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Compound impact of cognitive and physical decline: A qualitative interview study of people with Parkinson's and cognitive impairment, caregivers and professionals.
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- Author(s): Pigott, Jennifer S.; Davies, Nathan; Chesterman, Elizabeth; Read, Joy; Nimmons, Danielle; Walters, Kate; Armstrong, Megan; Schrag, Anette
- Source:
Health Expectations; Feb2024, Vol. 27 Issue 1, p1-14, 14p- Subject Terms:
COGNITION disorders; CAREGIVER attitudes; CAREGIVERS; SOCIAL support; NEUROLOGISTS; FUNCTIONAL status; ATTITUDES of medical personnel; RESEARCH methodology; MOTIVATION (Psychology); SELF-management (Psychology); INTERVIEWING; ACTIVITIES of daily living; FEAR; PSYCHOLOGISTS; PATIENTS' attitudes; QUALITATIVE research; COMMUNICATIVE disorders; PARKINSON'S disease; SOUND recordings; RESEARCH funding; DESCRIPTIVE statistics; NURSES; JUDGMENT sampling; THEMATIC analysis; DATA analysis software; EMOTIONS - Source:
- Additional Information
- Subject Terms:
- Abstract: Background: Cognitive impairment is common in Parkinson's disease and is associated with poorer quality of life and increased caregiver distress, but little qualitative information is available on lived experiences of people with Parkinson's who also have cognitive impairment. Objectives: The aim of this study was to explore the challenges of cognitive impairment in Parkinson's, triangulating the perspectives of people with Parkinson's, caregivers and healthcare professionals. Methods: Semistructured interviews were conducted with 11 people with Parkinson's and cognitive impairment, 10 family caregivers and 27 healthcare professionals, using purposive sampling in the United Kingdom (2019–2021). Cognitive impairment was identified by healthcare professionals and required subjective symptoms. Relevant cognitive diagnoses were recorded. Interviews were audio‐recorded, transcribed and analysed using reflexive thematic analysis. Results: An overarching concept of the compound impact of cognitive and physical decline was developed, with six themes. Four themes describe the experience of living with cognitive impairment in Parkinson's: (1) Challenges in Daily Activities, (2) Psychological Impact and (3) Evolving Communication Difficulties together contributing to (4) Social Shift, encompassing a reduction in wider social activities but intensification of close relationships with increased dependence. A fifth theme (5) Living Well describes positive influences on these experiences, encompassing intrinsic motivation, self‐management strategies and supportive relationships. Furthermore, underlying and shaping the whole experience was the sixth theme: (6) Preconceptions about Cognitive Impairment, describing fear and denial of symptoms and poor understanding of the nature of cognitive impairment in Parkinson's, with differences to other dementia pathologies. Conclusions: Cognitive impairment superimposed on the existing challenges of Parkinson's has a multifaceted impact and makes living with the condition arduous. Increased understanding of the experiences of this group and employing the identified facilitators for living well may be able to improve patient and caregiver experiences. Patient or Public Contribution: Two people with Parkinson's and cognitive impairment and three caregivers contributed to the study. Between them they contributed throughout the entirety of the project, giving input at conceptualisation as well as advice and review of interview questions, participant information leaflets, recruitment, interpretation of findings and summaries of the project. [ABSTRACT FROM AUTHOR]
- Abstract: Copyright of Health Expectations is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
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