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Related Experiment Video

Updated: Nov 21, 2025

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting

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How Do Patients With Parkinson's Disease Approach Advance Care Planning? A UK-Based Mixed Methods Study.

Deepta Churm¹, Claire Dickinson², Louise Robinson²

¹North Tyneside Hospital, Northumbria Healthcare NHS Foundation Trust, North Shields, Tyne and Wear, United Kingdom.

Journal of Geriatric Psychiatry and Neurology

|January 19, 2021

Summary

Awareness of Advance Care Planning (ACP) is low among people with Parkinson's disease (PD), despite interest in learning more. Health professionals should proactively discuss ACP to improve understanding and engagement.

Keywords:

Parkinson’s disease advance care planning health services research

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Area of Science:

Neurology
Gerontology
Palliative Care

Background:

Advance Care Planning (ACP) facilitates future planning for individuals who may lose decision-making capacity.
Parkinson's disease (PD) presents unique challenges for future planning due to progressive neurological decline.

Purpose of the Study:

To assess awareness and existing plans related to ACP among individuals with Parkinson's disease (PD).
To explore the perspectives of people with PD and their relatives regarding future planning and ACP.

Main Methods:

A sequential explanatory mixed-methods approach was employed.
Quantitative postal surveys established awareness and engagement levels.
Qualitative semi-structured interviews provided in-depth views on ACP.

Main Results:

A significant majority (76%) of PD respondents were unaware of ACP, though 69% desired more information.
While most had wills (78%), fewer had lasting power of attorney (23%).
Interviewees' plans were predominantly practical, not health-related, with a preference for ACP discussions within their PD team at home.

Conclusions:

Understanding and awareness of ACP are notably low in the Parkinson's disease population.
A desire for information about ACP does not automatically lead to engagement.
Proactive identification and discussion of ACP by healthcare professionals are crucial, alongside raising awareness and ensuring accessibility for interested individuals.