PDF(Pubmed)
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.
OBJECTIVE: 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.
UNASSIGNED: 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.
OBJECTIVE: 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.
UNASSIGNED: 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.
摘要：
背景：认知损害在帕金森病中很常见，并且与较差的生活质量和增加的照顾者困扰有关，但是，关于帕金森病患者的生活经历的定性信息很少，这些人也有认知障碍。
目的：本研究的目的是探讨帕金森病患者认知损害的挑战。三角测量帕金森氏症患者的观点，护理人员和医疗保健专业人员。
方法：对11名帕金森病和认知障碍患者进行了半结构化访谈，10名家庭护理人员和27名医疗保健专业人员，使用英国的目的抽样(2019-2021年)。医疗保健专业人员发现认知障碍并需要主观症状。记录相关认知诊断。采访是录音的，使用反身性主题分析进行转录和分析。
结果：提出了认知和身体衰退复合影响的总体概念，有六个主题。四个主题描述了帕金森氏症患者认知障碍的生活经历：（1）日常活动中的挑战，（2）心理影响和（3）不断发展的沟通困难共同促成（4）社会转变，包括减少更广泛的社会活动，但加强亲密关系，增加依赖性。第五个主题（5）好好生活描述了对这些经历的积极影响，包含内在动机，自我管理策略和支持关系。此外，作为整个体验的基础和塑造是第六个主题：(6)对认知障碍的成见，描述恐惧和否认症状，以及对帕金森氏症认知障碍性质的理解不足，与其他痴呆症病理不同。
结论：认知损害叠加在帕金森氏症的现有挑战上具有多方面的影响，并使生活条件艰巨。增加对这一群体的经验的理解和使用确定的促进者生活良好可能能够改善患者和护理人员的经验。
■两名帕金森病和认知障碍患者以及三名看护者参与了这项研究。他们在整个项目中做出了贡献，在概念化以及面试问题的建议和审查方面给予投入，参与者信息传单，招募,解释项目的结果和摘要。
目的：本研究的目的是探讨帕金森病患者认知损害的挑战。三角测量帕金森氏症患者的观点，护理人员和医疗保健专业人员。
方法：对11名帕金森病和认知障碍患者进行了半结构化访谈，10名家庭护理人员和27名医疗保健专业人员，使用英国的目的抽样(2019-2021年)。医疗保健专业人员发现认知障碍并需要主观症状。记录相关认知诊断。采访是录音的，使用反身性主题分析进行转录和分析。
结果：提出了认知和身体衰退复合影响的总体概念，有六个主题。四个主题描述了帕金森氏症患者认知障碍的生活经历：（1）日常活动中的挑战，（2）心理影响和（3）不断发展的沟通困难共同促成（4）社会转变，包括减少更广泛的社会活动，但加强亲密关系，增加依赖性。第五个主题（5）好好生活描述了对这些经历的积极影响，包含内在动机，自我管理策略和支持关系。此外，作为整个体验的基础和塑造是第六个主题：(6)对认知障碍的成见，描述恐惧和否认症状，以及对帕金森氏症认知障碍性质的理解不足，与其他痴呆症病理不同。
结论：认知损害叠加在帕金森氏症的现有挑战上具有多方面的影响，并使生活条件艰巨。增加对这一群体的经验的理解和使用确定的促进者生活良好可能能够改善患者和护理人员的经验。
■两名帕金森病和认知障碍患者以及三名看护者参与了这项研究。他们在整个项目中做出了贡献，在概念化以及面试问题的建议和审查方面给予投入，参与者信息传单，招募,解释项目的结果和摘要。
