{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,16]],"date-time":"2026-10-16T12:58:31Z","timestamp":1792155511036,"version":"4.4.0"},"reference-count":118,"publisher":"Elsevier BV","license":[{"start":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T00:00:00Z","timestamp":1782864000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T00:00:00Z","timestamp":1782864000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T00:00:00Z","timestamp":1782864000000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-017"},{"start":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T00:00:00Z","timestamp":1782864000000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-037"},{"start":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T00:00:00Z","timestamp":1782864000000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-012"},{"start":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T00:00:00Z","timestamp":1782864000000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-029"},{"start":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T00:00:00Z","timestamp":1782864000000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-004"}],"content-domain":{"domain":["elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Cortex"],"published-print":{"date-parts":[[2026,7]]},"DOI":"10.1016\/j.cortex.2026.05.004","type":"journal-article","created":{"date-parts":[[2026,5,9]],"date-time":"2026-05-09T15:25:55Z","timestamp":1778340355000},"page":"262-271","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":2,"special_numbering":"C","title":["Distress, not symptoms: Reframing psychological difficulties in neurodegenerative diseases of the motor system"],"prefix":"10.1016","volume":"200","author":[{"given":"Jane","family":"Simpson","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8129-6151","authenticated-orcid":false,"given":"Nicol\u00f2","family":"Zarotti","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"issue":"1","key":"10.1016\/j.cortex.2026.05.004_bib1","doi-asserted-by":"crossref","DOI":"10.1186\/s12883-016-0685-1","article-title":"The effects of a mindfulness-based lifestyle program for adults with Parkinson's disease: A mixed methods, wait list controlled randomised control study","volume":"16","author":"Advocat","year":"2016","journal-title":"BMC Neurology"},{"issue":"6","key":"10.1016\/j.cortex.2026.05.004_bib2","doi-asserted-by":"crossref","first-page":"1340","DOI":"10.1007\/s00415-019-09263-7","article-title":"Non-motor symptoms in Huntington's disease: A comparative study with Parkinson's disease","volume":"266","author":"Aldaz","year":"2019","journal-title":"Journal of Neurology"},{"issue":"4","key":"10.1016\/j.cortex.2026.05.004_bib3","doi-asserted-by":"crossref","first-page":"355","DOI":"10.3233\/JHD-180293","article-title":"Clinical management of neuropsychiatric symptoms of huntington disease: Expert-based consensus guidelines on agitation, anxiety, apathy, psychosis and sleep disorders","volume":"7","author":"Anderson","year":"2018","journal-title":"Journal of Huntington\u2019s Disease"},{"issue":"4","key":"10.1016\/j.cortex.2026.05.004_bib4","doi-asserted-by":"crossref","first-page":"418","DOI":"10.1002\/mdc3.14343","article-title":"Pharmacological treatment of neuropsychiatric symptoms in huntington's disease: A systematic review","volume":"12","author":"Andriessen","year":"2025","journal-title":"Movement Disorders Clinical Practice"},{"issue":"9","key":"10.1016\/j.cortex.2026.05.004_bib5","doi-asserted-by":"crossref","first-page":"1709","DOI":"10.1016\/j.pec.2020.03.023","article-title":"Giving and receiving a diagnosis of a progressive neurological condition: A scoping review of doctors' and patients' perspectives","volume":"103","author":"Anestis","year":"2020","journal-title":"Patient Education and Counseling"},{"issue":"2","key":"10.1016\/j.cortex.2026.05.004_bib6","doi-asserted-by":"crossref","first-page":"203","DOI":"10.1007\/s11192-007-1768-y","article-title":"Language use reflects scientific methodology: A corpus-based study of peer-reviewed journal articles","volume":"75","author":"Argamon","year":"2008","journal-title":"Scientometrics"},{"issue":"2","key":"10.1016\/j.cortex.2026.05.004_bib7","doi-asserted-by":"crossref","DOI":"10.1093\/pnasnexus\/pgac022","article-title":"Tracking group identity through natural language within groups","volume":"1","author":"Ashokkumar","year":"2022","journal-title":"PNAS Nexus"},{"issue":"4","key":"10.1016\/j.cortex.2026.05.004_bib8","doi-asserted-by":"crossref","first-page":"445","DOI":"10.1586\/ern.09.1","article-title":"Happiness and neurological diseases","volume":"9","author":"Barak","year":"2009","journal-title":"Expert Review of Neurotherapeutics"},{"issue":"8","key":"10.1016\/j.cortex.2026.05.004_bib9","doi-asserted-by":"crossref","first-page":"870","DOI":"10.1037\/hea0000182","article-title":"Chronic illness and loneliness in older adulthood: The role of self-protective control strategies","volume":"34","author":"Barlow","year":"2015","journal-title":"Health Psychology"},{"issue":"2","key":"10.1016\/j.cortex.2026.05.004_bib10","doi-asserted-by":"crossref","DOI":"10.1037\/rep0000311","article-title":"Understanding domains that influence perceived stigma in individuals with huntington disease","volume":"65","author":"Boileau","year":"2020","journal-title":"Rehabilitation Psychology"},{"key":"10.1016\/j.cortex.2026.05.004_bib11","series-title":"Psychological interventions for people with Huntington's disease, Parkinson's disease, motor neurone disease, and multiple sclerosis: Evidence-based guidance","year":"2021"},{"key":"10.1016\/j.cortex.2026.05.004_bib12","first-page":"61","article-title":"Depression in Parkinson's disease: A psychosocial viewpoint","volume":"65","author":"Brown","year":"1995","journal-title":"Advances in Neurology"},{"issue":"7","key":"10.1016\/j.cortex.2026.05.004_bib13","doi-asserted-by":"crossref","first-page":"735","DOI":"10.1080\/0968759042000284213","article-title":"Capabilities and disability: The capabilities framework and the social model of disability","volume":"19","author":"Burchardt","year":"2004","journal-title":"Disability and Society"},{"key":"10.1016\/j.cortex.2026.05.004_bib14","doi-asserted-by":"crossref","DOI":"10.1016\/j.lanepe.2024.100870","article-title":"The impact of psychiatric comorbidity on Parkinson's disease outcomes: A systematic review and meta-analysis","volume":"39","author":"Burchill","year":"2024","journal-title":"The Lancet Regional Health - Europe"},{"issue":"6","key":"10.1016\/j.cortex.2026.05.004_bib15","doi-asserted-by":"crossref","first-page":"625","DOI":"10.1093\/ptj\/pzx031","article-title":"Physical activity self-management and coaching compared to social interaction in huntington disease: Results from the ENGAGE-HD randomized, controlled pilot feasibility trial","volume":"97","author":"Busse","year":"2017","journal-title":"Physical Therapy"},{"issue":"3","key":"10.1016\/j.cortex.2026.05.004_bib16","first-page":"197","article-title":"Language as a tool in medicine: Methodology and theoretical framework","volume":"52","author":"Cassell","year":"1977","journal-title":"Journal of Medical Education"},{"key":"10.1016\/j.cortex.2026.05.004_bib17","doi-asserted-by":"crossref","first-page":"22","DOI":"10.1177\/0002716203254762","article-title":"Trying to do more good than harm in policy and practice: The role of rigorous, transparent, up-to-date evaluations","volume":"589","author":"Chalmers","year":"2003","journal-title":"The ANNALS of the American Academy of Political and Social Science"},{"issue":"13","key":"10.1016\/j.cortex.2026.05.004_bib18","doi-asserted-by":"crossref","first-page":"1901","DOI":"10.1002\/mds.21596","article-title":"The metric properties of a novel non-motor symptoms scale for Parkinson's disease: Results from an international pilot study","volume":"22","author":"Chaudhuri","year":"2007","journal-title":"Movement Disorders"},{"issue":"4","key":"10.1016\/j.cortex.2026.05.004_bib19","doi-asserted-by":"crossref","first-page":"288","DOI":"10.1037\/neu0000793","article-title":"Inhibitory control, working memory and coping with stress: Associations with symptoms of anxiety and depression in adults with Huntington's disease","volume":"36","author":"Ciriegio","year":"2022","journal-title":"Neuropsychology"},{"key":"10.1016\/j.cortex.2026.05.004_bib20","series-title":"Applied research in Parkinson's disease and related conditions: Mapping the funding and evidence landscape","author":"Clare","year":"2026"},{"key":"10.1016\/j.cortex.2026.05.004_bib21","article-title":"A systematic review and meta-analysis of depression and apathy frequency in adult-onset Huntington's disease","volume":"Vol. 149","author":"Clark","year":"2023"},{"issue":"2","key":"10.1016\/j.cortex.2026.05.004_bib22","doi-asserted-by":"crossref","first-page":"368","DOI":"10.1177\/17423953211069090","article-title":"Patient, carer and healthcare professional perspectives on increasing calorie intake in amyotrophic lateral sclerosis","volume":"19","author":"Coates","year":"2021","journal-title":"Chronic Illness"},{"issue":"3","key":"10.1016\/j.cortex.2026.05.004_bib23","doi-asserted-by":"crossref","first-page":"477","DOI":"10.1093\/oxfordjournals.schbul.a007095","article-title":"At issue: Stop the stigma: Call mental illness a brain disease","volume":"30","author":"Corrigan","year":"2004","journal-title":"Schizophrenia Bulletin"},{"issue":"2","key":"10.1016\/j.cortex.2026.05.004_bib24","doi-asserted-by":"crossref","first-page":"173","DOI":"10.1016\/j.pec.2007.06.002","article-title":"Social support in cyberspace: A content analysis of communication within a Huntington's disease online support group","volume":"68","author":"Coulson","year":"2007","journal-title":"Patient Education and Counseling"},{"issue":"1","key":"10.1016\/j.cortex.2026.05.004_bib25","doi-asserted-by":"crossref","DOI":"10.1186\/s12889-024-21236-8","article-title":"Exploring the stigma experienced by people affected by Parkinson's disease: A systematic review","volume":"25","author":"Crooks","year":"2025","journal-title":"BMC Public Health"},{"issue":"8","key":"10.1016\/j.cortex.2026.05.004_bib26","doi-asserted-by":"crossref","first-page":"1109","DOI":"10.1002\/gps.5122","article-title":"Language paradigms when behaviour changes with dementia: #BanBPSD","volume":"34","author":"Cunningham","year":"2019","journal-title":"International Journal of Geriatric Psychiatry"},{"issue":"4","key":"10.1016\/j.cortex.2026.05.004_bib27","doi-asserted-by":"crossref","first-page":"262","DOI":"10.1176\/appi.neuropsych.14100265","article-title":"Anxiety in Huntington's disease","volume":"27","author":"Dale","year":"2015","journal-title":"Journal of Neuropsychiatry and Clinical Neurosciences"},{"issue":"8","key":"10.1016\/j.cortex.2026.05.004_bib28","doi-asserted-by":"crossref","first-page":"1","DOI":"10.3390\/jpm12081222","article-title":"Using a clinical formulation to understand psychological distress in people affected by huntington's disease: A descriptive, evidence-based model","volume":"12","author":"Dale","year":"2022","journal-title":"Journal of Personalized Medicine"},{"issue":"2","key":"10.1016\/j.cortex.2026.05.004_bib29","doi-asserted-by":"crossref","first-page":"105","DOI":"10.1177\/0891988713481269","article-title":"Barriers to mental health care utilization in Parkinson's disease","volume":"26","author":"Dobkin","year":"2013","journal-title":"Journal of Geriatric Psychiatry and Neurology"},{"issue":"13\u201314","key":"10.1016\/j.cortex.2026.05.004_bib30","doi-asserted-by":"crossref","first-page":"1065","DOI":"10.3109\/09638288.2010.525287","article-title":"A review of the demographic, clinical and psychosocial correlates of perceived control in three chronic motor illnesses","volume":"33","author":"Eccles","year":"2011","journal-title":"Disability and Rehabilitation"},{"issue":"3","key":"10.1016\/j.cortex.2026.05.004_bib31","doi-asserted-by":"crossref","first-page":"425","DOI":"10.1080\/09638288.2022.2037743","article-title":"Stigma, self-compassion, and psychological distress among people with Parkinson's","volume":"45","author":"Eccles","year":"2023","journal-title":"Disability and Rehabilitation"},{"issue":"4","key":"10.1016\/j.cortex.2026.05.004_bib32","doi-asserted-by":"crossref","first-page":"e158","DOI":"10.1111\/hsc.12694","article-title":"Health-related stigma of noncommunicable neurological disease in rural adult populations: A scoping review","volume":"27","author":"Elliot","year":"2019","journal-title":"Health & Social Care in the Community"},{"issue":"4286","key":"10.1016\/j.cortex.2026.05.004_bib33","doi-asserted-by":"crossref","first-page":"129","DOI":"10.1126\/science.847460","article-title":"The need for a new medical model: A challenge for biomedicine","volume":"196","author":"Engel","year":"1977","journal-title":"Science"},{"issue":"8","key":"10.1016\/j.cortex.2026.05.004_bib34","doi-asserted-by":"crossref","first-page":"2547","DOI":"10.1016\/j.clnu.2019.11.015","article-title":"Interventions to promote oral nutritional behaviours in people living with neurodegenerative disorders of the motor system: A systematic review","volume":"39","author":"Essat","year":"2020","journal-title":"Clinical Nutrition"},{"issue":"10","key":"10.1016\/j.cortex.2026.05.004_bib35","doi-asserted-by":"crossref","first-page":"1181","DOI":"10.1080\/08870440802398188","article-title":"Illness representations, coping and psychological adjustment to Parkinson's disease","volume":"24","author":"Evans","year":"2009","journal-title":"Psychology & Health"},{"key":"10.1016\/j.cortex.2026.05.004_bib36","series-title":"The handbook of discourse analysis","first-page":"470","article-title":"Language and medicine","author":"Fleischman","year":"2008"},{"issue":"1","key":"10.1016\/j.cortex.2026.05.004_bib37","doi-asserted-by":"crossref","first-page":"55","DOI":"10.1111\/scs.12843","article-title":"Healthcare teams and patient-related terminology: A review of concepts and uses","volume":"35","author":"Flores-Sandoval","year":"2021","journal-title":"Scandinavian Journal of Caring Sciences"},{"issue":"12","key":"10.1016\/j.cortex.2026.05.004_bib38","doi-asserted-by":"crossref","first-page":"5045","DOI":"10.1007\/s10072-021-05171-9","article-title":"Effectiveness of a dance-physiotherapy combined intervention in Parkinson's disease: A randomized controlled pilot trial","volume":"42","author":"Frisaldi","year":"2021","journal-title":"Neurological Sciences"},{"issue":"2","key":"10.1016\/j.cortex.2026.05.004_bib39","doi-asserted-by":"crossref","first-page":"105","DOI":"10.3390\/neurosci4020011","article-title":"\u201cI feel like I work full-time for parkinson's\u201d: A longitudinal interpretative phenomenological analysis of the experiences of parkinson's informal caregivers during COVID-19 in England","volume":"4","author":"Garner","year":"2023","journal-title":"NeuroSci"},{"key":"10.1016\/j.cortex.2026.05.004_bib40","series-title":"Proceedings of the third workshop on computational lingusitics and clinical psychology","first-page":"63","article-title":"The language of mental health problems in social media","author":"Gkotsis","year":"2016"},{"issue":"2","key":"10.1016\/j.cortex.2026.05.004_bib41","doi-asserted-by":"crossref","first-page":"134","DOI":"10.1007\/s12178-015-9273-z","article-title":"Rethinking disability: The social model of disability and chronic disease","volume":"8","author":"Goering","year":"2015","journal-title":"In Current Reviews in Musculoskeletal Medicine"},{"issue":"11","key":"10.1016\/j.cortex.2026.05.004_bib42","doi-asserted-by":"crossref","DOI":"10.2196\/jmir.8775","article-title":"Beyond adoption: A new framework for theorizing and evaluating nonadoption, abandonment, and challenges to the scale-up, spread, and sustainability of health and care technologies","volume":"19","author":"Greenhalgh","year":"2017","journal-title":"Journal of Medical Internet Research"},{"issue":"4","key":"10.1016\/j.cortex.2026.05.004_bib43","doi-asserted-by":"crossref","DOI":"10.1002\/brb3.2954","article-title":"Mental health symptoms among those affected by Huntington's disease: A cross-sectional study","volume":"13","author":"Gunn","year":"2023","journal-title":"Brain and Behavior"},{"issue":"3","key":"10.1016\/j.cortex.2026.05.004_bib44","doi-asserted-by":"crossref","first-page":"151","DOI":"10.1177\/17579139231157531","article-title":"De-medicalising public mental health with the power threat meaning framework","volume":"143","author":"Harper","year":"2023","journal-title":"Perspectives in Public Health"},{"key":"10.1016\/j.cortex.2026.05.004_bib45","article-title":"Neuropsychiatric disorders in Parkinson's disease","volume":"Vol. 18","author":"Heim","year":"2025"},{"issue":"8","key":"10.1016\/j.cortex.2026.05.004_bib46","first-page":"1426","article-title":"Predictors of caregiver burden in huntington's disease","volume":"36","author":"Hergert","year":"2021","journal-title":"Archives of Clinical Neuropsychology"},{"issue":"5","key":"10.1016\/j.cortex.2026.05.004_bib47","doi-asserted-by":"crossref","first-page":"718","DOI":"10.1002\/gps.4845","article-title":"Goal-orientated cognitive rehabilitation for dementias associated with parkinson's disease\u2014a pilot randomised controlled trial","volume":"33","author":"Hindle","year":"2018","journal-title":"International Journal of Geriatric Psychiatry"},{"key":"10.1016\/j.cortex.2026.05.004_bib48","doi-asserted-by":"crossref","first-page":"95","DOI":"10.1016\/j.jocn.2024.06.007","article-title":"Is caregiver burden of patients with amyotrophic lateral sclerosis related to caregivers' mindfulness, quality of life, and patients' functional level","volume":"126","author":"Ipek","year":"2024","journal-title":"Journal of Clinical Neuroscience"},{"issue":"2","key":"10.1016\/j.cortex.2026.05.004_bib49","doi-asserted-by":"crossref","first-page":"117","DOI":"10.4103\/0253-7176.155605","article-title":"Recovery model of mental illness: A complementary approach to psychiatric care","volume":"37","author":"Jacob","year":"2015","journal-title":"In Indian Journal of Psychological Medicine"},{"issue":"2","key":"10.1016\/j.cortex.2026.05.004_bib50","doi-asserted-by":"crossref","first-page":"120","DOI":"10.1111\/j.1399-0004.2006.00702.x","article-title":"Young people's experiences of growing up in a family affected by Huntington's disease","volume":"71","author":"Keenan","year":"2007","journal-title":"Clinical Genetics"},{"key":"10.1016\/j.cortex.2026.05.004_bib51","series-title":"Philosophical issues in psychiatry II: Nosology","author":"Kendler","year":"2008"},{"issue":"3","key":"10.1016\/j.cortex.2026.05.004_bib52","doi-asserted-by":"crossref","first-page":"269","DOI":"10.1017\/S0144686X0000502X","article-title":"Towards a theory of dementia care: Personhood and well-being","volume":"12","author":"Kitwood","year":"1992","journal-title":"Ageing & Society"},{"issue":"1","key":"10.1016\/j.cortex.2026.05.004_bib53","doi-asserted-by":"crossref","DOI":"10.1080\/21642850.2022.2104286","article-title":"Social support experiences when growing up with a parent with Huntington's disease","volume":"10","author":"Kjoelaas","year":"2022","journal-title":"Health Psychology and Behavioral Medicine"},{"issue":"2","key":"10.1016\/j.cortex.2026.05.004_bib54","doi-asserted-by":"crossref","first-page":"211","DOI":"10.1080\/08870446.2021.1907387","article-title":"\u2018I knew it wasn't normal, I just didn't know what to do about it\u2019: Adversity and caregiver support when growing up in a family with Huntington's disease","volume":"37","author":"Kjoelaas","year":"2022","journal-title":"Psychology & Health"},{"issue":"2","key":"10.1016\/j.cortex.2026.05.004_bib55","doi-asserted-by":"crossref","first-page":"549","DOI":"10.1016\/j.neuropsychologia.2009.10.016","article-title":"Irritability in pre-clinical Huntington's disease","volume":"48","author":"Kl\u00f6ppel","year":"2010","journal-title":"Neuropsychologia"},{"issue":"8","key":"10.1016\/j.cortex.2026.05.004_bib56","doi-asserted-by":"crossref","first-page":"361","DOI":"10.1055\/s-2007-996341","article-title":"Therapy of parkinson disease. 1: Standard therapy of motor and non-motor symptoms","volume":"65","author":"Kuhn","year":"1997","journal-title":"Fortschritte Der Neurologie-Psychiatrie"},{"issue":"s1","key":"10.1016\/j.cortex.2026.05.004_bib57","doi-asserted-by":"crossref","first-page":"S35","DOI":"10.3233\/JPD-230266","article-title":"Adherence to non-pharmacological interventions in parkinson's disease: A rapid evidence assessment of the literature","volume":"14","author":"Li","year":"2024","journal-title":"In Journal of Parkinson\u2019s Disease"},{"issue":"2","key":"10.1016\/j.cortex.2026.05.004_bib58","doi-asserted-by":"crossref","first-page":"117","DOI":"10.2174\/157015908784533860","article-title":"Antipsychotics for the treatment of behavioral and psychological symptoms of dementia (BPSD)","volume":"6","author":"Liperoti","year":"2008","journal-title":"Current Neuropharmacology"},{"issue":"2","key":"10.1016\/j.cortex.2026.05.004_bib59","doi-asserted-by":"crossref","first-page":"236","DOI":"10.1080\/01463373.2012.752397","article-title":"Communication that changes lives: Social support within an online health community for ALS","volume":"61","author":"Loane","year":"2013","journal-title":"Communication Quarterly"},{"issue":"4","key":"10.1016\/j.cortex.2026.05.004_bib60","doi-asserted-by":"crossref","first-page":"207","DOI":"10.1016\/S1353-8020(97)00021-7","article-title":"A comparison of Parkinson's disease symptoms and self-reported functioning and well being","volume":"3","author":"Lyons","year":"1997","journal-title":"Parkinsonism & Related Disorders"},{"issue":"2","key":"10.1016\/j.cortex.2026.05.004_bib61","doi-asserted-by":"crossref","first-page":"162","DOI":"10.1177\/18796397251348677","article-title":"Childhood trauma and psychological distress during adulthood in children from Huntington's disease families: An exploratory retrospective analysis","volume":"14","author":"Maffi","year":"2025","journal-title":"Journal of Huntington\u2019s Disease"},{"key":"10.1016\/j.cortex.2026.05.004_bib62","volume":"Vol 2017","author":"Maffoni","year":"2017"},{"issue":"4","key":"10.1016\/j.cortex.2026.05.004_bib63","article-title":"Impact of multidisciplinary team-based care on quality of life in patients with neurodegenerative disorders: A systematic review and meta-analysis","volume":"16","author":"Marchi\u015f","year":"2025","journal-title":"Balneo and PRM Research Journal"},{"issue":"1","key":"10.1016\/j.cortex.2026.05.004_bib64","doi-asserted-by":"crossref","first-page":"37","DOI":"10.1177\/1524839904266790","article-title":"A review and synthesis of research evidence for self-efficacy-enhancing interventions for reducing chronic disability: Implications for health education practice (Part II)","volume":"6","author":"Marks","year":"2005","journal-title":"Health Promotion Practice"},{"key":"10.1016\/j.cortex.2026.05.004_bib65","doi-asserted-by":"crossref","first-page":"58","DOI":"10.1016\/j.parkreldis.2016.02.008","article-title":"Neuropsychiatric symptoms are very common in premanifest and early stage Huntington's disease","volume":"25","author":"Martinez-Horta","year":"2016","journal-title":"Parkinsonism & Related Disorders"},{"issue":"1\u20132","key":"10.1016\/j.cortex.2026.05.004_bib66","doi-asserted-by":"crossref","first-page":"4","DOI":"10.1016\/j.jns.2007.03.001","article-title":"A review of psychosocial aspects of motor neurone disease","volume":"258","author":"McLeod","year":"2007","journal-title":"Journal of the Neurological Sciences"},{"issue":"8","key":"10.1016\/j.cortex.2026.05.004_bib67","doi-asserted-by":"crossref","first-page":"939","DOI":"10.1080\/08870446.2013.770513","article-title":"Exploring the transitional process from receiving a diagnosis to living with motor neurone disease","volume":"28","author":"Mistry","year":"2013","journal-title":"Psychology & Health"},{"issue":"4","key":"10.1016\/j.cortex.2026.05.004_bib68","doi-asserted-by":"crossref","DOI":"10.1192\/bjo.2020.58","article-title":"Double stigma in mental health: Epilepsy and mental illness","volume":"6","author":"Mula","year":"2020","journal-title":"BJPsych Open"},{"issue":"14","key":"10.1016\/j.cortex.2026.05.004_bib69","first-page":"45","article-title":"Non-motor symptoms of parkinson disease. Significant impact on quality of life--using possible treatments","volume":"115","author":"Muller","year":"1997","journal-title":"Fortschritte Der Medizin"},{"issue":"3","key":"10.1016\/j.cortex.2026.05.004_bib70","doi-asserted-by":"crossref","first-page":"222","DOI":"10.1111\/j.1752-9824.2011.01082.x","article-title":"\u2018Living well with Parkinson's\u2019: Evaluation of a programme to promote self-management","volume":"3","author":"Mulligan","year":"2011","journal-title":"Journal of Nursing and Healthcare of Chronic Illness"},{"issue":"7\u20138","key":"10.1016\/j.cortex.2026.05.004_bib71","doi-asserted-by":"crossref","first-page":"673","DOI":"10.1080\/21678421.2025.2511119","article-title":"Assessment of the \u201cMND-Prism\u201d smartphone application as a tool for self-management","volume":"26","author":"Neville","year":"2025","journal-title":"Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration"},{"issue":"2","key":"10.1016\/j.cortex.2026.05.004_bib72","doi-asserted-by":"crossref","DOI":"10.3390\/brainsci15020112","article-title":"Non-pharmacological interventions for caregivers of people with motor neurone disease: A scoping review of psychosocial outcomes","volume":"15","author":"Okoh","year":"2025","journal-title":"Brain Sciences"},{"issue":"12","key":"10.1016\/j.cortex.2026.05.004_bib73","doi-asserted-by":"crossref","first-page":"856","DOI":"10.3949\/ccjm.75a.07005","article-title":"Parkinson disease: Not just a movement disorder","volume":"75","author":"Pandya","year":"2008","journal-title":"Cleveland Clinic Journal of Medicine"},{"issue":"2","key":"10.1016\/j.cortex.2026.05.004_bib74","doi-asserted-by":"crossref","first-page":"155","DOI":"10.1177\/08919887221103575","article-title":"Prevalence and correlates of psychiatric comorbidity and multimorbidity in parkinson's disease and atypical parkinsonian syndromes","volume":"36","author":"Patel","year":"2023","journal-title":"Journal of Geriatric Psychiatry and Neurology"},{"issue":"1","key":"10.1016\/j.cortex.2026.05.004_bib75","article-title":"\u2018It pulls you down, but you need it to access the benefits\u2019: The double-edged sword of mental illness diagnosis","volume":"16","author":"Pereira","year":"2022","journal-title":"Ciencias Psicologicas"},{"issue":"1","key":"10.1016\/j.cortex.2026.05.004_bib76","doi-asserted-by":"crossref","first-page":"126","DOI":"10.1007\/s10465-017-9242-8","article-title":"Effects of dance classes on cognition, depression, and self-efficacy in parkinson's disease","volume":"39","author":"Prewitt","year":"2017","journal-title":"American Journal of Dance Therapy"},{"issue":"5\u20136","key":"10.1016\/j.cortex.2026.05.004_bib77","doi-asserted-by":"crossref","first-page":"448","DOI":"10.3109\/17482960802459889","article-title":"How common is depression among ALS caregivers? A longitudinal study","volume":"10","author":"Rabkin","year":"2009","journal-title":"Amyotrophic Lateral Sclerosis"},{"key":"10.1016\/j.cortex.2026.05.004_bib78","doi-asserted-by":"crossref","first-page":"219","DOI":"10.2147\/JMDH.S202827","article-title":"Improvement in quality of life following a multidisciplinary rehabilitation program for patients with Parkinson's disease","volume":"12","author":"Ritter","year":"2019","journal-title":"Journal of Multidisciplinary Healthcare"},{"key":"10.1016\/j.cortex.2026.05.004_bib79","series-title":"Perceived control","first-page":"201","article-title":"Perceived control and behavior change","author":"Robinson","year":"2016"},{"issue":"1","key":"10.1016\/j.cortex.2026.05.004_bib80","first-page":"30","article-title":"The effect of music therapy for patients with huntington's disease: A systematic literature review","volume":"5","author":"Roos","year":"2015","journal-title":"Journal of Literature and Art Studies"},{"issue":"1","key":"10.1016\/j.cortex.2026.05.004_bib81","doi-asserted-by":"crossref","first-page":"24","DOI":"10.1016\/S0033-3182(00)71170-4","article-title":"Neuropsychiatry of huntington's disease and other basal ganglia disorders","volume":"41","author":"Rosenblatt","year":"2000","journal-title":"Psychosomatics"},{"issue":"4","key":"10.1016\/j.cortex.2026.05.004_bib82","doi-asserted-by":"crossref","first-page":"505","DOI":"10.1016\/0272-7358(89)90006-8","article-title":"Language and psychotherapy","volume":"9","author":"Russell","year":"1989","journal-title":"Clinical Psychology Review"},{"key":"10.1016\/j.cortex.2026.05.004_bib83","first-page":"1","article-title":"Attachment-informed mental healthcare systems as \u2018organisational caregivers\u2019: Ideas for the future","author":"Salmoiraghi","year":"2024","journal-title":"BJPsych Bulletin"},{"issue":"7\u20138","key":"10.1016\/j.cortex.2026.05.004_bib84","doi-asserted-by":"crossref","first-page":"562","DOI":"10.1080\/21678421.2023.2220748","article-title":"Non-motor symptoms in amyotrophic lateral sclerosis: Lessons from Parkinson's disease","volume":"24","author":"Shojaie","year":"2023","journal-title":"Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration"},{"key":"10.1016\/j.cortex.2026.05.004_bib85","doi-asserted-by":"crossref","first-page":"353","DOI":"10.1016\/j.cortex.2019.06.012","article-title":"Validity of irritability in Huntington's disease: A scoping review","volume":"120","author":"Simpson","year":"2019","journal-title":"Cortex"},{"key":"10.1016\/j.cortex.2026.05.004_bib86","series-title":"Extended evidence-based guidance on psychological interventions for psychological difficulties in individuals with Huntington's disease, Parkinson's disease, motor neurone disease, and multiple sclerosis","author":"Simpson","year":"2021"},{"issue":"7","key":"10.1016\/j.cortex.2026.05.004_bib87","doi-asserted-by":"crossref","first-page":"611","DOI":"10.3109\/09638288.2014.939771","article-title":"Experiences of apathy in people with Parkinson's disease: A qualitative exploration","volume":"37","author":"Simpson","year":"2015","journal-title":"Disability and Rehabilitation"},{"key":"10.1016\/j.cortex.2026.05.004_bib88","first-page":"1","article-title":"\u2018It's a double whammy\u2019: A qualitative study of illness uncertainty in individuals with Parkinson's disease in the context of COVID-19","author":"Simpson","year":"2021","journal-title":"Chronic Illness"},{"issue":"4","key":"10.1016\/j.cortex.2026.05.004_bib89","doi-asserted-by":"crossref","first-page":"309","DOI":"10.1046\/j.1525-1497.2002.20210.x","article-title":"The biopsychosocial revolution","volume":"17","author":"Smith","year":"2002","journal-title":"Journal of General Internal Medicine"},{"key":"10.1016\/j.cortex.2026.05.004_bib90","doi-asserted-by":"crossref","DOI":"10.1080\/21507740.2025.2601356","article-title":"A qualified critique of the terminology of behavioral and psychological symptoms of dementia (BPSD)","author":"Soofi","year":"2025","journal-title":"AJOB Neuroscience"},{"issue":"12","key":"10.1016\/j.cortex.2026.05.004_bib91","doi-asserted-by":"crossref","first-page":"797","DOI":"10.31128\/AJGP-08-20-5606","article-title":"Making a good mental health diagnosis: Science, art and ethics","volume":"49","author":"Stone","year":"2020","journal-title":"Australian Journal of General Practice"},{"key":"10.1016\/j.cortex.2026.05.004_bib92","series-title":"We need to Ban BPSD before it's too late","author":"Swaffer","year":"2019"},{"key":"10.1016\/j.cortex.2026.05.004_bib93","series-title":"Rethinking dementia: BanBPS","author":"Swaffer","year":"2018"},{"issue":"2","key":"10.1016\/j.cortex.2026.05.004_bib94","doi-asserted-by":"crossref","first-page":"216","DOI":"10.1111\/papt.12157","article-title":"Understandings of psychological difficulties in people with the Huntington's disease gene and their expectations of psychological therapy","volume":"91","author":"Theed","year":"2018","journal-title":"Psychology and Psychotherapy: Theory, Research and Practice"},{"key":"10.1016\/j.cortex.2026.05.004_bib95","article-title":"\u2018It's more than just irritability\u2019: Perspectives and experiences of irritability among people affected by Huntington's disease","author":"Tindall","year":"2025","journal-title":"Psychology & Health"},{"issue":"8","key":"10.1016\/j.cortex.2026.05.004_bib96","doi-asserted-by":"crossref","first-page":"1261","DOI":"10.1017\/S1041610217000667","article-title":"Touchscreen interventions and the well-being of people with dementia and caregivers: A systematic review","volume":"29","author":"Tyack","year":"2017","journal-title":"International Psychogeriatrics"},{"key":"10.1016\/j.cortex.2026.05.004_bib97","doi-asserted-by":"crossref","DOI":"10.1016\/j.xjep.2025.100766","article-title":"A qualitative exploration of music therapy and physical therapy co-treatment: Joining forces to treat individuals with late-stage Huntington's disease","volume":"41","author":"Ulanowski","year":"2025","journal-title":"Journal of Interprofessional Education and Practice"},{"issue":"7","key":"10.1016\/j.cortex.2026.05.004_bib98","doi-asserted-by":"crossref","first-page":"739","DOI":"10.1016\/j.jocn.2005.03.008","article-title":"Current approaches to management of depression in Parkinson's disease","volume":"12","author":"Vajda","year":"2005","journal-title":"Journal of Clinical Neuroscience"},{"issue":"1\u20132","key":"10.1016\/j.cortex.2026.05.004_bib99","doi-asserted-by":"crossref","first-page":"246","DOI":"10.1016\/j.pec.2005.11.019","article-title":"Attachment in families with Huntington's disease. A paradigm in clinical genetics","volume":"63","author":"Van der Meer","year":"2006","journal-title":"Patient Education and Counseling"},{"issue":"5","key":"10.1016\/j.cortex.2026.05.004_bib100","doi-asserted-by":"crossref","first-page":"862","DOI":"10.1007\/s10897-015-9822-z","article-title":"Do attachment style and emotion regulation strategies indicate distress in predictive testing?","volume":"24","author":"van der Meer","year":"2015","journal-title":"Journal of Genetic Counseling"},{"key":"10.1016\/j.cortex.2026.05.004_bib101","article-title":"Psychological care for Huntington's disease: A qualitative study exploring interventions in the Netherlands","author":"Van der Zwaan","year":"2025","journal-title":"Psychology and Psychotherapy: Theory, Research and Practice"},{"issue":"21","key":"10.1016\/j.cortex.2026.05.004_bib102","doi-asserted-by":"crossref","first-page":"1828","DOI":"10.1212\/WNL.0000000000002158","article-title":"More than just a movement disorder","volume":"85","author":"Ventura","year":"2015","journal-title":"Neurology"},{"issue":"December 2019","key":"10.1016\/j.cortex.2026.05.004_bib103","article-title":"Does perceived control mediate the relationship between stigma and well-being for individuals with Parkinson's disease?","volume":"414","author":"Verity","year":"2020","journal-title":"Journal of the Neurological Sciences"},{"issue":"6","key":"10.1016\/j.cortex.2026.05.004_bib104","doi-asserted-by":"crossref","first-page":"1022","DOI":"10.1002\/mds.23664","article-title":"Parkinson's disease: The quintessential neuropsychiatric disorder","volume":"26","author":"Weintraub","year":"2011","journal-title":"Movement Disorders: Official Journal of the Movement Disorder Society"},{"issue":"4","key":"10.1016\/j.cortex.2026.05.004_bib105","doi-asserted-by":"crossref","first-page":"631","DOI":"10.1037\/0033-2909.130.4.631","article-title":"The empirical status of empirically supported psychotherapies: Assumptions, findings, and reporting in controlled clinical trials","volume":"130","author":"Westen","year":"2004","journal-title":"Psychological Bulletin"},{"issue":"4","key":"10.1016\/j.cortex.2026.05.004_bib106","doi-asserted-by":"crossref","first-page":"583","DOI":"10.1016\/j.socscimed.2008.04.014","article-title":"Caregivers' experiences of caring for a husband with Parkinson's disease and psychotic symptoms","volume":"67","author":"Williamson","year":"2008","journal-title":"Social Science & Medicine"},{"issue":"4","key":"10.1016\/j.cortex.2026.05.004_bib107","doi-asserted-by":"crossref","first-page":"1","DOI":"10.21926\/obm.geriatr.1904080","article-title":"Naming and framing the behavioural and psychological symptoms of dementia (BPSD) paradigm: Professional stakeholder perspectives","volume":"3","author":"Wolverson","year":"2019","journal-title":"OBM Geriatrics"},{"issue":"4","key":"10.1016\/j.cortex.2026.05.004_bib108","doi-asserted-by":"crossref","first-page":"1992","DOI":"10.1111\/jan.14787","article-title":"The language of behaviour changes in dementia: A mixed methods survey exploring the perspectives of people with dementia","volume":"77","author":"Wolverson","year":"2021","journal-title":"Journal of Advanced Nursing"},{"key":"10.1016\/j.cortex.2026.05.004_bib109","series-title":"The relationship between perceived control, depression, and medication adherence in people with parkinson's disease","author":"Zarotti","year":"2022"},{"issue":"4","key":"10.1016\/j.cortex.2026.05.004_bib110","doi-asserted-by":"crossref","first-page":"953","DOI":"10.1111\/bjhp.12388","article-title":"Health care professionals' views on psychological factors affecting nutritional behaviour in people with motor neuron disease: A thematic analysis","volume":"24","author":"Zarotti","year":"2019","journal-title":"British Journal of Health Psychology"},{"issue":"2","key":"10.1016\/j.cortex.2026.05.004_bib111","doi-asserted-by":"crossref","first-page":"98","DOI":"10.3390\/neurosci5020007","article-title":"\u2018I Wouldn't Even Know What to Ask for\u2019: Patients' and Caregivers' experiences of psychological support for huntington's disease in Italy","volume":"5","author":"Zarotti","year":"2024","journal-title":"NeuroSci"},{"issue":"3","key":"10.1016\/j.cortex.2026.05.004_bib112","doi-asserted-by":"crossref","first-page":"231","DOI":"10.3233\/JHD-200418","article-title":"Psychological interventions for people with huntington's disease: A call to arms","volume":"9","author":"Zarotti","year":"2020","journal-title":"Journal of Huntington\u2019s Disease"},{"issue":"1","key":"10.1016\/j.cortex.2026.05.004_bib113","doi-asserted-by":"crossref","DOI":"10.3390\/jpm12010064","article-title":"More than just a brain disorder: A five-point manifesto for psychological care for people with huntington's disease","volume":"12","author":"Zarotti","year":"2022","journal-title":"Journal of Personalized Medicine"},{"issue":"3","key":"10.1016\/j.cortex.2026.05.004_bib114","doi-asserted-by":"crossref","first-page":"478","DOI":"10.1080\/09638288.2023.2181409","article-title":"Perceived control as a predictor of medication adherence in people with Parkinson's: A large-scale cross-sectional study","volume":"46","author":"Zarotti","year":"2024","journal-title":"Disability and Rehabilitation"},{"issue":"3","key":"10.1016\/j.cortex.2026.05.004_bib115","doi-asserted-by":"crossref","first-page":"443","DOI":"10.1080\/09638288.2023.2169376","article-title":"Psychosocial interventions affecting global perceptions of control in people with Parkinson's disease: A scoping review","volume":"46","author":"Zarotti","year":"2024","journal-title":"Disability and Rehabilitation"},{"issue":"3","key":"10.1016\/j.cortex.2026.05.004_bib116","doi-asserted-by":"crossref","first-page":"760","DOI":"10.1111\/papt.12321","article-title":"Psychological interventions for people with Parkinson's disease in the early 2020s: Where do we stand?","volume":"94","author":"Zarotti","year":"2021","journal-title":"Psychology and Psychotherapy: Theory, Research and Practice"},{"issue":"1\u20132","key":"10.1016\/j.cortex.2026.05.004_bib117","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1080\/21678421.2020.1788094","article-title":"Psychological interventions for people with motor neuron disease: A scoping review","volume":"22","author":"Zarotti","year":"2021","journal-title":"Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration"},{"issue":"1","key":"10.1016\/j.cortex.2026.05.004_bib118","doi-asserted-by":"crossref","first-page":"61","DOI":"10.1177\/1742395317733793","article-title":"\u2018I have a feeling I can't speak to anybody\u2019: A thematic analysis of communication perspectives in people with Huntington's disease","volume":"15","author":"Zarotti","year":"2019","journal-title":"Chronic Illness"}],"container-title":["Cortex"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0010945226001334?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0010945226001334?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2026,6,12]],"date-time":"2026-06-12T21:09:50Z","timestamp":1781298590000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S0010945226001334"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,7]]},"references-count":118,"alternative-id":["S0010945226001334"],"URL":"https:\/\/doi.org\/10.1016\/j.cortex.2026.05.004","relation":{},"ISSN":["0010-9452"],"issn-type":[{"value":"0010-9452","type":"print"}],"subject":[],"published":{"date-parts":[[2026,7]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Distress, not symptoms: Reframing psychological difficulties in neurodegenerative diseases of the motor system","name":"articletitle","label":"Article Title"},{"value":"Cortex","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.cortex.2026.05.004","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"simple-article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2026 Elsevier Ltd. All rights are reserved, including those for text and data mining, AI training, and similar technologies.","name":"copyright","label":"Copyright"}]}}