Compound impact of cognitive and physical decline: A qualitative interview study of people with Parkinson's and cognitive impairment, caregivers and professionals
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. Obje...
Saved in:
| Main Authors: | , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Wiley
2024-02-01
|
| Series: | Health Expectations |
| Subjects: | |
| Online Access: | https://doi.org/10.1111/hex.13950 |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1849227386148618240 |
|---|---|
| author | Jennifer S. Pigott Nathan Davies Elizabeth Chesterman Joy Read Danielle Nimmons Kate Walters Megan Armstrong Anette Schrag |
| author_facet | Jennifer S. Pigott Nathan Davies Elizabeth Chesterman Joy Read Danielle Nimmons Kate Walters Megan Armstrong Anette Schrag |
| author_sort | Jennifer S. Pigott |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-bdf0b2fce0374002b03bd86aa4a18e49 |
| institution | Kabale University |
| issn | 1369-6513 1369-7625 |
| language | English |
| publishDate | 2024-02-01 |
| publisher | Wiley |
| record_format | Article |
| series | Health Expectations |
| spelling | doaj-art-bdf0b2fce0374002b03bd86aa4a18e492025-08-23T11:53:04ZengWileyHealth Expectations1369-65131369-76252024-02-01271n/an/a10.1111/hex.13950Compound impact of cognitive and physical decline: A qualitative interview study of people with Parkinson's and cognitive impairment, caregivers and professionalsJennifer S. Pigott0Nathan Davies1Elizabeth Chesterman2Joy Read3Danielle Nimmons4Kate Walters5Megan Armstrong6Anette Schrag7Department of Clinical Neurosciences, Queen Square Institute of Neurology, University College London Royal Free Hospital London UKResearch Department of Primary Care and Population Health, Centre for Ageing Population Studies University College London London UKDepartment of Clinical Neurosciences, Queen Square Institute of Neurology, University College London Royal Free Hospital London UKDepartment of Clinical Neurosciences, Queen Square Institute of Neurology, University College London Royal Free Hospital London UKResearch Department of Primary Care and Population Health, Centre for Ageing Population Studies University College London London UKResearch Department of Primary Care and Population Health, Centre for Ageing Population Studies University College London London UKResearch Department of Primary Care and Population Health, Centre for Ageing Population Studies University College London London UKDepartment of Clinical Neurosciences, Queen Square Institute of Neurology, University College London Royal Free Hospital London UKAbstract 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.https://doi.org/10.1111/hex.13950cognitive impairmentlived experienceParkinson's diseaseParkinson's disease dementiaqualitative |
| spellingShingle | Jennifer S. Pigott Nathan Davies Elizabeth Chesterman Joy Read Danielle Nimmons Kate Walters Megan Armstrong Anette Schrag Compound impact of cognitive and physical decline: A qualitative interview study of people with Parkinson's and cognitive impairment, caregivers and professionals Health Expectations cognitive impairment lived experience Parkinson's disease Parkinson's disease dementia qualitative |
| title | Compound impact of cognitive and physical decline: A qualitative interview study of people with Parkinson's and cognitive impairment, caregivers and professionals |
| title_full | Compound impact of cognitive and physical decline: A qualitative interview study of people with Parkinson's and cognitive impairment, caregivers and professionals |
| title_fullStr | Compound impact of cognitive and physical decline: A qualitative interview study of people with Parkinson's and cognitive impairment, caregivers and professionals |
| title_full_unstemmed | Compound impact of cognitive and physical decline: A qualitative interview study of people with Parkinson's and cognitive impairment, caregivers and professionals |
| title_short | Compound impact of cognitive and physical decline: A qualitative interview study of people with Parkinson's and cognitive impairment, caregivers and professionals |
| title_sort | compound impact of cognitive and physical decline a qualitative interview study of people with parkinson s and cognitive impairment caregivers and professionals |
| topic | cognitive impairment lived experience Parkinson's disease Parkinson's disease dementia qualitative |
| url | https://doi.org/10.1111/hex.13950 |
| work_keys_str_mv | AT jenniferspigott compoundimpactofcognitiveandphysicaldeclineaqualitativeinterviewstudyofpeoplewithparkinsonsandcognitiveimpairmentcaregiversandprofessionals AT nathandavies compoundimpactofcognitiveandphysicaldeclineaqualitativeinterviewstudyofpeoplewithparkinsonsandcognitiveimpairmentcaregiversandprofessionals AT elizabethchesterman compoundimpactofcognitiveandphysicaldeclineaqualitativeinterviewstudyofpeoplewithparkinsonsandcognitiveimpairmentcaregiversandprofessionals AT joyread compoundimpactofcognitiveandphysicaldeclineaqualitativeinterviewstudyofpeoplewithparkinsonsandcognitiveimpairmentcaregiversandprofessionals AT daniellenimmons compoundimpactofcognitiveandphysicaldeclineaqualitativeinterviewstudyofpeoplewithparkinsonsandcognitiveimpairmentcaregiversandprofessionals AT katewalters compoundimpactofcognitiveandphysicaldeclineaqualitativeinterviewstudyofpeoplewithparkinsonsandcognitiveimpairmentcaregiversandprofessionals AT meganarmstrong compoundimpactofcognitiveandphysicaldeclineaqualitativeinterviewstudyofpeoplewithparkinsonsandcognitiveimpairmentcaregiversandprofessionals AT anetteschrag compoundimpactofcognitiveandphysicaldeclineaqualitativeinterviewstudyofpeoplewithparkinsonsandcognitiveimpairmentcaregiversandprofessionals |