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Background: Primary progressive aphasia is a language-led dementia resulting in a gradual dissolution of language. Primary progressive aphasia has a significant psychosocial impact on both the person and their families. Speech and language therapy is one of the only available management options, and communication partner training interventions offer a practical approach to identify strategies to support conversation. The aim of this study was to define and refine a manual and an online training resource for speech and language therapists to deliver communication partner training to people with primary progressive aphasia and their communication partners called Better Conversations with primary progressive aphasia.Methods: The Better Conversations with primary progressive aphasia manual and training program were developed using the Medical Research Council framework for developing complex interventions. The six-stage development process included 1. Exploratory review of existing literature including principles of applied Conversation Analysis, behaviour change theory and frameworks for chronic disease self-management, 2. Consultation and co-production over 12 meetings with the project steering group comprising representatives from key stakeholder groups, 3. Development of an initial draft, 4. Survey feedback followed by a consensus meeting using the Nominal Group Techniques with a group of speech and language therapists, 5. Two focus groups to gather opinions from people with PPA and their families were recorded, transcribed and Thematic Analysis used to examine the data, 6. Refinement.Results: Co-production of the Better Conversations with primary progressive aphasia resulted in seven online training modules, and a manual describing four communication partner training intervention sessions with accompanying handouts. Eight important components of communication partner training were identified in the aggregation process of the Nominal Group Technique undertaken with 36 speech and language therapists, including use of video feedback to focus on strengths as well as areas of conversation breakdown. Analysis of the focus groups held with six people with primary progressive aphasia and seven family members identified three themes 1) Timing of intervention, 2) Speech and language therapists' understanding of types of dementia, and 3) Knowing what helps. These data informed refinements to the manual including additional practice activities and useful strategies for the future.Conclusions: Using the Medical Research Council framework to develop an intervention that is underpinned by a theoretical rationale of how communication partner training causes change allows for the key intervention components to be strengthened. Co-production of the manual and training materials ensures the intervention will meet the needs of people with primary progressive aphasia and their communication partners. Gathering further data from speech and language therapists and people living with primary progressive aphasia and their families to refine the manual and the training materials enhances the feasibility of delivering this in preparation for a phase II NHS-based randomised controlled pilot-feasibility study, currently underway. [ABSTRACT FROM AUTHOR]

Background: Positive psychology research in dementia care has largely been confined to the qualitative literature because of the lack of robust outcome measures. The aim of this study was to develop positive psychology outcome measures for people with dementia.Methods: Two measures were each developed in four stages. Firstly, literature reviews were conducted to identify and operationalise salient positive psychology themes in the qualitative literature and to examine existing measures of positive psychology. Secondly, themes were discussed within a qualitative study to add content validity for identified concepts (n = 17). Thirdly, draft measures were submitted to a panel of experts for feedback (n = 6). Finally, measures were used in a small-scale pilot study (n = 33) to establish psychometric properties.Results: Salient positive psychology themes were identified as hope, resilience, a sense of independence and social engagement. Existing measures of hope and resilience were adapted to form the Positive Psychology Outcome Measure (PPOM). Due to the inter-relatedness of independence and engagement for people with dementia, 28 items were developed for a new scale of Engagement and Independence in Dementia Questionnaire (EID-Q) following extensive qualitative work. Both measures demonstrated acceptable internal consistency (α = .849 and α = .907 respectively) and convergent validity.Conclusions: Two new positive psychology outcome measures were developed using a robust four-stage procedure. Preliminary psychometric data was adequate and the measures were easy to use, and acceptable for people with dementia. [ABSTRACT FROM AUTHOR]

Background: Research reporting results of clinical trials, psychosocial or technological interventions frequently omit critical details needed to inform implementation in practice. The aim of this article is to develop an Implementation Readiness (ImpRess) checklist, that includes criteria deemed useful in measuring readiness for implementation and apply it to trials of cognitive stimulation in dementia, providing a systematic review of their readiness for widespread implementation. Methods: Five electronic databases were searched. After initial screening of papers, two reviewers assessed quality and scored the included studies based on the ImpRess checklist specifically developed for this review. Results: Twenty studies met the inclusion criteria. As determined by the ImpRess checklist, scores ranged from 11 to 29 out of 52. According to the checklist the most comprehensive and ready to implement version of cognitive stimulation was Cognitive Stimulation Therapy. Conclusions: Reports of interventions rarely include consideration of implementation in practice. Contrary to the growing number of reporting guidelines, crucial items within the ImpRess checklist have been frequently overlooked. This study was able to show that the ImpRess checklist was feasible in practice and reliable. The checklist may be useful in evaluating readiness for implementation for other manualised interventions. [ABSTRACT FROM AUTHOR]

Background: Cognitive Stimulation Therapy (CST) groups for people with dementia are available nationally, and internationally through voluntary organisations, memory services, and in residential care settings. However, groups may not be accessible or best suited for all. Individual Cognitive Stimulation Therapy (iCST) has been developed to provide another means of accessing CST.Methods: The programme was field tested by 22 dyads (carers and people with dementia). Dyads were trained in the iCST approach and provided with a manual and accompanying resources. Researchers contacted dyads weekly to provide support and gather adherence data. Quantitative feedback about each session was also collected using 'Monitoring Progress' forms. Upon completion of their allocation sessions, researchers interviewed dyads about their experience. In total, nine dyads were followed up. Inductive thematic analysis was performed on the qualitative data. The aims of field testing were to assess the feasibility of the programme, and the appropriateness of the iCST materials.Results: Sixty-two percent of the themes received an overall 'high' rating, and the majority of activities were classed as 'low' difficulty. Common barriers to completing sessions were; lack of time, illness, and motivation. Carers felt the manual and resources were 'good' and easy to use. Benefits of the programme for the person included; improvements in communication, mood, and alertness. The programme also gave carers insight into the person's abilities and interests, and provided a new channel of communication. Little support was needed to deliver the programme.Conclusions: Implementation of the iCST intervention was feasible. However, the majority of dyads completed fewer than three sessions per week. The training and support package appeared to be suitable as carers were able to deliver the intervention without intensive support. Barriers occurred largely as a result of life commitments, rather than problems with the intervention itself. This study was limited by a high loss to follow up rate. The effectiveness and cost effectiveness of iCST were investigated in a large scale randomised controlled trial (RCT).Trial Registration: ISRCTN65945963 Date of trial registration: 05/05/2010. [ABSTRACT FROM AUTHOR]

Background: Individual Cognitive Stimulation Therapy (iCST) is a one to one, carer led psychosocial intervention for people with dementia, adapted from group Cognitive Stimulation Therapy (CST). It is increasingly recognised that involving service users in research is key to developing interventions and treatments that successfully address their needs. This study describes the contribution of people with dementia and carers during the development phase of the intervention and materials. Methods: Twenty-eight people with dementia and 24 carers were consulted in a series of six focus groups and 10 interviews. The purpose of this study was to gain insight into perceptions of mental stimulation from the point of view of carers and people with dementia, to ensure the materials are easy to use, clear, and appropriately tailored to the needs of people with dementia and their carers, and to assess the feasibility of the intervention. Results: The importance of mental stimulation was emphasized by carers and people with dementia. People with dementia saw activities as a way of 'keeping up to date' and spending time in a meaningful way. Carers reported benefits such as improved quality of life, mood and memory. The concept of iCST was well received, and both carers and people with dementia responded positively to the first drafts of materials. Feasibility issues, such as finding time to do sessions, were identified. Conclusion: The feedback from the focus groups and interviews will be used to further develop and refine the iCST programme materials in preparation for a field testing phase prior to a large scale randomized controlled trial (RCT). [ABSTRACT FROM AUTHOR]

Background: There is growing evidence that Cognitive Simulation Therapy (CST) benefits cognition and quality of life of people with dementia, but little is known about the indirect effects of this intervention on family caregivers. This study sought to investigate the effect of CST on family caregivers general health status of people with dementia living in the community attending the CST intervention. Method: Eighty-five family caregivers of people with dementia took part in the study. All the people with dementia received the standard twice weekly seven weeks of the CST intervention plus either 24 weeks of a maintenance CST (MCST) intervention or 24 weeks of treatment as usual. Family caregivers were assessed before and after their relatives the CST programme, and after 3 and 6 months of the MCST programme. A pre and post CST groups comparison was undertaken to evaluate the open trial first phase and an ANCOVA model used to analyse the maintenance phase with its controlled comparison. Results: We found no evidence for a benefit on the family caregiver outcome measures of the intervention before and after CST groups by using a t-test analysis or any significant differences between intervention and control groups for any of the variables considered at any time point (3 and 6 month follow up). Conclusion: CST seems to have a relatively specific benefit fpr people with dementia that may not carry over to family carers. Future studies need to further explore and compare the effects that CST might bring to family caregivers of people with dementia attending the intervention. [ABSTRACT FROM AUTHOR]

Background: Many people with dementia experience anxiety, which can lead to decreased independence, relationship difficulties and increased admittance to care homes. Anxiety is often treated with antipsychotic medication, which has limited efficacy and serious side effects. Cognitive behavioural therapy (CBT) is widely used to treat anxiety in a range of populations, yet no RCTs on CBT for anxiety in dementia exist. This study aims to develop a CBT for anxiety in dementia manual and to determine its feasibility in a pilot RCT. Methods/design: Phase I involves the development of a CBT for anxiety in dementia manual, through a process of (1) focus groups, (2) comprehensive literature reviews, (3) expert consultation, (4) a consensus conference and (5) field testing. Phase II involves the evaluation of the manual with 50 participants with mild to moderate dementia and anxiety (and their carers) in a pilot, two-armed RCT. Participants will receive either ten sessions of CBT or treatment as usual. Primary outcome measures are anxiety and costs. Secondary outcome measures are participant quality of life, behavioural disturbance, cognition, depression, mood and perceived relationship with the carer, and carer mood and perceived relationship with the person with dementia. Measures will be administered at baseline, 15 weeks and 6 months. Approximately 12 qualitative interviews will be used to gather service-users' perspectives on the intervention. Discussion: This study aims to determine the feasibility of CBT for people with anxiety and dementia and providedata on the effect size of the intervention in order to conduct a power analysis for a definitive RCT. The manual will be revised according to qualitative and quantitative findings. Its publication will enable its availability throughout the NHS and beyond. [ABSTRACT FROM AUTHOR]

Abstract: Background: Cognitive Stimulation Therapy (CST) is a psychosocial evidence-based group intervention for people with dementia recommended by the UK NICE guidelines. In clinical trials, CST has been shown to improve cognition and quality of life, but little is known about the best way of ensuring implementation of CST in practice settings. A recent pilot study found that a third of people who attend CST training go on to run CST in practice, but staff identified a lack of support as a key reason for the lack of implementation.Methods/design: There are three projects in this study: The first is a pragmatic multi-centre, randomised controlled trial (RCT) of staff training, comparing CST training and outreach support with CST training only; the second, the monitoring and outreach trial, is a phase IV trial that evaluates implementation of CST in practice by staff members who have previously had the CST manual or attended training. Centres will be randomised to receive outreach support. The primary outcome measure for both of these trials is the number of CST sessions run for people with dementia. Secondary outcomes include the number of attenders at sessions, job satisfaction, dementia knowledge and attitudes, competency, barriers to change, approach to learning and a controllability of beliefs and the level of adherence. Focus groups will assess staff members' perceptions of running CST groups and receiving outreach support. The third study involves monitoring centres running groups in their usual practice and looking at basic outcomes of cognition and quality of life for the person with dementia.Discussion: These studies assess the effects of outreach support on putting CST into practice and running groups effectively in a variety of care settings with people with dementia; evaluate the effectiveness of CST in standard clinical practice; and identify key factors promoting or impeding the successful running of groups.Trial registration: Clinical trial ISRCTN28793457 [ABSTRACT FROM AUTHOR]

Background: Improving the quality of care for people with dementia and their carers has become a national priority in many countries. Cognitive Stimulation Therapy (CST) groups can be beneficial in improving cognition and quality of life for people with dementia. The aim of the current study is to develop and evaluate a home-based individual Cognitive Stimulation Therapy (iCST) programme for people with dementia which can be delivered by their family carer. Methods: This multi-centre, pragmatic randomised controlled trial (RCT) will compare the effectiveness and cost-effectiveness of iCST for people with dementia with a treatment as usual control group. The intervention consists of iCST sessions delivered by a carer for 30 minutes, 3 times a week over 25 weeks. For people with dementia the primary outcome measures are cognition assessed by the ADAS-Cog, and quality of life assessed by QoL-AD. For carers, quality of life using the SF-12 is the primary outcome measure. Using a 5% significance level, comparison of 306 participants will yield 80% power to detect an effect size of 0.35 for cognition as measured by the ADAS-Cog, and quality of life as measured by the QoL-AD. Quality of life for the carer will be measured using the SF-12. The trial will include a cost-effectiveness analysis from a public sector perspective. Discussion: The UK Department of Health has recently stressed that improving access to psychological therapies is a national priority, but many people with dementia are unable to access psychological interventions. The development of a home-based individual version of CST will provide an easy to use, widely available therapy package that will be evaluated for effectiveness and cost-effectiveness in a multi centre RCT. [ABSTRACT FROM AUTHOR]

Background: Psychological treatments for dementia are widely used in the UK and internationally, but only rarely have they been standardised, adequately evaluated or systematically implemented. There is increasing recognition that psychosocial interventions may have similar levels of effectiveness to medication, and both can be used in combination. Cognitive Stimulation Therapy (CST) is a 7-week cognitive-based approach for dementia that has been shown to be beneficial for cognition and quality of life and is cost-effective, but there is less conclusive evidence for the effects of CST over an extended period. Methods/Design: This multi-centre, pragmatic randomised controlled trial (RCT) to assess the effectiveness and cost-effectiveness of Maintenance CST groups for dementia compares a intervention group who receive CST for 7 weeks followed by the Maintenance CST programme once a week for 24 weeks with the control group who receive CST for 7 weeks, followed by treatment as usual for 24 weeks. The primary outcome measures are quality of life of people with dementia assessed by the QoL-AD and cognition assessed by the ADAS-Cog. Secondary outcomes include the person with dementia's mood, behaviour, activities of daily living, ability to communicate and costs; as well as caregiver health-related quality of life. Using a 5% significance level, comparison of 230 participants will yield 80% power to detect a standardised difference of 0.39 on the ADAS-Cog between the groups. The trial includes a cost-effectiveness analysis from a public sector perspective. Discussion: A pilot study of longer-term Maintenance CST, offering 16 weekly sessions of maintenance following the initial CST programme, previously found a significant improvement in cognitive function (MMSE) for those on the intervention group. The study identified the need for a large-scale, multi-centre RCT to define the potential longer-term benefits of continuing the therapy. This study aims to provide definitive evidence of the potential efficacy of maintenance CST and establish how far the long-term benefits can be compared with antidementia drugs such as cholinesterase inhibitors. Trial Registration: ISRCTN26286067 [ABSTRACT FROM AUTHOR]

Background: Depression and dementia are major public health problems in the UK. Depression in early-stage dementia is very common and significantly reduces quality of life, speeds cognitive decline and increases functional impairment. Mindfulness-Based Cognitive Therapy (MBCT) is an effective depression prevention programme, and the National Institute for Clinical Excellence (NICE) has suggested that MBCT is a priority for implementation. Alongside this, there is emerging evidence demonstrating promising results in relation to the benefits of adapted mindfulness interventions for people with dementia, suggesting that it could be beneficial in reducing depressive symptoms and in slowing deterioration in cognitive functions such as sustained attention, distraction inhibition and task switching., Methods: The design is a single-blind randomised controlled feasibility trial. Participants with mild to moderate depression and early stages of dementia will be recruited from the participating memory services. Participants will receive either immediate or delayed access to an 8-week MBCT programme. Participants will be assessed by a blind assessor and complete cognitive and mood-related outcome measures before and after the intervention. This feasibility study will test the trial design and assess recruitment, retention, acceptability and adherence, as well as providing preliminary efficacy data., Discussion: This study will inform the design and sample size for a future full randomised controlled trial (RCT), which will be carried out to determine the effectiveness of the intervention in reducing depressive symptoms in people with early stages of dementia., Trial Registration: ClinicalTrials.gov ISRCTN16382776.