Evidence map›Paper›PMID 38696333›Full record

ArticleMovement disorders clinical practice2024

Improving Conversations about Parkinson's Dementia.

Ivelina Dobreva, Joanne Thomas, Anne Marr, Ruairiadh O'Connell, Moïse Roche, Naomi Hannaway, Charlotte Dore, Sian Rose, Ken Liu, Rohan Bhome and 28 more

Abstract read
In one paragraph

Article in Movement disorders clinical practice, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

38 authors.

Ivelina DobrevaDementia Research Centre, Queen Square Institute of Neurology, University College London, Russell Square House, London, United Kingdom.ORCID 0000-0002-9401-1899
Joanne ThomasWellcome Centre for Human Neuroimaging, London, United Kingdom.
Anne MarrCentral Saint Martins, University of the Arts, London, United Kingdom.
Ruairiadh O'ConnellUAL Central Saint Martin's, London, United Kingdom.
Moïse RocheDivision of Psychiatry, University College London, London, United Kingdom.
Naomi HannawayDementia Research Centre, Queen Square Institute of Neurology, University College London, Russell Square House, London, United Kingdom.
Charlotte DoreWellcome Centre for Human Neuroimaging, London, United Kingdom.
Sian RoseWellcome Centre for Human Neuroimaging, London, United Kingdom.
Ken LiuWellcome Centre for Human Neuroimaging, London, United Kingdom.
Rohan BhomeDementia Research Centre, Queen Square Institute of Neurology, University College London, Russell Square House, London, United Kingdom.
Sion Baldwin-JonesParkinson's UK, London, United Kingdom.
Janet RobertsPerson with Lived Experience.
Neil ArchibaldSouth Tees Hospital NHS Foundation Trust, Middlesbrough, United Kingdom.
Duncan AlstonHillingdon Hospital, Uxbridge, United Kingdom.
Khaled AmarRoyal Bournemouth Hospital, NHS Foundation Trust, Bournemouth, United Kingdom.
Emma EdwardsLivewell Southwest, Plymouth, United Kingdom.
Jennifer A FoleyDepartment of Neuropsychology, National Hospital for Neurology and Neurosurgery, Queen Square, London, United Kingdom.ORCID 0000-0001-5083-2823
Victoria J HauntonFaculty of Health, University of Plymouth, Devon, United Kingdom.
Emily J HendersonAgeing and Movement Research Group, Bristol Medical School, University of Bristol, Bristol, United Kingdom.ORCID 0000-0002-0016-1870
Ashwani JhaUCL Queen Square Institute of Neurology, Univeristy College London, London, United Kingdom.ORCID 0000-0003-2835-6837
Fiona LindopParkinson's UK, London, United Kingdom.
Cathy MageeNational Hospital for Neurology and Neurosurgery, London, United Kingdom.
Luke MasseyPoole Hospital NHS Foundation Trust, Poole, United Kingdom.
Eladia Ruiz-MendozaNorth West Anglia NHS Foundation Trust, Peterborough City Hospital, Peterborough, United Kingdom.
Biju MohamedUniversity Hospital of Wales, Cardiff, United Kingdom.
Katherine PattersonDementia Research Centre, Queen Square Institute of Neurology, University College London, Russell Square House, London, United Kingdom.
Bhanu RamaswamyParkinson's UK, London, United Kingdom.
Anette SchragDepartment of Clinical Neuroscience, Institute of Neurology, UCL, London, United Kingdom.ORCID 0000-0002-9872-6680
Monty SilverdaleDepartment of Neurology, Salford Royal NHS Foundation Trust, Manchester Academic Health Science Centre, University of Manchester, Manchester, United Kingdom.ORCID 0000-0002-3295-6897
Aida Suárez-GonzálezDementia Research Centre, Queen Square Institute of Neurology, University College London, Russell Square House, London, United Kingdom.
Indu SubramanianDepartment of Neurology, David Geffen School of Medicine, Los Angeles, California, USA.ORCID 0000-0001-9966-0655
Tom FoltynieUCL Queen Square Institute of Neurology, Univeristy College London, London, United Kingdom.ORCID 0000-0003-0752-1813
Caroline H Williams-GrayDepartment of Clinical Neurosciences, University of Cambridge, United Kingdom.ORCID 0000-0002-2648-9743
Alison J YarnallTranslational and Clinical Research Institute, Newcastle University, Newcastle, United Kingdom.
Camille CarrollFaculty of Health, University of Plymouth, Drake Circus, Plymouth, United Kingdom.
Claire BaleParkinson's UK, London, United Kingdom.
Cassandra HugillWellcome Centre for Human Neuroimaging, London, United Kingdom.
Rimona S WeilDementia Research Centre, Queen Square Institute of Neurology, University College London, Russell Square House, London, United Kingdom.ORCID 0000-0002-5092-6325

Funding

Wellcome TrustWellcome Trust 205167/Z/Z16/A
6 · The paper itself

Abstract

backgroundPeople with Parkinson's disease (PD) have an increased risk of dementia, yet patients and clinicians frequently avoid talking about it due to associated stigma, and the perception that "nothing can be done about it". However, open conversations about PD dementia may allow people with the condition to access treatment and support, and may increase participation in research aimed at understanding PD dementia.

objectivesTo co-produce information resources for patients and healthcare professionals to improve conversations about PD dementia.

methodsWe worked with people with PD, engagement experts, artists, and a PD charity to open up these conversations. 34 participants (16 PD; 6 PD dementia; 1 Parkinsonism, 11 caregivers) attended creative workshops to examine fears about PD dementia and develop information resources. 25 PD experts contributed to the resources.

resultsWhile most people with PD (70%) and caregivers (81%) shared worries about cognitive changes prior to the workshops, only 38% and 30%, respectively, had raised these concerns with a healthcare professional. 91% of people with PD and 73% of caregivers agreed that PD clinicians should ask about cognitive changes routinely through direct questions and perform cognitive tests at clinic appointments. We used insights from the creative workshops, and input from a network of PD experts to co-develop two open-access resources: one for people with PD and their families, and one for healthcare professionals.

conclusionUsing artistic and creative workshops, co-learning and striving for diverse voices, we co-produced relevant resources for a wider audience to improve conversations about PD dementia.

Indexed as

CaregiversDementiaParkinson DiseaseAgedAged, 80 and overCommunicationFemaleHumansMaleMiddle AgedParkinson'sParkinson's dementia

Identifiers

PMID38696333
PMCPMC11233842

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.