Evaluating the implementation of interventions to improve independence in dementia

To understand effects of psychological and social interventions for people with dementia, it is necessary to understand whether interventions are delivered as planned (‘fidelity of delivery’) and engaged with. This thesis aimed to evaluate the implementation of two interventions for people with dementia: the ‘Promoting Independence in Dementia’ intervention (PRIDE) and the ‘Community Occupational Therapy in Dementia-UK’ intervention (COTiD-UK). Three stages were followed: (i) systematically reviewing measures of fidelity and engagement in complex, face-to-face health behaviour change interventions, (ii) developing and using reliable measures to assess fidelity of PRIDE and COTiD-UK, and engagement with PRIDE, and (iii) identifying factors influencing fidelity and engagement and developing recommendations to improve these behaviours. Intervention sessions were audio-recorded and reliably rated for fidelity against fidelity checklists developed for PRIDE and COTiD-UK. Additionally, for PRIDE, dementia advice workers (DAWs) and participants completed checklists after each session. To identify factors influencing fidelity of, and engagement with PRIDE, interviews were conducted with DAWs, people with dementia and their supporters and analysed using thematic analysis and content analysis (informed by the COM-B model). The Behaviour Change Wheel was used to develop recommendations to improve fidelity and engagement. Reliable fidelity checklists were developed for PRIDE and COTiD-UK. Both interventions were delivered with at least moderate fidelity. Participants reported high levels of engagement with PRIDE. Knowledge, providers’ attributes, ease of adaptation of PRIDE in relation to participants’ needs and logistical considerations influenced fidelity. Participants’ attributes, capability and opportunity influenced engagement. Recommendations to improve fidelity and engagement were developed to target barriers of opportunity and psychological capability. This thesis provides an applied example of how behavioural science can be used to evaluate and develop recommendations to improve the implementation of dementia interventions. If effective, recommendations may have the potential to improve implementation and help people to live well with dementia

Development of fidelity of delivery and enactment measures for interventions in communication disorders

OBJECTIVES: This study was part of a process evaluation for a single-blind, randomized controlled pilot study comparing Better Conversations with Primary Progressive Aphasia (BCPPA), an approach to communication partner training, with no speech and language therapy treatment. It was necessary to explore fidelity of delivery (delivery of intervention components) and intervention enactment (participants' use of intervention skills in the form of conversation behaviours comprising facilitators, that enhance the conversational flow, and barriers, that impeded the flow of conversation). This study aimed to: (1) Outline an adapted methodological process that uses video observation, to measure both fidelity of delivery and enactment. (2) Measure the extent to which the BCPPA pilot study was delivered as planned, and enacted. DESIGN: Observational methods were used alongside statistical analysis to explore the fidelity of intervention and enactment using video recordings obtained from the BCPPA pilot study. METHODS: A 5-step methodology, was developed to measure fidelity of delivery and enactment for the BCPPA study using video-recorded data. To identify delivery of intervention components, a random sample of eight video recorded and transcribed BCPPA intervention sessions was coded. To examine the enactment of conversation behaviours, 108 transcribed 10 -min-video recorded conversations were coded from 18 participants across the control and intervention group. RESULTS: Checklists and guidelines for measurement of fidelity of treatment delivery and coding spreadsheets and guidelines for measurement of enactment are presented. Local collaborators demonstrated 87.2% fidelity to the BCPPA protocol. Participants in the BCPPA treatment group increased their use of facilitator behaviours enacted in conversation from a mean of 13.5 pre-intervention to 14.2 post-intervention, whilst control group facilitators decreased from a mean of 15.5 to 14.4, over the same timescale. CONCLUSIONS: This study proposes a novel and robust methods, using video recorded intervention sessions and conversation samples, to measure both fidelity of intervention delivery and enactment. The learnings from this intervention are transferable to other communication interventions

How is Social Care Provided in Adult Prisons in England and Wales?

There is variation in provision of social care in prisons. Our research aimed to understand variation across adult prisons in England and Wales, including: (1) what social care is provided? (2) who delivers social care? (3) what peer support initiatives are used? (4) what social care indicators are relevant? and (5) are there differences between prison type and social care provision? We analysed Her Majesty’s Inspectorate of Prisons (HMIP) reports (published 2017–2020) from 102 prisons. From these reports we extracted and analysed data on social care provision. Elements of social care are not consistently delivered; need assessments (81.4 per cent) and referrals (75.5 per cent) were most frequently reported. Different providers (health care/social care/prison) deliver social care. Forty-one prisons (40.2 per cent) included peer support (formal to informal). We found no notable differences between prison categories and social care delivery, although, within category D prisons, a significantly larger proportion of those with a disability reported receiving support they needed. Inspection reports highlighted that prison social care should mirror community social care, but we could not fully evaluate this due to reporting issues. Social care provision varies; effectiveness of different models is not yet known. We provide recommendations to improve social care reporting within HMIP reports

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

Defining Coordinated Care for People with Rare Conditions: A Scoping Review.

INTRODUCTION: To coordinate care effectively for rare conditions, we need to understand what coordinated care means. This review aimed to define coordinated care and identify components of coordinated care within the context of rare diseases; by drawing on evidence from chronic conditions. METHODS: A systematic scoping review. We included reviews that reported or defined and outlined components of coordinated care for chronic or rare conditions. Thematic analysis was used to develop a definition and identify components or care coordination. Stakeholder consultations (three focus groups with patients, carers and healthcare professionals with experience of rare conditions) were held to further explore the relevance of review findings for rare conditions. RESULTS: We included 154 reviews (n = 139 specific to common chronic conditions, n = 3 specific to rare conditions, n = 12 both common/rare conditions). A definition of coordination was developed. Components were identified and categorised by those that: may need to be coordinated, inform how to coordinate care, have multiple roles, or that contextualise coordination. CONCLUSIONS: Coordinated care is multi-faceted and has both generic and context-specific components. Findings outline many ways in which care may be coordinated for both rare and common chronic conditions. Findings can help to develop and eventually test different ways of coordinating care for people with rare and common chronic conditions

The nature of decision-making in people living with dementia: a systematic review

The objectives of this systematic review were to: 1) understand how people living with dementia are involved in making decisions; 2) explore the different decisional styles and domains of decision-making that people living with dementia experience and 3) identify what influences the level of decisional involvement of people living with dementia. A systematic review of literature identified studies from Medline, PsycINFO, HAPI and CINAHL databases. Search terms related to decision-making and dementia. Qualitative and quantitative research designs were included. Appraisal of included studies was done using quality ratings. All studies focused on how decision-making took place. Extracted findings were synthesised narratively with concept mapping, conceptualisation and an exploration of connections between studies to develop an overall model of decision-making involvement Fifteen studies fully met the eligibility criteria (thirteen qualitative and two quantitative). All studies had moderate ( = 10) to high ( = 5) quality ratings. Participants were predominantly people living with dementia ( = 13), Parkinson's disease and stroke. The model of decision-making encompasses four decisional styles (managed autonomy, mutual, reductive and delegated) determined by different degrees of involvement from the person living with dementia and their supporter. The decisional style implemented was influenced by the presence or absence of background (the Freedom of Choice framework) and contextual factors (risk, relationships and resources). Decision-making in dementia is complex and influenced by many factors beyond cognitive impairment alone. This review indicates that decision-making in dementia takes place through decisional styles, determined by unique levels of involvement from people living with dementia and their carers

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