Collaborative knowledge sharing in developing and evaluating a training programme for health professionals to implement a social intervention in dementia research

Purpose: This study aims to explore the utility of collaborative knowledge sharing with stakeholders in developing and evaluating a training programme for health professionals to implement a social intervention in dementia research. Design/methodology/approach: The programme consisted of two phases: 1) development phase guided by the Buckley and Caple’s training model and 2) evaluation phase drew on the Kirkpatrick’s evaluation model. Survey and interview data was collected from health professionals, people with dementia and their supporters who attended the training programme, delivered or participated in the intervention. Qualitative data was analysed using the framework analysis. Findings: Seven health professionals participated in consultations in the development phase. In the evaluation phase, 20 intervention facilitators completed the post one-day training evaluations and three took part in the intervention interviews. Eight people with dementia and their supporters from the promoting independence in dementia feasibility study participated in focus groups interviews. The findings show that intervention facilitators were satisfied with the training programme. They learnt new knowledge and skills through an interactive learning environment and demonstrated competencies in motivating people with dementia to engage in the intervention. As a result, this training programme was feasible to train intervention facilitators. Practical implications: The findings could be implemented in other research training contexts where those delivering research interventions have professional skills but do not have knowledge of the theories and protocols of a research intervention. Originality/value: This study provided insights into the value of collaborative knowledge sharing between academic researchers and multiple non-academic stakeholders that generated knowledge and maximised power through building new capacities and alliances

Promoting independence in dementia: protocol for a feasibility trial of the PRIDE intervention for living well with dementia

Background: Dementia can lead to social exclusion, loss of identity and independence, due to deterioration in cognition and activities of daily living. The aim of the study is to investigate the feasibility of the Promoting Independence in Dementia (PRIDE) intervention, designed to facilitate independence in people with mild dementia. Methods and Results: This is a mixed-methods feasibility trial of the PRIDE, in preparation for a future randomised controlled trial. Up to 50 people with dementia will be recruited. Dementia advisors will deliver the three session intervention. Quantitative outcomes will be taken at baseline and up to three months post baseline. Fidelity checklists will assess fidelity to the intervention. Qualitative implementation data will be gathered in a series of post-intervention semi-structured interviews with staff and participants. This will include data to examine participant experiences of and engagement with the intervention, and other aspects of delivery such as recruitment of DAWs, fidelity and experiences of receiving and delivering the intervention. This study aims to: 1) establish and field test the PRIDE intervention; 2) determine the recruitment rate of sites, providers and participants; 3) assess fidelity in delivery of the intervention and engagement with people with dementia; 4) assess the feasibility and acceptability of outcome measure data and 5) assess the acceptability of the intervention by stakeholders. Discussion: There has been increased need for non-pharmacological interventions for mild dementia. The results of this feasibility study will allow us to plan for a definitive RCT of a three session dementia advisor led intervention for mild dementia

ICT-based applications to improve social health and social participation in older adults with dementia. A systematic literature review

Objectives: Information and communication technologies (ICT) developers, together with dementia experts have created several technological solutions to improve and facilitate social health and social participation and quality of life of older adults living with dementia. However, there is a need to carry out a systematic literature review that focuses on the validity and efficacy of these new technologies assessing their utility to promote ‘social health’ and ‘active ageing’ in people with dementia. Method: Searches in electronic databases identified 3824 articles of which 6 met the inclusion criteria and were coded according to their methodological approach, sample sizes, type of outcomes and results. Results: Six papers were identified reporting the use of 10 different interventions with people with dementia. Qualitative studies (four) showed a benefit of the use of technologies to foster social participation in people with dementia. At the same time, barriers to a widespread use of these technologies in this population were identified. A quantitative study and a mixed-method study with quantitative outcomes showed that ICT-based interventions promote more social behaviours than non-technology-based interventions. Conclusions: In the last years, several technological devices for living independently and fostering social health and social participation in people with dementia have been developed. However, specific outcome measures to assess social health and social participation are needed. Even though the analysed studies provided some evidence-base for the use of technology in this field, there is an urge to develop high quality studies and specific outcome measures

Promoting Independence in Dementia (PRIDE): A Feasibility Randomized Controlled Trial

Background: There is a need for interventions to foster and maintain independence for people with dementia to support community living, improve morale, and reduce stigma. We investigated a social intervention to promote living well and enhance independence for people with mild dementia.Methods: In this two arm parallel group, feasibility RCT at six sites in England, participants were randomized (1:1) to the PRIDE intervention (encompassing social, physical, and cognitive domains supported by a facilitator over three sessions) compared to usual care only. The main objective was to determine the feasibility of a main trial with respect to measures of recruitment, retention, and adherence to the intervention.Results: During a 7-month period, 402 people were invited to the trial, 148 were screened (37%, 95% confidence interval (CI)=32– 42%), 137 were eligible at pre-consent, 94 consented to the trial (69% of those eligible, 95% CI=60– 76%), and 92 were randomized (46 to each group). Of those allocated to the intervention, 42 (91%) received at least one of three intervention sessions. Outcome assessment follow-up visits were completed for 73 participants at 6 months (79%, 95% CI=70– 87%), and this was similar for both groups.Conclusion: A large multi-center trial of the PRIDE intervention in community-dwelling people with mild dementia is feasible using systematic recruitment strategies. The intervention was successfully delivered and well received by participants. Findings from this study will be used to refine the design and processes for a definitive RCT.Trial Registration: ISRCTN, ISRCTN11288961, registered on 23 October 2018

A Web-Based Self-management App for Living Well With Dementia: User-Centered Development Study

Background: Self-management, autonomy, and quality of life are key constructs in enabling people to live well with dementia. This population often becomes isolated following diagnosis, but it is important for them to feel encouraged to maintain their daily activities and stay socially active. Promoting Independence in Dementia (PRIDE) fosters social inclusion and greater dementia self-management through an interactive handbook. Objective: This study aimed to develop a paper-based PRIDE manual on a web-based platform. Methods: Two overarching stages were used to create the web-based version of PRIDE. The first was Preliminary Development, which encompassed tendering, preliminary development work, consultations, beta version of the website, user testing and consultation on beta version, and production of the final web-based prototype. The second stage was Development of the Final PRIDE App, which included 2 sprints and further user testing. Results: Through a lengthy development process, modifications were made to app areas such as the log-in process, content layout, and aesthetic appearance. Feedback from the target population was incorporated into the process to achieve a dementia-friendly product. The finished PRIDE app has defined areas for reading dementia-related topics, creating activity plans, and logging these completed activities. Conclusions: The PRIDE app has evolved from its initial prototype into a more dementia-friendly and usable program that is suitable for further testing. The finished version will be tested in a reach, effectiveness, adoption, implementation, and maintenance study, with its potential reach, effectiveness, and adoption explored. Feedback gathered during the reach, effectiveness, adoption, implementation, and maintenance study will lead to any further developments in the app to increase its applicability to the target audience and usability

Feasibility and acceptability evaluation of the PRIDE (Promoting Independence in Dementia) intervention for living well with dementia

Objectives: Post-diagnostic psychosocial interventions could play an important role in supporting people with mild dementia remain independent. The PRIDE intervention was developed to address this. Method: The mixed methods non-randomised, pre-post feasibility study occurred across England. Facilitators were recruited from the voluntary sector and memory services. Participants and their supporters took part in the 3-session intervention. Outcome measures were collected at baseline and follow-up. To evaluate acceptability, focus groups and interviews were conducted with a sub-sample of participants and facilitators. Results: Contextual challenges to delivery including national research governance changes, affecting recruitment of study sites. Thirty-four dyads consented, with 14 facilitators providing the intervention. Dyads took part in at least two sessions (79%), and 73% in all three. Outcome measures were completed by 79% without difficulty, with minimal missing data. No significant changes were found on pre and post assessments. Post-hoc analysis found moderate effect size improvements for self-management (SMAS instrument) in people with dementia (d=0 .41) and quality of life (EQ5D measure) in carers (d=0.40). Qualitative data indicated that dyads found PRIDE acceptable, as did intervention facilitators.Conclusions: The 3-session intervention was well accepted by participant-dyads and intervention facilitators. A randomised controlled trial of PRIDE would need to carefully consider recruitment potential across geographically varied settings, and site-stratification according to knowledge of contextual factors, such as the diversity of post-diagnostic services across the country. Letting sites themselves be responsible for identifying suitable intervention facilitators was successful. The self-report measures showed potential to be included in the main trial

Changing nurses’ views of the therapeutic environment: randomised controlled trial

Background Although patients value evidence-based therapeutic activities, little is known about nurses’ perceptions. Aims To investigate whether implementing an activities training programme would positively alter staff perceptions of the ward or be detrimental through the increased workload (trial registration: ISRCTN 06545047). Method We conducted a stepped wedge cluster randomised trial involving 16 wards with psychology-led nurse training as the intervention. The main outcome was a staff self-report measure of perceptions of the ward (VOTE) and secondary outcomes measuring potential deterioration were the Index of Work Satisfaction (IWS) and the Maslach Burnout Inventory (MBI). Data were analysed using mixed-effects regression models, with repeated assessments from staff over time. Results There were 1075 valid outcome measurements from 539 nursing staff. VOTE scores did not change over time (standardised effect size 0.04, 95% CI –0.09 to 0.18, P = 0.54), neither did IWS or MBI scores (IWS, standardised effect size 0.02, 95% CI –0.11 to 0.16, P = 0.74; MBI standardised effect size –0.09, 95% CI –0.24 to 0.06, P = 0.24). There was a mean increase of 1.5 activities per ward (95% CI –0.4 to 3.4, P = 0.12) and on average 6.3 more patients attended groups (95% CI –4.1 to 16.6, P = 0.23) following training. Staff feedback on training was positive. Conclusions Our training programme did not change nurses’ perceptions of the ward, job satisfaction or burnout. During the study period many service changes occurred, most having a negative impact through increased pressure on staffing, patient mix and management so it is perhaps unsurprising that we found no benefits or reduction in staff skill

Promoting Independence in Dementia (PRIDE): protocol for a feasibility randomised controlled trial.

BACKGROUND: Memory services often see people with early stage dementia who are largely independent and able to participate in community activities but who run the risk of reducing activities and social networks. PRIDE is a self-management intervention designed to promote living well and enhance independence for people with mild dementia. This study aims to examine the feasibility of conducting a definitive randomised trial comparing the clinical and cost-effectiveness of the PRIDE intervention offered in addition to usual care or with usual care alone. METHODS/DESIGN: PRIDE is a parallel, two-arm, multicentre, feasibility, randomised controlled trial (RCT). Eligible participants aged 18 or over who have mild dementia (defined as a score of 0.5 or 1 on the Clinical Dementia Rating Scale) who can participate in the intervention and provide informed consent will be randomised (1:1) to treatment with the PRIDE intervention delivered in addition to usual care, or usual care only. Participants will be followed-up at 3 and 6 month's post-randomisation. There will be an option for a supporter to join each participant. Each supporter will be provided with questionnaires at baseline and follow-ups at 3 to 6 months. Embedded qualitative research with both participants and supporters will explore their perspectives on the intervention investigating a range of themes including acceptability and barriers and facilitators to delivery and participation. The feasibility of conducting a full RCT associated with participant recruitment and follow-up of both conditions, intervention delivery including the recruitment, training, retention of PRIDE trained facilitators, clinical outcomes, intervention and resource use costs and the acceptability of the intervention and study related procedures will be examined. DISCUSSION: This study will assess whether a definitive randomised trial comparing the clinical and cost-effectiveness of whether the PRIDE intervention offered in addition to usual care is feasible in comparison to usual care alone, and if so, will provide data to inform the design and conduct of a future trial. TRIAL REGISTRATION: ISRCTN, ISRCTN11288961, registered on 23 October 2019, http://www.isrctn.com/ISRCTN12345678 Protocol V2.1 dated 19 June 2019

Psychosocial interventions for people with dementia: a synthesis of systematic reviews

Objectives: Over the last 10 years there has been a multitude of studies of psychosocial interventions for people with dementia. However, clinical services face a dilemma about which intervention should be introduced into clinical practice because of the inconsistency in some of the findings between different studies and the differences in the study qualities and trustworthiness of evidence. There was a need to provide a comprehensive summary of the best evidence to illustrate what works. Methods: A review of the systematic reviews of psychosocial interventions in dementia published between January 2010 and February 2016 was conducted. Results: Twenty-two reviews (8 physical, 7 cognitive, 1 physical/cognitive and 6 other psychosocial interventions) with a total of 197 unique studies met the inclusion criteria. Both medium to longer-term multi-component exercise of moderate to high intensity, and, group cognitive stimulation consistently show benefits. There is not sufficient evidence to determine whether psychological or social interventions might improve either mood or behaviour due to the heterogeneity of the studies and interventions included in the reviews. Conclusion: There is good evidence that multi-component exercise with sufficient intensity improves global physical and cognitive functions and activities of daily living skills. There is also good evidence that group based cognitive stimulation improves cognitive functions, social interaction and quality of life. This synthesis also highlights the potential importance of group activities to improve social integration for people with dementia. Future research should investigate longer-term specific outcomes, consider the severity and types of dementia, and investigate mechanisms of change

The development of the Promoting Independence in Dementia (PRIDE) intervention to enhance independence in dementia

© 2019 Yates et al. Objective: Support after a diagnosis of dementia may facilitate better adjustment and ongoing management of symptoms. The aim of the Promoting Independence in Dementia (PRIDE) study was to develop a postdiagnostic social intervention to help people live as well and as independently as possible. The intervention facilitates engagement in evidence-based stimulating cognitive, physical and social activities. Methods: Theories to promote adjustment to a dementia diagnosis, including theories of social learning and self-efficacy, were reviewed alongside self-management and the selective optimization model, to form the basis of the intervention. Analyses of two longitudinal databases of older adults, and qualitative analyses of interviews of older people, people with dementia, and their carers about their experiences of dementia, informed the content and focus of the intervention. Consensus expert review involving stakeholders was conducted to synthesize key components. Participants were sourced from the British NHS, voluntary services, and patient and public involvement groups. A tailored manual-based intervention was developed with the aim for this to be delivered by an intervention provider. Results: Evidence-based stimulating cognitive, physical, and social activities that have been shown to benefit people were key components of the proposed PRIDE intervention. Thirty-two participants including people with dementia (n=4), carers (n=11), dementia advisers (n=14), and older people (n=3) provided feedback on the drafts of the intervention and manual. Seven topics for activities were included (eg, "making decisions" and "getting your message across"). The manual outlines delivery of the intervention over three sessions where personalized profiles and plans for up to three activities are developed, implemented, and reviewed. Conclusion: A manualized intervention was constructed based on robust methodology and found to be acceptable to participants. Consultations with stakeholders played a key role in shaping the manualized PRIDE intervention and its delivery. Unlike most social interventions for dementia, the target audience for our intervention is the people with dementia themselves