Experiences of People Living with Parkinson's Disease in Care Homes: A Qualitative Systematic Review.

BACKGROUND: Incidence of disability secondary to Parkinson's disease is increasing faster globally than any other neurological condition. The diverse appearance of symptomatology associated with Parkinson's, and the degenerative nature and subsequent functional decline, often increase dependence on caregivers for assistance with daily living, most commonly within a care home setting. Yet, primary literature and evidence synthesis surrounding these unique and complex care needs, challenges and the lived experiences of this population living in long-term nursing or residential facilities remains sparce. The aim of this review is to synthesize qualitative literature about the lived experience of people with Parkinson's disease living in care home settings. METHODS: A systematic search of the literature was conducted in October 2023 across six different databases (CINAHL, Medline, EMBASE, PsycINFO, Scopus and Cochrane Library). The Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) was used to guide this review. RESULTS: Five articles met the inclusion criteria. Four themes were identified following evidence synthesis: (1) Unique pharmacological challenges. (2) Transitioning and adapting to care home life and routines. (3) Dignified care within care homes. (4) Multidisciplinary care vacuum in care homes. CONCLUSION: This review revealed the significant and unique challenges for people with Parkinson's disease when transitioning into care homes. These are exacerbated by wider social care challenges such as staffing levels, skill mixes and attitudes as well as a lack of disease-specific knowledge surrounding symptomatology and pharmacology. The lack of multi-disciplinary working and risk-adverse practice inhibited person-centred care and autonomy and reduced the quality of life of people living with Parkinson's disease in care homes. Recommendations for practice highlight training gaps, the need for consistent and improved interdisciplinary working and better person-centred assessment and care delivery.

Exploring public perceptions and awareness of Parkinson's disease: A scoping review.

BACKGROUND: Parkinson's disease (PD) is a common neurological disease affecting around 1% of people above sixty years old. It is characterised by both motor and non-motor symptoms including tremor, slow movement, unsteady gait, constipation and urinary incontinence. As the disease progresses, individuals living with the disease are likely to lose their independence and autonomy, subsequently affecting their quality of life. People with PD should be supported to live well within their communities but there has been limited research regarding what the public know about PD. This review aims to develop an understanding of how the public view people living with PD, which has the potential to aid the development of an educational resource for the future to improve public awareness and understanding of PD. The purpose of this scoping review is to review and synthesise the literature on the public perception and attitudes towards people living with PD and identify and describe key findings. AIM: This scoping review aims to explore public perceptions and awareness of Parkinson's Disease among diverse populations, encompassing beliefs, knowledge, attitudes, and the broader societal context influencing these perceptions. METHODS: A scoping review of the literature was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-analysis extension for ScR (PRISMA-ScR). Four electronic databases were searched systematically (CINAHL Plus, Medline, PsycINFO and International Bibliography of the Social Sciences). The Joanna Briggs Institute Critical Appraisal Tools (JBI) were used to assess the quality of primary studies, however, all relevant studies were considered regardless of their methodological quality. The 'Population-Concept-Context' framework was used in the screening process to identify eligible papers. RESULTS: A total of 23 studies were included in the review representing global research in quantitative (n = 12) and mixed methods approaches (n = 11). All 23 studies adopted some aspect of cross-sectional design. Three themes emerged from the studies, the first being public knowledge of symptoms, causes and treatment of PD and this highlighted a lack of understanding about the disease. Secondly, the review identified public attitudes towards PD, highlighting the social consequences of the disease, including the association between PD and depression, isolation and loss of independence. Finally, the third theme highlighted that there was a paucity of educational resources available to help increase public understanding of PD. CONCLUSION: Findings from this scoping review have indicated that public awareness of PD is a growing area of interest. To our knowledge, this is the first scoping review on this topic and review findings have indicated that public knowledge and attitudes towards PD vary internationally. The implications of this are that people with PD are more likely to be a marginalised group within their communities. Future research should focus on understanding the perception of the public from the perspective of people with PD, the development of interventions and awareness campaigns to promote public knowledge and attitude and further high-quality research to gauge public perceptions of PD.

Evaluating the effects of dance on motor outcomes, non-motor outcomes, and quality of life in people living with Parkinson's: a feasibility study.

BACKGROUND: Community-based dance programs for people living with Parkinson's have grown in popularity over the past two decades. Studies investigating these programs have demonstrated multidimensional benefits in motor, non-motor, and quality of life related outcomes, yet there is a need to focus on the feasibility of larger trials. The primary objective of this study was to assess the feasibility and acceptability of conducting a trial investigating dance and Parkinson's in Northern Ireland. The secondary objectives were to conduct preliminary analyses of the classes' effects and to assess the appropriateness of outcome measures for a randomized controlled trial. METHODS: Participants were recruited through the community, Parkinson's UK, and university contacts to participate in a 12-week dance intervention inspired by the Dance for PD® model. Pre- and post-intervention, participants completed the following outcomes: MDS-UPDRS III, TUG, DT-TUG, Sensory Organization Test, MoCA, Trail Making Tests A&B, Digit Symbol Substitution Test, Digit Span, PDQ-39, FOG-Q, PHQ-9, FES-I, and an exit questionnaire (post-test only). Data were analyzed using paired samples t tests or Wilcoxon signed ranked test. RESULTS: Ten people living with Parkinson's participated. Running a larger trial was deemed infeasible in this setting due to recruitment issues; conversely, the dance intervention was accepted by participants with all but one completing the study. Functional mobility (TUG), symptoms of depression (PHQ-9), and bodily discomfort showed improvement. All other outcomes did not. The exit questionnaire revealed that the social aspect of classes was important, and improvements in mood or mental state were cited most frequently as perceived benefits. Outcome measures were feasible, with some changes suggested for future trials. CONCLUSIONS: This study highlighted the infeasibility of running a larger trial using this design in this setting despite demonstrating the acceptability of implementing a dance program in Northern Ireland for people living with Parkinson's. The results support existing evidence demonstrating that dance may improve functional mobility and symptoms of depression in people living with Parkinson's, though the study design and small sample size prevent the generalizability of results. The findings also support the idea that dancing has the potential to support several aspects of physical, emotional, mental, and social health.

Developmental differences across the lifespan in the use of perceptual information to guide action-based decisions.

Perceptual information about unfolding events is important for guiding decisions about when and how to move in real-world action situations. As an exemplary case, road-crossing is a perceptual-motor task where age has been shown to be a strong predictor of risk due to errors in action-based decisions. The present study investigated age differences between three age groups (Children: 10-12 years old; Adults: 19-39 years old; Older Adults: 65 + year olds) in the use of perceptual information for selection, timing, and control of action when crossing a two-way street in an immersive, interactive virtual reality environment. Adults and children selected gaps to cross that were consistent with the use of a time-based information variable (tau), whereas older adults tuned less into the time-based variable (tau) to guide road-crossing decisions. For action initiation and control, children and adults also showed a strong ability to precisely time their entry with respect to the lead vehicle maximising the available time to cross and coordinating walking movements with the tail vehicle to ensure they were not on a collision course. In contrast, older adults delayed action initiation and showed difficulty coordinating self-movement with the approaching vehicle. This study and its results tie together age-based differences in the three components of action decision-making (selection, timing and control) within a unified framework based on perceptual information. The implications of these age-related differences in action decisions and crossing behaviours are discussed in the context of road safety.

The Limitations of Being a Copycat: Learning Golf Putting Through Auditory and Visual Guidance.

The goal of this study was to investigate whether sensory cues carrying the kinematic template of expert performance (produced by mapping movement to a sound or visual cue) displayed prior to and during movement execution can enhance motor learning of a new skill (golf putting) in a group of novices. We conducted a motor learning study on a sample of 30 participants who were divided into three groups: a control, an auditory guide and visual guide group. The learning phase comprised of two sessions per week over a period of 4 weeks, giving rise to eight sessions. In each session participants made 20 shots to three different putting distances. All participants had their measurements taken at separate sessions without any guidance: baseline, transfer (different distances) and retention 2 weeks later. Results revealed a subtle improvement in goal attainment and a decrease in kinematic variability in the sensory groups (auditory and visual) compared to the control group. The comparable changes in performance between the visual and auditory guide groups, particularly during training, supports the idea that temporal patterns relevant to motor control can be perceived similarly through either visual or auditory modalities. This opens up the use of auditory displays to inform motor learning in tasks or situations where visual attention is otherwise constrained or unsuitable. Further research into the most useful template actions to display to learners may thus still support effective auditory guidance in motor learning.

Sensory substitution: Using a vibrotactile device to orient and walk to targets.

This study investigates how active exploration helps users of sensory substitution devices (SSDs) to detect action-relevant information. A vibrotactile SSD was developed that generates stimulation that is contingent on the users' movements. Target direction was specified by the location of the vibratory stimulation, and target distance by the size and intensity of the pattern of stimulation. A series of experiments was performed with blindfolded participants. In Experiments 1a to 1c, participants used the SSD to align their central body axis with prespecified targets. These experiments differed in the number of actuators that were used and whether online perception-action coupling was present. In Experiment 2, participants approached targets with forward locomotion along a straight line. Experiment 3 combined the previous experiments and studied the concomitant walking and steering toward targets. Oscillatory movements, which facilitated information pickup, were observed in all experiments. The exploratory oscillations were shown to depend on the online perception-action coupling and were related to cases of hyperacuity, for which absolute errors were found to be smaller than the areas of sensitivity of the actuators. It is concluded that, to improve the utility of SSDs, future research with SSDs should pay more attention to the role of active information detection. (PsycINFO Database Record

Expert players accurately detect an opponent's movement intentions through sound alone.

Sounds offer a rich source of information about events taking place in our physical and social environment. However, outside the domains of speech and music, little is known about whether humans can recognize and act upon the intentions of another agent's actions detected through auditory information alone. In this study we assessed whether intention can be inferred from the sound an action makes, and in turn, whether this information can be used to prospectively guide movement. In 2 experiments experienced and novice basketball players had to virtually intercept an attacker by listening to audio recordings of that player's movements. In the first experiment participants had to move a slider, while in the second one their body, to block the perceived passage of the attacker as they would in a real basketball game. Combinations of deceptive and nondeceptive movements were used to see if novice and/or experienced listeners could perceive the attacker's intentions through sound alone. We showed that basketball players were able to more accurately predict final running direction compared to nonplayers, particularly in the second experiment when the interceptive action was more basketball specific. We suggest that athletes present better action anticipation by being able to pick up and use the relevant kinematic features of deceptive movement from event-related sounds alone. This result suggests that action intention can be perceived through the sound a movement makes and that the ability to determine another person's action intention from the information conveyed through sound is honed through practice. (PsycINFO Database Record

Transposing musical skill: sonification of movement as concurrent augmented feedback enhances learning in a bimanual task.

Concurrent feedback provided during acquisition can enhance performance of novel tasks. The 'guidance hypothesis' predicts that feedback provision leads to dependence and poor performance in its absence. However, appropriately structured feedback information provided through sound ('sonification') may not be subject to this effect. We test this directly using a rhythmic bimanual shape-tracing task in which participants learned to move at a 4:3 timing ratio. Sonification of movement and demonstration was compared to two other learning conditions: (1) Sonification of task demonstration alone and (2) completely silent practice (control). Sonification of movement emerged as the most effective form of practice, reaching significantly lower error scores than control. Sonification of solely the demonstration, which was expected to benefit participants by perceptually unifying task requirements, did not lead to better performance than control. Good performance was maintained by participants in the Sonification condition in an immediate retention test without feedback, indicating that the use of this feedback can overcome the guidance effect. On a 24-h retention test, performance had declined and was equal between groups. We argue that this and similar findings in the feedback literature are best explained by an ecological approach to motor skill learning which places available perceptual information at the highest level of importance.

Movement and perceptual strategies to intercept virtual sound sources.

To intercept a moving object, one needs to be in the right place at the right time. In order to do this, it is necessary to pick up and use perceptual information that specifies the time to arrival of an object at an interception point. In the present study, we examined the ability to intercept a laterally moving virtual sound object by controlling the displacement of a sliding handle and tested whether and how the interaural time difference (ITD) could be the main source of perceptual information for successfully intercepting the virtual object. The results revealed that in order to accomplish the task, one might need to vary the duration of the movement, control the hand velocity and time to reach the peak velocity (speed coupling), while the adjustment of movement initiation did not facilitate performance. Furthermore, the overall performance was more successful when subjects employed a time-to-contact (tau) coupling strategy. This result shows that prospective information is available in sound for guiding goal-directed actions.

Refreshing Refreshable Braille Displays.

The increased access to books afforded to blind people via e-publishing has given them long-sought independence for both recreational and educational reading. In most cases, blind readers access materials using speech output. For some content such as highly technical texts, music, and graphics, speech is not an appropriate access modality as it does not promote deep understanding. Therefore blind braille readers often prefer electronic braille displays. But, these are prohibitively expensive. The search is on, therefore, for a low-cost refreshable display that would go beyond current technologies and deliver graphical content as well as text. And many solutions have been proposed, some of which reduce costs by restricting the number of characters that can be displayed, even down to a single braille cell. In this paper, we demonstrate that restricting tactile cues during braille reading leads to poorer performance in a letter recognition task. In particular, we show that lack of sliding contact between the fingertip and the braille reading surface results in more errors and that the number of errors increases as a function of presentation speed. These findings suggest that single cell displays which do not incorporate sliding contact are likely to be less effective for braille reading.

(Dis-)Harmony in movement: effects of musical dissonance on movement timing and form.

While the origins of consonance and dissonance in terms of acoustics, psychoacoustics and physiology have been debated for centuries, their plausible effects on movement synchronization have largely been ignored. The present study aimed to address this by investigating whether, and if so how, consonant/dissonant pitch intervals affect the spatiotemporal properties of regular reciprocal aiming movements. We compared movements synchronized either to consonant or to dissonant sounds and showed that they were differentially influenced by the degree of consonance of the sound presented. Interestingly, the difference was present after the sound stimulus was removed. In this case, the performance measured after consonant sound exposure was found to be more stable and accurate, with a higher percentage of information/movement coupling (tau coupling) and a higher degree of movement circularity when compared to performance measured after the exposure to dissonant sounds. We infer that the neural resonance representing consonant tones leads to finer perception/action coupling which in turn may help explain the prevailing preference for these types of tones.

Auditory observation of stepping actions can cue both spatial and temporal components of gait in Parkinson׳s disease patients.

OBJECTIVES: A common behavioural symptom of Parkinson׳s disease (PD) is reduced step length (SL). Whilst sensory cueing strategies can be effective in increasing SL and reducing gait variability, current cueing strategies conveying spatial or temporal information are generally confined to the use of either visual or auditory cue modalities, respectively. We describe a novel cueing strategy using ecologically-valid 'action-related' sounds (footsteps on gravel) that convey both spatial and temporal parameters of a specific action within a single cue. METHODS: The current study used a real-time imitation task to examine whether PD affects the ability to re-enact changes in spatial characteristics of stepping actions, based solely on auditory information. In a second experimental session, these procedures were repeated using synthesized sounds derived from recordings of the kinetic interactions between the foot and walking surface. A third experimental session examined whether adaptations observed when participants walked to action-sounds were preserved when participants imagined either real recorded or synthesized sounds. RESULTS: Whilst healthy control participants were able to re-enact significant changes in SL in all cue conditions, these adaptations, in conjunction with reduced variability of SL were only observed in the PD group when walking to, or imagining the recorded sounds. CONCLUSIONS: The findings show that while recordings of stepping sounds convey action information to allow PD patients to re-enact and imagine spatial characteristics of gait, synthesis of sounds purely from gait kinetics is insufficient to evoke similar changes in behaviour, perhaps indicating that PD patients have a higher threshold to cue sensorimotor resonant responses.

Synthesis of walking sounds for alleviating gait disturbances in Parkinson's disease.

Managing gait disturbances in people with Parkinson's disease is a pressing challenge, as symptoms can contribute to injury and morbidity through an increased risk of falls. While drug-based interventions have limited efficacy in alleviating gait impairments, certain nonpharmacological methods, such as cueing, can also induce transient improvements to gait. The approach adopted here is to use computationally-generated sounds to help guide and improve walking actions. The first method described uses recordings of force data taken from the steps of a healthy adult which in turn were used to synthesize realistic gravel-footstep sounds that represented different spatio-temporal parameters of gait, such as step duration and step length. The second method described involves a novel method of sonifying, in real time, the swing phase of gait using real-time motion-capture data to control a sound synthesis engine. Both approaches explore how simple but rich auditory representations of action based events can be used by people with Parkinson's to guide and improve the quality of their walking, reducing the risk of falls and injury. Studies with Parkinson's disease patients are reported which show positive results for both techniques in reducing step length variability. Potential future directions for how these sound approaches can be used to manage gait disturbances in Parkinson's are also discussed.

Time to get a move on: overcoming bradykinetic movement in Parkinson's disease with artificial sensory guidance generated from biological motion.

Paradoxical kinesia describes the motor improvement in Parkinson's disease (PD) triggered by the presence of external sensory information relevant for the movement. This phenomenon has been puzzling scientists for over 60 years, both in neurological and motor control research, with the underpinning mechanism still being the subject of fierce debate. In this paper we present novel evidence supporting the idea that the key to understanding paradoxical kinesia lies in both spatial and temporal information conveyed by the cues and the coupling between perception and action. We tested a group of 7 idiopathic PD patients in an upper limb mediolateral movement task. Movements were performed with and without a visual point light display, travelling at 3 different speeds. The dynamic information presented in the visual point light display depicted three different movement speeds of the same amplitude performed by a healthy adult. The displays were tested and validated on a group of neurologically healthy participants before being tested on the PD group. Our data show that the temporal aspects of the movement (kinematics) in PD can be moderated by the prescribed temporal information presented in a dynamic environmental cue. Patients demonstrated a significant improvement in terms of movement time and peak velocity when executing movement in accordance with the information afforded by the point light display, compared to when the movement of the same amplitude and direction was performed without the display. In all patients we observed the effect of paradoxical kinesia, with a strong relationship between the perceptual information prescribed by the biological motion display and the observed motor performance of the patients.

Perceiving and reenacting spatiotemporal characteristics of walking sounds.

Many studies have examined the processes involved in recognizing types of human action through sound, but little is known about whether the physical characteristics of an action (such as kinetic and kinematic parameters) can be perceived and imitated from sound. Twelve young healthy adults listened to recordings of footsteps on a gravel path taken from walks of different stride lengths (SL) and cadences. In 1 protocol, participants performed a real-time reenactment of the walking action depicted in a sound sample. Second, participants listened to 2 different sound samples and discriminated differences in SL. In a 2nd experiment, these procedures were repeated using synthesized sounds derived from the kinetic interactions between the foot and walking surface. A 3rd experiment examined the influence of altered cadence on participants' ability to discriminate changes in SL. Participants significantly adapted their own SL and cadence according to those depicted in both real and synthesized sounds (p < .01). However, although participants accurately discriminated between large changes in SL, these perceptions were heavily influenced by temporal factors, that is, when cadence changed between samples. These findings show that spatial attributes of action sounds can be both mimicked and discriminated, even when only basic kinetic interactions present within the action are specified.

Timekeeping strategies operate independently from spatial and accuracy demands in beat-interception movements.

The prevailing paradigm for researching sensorimotor synchronisation in humans involves finger tapping and temporal accuracy measures. However, many successful sensorimotor synchronisation actions require not only to be 'in time', but also to be in a predefined spatial position. Reaching this spatial position in many everyday actions often exceeds the average amplitude of a finger movement. The aim of this study is to address how people coordinate their movement to be in the right place at the right time when the scale of the movement varies. Does the scale of the movement and accuracy demands of the movement change the ability to accurately synchronise? To address these questions, a sensorimotor synchronisation task with three different inter-beat intervals, two different movement amplitudes and two different target widths was used. Our experiment demonstrated that people use different timing strategies--employing either a movement strategy (varying movement time) or a waiting strategy (keeping movement time constant) for large-scale movements. Those two strategies were found to be equally successful in terms of temporal accuracy and variability (spread of errors). With longer interval durations (2.5 and 3.5 s), variability of sensorimotor synchronisation performance increased (measured as the spread of errors). Analysing the data using the Vorberg and Wing (Handbook of perception and action. Academic Press, New York, pp 181-262, 1996) model shows a need to develop further existing timing models of sensorimotor synchronisation so that they could apply to large-scale movements, where different movement strategies naturally emerge.

Expertise is perceived from both sound and body movement in musical performance.

Music is a rich form of nonverbal communication, in which the movements that expert musicians make during performance can influence the perception of expressive and structural features of the music. Whether the actual skill of a musician is perceivable from vision of movement was examined. In Experiment 1, musicians and non-musicians rated performances by novice, intermediate and expert clarinettists from point-light animations of their movements, sound recordings, or both. Performances by clarinettists of more advanced skill level were rated significantly higher from vision of movements, although this effect was stronger when sound was also presented. In Experiment 2, movements and sound from the novice and expert clarinettists' performances were switched for half the presentations, and were matched for the rest. Ratings of novice music were significantly higher when presented with expert movements, although the opposite was not found for expert sound presented with novice movements. No perceptual effect of raters' own level of musicianship was found in either experiment. These results suggest that expertise is perceivable from vision of musicians' body movements, although perception of skill from sound is dominant. The results from Experiment 2 further indicate a cross-modal effect of vision and audition on the perception of musical expertise.

Timing movements to interval durations specified by discrete or continuous sounds.

Understanding how the timing of motor output is coupled to sensory temporal information is largely based on synchronisation of movements through small motion gaps (finger taps) to mostly empty sensory intervals (discrete beats). This study investigated synchronisation of movements between target barriers over larger motion gaps when closing time gaps of intervals were presented as either continuous, dynamic sounds, or discrete beats. Results showed that although synchronisation errors were smaller for discrete sounds, the variability of errors was lower for continuous sounds. Furthermore, finger movement between targets was found to be more sinusoidal when continuous sensory information was presented during intervals compared to discrete. When movements were made over larger amplitudes, synchronisation errors tended to be more positive and movements between barriers more sinusoidal, than for movements over shorter amplitudes. These results show that the temporal control of movement is not independent from the form of the sensory information that specifies time gaps or the magnitude of the movement required for synchronisation.