TY - JOUR
T1 - Improving Conversations about Parkinson's Dementia
AU - Dobreva, Ivelina
AU - Thomas, Joanne
AU - Marr, Anne
AU - O’Connell, Ruairiadh
AU - Roche, Moïse
AU - Hannaway, Naomi
AU - Dore, Charlotte
AU - Rose, Sian
AU - Liu, Ken
AU - Bhome, Rohan
AU - Baldwin-Jones, Sion
AU - Roberts, Janet
AU - Archibald, Neil
AU - Alston, Duncan
AU - Amar, Khaled
AU - Edwards, Emma
AU - Foley, Jennifer A.
AU - Haunton, Victoria J.
AU - Henderson, Emily J.
AU - Jha, Ashwani
AU - Lindop, Fiona
AU - Magee, Cathy
AU - Massey, Luke
AU - Ruiz-Mendoza, Eladia
AU - Mohamed, Biju
AU - Patterson, Katherine
AU - Ramaswamy, Bhanu
AU - Schrag, Anette
AU - Silverdale, Monty
AU - Suárez-González, Aida
AU - Subramanian, Indu
AU - Foltynie, Tom
AU - Williams-Gray, Caroline H.
AU - Yarnall, Alison J.
AU - Carroll, Camille
AU - Bale, Claire
AU - Hugill, Cassandra
AU - Weil, Rimona S.
N1 - Publisher Copyright:
© 2024 The Authors. Movement Disorders Clinical Practice published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.
PY - 2024/5/2
Y1 - 2024/5/2
N2 - Background: People 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. Objectives: To co-produce information resources for patients and healthcare professionals to improve conversations about PD dementia. Methods: We 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. Results: While 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. Conclusion: Using 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.
AB - Background: People 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. Objectives: To co-produce information resources for patients and healthcare professionals to improve conversations about PD dementia. Methods: We 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. Results: While 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. Conclusion: Using 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.
KW - Parkinson's
KW - Parkinson's dementia
UR - http://www.scopus.com/inward/record.url?scp=85192210662&partnerID=8YFLogxK
U2 - 10.1002/mdc3.14054
DO - 10.1002/mdc3.14054
M3 - Article
C2 - 38696333
AN - SCOPUS:85192210662
SN - 2330-1619
VL - 11
SP - 814
EP - 824
JO - Movement Disorders Clinical Practice
JF - Movement Disorders Clinical Practice
IS - 7
ER -