Objective: To understand the patient’s perspective about cognitive changes in Parkinson’s disease and about the impact of cognitive dysfunction on daily life.  

Background: Cognitive dysfunction is expected and often debilitating for people with Parkinson’s disease (PWP). A better appreciation of and awareness about the patient’s perspective of cognitive difficulties and the impact these challenges have on daily life is indicated.

Methods: 1,548 PWP participated in a cross-sectional research design study. Participants completed the Everyday Cognition Scale (ECog), The Parkinson Alliance Cognitive Questionnaire (PACQ), and Lawton Instrumental Activities of Daily Living Scale.

Results: ECog: Language, Memory, Attention, and Organization, had the highest frequency of perceived change within age and disease duration-matched groups. The Attention domain had the highest reports of “consistent worsening” over time. PACQ: 65% of PWP reported mild to mild-to-moderate difficulties, and 16% reported moderate to severe difficulties. The most frequently reported cognitive difficulties were memory and expressive language skills, followed by slowed processing speed and difficulties with executive functioning. Difficulties in all cognitive domains were reported in greater frequency with age and disease progression. Slowed processing speed and increased difficulties with executive functions appear to be the most notable observed dynamic change as PD progresses. Across age and disease duration groups, the majority of participants’ reported experiencing an adverse impact of cognition on daily functions, with 22% (Younger and Early Disease Duration PD Group) to 43% (Older and Late Advanced PD Group) reported a moderate to extreme impact of cognitive difficulties on daily functions. Across the range of severity (mild to severe), cognitive difficulties were reported to impact activities of daily living, relationships with others, engagement in social activities and leisure activities/hobbies, and work.  

Conclusions: Cognitive deficits are highly prevalent and are perceived as disabling for many PWP. Despite research identifying reduced appreciation of cognitive deficits as a challenge in self-report (Copeland, et al., 2016), understanding the patient’s perspective about his or her personal experience has important implications.

References:

1. Copeland,J.N., Lieberman, A., Oravivattanakul, S., Tröster, AI. (2016). Accuracy of patient and care partner identification of cognitive impairments in Parkinson’s disease-Mild Cognitive Impairment. Movement Disorder, 31(5):693-8. 

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MDS Abstracts - https://www.mdsabstracts.org/abstract/the-impact-of-cognitive-changes-on-everyday-life-for-people-with-parkinsons-the-patients-perspective/