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Delivering Optimal Care to People with Cognitive Impairment in Parkinson’s Disease: A Qualitative Study of Patient, Caregiver, and Professional Perspectives

Pigott, Jennifer S; Davies, Nathan; Chesterman, Elizabeth; Read, Joy; Nimmons, Danielle; Walters, Kate; Armstrong, Megan; (2023) Delivering Optimal Care to People with Cognitive Impairment in Parkinson’s Disease: A Qualitative Study of Patient, Caregiver, and Professional Perspectives. Parkinson’s Disease , 2023 , Article 9732217. 10.1155/2023/9732217. Green open access

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Abstract

Background: Cognitive impairment is common in Parkinson’s disease (PD) and associated with lower quality of life. Cognitive impairment in PD manifests differently to other dementia pathologies. Provision of optimal care requires knowledge about the support needs of this population. // Methods: Eleven people with PD and cognitive impairment (PwP), 10 family caregivers, and 27 healthcare professionals were purposively sampled from across the United Kingdom. Semistructured interviews were conducted in 2019–2021, audio-recorded, transcribed, and analysed using reflexive thematic analysis. // Results: Cognitive impairment in PD conveyed increased complexity for clinical management and healthcare interactions, the latter driven by multifactorial communication difficulties. Techniques that helped included slow, simple, and single messages, avoiding topic switching. Information and emotional support needs were often unmet, particularly for caregivers. Diagnostic pathways were inconsistent and awareness of cognitive impairment in PD was poor, both contributing to underdiagnosis. Many felt that PwP and cognitive impairment fell through service gaps, resulting from disjointed, nonspecific, and underresourced services. Personalised care was advocated through tailoring to individual needs of PwP and caregivers facilitated by flexibility, time and continuity within services, and supporting self-management. // Conclusions: This study highlights unmet need for people with this complex condition. Clinicians should adapt their approach and communication techniques for this population and provide tailored information and support to both PwP and caregivers. Services need to be more streamlined and collaborative, providing more time and flexibility. There is a need for wider awareness and deeper understanding of this condition and its differences from other types of dementia.

Type: Article
Title: Delivering Optimal Care to People with Cognitive Impairment in Parkinson’s Disease: A Qualitative Study of Patient, Caregiver, and Professional Perspectives
Open access status: An open access version is available from UCL Discovery
DOI: 10.1155/2023/9732217
Publisher version: https://doi.org/10.1155/2023/9732217
Language: English
Additional information: Copyright © 2023 Jennifer S. Pigott et al. This is an open access article distributed under the Creative Commons Attribution License, https://creativecommons.org/licenses/by/4.0/,which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health > Primary Care and Population Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Clinical and Movement Neurosciences
URI: https://discovery.ucl.ac.uk/id/eprint/10176021
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