The Care Needs of Patients With Cognitive Impairment in Late-Stage Parkinson's Disease.

BACKGROUND: Cognitive impairment is common in Parkinson's disease (PD), but care needs and resource use for those with significant cognitive impairment are not well established. METHODS: 675 participants with PD from the international Care of Late-Stage Parkinsonism (CLaSP) study were grouped into those without (n = 333, 49%) and with cognitive impairment (MMSE < 24/30 or diagnosis of dementia or Mild Cognitive Impairment; n = 342, 51%) and their clinical features, care needs and healthcare utilisation compared. The relationship between cognition and healthcare consultations was investigated through logistic regression. RESULTS: Cognitive impairment was associated with more motor and non-motor symptoms, less antiparkinsonian but higher rates of dementia and antipsychotic medication, worse subjective health status and greater caregiver burden. A considerable proportion did not have a pre-established cognitive diagnosis. Care needs were high across the whole sample but higher in the cognitive impairment group. Home care and care home use was higher in the cognitive impairment group. However, use of healthcare consultations was similar between the groups and significantly fewer participants with cognitive impairment had had recent PD Nurse consultations. Worse cognitive impairment was associated with lower frequency of recent PD nurse and multidisciplinary therapy consultation (physiotherapy, massage, occupational therapy, speech training and general nursing). CONCLUSIONS: Those with cognitive impairment have more severe PD, higher care needs and greater social care utilisation than those with normal cognition, yet use of health care services is similar or less. Cognitive impairment appears to be a barrier to PD nurse and multidisciplinary therapy consultations. This challenges current models of care: alternative models of care may be required to serve this population. PLAIN LANGUAGE SUMMARY: Parkinson's disease is a long-term progressive health condition. Over time, many people with Parkinson's develop problems with thinking and memory, called cognitive impairment. This can negatively impact the daily lives of the person with Parkinson's and their caregiver. It is also thought to be a barrier to accessing healthcare. How people with Parkinson's who have cognitive impairment use healthcare and detail of their care needs is not well known.We analysed data from a large sample of people with advanced Parkinson's from six European countries to investigate their symptoms, care needs and healthcare use. We compared those with cognitive impairment to (342 people) to those without cognitive impairment (333 people).We found that those with cognitive impairment had more severe Parkinson's across a range of symptoms compared to those without cognitive impairment. They also had more care needs, reported their health status to be worse, and their caregivers experienced greater strain from caring. Whilst use of other healthcare services was similar between the two groups, those with cognitive impairment were less likely to have recently seen a Parkinson's nurse than those without cognitive impairment. Further analysis showed an association between cognitive impairment and not having seen a Parkinson's nurse or therapist recently, taking psychiatric symptoms, functional disability and care home residence into account. Therapists included were physiotherapy, massage, occupational therapy, speech training and general nursing. These findings highlight unmet need. We suggest that healthcare should be more targeted to help this group of people, given their higher care needs.

Factors associated with self-rated health in people with late-stage parkinson's and cognitive impairment.

PURPOSE: To investigate the contributors to self-rated health in people with late-stage Parkinson's disease (PD) and cognitive impairment. METHODS: A secondary analysis of baseline data from the international Care of Late-Stage Parkinsonism (CLaSP) cohort study was conducted. Participants with PD and either dementia or mild cognitive impairment or MMSE < 24/30 in the absence of major depression were included if they had completed the EQ-5D-3L assessment (n = 277). Factors associated with self-rated health (EQ-5D-3L Index and Visual Analogue Scale) were investigated through multivariable linear regression. RESULTS: More severe PD (motor and non-motor) was associated with worse self-rated health. The EQ-5D-3L dimensions of Mobility, Self-Care and Usual Activities were almost universally affected; the latter two particularly severely. Being unable to perform usual activities or having moderate to extreme anxiety or depression were significantly associated with EQ-5D-3L Visual Analogue Scale, suggesting these are particularly valued. Worse motor impairment and function and the non-motor symptom domains of mood, perception, sexual function, and miscellaneous (e.g., pain) were associated with worse self-rated health, whereas greater burden of gastrointestinal symptoms was associated with better self-rated health in multivariate analysis. Better self-rated health was associated with recent PD nurse consultation, and higher doses of dopaminergic medication. CONCLUSION: Improvement of activities of daily living, mood and anxiety should be prioritised in clinical practice, with consideration of perception and sexual function in this population. Recent nurse consultations and higher antiparkinsonian doses are associated with better self-rated health, suggesting there is no room for a therapeutic nihilism in this population of people within a complex phase of PD.

Intervention components in the self-management of Parkinson's: a mixed-methods synthesis of qualitative and quantitative evidence.

INTRODUCTION: Self-management interventions consist of multiple components to support people in the management of medical, emotional, and behavioural aspects of their condition, and aim to improve quality of life, function, and other outcomes. A systematic review of self-management interventions in Parkinson's showed no conclusive evidence for effectiveness of specific self-management approaches in Parkinson's to date but identified several potentially useful components. AIM: To identify the key required components for self-management in people with Parkinson's by synthesising evidence from a body of primary qualitative evidence and systematic reviews, and to explore which of these key components should be incorporated into trials of self-management in Parkinson's. METHOD: A mixed-methods synthesis was conducted. We combined data from two primary qualitative studies and a systematic review of qualitative studies that focused on self-management in Parkinson's to identify key intervention components. These were then mapped onto the results of a systematic review of Randomised Controlled Trials (RCTs) using matrices. First, data were extracted from the qualitative studies with people with Parkinson's and healthcare professionals on the key self-management components in this population. Second, a matrix table was created to map the identified Parkinson's specific self-management components against potential effectiveness from published RCTs of self-management interventions. RESULTS: Synthesis of qualitative data identified 15 potential self-management components. These 15 components included components needed to start self-managing (e.g., information, skill acquirement) and components needed to maintain self-managing (e.g., self-motoring, increasing motivation). From 18 RCTs, interventions varied in how many components were included (range 1-10). Trials reporting significant beneficial effects of their intervention included a higher number of components (4 or more self-management components) than trials without significant findings (1-3 self-management components). CONCLUSION: Fifteen key self-management components were identified that should be incorporated into interventions or programs of self-management in Parkinson's. No current trial has incorporated all aspects, but a higher number of these key components appears to make trials of self-management interventions more likely to be successful.

Systematic review and meta-analysis of clinical effectiveness of self-management interventions in Parkinson's disease.

BACKGROUND: Parkinson's disease is a complex neurodegenerative condition with significant impact on quality of life (QoL), wellbeing and function. The objective of this review is to evaluate the clinical effectiveness of self-management interventions for people with Parkinson's disease, taking a broad view of self-management and considering effects on QoL, wellbeing and function. METHODS: Systematic searches of four databases (MEDLINE, Embase, PsycINFO, Web of Science) were conducted for studies evaluating self-management interventions for people with Parkinson's disease published up to 16th November 2020. Original quantitative studies of adults with idiopathic Parkinson's disease were included, whilst studies of atypical Parkinsonism were excluded. Full-text articles were independently assessed by two reviewers, with data extracted by one reviewer and reliability checked by a second reviewer, then synthesised through a narrative approach and, for sufficiently similar studies, a meta-analysis of effect size was conducted (using a random-effects meta-analysis with restricted maximum likelihood method pooled estimate). Interventions were subdivided into self-management components according to PRISMS Taxonomy. Risk of bias was examined with the Cochrane Risk of Bias 2 (RoB2) tool or ROBIN-I tool as appropriate. RESULTS: Thirty-six studies were included, evaluating a diverse array of interventions and encompassing a range of study designs (RCT n = 19; non-randomised CT n = five; within subject pre- and post-intervention comparisons n = 12). A total of 2884 participants were assessed in studies across ten countries, with greatest output from North America (14 studies) and UK (six studies). Risk of bias was moderate to high for the majority of studies, mostly due to lack of participant blinding, which is not often practical for interventions of this nature. Only four studies reported statistically significant improvements in QoL, wellbeing or functional outcomes for the intervention compared to controls. These interventions were group-based self-management education and training programmes, either alone, combined with multi-disciplinary rehabilitation, or combined with Cognitive Behaviour Therapy; and a self-guided community-based exercise programme. Four of the RCTs evaluated sufficiently similar interventions and outcomes for meta-analysis: these were studies of self-management education and training programmes evaluating QoL (n = 478). Meta-analysis demonstrated no significant difference between the self-management and the control groups with a standardised mean difference (Hedges g) of - 0.17 (- 0.56, 0.21) p = 0.38. By the GRADE approach, the quality of this evidence was deemed "very low" and the effect of the intervention is therefore uncertain. Components more frequently observed in effective interventions, as per PRISMS taxonomy analysis, were: information about resources; training or rehearsing psychological strategies; social support; and lifestyle advice and support. The applicability of these findings is weakened by the ambiguous and at times overlapping nature of self-management components. CONCLUSION: Approaches and outcomes to self-management interventions in Parkinson's disease are heterogenous. There are insufficient high quality RCTs in this field to show effectiveness of self-management interventions in Parkinson's disease. Whilst it is not possible to draw conclusions on specific intervention components that convey effectiveness, there are promising findings from some studies, which could be targeted in future evaluations.

Health care professionals' perspectives on self-management for people with Parkinson's: qualitative findings from a UK study.

BACKGROUND: Parkinson's disease is a long-term, complex health condition. To improve or maintain quality of life, people with Parkinson's can have an active involvement in their care through self-management techniques. Given the complexity and individualization of self-management, people with Parkinson's will need support and encouragement from their healthcare professionals (HCPs). Despite the key role HCPs have in this, research has seldom explored their perspectives and understanding of self-management for people with Parkinson's. METHODS: Multi-disciplinary teams providing care for people with Parkinson's across London, Coventry and Hertfordshire were approached and took part in either one of four focus groups or individual interviews. Forty-two HCPs, including a range of specialist doctors, general practitioners, allied health professionals, nurses, and social workers, took part in this study. Interviews were transcribed and analysed using thematic analysis to identify themes. RESULTS: Four themes were developed from the data: 1) Empowerment of patients through holistic care and being person-centred; 2) Maximising motivation and capability for patients, for example using asset based approaches and increasing opportunities; 3) importance of empowerment of carers to support self-management and 4) contextual barriers to self-management such as the social context. CONCLUSIONS: This study is the first to explore the perspectives of HCPs on self-management in people with Parkinson's. Our findings have identified important considerations surrounding empowerment, motivation, carers and contextual barriers to better understand how we enable effective self-management techniques in people with Parkinson's. Research should build on these findings on to develop acceptable and effective self-management tools for use in practice with people affected by Parkinson's.

Delivering Optimal Care to People with Cognitive Impairment in Parkinson's Disease: A Qualitative Study of Patient, Caregiver, and Professional Perspectives.

Background: Cognitive impairment is common in Parkinson's disease (PD) and associated with lower quality of life. Cognitive impairment in PD manifests differently to other dementia pathologies. Provision of optimal care requires knowledge about the support needs of this population. Methods: Eleven people with PD and cognitive impairment (PwP), 10 family caregivers, and 27 healthcare professionals were purposively sampled from across the United Kingdom. Semistructured interviews were conducted in 2019-2021, audio-recorded, transcribed, and analysed using reflexive thematic analysis. Results: Cognitive impairment in PD conveyed increased complexity for clinical management and healthcare interactions, the latter driven by multifactorial communication difficulties. Techniques that helped included slow, simple, and single messages, avoiding topic switching. Information and emotional support needs were often unmet, particularly for caregivers. Diagnostic pathways were inconsistent and awareness of cognitive impairment in PD was poor, both contributing to underdiagnosis. Many felt that PwP and cognitive impairment fell through service gaps, resulting from disjointed, nonspecific, and underresourced services. Personalised care was advocated through tailoring to individual needs of PwP and caregivers facilitated by flexibility, time and continuity within services, and supporting self-management. Conclusions: This study highlights unmet need for people with this complex condition. Clinicians should adapt their approach and communication techniques for this population and provide tailored information and support to both PwP and caregivers. Services need to be more streamlined and collaborative, providing more time and flexibility. There is a need for wider awareness and deeper understanding of this condition and its differences from other types of dementia.

People with Parkinson's perspectives and experiences of self-management: Qualitative findings from a UK study.

INTRODUCTION: Parkinson's prevalence is growing, and more people are being impacted by the condition than ever before. Self-management has been proposed as one way to enable people living with the condition to improve or maintain their quality of life and wellbeing whilst living at home. AIM: To explore the views and experiences of how people living with Parkinson's self-manage their condition and identify areas needed to be incorporated into self-management resources or interventions. METHOD: Twenty people with Parkinson's from across London and Hertfordshire, UK took part in semi-structured interviews on self-management. Interviews were transcribed and analysed using thematic analysis to identify themes. RESULTS: Three main themes were identified: (1) Management of physical symptoms, which included engaging in physical activities, adapting their lifestyles, managing medication and using e-health resources; (2) Management of emotional impact, which involved using a range of cognitive and practical strategies, and seeking talking therapies and medication; and (3) barriers to self-management such as accessing accurate information, experiencing stigma towards their condition which impacted their self-esteem and identity, in turn impacting on their ability to self-manage. CONCLUSION: Holistic and person-centred self-management programmes or interventions should be developed incorporating components such as medication and emotional support, individualised planning of exercise regimes, and accessible, timely and accurate information. Furthermore, more public health knowledge on Parkinson's is needed to help reduce stigma.

Exploring the experiences of people and family carers from under-represented groups in self-managing Parkinson's disease and their use of digital health to do this.

Introduction: Digital health is thought to enable people to better manage chronic conditions, such as Parkinson's. However, little is known about how people from under-represented groups with chronic conditions use digital health to self-manage. Objective: The objective of our study was to explore the experiences of people and family carers from under-represented groups in self-managing Parkinson's, including their use of digital health to do this. Methods: Semi-structured interviews (n = 18, including four dyadic) were conducted remotely, with 16 people with Parkinson's and six family carers in 2020-2021. Participants were purposively sampled from under-represented groups: belong to an ethnic minority, or having significant physical or sensory impairment. Interviews were audio-recorded, transcribed and analysed using thematic analysis. Results: Three main themes of importance were developed: 'self-management support', 'digital health use to support self-management' and 'identity, attitudes and characteristics'. Participants received medical, psychological, social and practical self-management support. Some participants used digital health resources, e.g., Parkinson's UK website. Digital literacy was the biggest barrier to using digital health, regardless of background, often dependant on previous occupation and confidence. Few ethnic minority participants thought race or culture alters self-management ability and most believed there was no need for digital health interventions to be tailored to an individual's race or culture. Some felt inclusivity was important in terms of diverse images of people. A range of considerations were identified to optimise digital health, such as assistive equipment for people with sensory impairment. Conclusions: Barriers to using digital health for self-management were primarily dependent on personal factors including digital literacy and attitudes but rarely race or culture. We recommend the optimisation of digital health interventions by providing assistive technology at low cost, and visual inclusiveness should be promoted by including images of people from diverse backgrounds.

Transitions and challenges for people with Parkinson's and their family members: A qualitative study.

OBJECTIVE: To explore the experiences and challenges of people with Parkinson's and their family members living in the community through the lens of their transitions to better understand the phases and changes in their lives. DESIGN: Qualitative study using semi-structured interviews and analysed using codebook thematic analysis. SETTING/PARTICIPANTS: Purposive sampling was used in primary and secondary healthcare services across Southern England in 2019 to recruit 21 people with Parkinson's (aged between 45-89 years) and 17 family members (13 spouses and 4 adult children, aged between 26-79 years). RESULTS: Participants' descriptions were classified in three main phases of transition from a place of health towards greater dependency on others: 1) 'Being told you are a person with Parkinson's' (early), 2) 'Living with Parkinson's' (mid), and 3) 'Increasing dependency' (decline). Seven sub-themes were identified to describe the transitions within these three phases: phase 1: receiving and accepting a diagnosis; navigating reactions; phase 2: changing social interactions and maintaining sense of self; information: wanting to know but not wanting to know; finding a place within the healthcare system; and 3: changes in roles and relationships; and increasingly dependent. CONCLUSION: This study has identified points of change and means of supporting key transitions such as diagnosis, changes in social connections, and increased use of secondary healthcare services so that comprehensive, holistic, individualised and well-timed support can be put in place to maintain well-being.

Ketamine administration in healthy volunteers reproduces aberrant agency experiences associated with schizophrenia.

INTRODUCTION: Aberrant experience of agency is characteristic of schizophrenia. An understanding of the neurobiological basis of such experience is therefore of considerable importance for developing successful models of the disease. We aimed to characterise the effects of ketamine, a drug model for psychosis, on sense of agency (SoA). SoA is associated with a subjective compression of the temporal interval between an action and its effects: This is known as "intentional binding". This action-effect binding provides an indirect measure of SoA. Previous research has found that the magnitude of binding is exaggerated in patients with schizophrenia. We therefore investigated whether ketamine administration to otherwise healthy adults induced a similar pattern of binding. METHODS: 14 right-handed healthy participants (8 female; mean age 22.4 years) were given low-dose ketamine (100 ng/mL plasma) and completed the binding task. They also underwent structured clinical interviews. RESULTS: Ketamine mimicked the performance of schizophrenia patients on the intentional binding task, significantly increasing binding relative to placebo. The size of this effect also correlated with aberrant bodily experiences engendered by the drug. CONCLUSIONS: These data suggest that ketamine may be able to mimic certain aberrant agency experiences that characterise schizophrenia. The link to individual changes in bodily experience suggests that the fundamental change produced by the drug has wider consequences in terms of individuals' experiences of their bodies and movements.

Self-Management Components as Experienced by People with Parkinson's Disease and Their Carers: A Systematic Review and Synthesis of the Qualitative Literature.

BACKGROUND: Self-management strategies are important in healthcare for people with Parkinson's to improve daily living. There is limited evidence on effectiveness in Parkinson's, and the active components of effective self-management strategies are uncertain. This review aims to identify and synthesise the qualitative evidence regarding the experiences of self-management components by people with Parkinson's and their carers. METHODS: MEDLINE, PsycINFO, Embase, Web of Science, and CINAHL were searched from inception to July 8, 2020, for qualitative research concerning self-management for people with Parkinson's. Data were coded and thematically synthesised using NVivo. Findings. Of 9547 search results, six papers were included in the final thematic synthesis. The studies reviewed consisted of 147 participants: 104 were people with Parkinson's and 43 were carers. Seven main themes were derived concerning self-management of people with Parkinson's: (1) medication management, (2) physical exercise, (3) self-monitoring techniques, (4) psychological strategies, (5) maintaining independence, (6) encouraging social engagement, and (7) providing knowledge and information. These components should be incorporated as relevant strategies and techniques and should be specific as well as tailored to different stages of the disease. Discussion. Self-management programmes for people with Parkinson's should include the seven themes presented as part of this review and pay particular attention to presenting relevant information and skills as they relate to different stages of the disease. Tailoring information and social engagement were two components that required specific attention in order to engage people with Parkinson's effectively.

Exploring the impact of ketamine on the experience of illusory body ownership.

BACKGROUND: Our sense of body ownership is profound and familiar, yet it may be misleading. In the rubber-hand illusion, synchronous tactile and visual stimulation lead to the experience that a rubber hand is actually one's own. This illusion is stronger in schizophrenia. Given the evidence that ketamine, a noncompetitive N-methyl-D-aspartate antagonist reproduces symptoms of schizophrenia, we sought to determine whether the rubber-hand illusion is augmented by ketamine. METHODS: We studied 15 healthy volunteers in a within-subjects placebo-controlled study. All volunteers carried out two versions of the rubber-hand task, each under both placebo and ketamine infusions. In one task, they saw a rubber hand being stroked in synchrony with tactile stimulation of their real, hidden hand. In the other, stroking of the real and rubber hands was asynchronous. We recorded subjective changes in sense of ownership, as well as participants' ability to localize their hidden hand. RESULTS: Ketamine was associated with significant increases in subjective measures of the illusion and in hand mislocalization. Although asynchronous visuotactile stimulation attenuates the strength of the illusion during both placebo and ketamine, there remained a significant illusory effect during asynchronous visuotactile stimulation under ketamine compared with placebo. The strength of the illusion during asynchronous visuotactile stimulation correlated with other subjective effects of the drug. CONCLUSIONS: Ketamine mimics the perturbed sense of body ownership seen in schizophrenia, suggesting that it produces a comparable alteration in integration of information across sensory domains and in the subjective and behavioral consequences of such integration.

Illusions and delusions: relating experimentally-induced false memories to anomalous experiences and ideas.

The salience hypothesis of psychosis rests on a simple but profound observation that subtle alterations in the way that we perceive and experience stimuli have important consequences for how important these stimuli become for us, how much they draw our attention, how they embed themselves in our memory and, ultimately, how they shape our beliefs. We put forward the idea that a classical memory illusion - the Deese-Roediger-McDermott (DRM) effect - offers a useful way of exploring processes related to such aberrant belief formation. The illusion occurs when, as a consequence of its relationship to previous stimuli, a stimulus that has not previously been presented is falsely remembered. Such illusory familiarity is thought to be generated by the surprising fluency with which the stimulus is processed. In this respect, the illusion relates directly to the salience hypothesis and may share common cognitive underpinnings with aberrations of perception and attribution that are found in psychosis. In this paper, we explore the theoretical importance of this experimentally-induced illusion in relation to the salience model of psychosis. We present data showing that, in healthy volunteers, the illusion relates directly to self reported anomalies of experience and magical thinking. We discuss this finding in terms of the salience hypothesis and of a broader Bayesian framework of perception and cognition which emphasizes the salience both of predictable and unpredictable experiences.