ArticleHealth expectations : an international journal of public participation in health care and health policy2024
Compound impact of cognitive and physical decline: A qualitative interview study of people with Parkinson's and cognitive impairment, caregivers and professionals.
Article in Health expectations : an international journal of public participation in health care and health policy, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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Who cites it
6 citing papers in PubMed.
- Barriers and enablers to cognitive assessment in Parkinson's disease: A qualitative contextual inquiry.Journal of Parkinson's disease · 2026Article
- Recommendations to Improve Healthcare Service Provision for Cognitive Impairment in People With Parkinson's Disease: A Mixed Methods Study of the Lived Experience Expert Perspective.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Challenges, knowledge, and skills required for family caregivers of older adults with dementia: a qualitative study in Vietnam.Global health action · 2025Article
- A scoping review and comprehensive needs assessment for developing an intergenerational cognitive and physical activity program for MCI patients and their adult children.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- Compound impact of cognitive and physical decline: A qualitative interview study of people with Parkinson's and cognitive impairment, caregivers and professionals.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- What can we do to enhance cognitive care in Parkinson's disease?Alzheimer's & dementia (Amsterdam, Netherlands)Article
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Authors and funding
8 authors.
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Abstract
backgroundCognitive 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.
objectivesThe 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.
methodsSemistructured 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.
resultsAn 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.
conclusionsCognitive 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.
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