28. [P1-504]: TACTILE PROCESSING IN DEMENTIA

Author

Bond, Rebecca L., primary, Russell, Lucy L., additional, Marshall, Charles R., additional, Dick, Katrina M., additional, Woollacott, Ione O.C., additional, Hardy, Chris J.D., additional, Rohrer, Jonathan D., additional, Robinson, Oliver J., additional, Roiser, Jonathan P., additional, and Warren, Jason D., additional

Published
2017
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39. Dysphagia in primary progressive aphasia: Clinical predictors and neuroanatomical basis.

Author

Mazzeo S, Mulroy E, Jiang J, Lassi M, Johnson JCS, Hardy CJD, Rohrer JD, Warren JD, and Volkmer A

Subjects
Humans, Male, Female, Aged, Middle Aged, Retrospective Studies, Case-Control Studies, Atrophy pathology, Deglutition Disorders etiology, Deglutition Disorders pathology, Aphasia, Primary Progressive pathology, Aphasia, Primary Progressive diagnostic imaging, Aphasia, Primary Progressive complications, Magnetic Resonance Imaging
Abstract

Background and Purpose: Dysphagia is an important feature of neurodegenerative diseases and potentially life-threatening in primary progressive aphasia (PPA) but remains poorly characterized in these syndromes. We hypothesized that dysphagia would be more prevalent in nonfluent/agrammatic variant (nfv)PPA than other PPA syndromes, predicted by accompanying motor features, and associated with atrophy affecting regions implicated in swallowing control., Methods: In a retrospective case-control study at our tertiary referral centre, we recruited 56 patients with PPA (21 nfvPPA, 22 semantic variant [sv]PPA, 13 logopenic variant [lv]PPA). Using a pro forma based on caregiver surveys and clinical records, we documented dysphagia (present/absent) and associated, potentially predictive clinical, cognitive, and behavioural features. These were used to train a machine learning model. Patients' brain magnetic resonance imaging scans were assessed using voxel-based morphometry and region-of-interest analyses comparing differential atrophy profiles associated with dysphagia presence/absence., Results: Dysphagia was significantly more prevalent in nfvPPA (43% vs. 5% svPPA and no lvPPA). The machine learning model revealed a hierarchy of features predicting dysphagia in the nfvPPA group, with excellent classification accuracy (90.5%, 95% confidence interval = 77.9-100); the strongest predictor was orofacial apraxia, followed by older age, parkinsonism, more severe behavioural disturbance, and more severe cognitive impairment. Significant grey matter atrophy correlates of dysphagia in nfvPPA were identified in left middle frontal, right superior frontal, and right supramarginal gyri and right caudate., Conclusions: Dysphagia is a common feature of nfvPPA, linked to underlying corticosubcortical network dysfunction. Clinicians should anticipate this symptom particularly in the context of other motor features and more severe disease., (© 2024 The Author(s). European Journal of Neurology published by John Wiley & Sons Ltd on behalf of European Academy of Neurology.)

Published
2024
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40. 'Communication is difficult': Speech, language and communication needs of people with young onset or rarer forms of non-language led dementia.

Author

Volkmer A, Cross L, Highton L, Jackson C, Smith C, Brotherhood E, Harding EV, Mummery C, Rohrer J, Weil R, Yong K, Crutch S, and Hardy CJD

Subjects
Humans, Male, Female, Middle Aged, Aged, Qualitative Research, Speech Therapy methods, Focus Groups, Caregivers psychology, Age of Onset, Adult, Lewy Body Disease psychology, Lewy Body Disease complications, Lewy Body Disease therapy, Alzheimer Disease psychology, Alzheimer Disease therapy, Alzheimer Disease complications, Frontotemporal Dementia psychology, Frontotemporal Dementia therapy, Frontotemporal Dementia complications, Communication Disorders psychology, Communication Disorders therapy, Dementia psychology, Dementia therapy, Dementia complications, Language Therapy methods
Abstract

Background: People with behavioural variant frontotemporal dementia, Lewy body dementia, posterior cortical atrophy and young onset Alzheimer's disease may experience language and communication difficulties. However, the role of speech and language interventions for people with these non-language led dementias has received little attention., Aims: This study aimed to explore the experiences and perspectives of people living with these conditions, and their families, regarding their language and communication difficulties and how speech and language therapy could address these needs., Methods: This study employed a qualitative design to explore the experiences of people living with or caring for somebody with behavioural variant frontotemporal dementia, Lewy body dementia, posterior cortical atrophy or young onset Alzheimer's disease, and to understand their opinions about speech and language therapy. Participants were recruited from a support service connected to a dementia clinic to attend one of five focus group meetings. Videorecorded focus groups and interviews were transcribed, and reflexive thematic analysis was used to analyse data from people affected by each type of dementia., Results: A total of 25 participants were recruited to the study, with representation across the different forms of non-language led dementias. The four main themes identified were: (1) communication difficulties as a key difficulty, (2) loss and loneliness, (3) speech and language therapy, and (4) the role of the caregiver. Sixteen subthemes were also identified which highlighted individual issues across disease types., Discussion: Although all the forms of dementia studied here are not considered to be language-led, people with these conditions and/or their care partners identified speech, language and communication as common challenges. These communication difficulties were reported to have a negative impact on their social participation and mental health and participants felt speech and language interventions could help. There is a need for research exploring speech and language interventions developed for and with people with non-language led dementias and their care partners, to ensure they meet the needs of the people they are designed for., What This Paper Adds: What is already known on the subject People with primary progressive aphasia present with speech, language and communication difficulties, and several speech and language interventions have been developed to meet the needs of this population. However, people with non-language led dementias may also experience speech, language and communication difficulties, and little is known about interventions that may address these difficulties. What this paper adds to existing knowledge People living with or caring for somebody with behavioural variant frontotemporal dementia, Lewy body dementia, posterior cortical atrophy and young onset Alzheimer's disease report experiencing speech, language and communication difficulties that impact on the person with dementia's social participation and mood. Participants in this study also shared their opinions about how speech and language interventions could help, from the earliest stages of the disease. What are the potential or actual clinical implications of this work? Speech and language therapists need to address the individual speech, language and communication needs of people with dementias, even those that are not thought to be language-led. Current speech and language therapy service provision does not meet the needs of people with non-language led dementias and further research is required to develop interventions and services to meet these needs., (© 2024 The Authors. International Journal of Language & Communication Disorders published by John Wiley & Sons Ltd on behalf of Royal College of Speech and Language Therapists.)

Published
2024
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41. Symptom-based staging for logopenic variant primary progressive aphasia.

Author

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

Subjects
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.)

Published
2024
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42. 'Like going into a chocolate shop, blindfolded': What do people with primary progressive aphasia want from speech and language therapy?

Author

Loizidou M, Brotherhood E, Harding E, Crutch S, Warren JD, Hardy CJD, and Volkmer A

Subjects
Humans, Language Therapy, Speech, Speech Therapy methods, Chocolate, Aphasia, Primary Progressive diagnosis, Dementia
Abstract

Background: Primary progressive aphasia (PPA) describes a group of language-led dementias. PPAs are complex, diverse and difficult to diagnose, and therefore conventional models of aphasia and dementia treatment do not meet their needs. The research evidence on intervention for PPA is developing, but to date there are only a few case studies exploring the experiences of people with PPA (PwPPA) themselves., Aims: To explore the experiences and opinions of PwPPA and their communication partners (CPs) to understand how speech and language therapy (SLT) services can better meet their needs., Methods & Procedures: A qualitative research approach was used whereby PwPPA and their friends or family members were recruited to participate in focus groups, via advertisements in the Rare Dementia Support PPA group newsletters. Consenting participants were allocated to attend one of four focus groups hosted on an online video conferencing platform. Participants were asked about their communication difficulties, and how SLT could address these needs. All meetings were transcribed, and data were examined using reflexive thematic analysis., Outcomes & Results: Six PwPPA and 14 CPs representing all three PPA variants and mixed PPA participated in the focus groups. Four main themes were identified during the analysis of the focus group discussions: (1) CPs' burden, (2) adjusting to the diagnosis, (3) communication abilities and difficulties and (4) beyond language. A further 10 subthemes were identified., Conclusions & Implications: This study provides a greater understanding of the experiences and needs of PwPPA and their families in relation to SLT. This work underlines the importance of a person-centred approach that considers the broader needs of both the PwPPA and the people around them. This will enable service providers to deliver SLT that meets the needs of PwPPA and their families and will also inform future research in this field., What This Paper Adds: What is already known on this subject We know that PwPPA can maintain or even make improvements in word retrieval and speech fluency with SLT exercises. There is also developing evidence of the benefits of interventions such as CP training, communication aid support and other functional interventions. What this paper adds to existing knowledge This study provides an understanding of the experiences and opinions of people living with PPA and their families in relation to SLT. Results demonstrate that PwPPA and their families have to navigate a complex journey, identifying strategies to support communication but also the influence of personality and other cognitive symptoms. SLT was useful, but not always available. What are the potential or actual clinical implications of this work? This study will enable service providers to better plan, justify funding for and delivery of SLT that will meet the needs of PwPPA and their families. Most importantly this work underlines the importance of a person-centred approach, incorporating the broader needs of the person with PPA and those around them., (© 2022 The Authors. International Journal of Language & Communication Disorders published by John Wiley & Sons Ltd on behalf of Royal College of Speech and Language Therapists.)

Published
2023
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