Patricia Masterson-Algar

The aim of this study was to gain insight into young dementia carer-specific content provided on the websites of dementia and (young) carers organizations in seven European countries including: the UK, the Netherlands, Italy, Greece, Portugal, Ireland and Sweden. Research questions were: 1). What types of young dementia carer-specific content are available on national websites of dementia and (young) carers organizations across Europe? and 2). How does the content address the complex impact that dementia can have on young dementia carers? The identification of websites was informed by the contextual characteristics of each country in relation to dementia and young carers support and services. A standard protocol describing the website inclusion and exclusion criteria, data extraction and content analysis using a categorical coding framework was followed. Descriptive statistics were calculated to summarize data within and across countries. A total of 312 organizations with active websites meeting the eligibility criteria across countries were identified, and their websites reviewed. Content relevant to young dementia carers was identified in 28% (n = 86) of the websites, with uneven availability of resources across Europe and very limited resources in some countries. Most contents addressed five categories: Diagnosis & symptoms, Uncertainty & family distress, Changes in roles, Stigma & isolation and Identifying need for support. A lack of tailored resources to support young dementia carers was identified, particularly in relation to two categories: Grief & loss and Education & life planning. Only a minority of websites included young dementia carer-specific content. These websites primarily focused on general support needs and explanations of dementia, while key areas such as guidance on school, career, and life planning remain underdeveloped. There is a need for greater recognition of young dementia carers, clearer terminology, and more developmentally appropriate and practically oriented resources to strengthen online support for these carers across Europe.

Introduction: Psychosocial interventions are essential to support people living with dementia and their carers. A consensus on what is most important for research on psychosocial intervention in dementia and how intervention studies should best be conducted is currently lacking. This protocol describes the research plan aimed at achieving consensus on (i) the relevance of core elements (CEs) for the development, feasibility testing/piloting, evaluation and/or implementation phases of psychosocial interventions in dementia and (ii) methodologies (eg, design) and methods most suitable to address CEs per phase. Methods and analysis: This study was co-designed with a multi-stakeholder advisory group and a multi-disciplinary INTERDEM (psychosocial INTERventions in DEMentia) Methodology Taskforce steering committee. It will involve a multi-phase modified Delphi design, including surveys and group discussions with stakeholders, namely people living with dementia, (informal/unpaid/family) carers, health and social care professionals, policy makers, representatives from insurance companies and psychosocial researchers. A series of iterative ‘rounds’ will be conducted. In round 1 (Phase 1: ‘identification’), stakeholders will be asked to complete an online survey rating the importance of CEs from the UK Medical Research Council (MRC) Framework, namely (i) consider context; (ii) develop, refine and (retest) programme theory; (iii) engage stakeholders; (iv) identify key uncertainties; (v) refine interventions and (vi) economic considerations per phase; propose relevant additional CEs and list methodologies/methods that most suitably address CEs. These ratings will be further explored through online discussion rounds (Phase 2: ‘elaboration’). In round 2 (Phase 3: ‘consensus’), participants will be asked to rate the importance of CEs again (ie, new CEs and where no consensus was reached in Phase 1) and the usefulness of methodologies/methods to address CEs. Outcomes will be discussed with the advisory group and steering committee (Phase 4: ‘validation’). This process (Phases 3 and 4) will be repeated until a consensus on CEs and methodologies/methods is achieved. Ethics and dissemination: Ethical approval was received at Maastricht University (FHML-REC/2025/078) and the University of West London (UWL/REC/SBS-01195). Participants will sign informed consent prior to study participation. Results will be disseminated through a peer-reviewed publication, seminars, webinars, conferences, postgraduate dementia programmes, blogs, commissioner briefings and social media. Study registration: Open Science Framework ( https://doi.org/10.17605/OSF.IO/DQRFA ).

Introduction Research on psychosocial interventions for dementia demonstrates increased rigour and robustness. However, if we are to influence practice, beyond results from randomised controlled trials, a variety of types and sources of evidence is needed. The Medical Research Council (MRC) framework offers a valuable guide for developing, evaluating and implementing complex interventions, to facilitate integration of research into practice. There is limited knowledge of how researchers design, evaluate and implement psychosocial intervention studies in dementia, using the MRC framework. This scoping review aims to: (1) identify the methodological and methods trends, use and gaps in the development, evaluation and implementation of psychosocial interventions for dementia, and (2) determine if and how the MRC six core elements were considered and applied in studies. Methods and analysis Six databases (Ovid MEDLINE, Embase, PsycINFO, CINAHL, Web of Science, Cochrane Library) will be searched for studies published from 2015 (when MRC process guidance was published) to 2025. Identified deduplicated citations will be imported into Covidence software, where up to 40% of title/abstracts will be double screened by independent reviewers. ASReview will be used to rank articles by relevance, with a stopping criterion of 250 consecutive irrelevant articles. Full texts will be reviewed by a single reviewer and those excluded will be checked by a second reviewer. Data extraction will include study aim/objective (ie, to develop/adapt; test feasibility/pilot; evaluate; implement); methodology and methods applied; information on which MRC six core elements were considered (yes/no), and if so, how they were addressed (ie, qualitative details). A narrative synthesis, alongside graphical representations (eg, table/bar charts/histograms), will be used to synthesise findings on methodologies and methods mapped onto the MRC framework. Ethics and dissemination This secondary analysis scoping review does not require ethics approval. Results will be disseminated through peer-reviewed publication(s), seminars, webinars, conferences, postgraduate dementia programmes, blogs, commissioner briefings and social media. The findings will provide a state-of-the-art overview of current practices; advance methods/methodology such as informing a Delphi consensus study on appropriate research approaches; and guide researchers in application of the MRC framework to widen the scope of dementia care evidence for practice improvements. Registration Submitted to Open Science Framework https://doi.org/10.17605/OSF.IO/S56NQ.

Supporting dementia carers is a global priority. As a Randomised Controlled Trial (RCT) (n = 352) of the Word Health Organization recommended, an internationally disseminated ‘iSupport’ e-health intervention was conducted, revealing no measurable benefits to the wellbeing of adult dementia carers. This process evaluation contributes original insights of the trial outcomes. Its aims were to ascertain the usability and acceptability of iSupport, participant engagement and adherence to iSupport, and contextual factors influencing its implementation and potential impact. The process evaluation followed a mixed-method design. The following data were collected from all participants randomised to iSupport (n = 175): (1) post-intervention evaluation questionnaire (n = 93) containing the 10-item System Usability Scale and bespoke items exploring acceptability, engagement, and perceived impact; (2) qualitative interviews (n = 52) with a sub-sample of participants who were purposively sampled according to age, scores on the outcome measures, and gender, as these interviews aimed to generate contextual detail and explanatory accounts; and (3) ‘Access’ data from the iSupport platform (n = 175). Descriptive statistics was used to report on the frequency of survey responses whilst a thematic analysis approach was followed to identify themes from the qualitative interview data. Data sets were analysed independently and then used with respect to one another in order to generate explanatory pathways related to the usability, acceptability, and the impact of iSupport. Despite good trial retention, 8.3% of participants (n = 32) did not spend any time on iSupport, and 54% (n = 94) spent between 30 min and 1.5 h. Factors driving this were the following: time constrains, method of delivery, and content characteristics. Positive impacts of iSupport were also described. Participants, including those with extensive caring experience, reported how iSupport had made them feel reassured, valued, and more able to ask for help. They also reported having an improved outlook on their caring role and on the needs and feelings of the person living with dementia. Research and practice should focus on exploring blended delivery, including self-directed and interactive components, such as regular contact with a health professional. These insights are critical for supporting the global implementation and adaptation of iSupport and offer valuable directions for future research.

Background: As people with Parkinson's experience progressive communication changes, effective, implementable speech and language therapy (SLT) interventions are needed. Process evaluations alongside pragmatic randomised controlled trials (RCTs) are of clinical value if they describe, compare and understand the implementation of trial interventions. This paper reports the PD COMM process evaluation. PD COMM was a large, UK multi‐centre phase III pragmatic RCT of SLT in the National Health Service (NHS). It recruited 388 people with Parkinson's who were randomised to Lee Silverman Voice Treatment (LSVT), Standard NHS SLT, or no dysarthria intervention. Aims: To describe and compare the content and service delivery components of the PD COMM SLT interventions; understand experiences of implementing LSVT; explain trial outcomes; and reflect on implications for practice and research. Methods and Procedures: We took a pragmatic, mixed methods approach. The intervention description team used a sub‐sample of routine therapy notes and trial record forms, the Template for Intervention Description and Replication (TIDieR) and simple descriptive statistics to compare Individual Participant Therapy Data (LSVT n = 51; Standard NHS SLT n = 54). In parallel, informed by Normalisation Process Theory (NPT), the implementation team conducted qualitative interviews with a sub‐sample of therapists ( n = 20) and participants ( n = 24) to understand the additional work of implementing LSVT. The core process evaluation team met to integrate the findings in relation to the trial outcomes. Outcomes and Results: LSVT was largely delivered per protocol, tailored to participants’ interests and interactions. Dosage was a key difference between the two interventions, commonly achieved by two or more therapists delivering LSVT. Effective mechanisms were LSVT's structured design, repetitive and social nature, practise requirements and focus on volume. Standard NHS SLT was eclectic, reflecting a range of clinical approaches at a lower intensity, including some techniques and activities in common with LSVT. Although focused on impairment therapy, including specific voice therapy techniques, it also featured cognitive‐linguistic and psychosocial targets and low technology augmentative and alternative communication (AAC). The trial design may have limited opportunities for group intervention. Conclusions and Implications: Any LSVT roll‐out needs service support and coordination, and should take an inclusive approach. Future research of Standard NHS SLT should explore a rationale for dosage and more explicit tailoring to individuals and their families. There is also a pressing need to deliver the benefits of LSVT in a cost‐effective manner and to develop a range of evidence‐based, implementable alternatives as people's communication support needs change. WHAT THIS PAPER ADDS: What is already known on the subject Lee Silverman Voice Treatment (LSVT) has a body of incrementally‐developed evidence from effectiveness trials but has not previously been tested in a pragmatic randomised controlled trial (RCT) with an embedded process evaluation. What this paper adds to the existing knowledge This mixed methods process evaluation paper describes and compares content and service delivery components to understand similarities and differences between LSVT and Standard NHS SLT interventions and experiences of implementing LSVT in the UK NHS. What are the potential or actual clinical implications of this work? Services can use the findings to plan delivery of intensive interventions and to reflect on the content and service delivery aspects of locally Standard NHS SLT and how it might be improved.

Objective The use of e-health interventions has grown in demand due to their accessibility, low implementation costs and their potential to improve the health and well-being of people across a large geographical area. Despite these potential benefits, little is known about the cost-effectiveness of self-guided e-health interventions. The aim of the study was to compare the cost and consequences of ‘iSupport’, an e-health intervention to reduce mental health issues in dementia carers. Design A cost-consequence analysis (CCA) of a multi-centre, single-blind randomised controlled trial of iSupport. The CCA was conducted from a public sector (National Health Service, social care and local authority) perspective plus a wider societal perspective. Delivery costs of iSupport were collected using a bottom-up micro-costing approach. Setting 352 participants were recruited from three centres in England, Wales and Scotland. Participants Participants eligible for inclusion were adults over the age of 18 years who self-identified as an unpaid carer with at least 6 months of experience caring for an individual with a diagnosis of dementia. Between 12 November 2021 and 31 March 2023, 2332 carers were invited to take part in the study. 352 participants were randomised: 175 randomised to the iSupport intervention group and 177 to the usual care control group. The mean age of participants in the intervention and control groups was 63 and 62, respectively. Main outcome measures The CCA presented the disaggregated costs and health-related quality of life measured using the EuroQol five-dimension. Results There was no significant difference in generic health-related quality of life measured using the EQ-5D-5L (p=0.67). Both groups reported higher mean costs between baseline and 6 months, but the change in costs was significantly lower in the intervention group. Between baseline and 6 months, the mean change in total resource use costs from the public sector perspective was significantly different between groups (p=0.003, r=−0.161) reporting a mean change per participant of £146 (95% CI: −33 to 342) between the intervention and control groups. From the wider societal perspective, there was no significant difference (p=0.23) in the mean change in total resource use and informal care costs between the two groups from baseline to 6 months. Conclusion Use of iSupport was associated with reduced health and social care resource use costs for carers compared with care-as-usual. Self-guided e-health interventions for dementia carers may have the potential to reduce health and social care resource use and wider societal costs, but evidence relating to their effectiveness and cost-effectiveness is lacking. Trial registration number ISRCTN17420703.

Background: Speech impairments are common with Parkinson’s disease (reported prevalence 68%), increasing conversational demands, reliance on family and social withdrawal. Objective(s): The PD COMM trial compared the clinical and cost-effectiveness of two speech and language therapy approaches: Lee Silverman Voice Treatment LOUD and National Health Service speech and language therapy for the treatment of speech or voice problems in people with Parkinson’s disease to no speech and language therapy (control) and against each other. Design: PD COMM is a phase III, multicentre, three-arm, unblinded, randomised controlled trial. Participants were randomised in a 1 : 1 : 1 ratio to control, National Health Service speech and language therapy or Lee Silverman Voice Treatment LOUD via a central computer-generated programme, using a minimisation procedure with a random element, to ensure allocation concealment. Mixed-methods process and health economic evaluations were conducted. Setting: United Kingdom outpatient and home settings. Participants: People with idiopathic Parkinson’s disease, with self-reported or carer-reported speech or voice problems. We excluded people with dementia, laryngeal pathology and those within 24 months of previous speech and language therapy. Interventions: The Lee Silverman Voice Treatment LOUD intervention included maximum effort drills and high-effort speech production tasks delivered over four 50-minute therapist-led personalised sessions per week, for 4 weeks with prescribed daily home practice. National Health Service speech and language therapy content and dosage reflected local non-Lee Silverman Voice Treatment speech and language therapy practices, usually 1 hour, once weekly, for 6 weeks. Trained, experienced speech and language therapists or assistants provided interventions. The control was no speech and language therapy until the trial was completed. Main outcome measures: Primary outcome: Voice Handicap Index total score at 3 months. Secondary outcomes: Voice Handicap Index subscales, Parkinson’s Disease Questionnaire-39; Questionnaire on Acquired Speech Disorders; EuroQol-5D-5L; ICEpop Capabilities Measure for Older Adults; Parkinson’s Disease Questionnaire – Carers; resource utilisation; and adverse events. Assessments were completed pre-randomisation and at 3, 6 and 12 months post randomisation. Results: Three hundred and eighty-eight participants were randomised to Lee Silverman Voice Treatment LOUD (n = 130), National Health Service speech and language therapy (n = 129) and control (n = 129). The impact of voice problems at 3 months after randomisation was lower for Lee Silverman Voice Treatment LOUD participants than control [−8.0 (99% confidence interval: −13.3, −2.6); p = 0.001]. There was no evidence of improvement for those with access to National Health Service speech and language therapy when compared to control [1.7 (99% confidence interval: −3.8, 7.1); p = 0.4]. Participants randomised to Lee Silverman Voice Treatment LOUD reported a lower impact of their voice problems than participants randomised to National Health Service speech and language therapy [99% confidence interval: −9.6 (−14.9, −4.4); p < 0.0001]. There were no reports of serious adverse events. Staff were confident with the trial interventions; a range of patient and therapist enablers of implementing Lee Silverman Voice Treatment LOUD were identified. The economic evaluation results suggested Lee Silverman Voice Treatment LOUD was more expensive and more effective than control or National Health Service speech and language therapy but was not cost-effective with incremental cost-effectiveness ratios of £197,772 per quality-adjusted life-year gained and £77,017 per quality-adjusted life-year gained, respectively. Limitations: The number of participants recruited to the trial did not meet the pre-specified power. Conclusions: People that had access to Lee Silverman Voice Treatment LOUD described a significantly greater reduction in the impact of their Parkinson’s disease-related speech problems 3 months after randomisation compared to people that had no speech and language therapy. There was no evidence of a difference between National Health Service speech and language therapy and those that received no speech and language therapy. Lee Silverman Voice Treatment LOUD resulted in a significantly lower impact of voice problems compared to National Health Service speech and language therapy 3 months after randomisation which was still present after 12 months; however, Lee Silverman Voice Treatment LOUD was not found to be cost-effective. Future work: Implementing Lee Silverman Voice Treatment LOUD in the National Health Service and identifying alternatives to Lee Silverman Voice Treatment LOUD for those who cannot tolerate it. Investigation of less costly alternative options for Lee Silverman Voice Treatment delivery require investigation, with economic evaluation using a preference-based outcome measure that captures improvement in communication. Study registration: This study is registered as ISRCTN12421382. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: 10/135/02) and is published in full in Health Technology Assessment; Vol. 28, No. 58. See the NIHR Funding and Awards website for further award information.

Young dementia carers (YDCs) rarely receive appropriate training and support. Their visibility and identification remain dangerously low, and, consequently, support initiatives being developed are failing to reach them. This study explored the success (or failure) of YDC identification pathways as well as the barriers and enablers to their implementation. An explorative qualitative approach was followed, drawing on the experiences of parents of YDCs, dementia researchers, professionals in the field of dementia/young carers, and young adult carers. Data collection involved semi-structured interviews (n = 17) and a participatory 2-h workshop to discuss and critique preliminary themes as well as explore strategies to increase the visibility and identification of YDCs. Five themes were identified: a “whole-family approach” (as a pathway to identification), “not a carer” (self/family identification), a postcode lottery (high variability of support services), tailored support that is “fit for purpose”, and the “power” of peer support. Recommendations on potential initiatives and actions that can help raise awareness and increase the identification success of YDCs are proposed. Our findings support the need for a broad and holistic approach to the identification of YDCs that runs alongside the development of support initiatives that are accessible and relatable. The support itself will play a role in improving subsequent identification or hindering it if not “fit for purpose”.

Young dementia carers (YDCs) rarely receive appropriate training and support. Their visibility and identification remain dangerously low and as a consequence, support initiatives being developed are failing to reach them. This study explored the success (or failure) of YDCs identification pathways as well as the barriers and enablers to their implementation. An explorative qualitative approach was followed drawing on the experiences of parents of YDCs, dementia researchers, professionals in the field of dementia/young carers and young adult carers. Data collection involved semi-structured interviews (n=17) and a participatory 2-hour workshop to discuss and critique preliminary themes as well as explore strategies to increase the visibility and identification of YDCs. Five themes were identified: A ‘whole family approach’ (as a pathway to identification); ‘Not a carer’ (self/family identification); A postcode lottery (high variability of support services); Tailored support that is ‘fit for purpose’ and the ‘power’ of peer support. Recommendations on potential initiatives and actions that can help raise awareness and increase identification success of YDCs are proposed. Our findings support the need for a broad and holistic approach to the identification of YDCs that runs alongside the development of support initiatives that are accessible and relatable. The support itself will play a role in improving subsequent identification or hindering it if not ‘fit for purpose’.