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Background: Communication difficulties are common in people with dementia, and often present from an early stage. However, direct treatment options for people with dementia that positively influence their daily communication are scarce. Aims: To evaluate the potential impact and feasibility of a personalized logopaedic intervention. Methods & Procedures: A total of 40 community-dwelling persons with dementia and their caregivers were recruited. Five experienced speech and language therapists (SLTs) delivered the six-session Com-mens intervention at home. Com-mens aims to improve positive communication between people with dementia and their primary caregivers and comprises five elements: interactive history-taking, dynamic observational assessment, education about the consequences of dementia on communication, development and use of personalized communication tools, use motivational, and person-centred strategies by the SLT. We conducted a single-group mixed-methods pilot study with five measurements: baseline, directly after intervention, and at 3, 6 and 9 months follow-up. Semi-structured interviews and questionnaires for Experienced Communication in Dementia, quality of life, psychological well-being and caregiver burden were conducted. Process evaluation was performed by interviewing participants, drop-outs, SLTs and other stakeholders. Outcomes & Results: A total of 32 dyads completed the intervention. Repeated measures analyses revealed no significant changes over time. In the interviews, participants reported a positive impact on their feelings, increased communication skills and better coping with the diagnosis. Participants would recommend the intervention to others. Facilitators were timely delivery, personalized content and adequate reimbursement. Barriers were unfamiliarity with Com-mens among referrers, an overburdened caregiver or disrupted family relationships. Conclusions & Implications: This newly developed logopaedic intervention is feasible and has a perceived positive impact on both people with dementia and their caregivers, which is confirmed by a stable pattern over a period of 1 year. Future comparative studies are needed to test the effectiveness of personalized interventions in this patient population.

Introduction: Movement observation is a core aspect in physical therapists' diagnosis to determine which interventions are adequate to improve functional abilities. The aim of this study was to derive design principles for an educational program for the development of observational skills. Methods: We used a qualitative approach within a design-based research methodology. In four rounds, 8 physical therapy students, 16 teachers, and 9 practitioners participated in five Nominal Group Technique meetings and six interviews. Meetings and interviews were transcribed verbatim and analyzed using thematic analysis. Results: We identified three themes, each with several design principles: (1) didactics; (2) professional content; and (3) conditions for optimal learning. We developed a proto-theory underpinned with underlying educational theories. Conclusions: To learn observational skills, students, facilitated by an experienced teacher, need to take the lead in their own learning process. This might imply a need for additional training for teachers. A realistic context is a precondition for learning; it might be necessary to increase possibilities for observations in clinical contexts or to invest in training for (simulated) patients as participants in education. Further research is needed to test the applicability of the design principles and a proto-theory for other professionals with a focus on observation and analysis of movements. [ABSTRACT FROM AUTHOR]

Chronic spasticity poses a major burden on patients after stroke. Intramuscular botulinum toxin injections constitute an important part of the treatment for patients suffering from troublesome focal spasticity. This study explores the experienced consequences of chronic spasticity amongst patients after stroke regarding physical impairments and activities, the experienced effects of botulinum toxin treatment on these domains, and whether current spasticity management addresses patients' needs. Fourteen participants with chronic spasticity after stroke who were treated with cyclical botulinum toxin injections in the upper and/or lower extremity muscles were interviewed. Inductive thematic analysis generated representative themes. Analyses of the interviews revealed three themes: (1) spasticity-related impairments and activity limitations; (2) fluctuations in spasticity related to botulinum toxin; (3) need for professional support and feedback. Besides motor impairments, participants experienced activity limitations in many domains of everyday life, with considerable day-to-day fluctuations. Moreover, treatment with botulinum toxin led to cyclical fluctuations in spasticity-related symptoms, which differed across participants. The participants called for shared responsibility for treatment, particularly regarding optimising the timing of injections. Incorporating patient-relevant outcomes into the current assessment of spasticity and monitoring these outcomes may improve spasticity management, particularly regarding the timing of botulinum toxin injections. Because chronic spasticity after stroke impacts on almost all domains of everyday life, professionals should identify and target the most relevant problems in each individual patient. Monitoring patient-reported outcomes may help patients and professionals to get insight in the fluctuations of spasticity-related symptoms and may help to evaluate the effects of botulinum toxin injections from the patient's perspective. Patient education and providing insight in the fluctuations of spasticity-related symptoms may support self-management and shared decision-making in spasticity management. [ABSTRACT FROM AUTHOR]

Purpose: Little is known concerning the impact of chronic spasticity on physical activities, social participation, and well-being, and whether patients' needs are addressed by current treatments. This study aims to investigate these lacunas in persons with a pure form of hereditary spastic paraplegia (HSP), in whom spasticity is a prominent symptom. Methods: Fourteen patients with a pure form of HSP were interviewed. These interviews were recorded, verbally transcribed, and thematically analyzed. Results: Four themes were identified which can be reflected by the phrases: (1) 'I stumble', (2) 'I struggle', (3) 'I feel ashamed', and (4) 'I need support'. Balance and gait problems led to limitations in domestic activities, employment, and recreation. 'Stumbling' also occurred due to pain, stiffness, and fatigue. Struggling was related to the continuous need for adaptation strategies, including the abandonment of some activities. Participants further reported feelings of shame, fear, and frustration. Lastly, they needed more support in daily activities than currently provided. Conclusion: Besides treating spasticity-related motor impairments, patients with HSP need practical support for optimizing their physical activities and social participation. They also seek attention for the non-motor consequences of their chronic spasticity to improve their well-being. Patient-reported outcomes might help to address these needs. According to patients with hereditary spastic paraplegia, interventions for spasticity should not only be aimed at reducing motor impairments, but also on reducing pain and fatigue, improving nighttime rest and general well-being, and optimizing the performance of relevant personal activities. Medical, role and emotional management in patients with hereditary spastic paraplegia can be improved only when individual needs are identified and monitored over the course of the disease. Besides assessment of bodily functions and physical capacities, systematic evaluation of patient-reported outcomes will help both patients and professionals to monitor the functional impact of disease progression and to evaluate the effects of interventions aimed at retarding this progression. [ABSTRACT FROM AUTHOR]

Objective: The impact of difficulties with eating and drinking in adolescents and young adults with cerebral palsy is unknown. The purpose of this study is to find out which difficulties adolescents and young adults with cerebral palsy experience with eating and drinking in daily life and how they deal with these difficulties. The study also explores how they think about themselves with respect to eating and what does or does not help regarding social participation. Method: We collected the data from ten participants with spastic cerebral palsy (aged 15-23 years) living in the Netherlands. We used a qualitative study design with a conventional content analysis. Semi-structured in-depth interviews were used to identify meaningful factors related to eating and drinking difficulties. We coded relevant phrases from each interview and clustered and synthesized them into categories. Result: We derived four categories from the transcripts: (I) perceived eating and drinking difficulties (e.g., not managing to eat all food textures and/or choking); (II) challenges in physical and social context (e.g., accessibility of restaurants, menu supply, and/or needing assistance or not); (III) dealing with eating and drinking difficulties (e.g., adaptation, food avoidance, and/or giving up); (IV) Negative feelings about their eating and drinking (e.g., shame, frustration, fear for choking, and/or concerns about the future). One striking finding was that most participants had not recently received either monitoring or intervention for their feeding skills. Conclusion: This study shows that adolescents and young adults with cerebral palsy experience many restrictions in eating and drinking situations leading to negative feelings and lower participation levels, while little attention is directed towards these difficulties. Regular multidisciplinary rehabilitation programs should include evaluation, advice, and intervention regarding eating and drinking ability in order to increase social participation and self-management. Adolescents and young adults with cerebral palsy experience difficulties with eating, drinking, and swallowing, and they encounter difficulties in participating in mealtimes with family and friends. Although adolescents and young adults with cerebral palsy rated their eating and drinking abilities as reasonable, they reported feelings of shame, frustration, fear, distress, and concerns for the future or unknown environments. Regular multidisciplinary involvement with eating and drinking is needed for purposes of evaluation, advice, and intervention throughout the life course, adjusted to living conditions and the latest evidence. Adolescents and young adults with cerebral palsy showed limited initiative in asking for personal assistance in eating and drinking activities. [ABSTRACT FROM AUTHOR]

Purpose: Self-management has become an important concept in stroke rehabilitation. This study explored allied healthcare professionals' (AHPs) perceptions and beliefs regarding the self-management of stroke survivors and their knowledge and skills regarding stroke self-management interventions. Method: Four focus group interviews were conducted with 27 professionals. Verbal questions and mind mapping were used to collect data. A constant comparative framework was used for analysis. Results: The AHPs discussed different levels of post-stroke self-management, depending on factors such as pre-stroke skills, recovery-phases post-stroke and cognitive abilities of the stroke patients. They hesitated about stroke clients' capacities to self-manage. AHPs questioned whether their own attitudes and skills were really supportive for stroke clients' self-management and criticised stroke services as being too medically oriented. They recommended that self-management programmes should focus both on clients and caregivers and be delivered at peoples' homes. Conclusion: Professional perceptions and beliefs are important factors to take into account when implementing stroke self-management programmes. Before professionals can enable stroke survivors to self-manage, they first need support in acquiring knowledge and skills regarding post-stroke self-management. Moreover, professionals could benefit from behavioural change models, and professionals recognised that stroke self-management interventions would be most beneficial when delivered post-discharge at people's homes. [ABSTRACT FROM AUTHOR]

Purpose: Self-management has become an important concept in stroke rehabilitation; however, the way that people post-stroke reflect on the concept of self-management has not yet been studied. This qualitative study explored the reflections of persons post-stroke on self-management, readiness and needs in self-management support. Methods: Focus group interviews were conducted with 16 community living stroke survivors (53-84 years of age). Both verbal questions and photo elicitations were used to collect data. A constant comparative framework was used for the analysis. Result: Participants described their self-management as a complex, long-term, personal learning process. Post-discharge, participants were not ready to self-manage. Aside from individual self-management, participants also mentioned co-management with relatives. Relatives could provide support, but they also limited the development of participants' self-management skills. Participants missed having professional support post-discharge and would have appreciated additional psychological and emotional support in their process of self-management. Conclusion: Self-management post-stroke is complex. Stroke self-management programmes may be optimised when integrating role and emotional management in addition to medical management. Although readiness to self-manage differs among individuals, support should start as soon as possible and continue post-discharge in people's personal environments. Self-management programmes should not only focus on self-management of stroke survivors but also on co-management with relatives. [ABSTRACT FROM AUTHOR]

Purpose: Patients with a neuromuscular disease (NMD) can present with dysarthria and/or dysphagia. Literature regarding prevalence rates of dysarthria and dysphagia is scarce. The purpose of this study was to determine prevalence rates, severity and co-presence of dysarthria and dysphagia in adult patients with NMD. Method: Two groups of adult patients with NMD were included: 102 consecutive outpatients (the 'unselected cohort') and 118 consecutive patients who were referred for multidisciplinary assessment (the 'selected cohort'). An experienced speech-language pathologist examined each patient in detail. Results: The pooled prevalence of dysarthria was 46% (95% Cl: 36.5-55.9) and 62% (95% Cl: 53.3-70.8) in the unselected and selected cohorts, respectively. The pooled prevalence of dysphagia was 36% (95% Cl: 27.1-45.7) and 58% (95% Cl: 49.4-67.2) in the unselected and selected cohorts, respectively. There was a modest but significant association between the presence of dysarthria and dysphagia (rs = 0.40; p<0.01). Although the dysphagia was generally mild, dysarthria was moderate to severe in 15% of the dysarthric patients. Conclusion: The prevalence rates of dysarthria and dysphagia among patients with various types of NMD are high. Physicians should therefore be aware of this prevalence and consider referring NMD patients to a speech-language pathologist. [ABSTRACT FROM AUTHOR]

To determine whether findings on videofluoroscopic swallow studies reveal different patterns of dysphagia between children with central and peripheral neurologic disorders, a retrospective study of 118 videofluoroscopic swallow studies was completed. There were 3 groups: cerebral palsy with only spastic features (n = 53), cerebral palsy with dyskinetic features (n = 34), and neuromuscular disorders (myotonic dystrophy I, n = 5; spinal muscular atrophy I-II, n = 8; Duchenne muscular dystrophy, n = 8; other neuromuscular disorder, n = 10). Interpretation of the videofluoroscopic swallow studies was not blinded. The video fluoroscopic swallow study findings were compared dichotomously between the groups. Children with cerebral palsy demonstrated dysphagia in 1 or all phases of swallowing. In neuromuscular disorder, muscle weakness results in pharyngeal residue after swallow. The underlying swallowing problem in neuromuscular disorder is muscle weakness whereas that in cerebral palsy is more complex, having to do with abnormal control of swallowing. This study serves as a first exploration on specific characteristics of swallowing in different neurologic conditions and will help clinicians anticipate what they might expect. [ABSTRACT FROM PUBLISHER]

Background and Objectives: Tools to measure self-perceived communication between persons with early-stage dementia and their caregivers are lacking. Therefore, we developed a questionnaire for Experienced Communication in Dementia (ECD) with a patient version (ECD-P) and a caregiver version (ECD-C), which contains items on (a) caregiver competence, (b) social communication, (c) communication difficulties, and (d) experienced emotions. This article describes the feasibility and clinimetric evaluation of this instrument., Research Design and Methods: A prospective observational cohort study was conducted with 57 dyads (community-dwelling person with dementia and primary caregiver). ECD-P, ECD-C, and measures on quality of life, caregiver burden, cognitive functioning, physical functioning, and functional independence were administered. After 2 weeks, the dyads filled out the ECD again. Feasibility (completion time and missing values per item), internal consistency (Cronbach's α), test-retest reliability (intraclass correlation coefficients [ICCs]), and construct validity (hypotheses testing with Spearman's r) were evaluated., Results: Mean completion time was 10 min per questionnaire. ICCs for test-retest reliability ranged from 0.67 to 0.78, except for ECD-P2 (ICC = 0.31). Internal consistency ranged from α = 0.75 to 0.82 for ECD-P1 and all parts of ECD-C, except for ECD-P2 (α = 0.66). Correlation coefficients for convergent validity ranged from r = 0.31 to 0.69 and correlation coefficients for divergent validity were r < 0.20 and statistically insignificant., Discussion and Implications: Pending future research, the ECD, except part ECD-P2, seems to be a promising tool to measure experienced communication between persons with early-stage dementia and their caregivers., (© The Author(s) 2021. Published by Oxford University Press on behalf of The Gerontological Society of America.)

Background and Objectives: Oculopharyngeal muscular dystrophy (OPMD) is a late-onset, progressive muscle disease. Disease progression is known to be slow, but details on the natural history remain unknown. We aimed to examine the natural history of OPMD in a large nationwide cohort to determine clinical outcome measures that capture disease progression and can be used in future clinical trials., Methods: Patients invited by their treating physicians or identified from the national neuromuscular database and invited family members were examined twice 20 months apart with fixed dynamometry; Medical Research Council (MRC) grading; maximum bite force and isometric tongue strength; Motor Function Measure (MFM); 10-step stair test; maximum swallowing, chewing, and speech tasks; and quality of life assessments., Results: Disease progression was captured by 8 of 18 measures over 20 months in 43 patients with genetically confirmed OPMD. The largest deterioration was seen in deltoid muscle strength (-27% [range -17% to -37%]), followed by the quadriceps (-14% [range -6 to -23%]), iliopsoas (-12.2%), tongue (-9.9%), and MRC sum score (-2.5%). The 10-step stair test (-12.5%), MFM part D1 (-7.1%), and maximum repetition rate of /pa/ (-5.3%) showed a significant decrease as well (all p < 0.05). The Physical Functioning domain of the Short Form-36 Health Survey significantly deteriorated ( p = 0.044). No relationship was found between disease progression and genotype or disease duration ( p > 0.05)., Discussion: Despite the slow disease progression of OPMD, this study showed that several outcome measures detected progression within 20 months. Deltoid muscle strength, measured by fixed dynamometry, showed the greatest decline. These longitudinal data provide clinical outcome measures that can be used as biomarkers in future clinical trials., (Copyright © 2021 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology.)