Improving quality of life for people with dementia in care homes: Making psychosocial interventions work

This is the author accepted manuscript. The final version is available from Cambridge University Press via the DOI in this recordPsychosocial interventions can improve behaviour and mood in people with dementia, but it is unclear how to maximise their effectiveness or acceptability in residential settings. Aims To understand what underlies the successful implementation of psychosocial interventions in care homes. Method Systematic review and meta-synthesis of qualitative research. Results The synthesis of 39 qualitative papers revealed that beneficial psychosocial interventions met the needs of people with dementia to connect with others, make a meaningful contribution and reminisce. Successful implementation rested on the active engagement of staff and family and the continuing provision of tailored interventions and support. This necessitated staff time, and raised issues around priorities and risk, but ultimately helped redefine staff attitudes towards residents and the caregiving role. Conclusions The findings from the meta-synthesis can help to inform the development and evaluation of psychosocial interventions in care homes and support their widespread implementation in clinical settings.National Institute for Health Research (NIHR

Using Meta-Ethnography to Synthesize Relevant Studies: Capturing the Bigger Picture in Dementia with Challenging Behavior within Families

In understanding the range and depth of people’s experiences, it is important to include the wide range of approaches which capture the richness within a given knowledge base. However, systematic reviews using quantitative data alone risk missing findings that can contribute to a better understanding of a research question. In response, meta-ethnography has emerged as a potentially useful method to synthesize and integrate both qualitative and quantitative data from different perspectives using qualitative methodology. In this case study, we describe how we have used meta-ethnography to better understand how families experience dementia. We address a particular issue of selecting the highest quality evidence across a range of epistemologies

Practitioners’ understanding of barriers to accessing specialist support by family carers of people with dementia in distress

Distressing symptoms in dementia are hard to manage for many family carers. This article explores practitioners' perceptions of the barriers to accessing skilled behaviour management support encountered by carers. A survey of cases referred to the English National Health Service (n = 5,360) was followed by in-depth group discussions and practitioner interviews. Data revealed that practitioners focused on care home residents or older people with mental health problems other than dementia, rather than community-dwelling people with dementia and families. Barriers to access included misperceptions about the nature of distressing behaviour affecting carers and structural limitations in the capacity of specialist services to respond to carers

Feasibility and acceptability evaluation of the Promoting Independence in Dementia (PRIDE) 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 Promoting Independence in Dementia (PRIDE) intervention was developed to address this. METHOD: The mixed methods non-randomized, 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 three-session intervention. Outcome measures were collected at baseline and follow-up. To evaluate acceptability, focus groups and interviews were conducted with a subsample of participants and facilitators. RESULTS: Contextual challenges to delivery including national research governance changes, affected 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 three-session intervention was well accepted by participant-dyads and intervention facilitators. A randomized 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

Apathy and Its Response to Antipsychotic Review and Nonpharmacological Interventions in People With Dementia Living in Nursing Homes: WHELD, a Factorial Cluster Randomized Controlled Trial

This is the author accepted manuscript. The final version is available from Elsevier via the DOI in this recordObjectives Apathy is common, impactful, and difficult to manage in people with dementia. We evaluated the efficacy of nonpharmacological interventions, exercise, and social interaction, in combination with antipsychotic review, to reduce apathy in people with dementia living in nursing homes in a cluster randomized controlled trial (RCT). Methods Well-being and health for people with dementia (WHELD) program included a 2 × 2 × 2 factorial cluster RCT involving people with dementia living in 16 nursing homes in the United Kingdom. All homes received training in person-centered care, and were randomized to receive antipsychotic review, social interaction, and exercise, either alone or in combinations. Apathy was one of the secondary outcomes of the WHELD trial, and it was measured by the Neuropsychiatric Inventory–nursing home version at baseline and 9 months (n = 273). We used multilevel mixed effects linear regression models to assess the impact of the interventions on apathy. Results Prevalence of apathy was 44.0% (n = 120; 95% confidence interval [CI] 38.1%–49.9%) at baseline. Severity of apathy had significant positive correlations with dementia severity, neuropsychiatric symptoms, depressive symptoms, agitation, and the needs of the people with dementia (P < .001). Antipsychotic review reduced antipsychotic use, but it significantly increased apathy (β = 5.37; SE = 0.91; P < .001). However, antipsychotic review in combination with either social interaction (β = −5.84; SE = 1.15; P < .001) or exercise (β = −7.54; SE = 0.93; P < .001) significantly reduced apathy. Conclusions Antipsychotic review can play a significant role in improving apathy in people with dementia living in nursing homes, when combined with psychosocial interventions such as social interaction and exercise. Guidance must be adapted to reflect this subtlety in care.National Institute for Health Research (NIHR

Naming and Framing the Behavioural and Psychological Symptoms of Dementia (BPSD) Paradigm: Professional Stakeholder Perspectives

Background: Behavioural and Psychological Symptoms of Dementia and Challenging Behaviour in dementia are just two of a variety of terms for a complex paradigm that covers the most distressing and costly aspects of the condition. The terminology used to describe these aspects can influence what is measured as outcomes and what is considered as evidence of improvement. Unhelpful or outmoded narratives could be a barrier to developing innovative interventions or in determining what works for whom. This UK study explored professional opinions about commonly used terminology in this paradigm. Methods: This mixed methods study involved wide-ranging multidisciplinary professionals and stakeholders. A consultation event was attended by 74 multidisciplinary professionals. Written feedback from this event was used to develop an online survey. The survey was disseminated using a cascading snowballing method through multi-professional groups. Survey respondents ranked preferences for terms and stated reasons for their choices. Thematic content analysis was used to explore patterns of meaning. Results: From the consultation event a list of 14 common terms were generated and formed the basis of the on-line survey. 378 respondents completed the survey. There was a wide variation across professional groups on preferred terminology with 'unmet need', 'behaviour that challenges', 'BPSD' and 'stress and distress' being ranked as the first choice by the majority. Five themes emerged from the qualitative data, revealing important nuances and challenges in relation to terminology. Conclusions: Words have the power to shape thoughts, beliefs, emotions and behaviour. In line with the international advocacy movement, our UK findings suggest that future international consensus should, in addition to multi-professional and stakeholder experts, involve wide-ranging groups of people with dementia, their families and advocates. This would ensure that we use descriptive language, that does not objectify peoples' experience and that can be easily understood by all

Developing a model of best practice for teams managing crisis in people with dementia: a consensus approach

BACKGROUND: Teams delivering crisis resolution services for people with dementia and their carers provide short-term interventions to prevent admission to acute care settings. There is great variation in these services across the UK. This article reports on a consensus process undertaken to devise a Best Practice Model and evaluation Tool for use with teams managing crisis in dementia. METHODS: The Best Practice Model and Tool were developed over a three stage process: (i) Evidence gathering and generation of candidate standards (systematic review and scoping survey, interviews and focus groups); (ii) Prioritisation and selection of standards (consultation groups, a consensus conference and modified Delphi process); (iii) Refining and operationalising standards (consultation group and field-testing). RESULTS: One hundred sixty-five candidate standards arose from the evidence gathering stage; were refined and reduced to 90 through a consultation group exercise; and then reduced to 50 during the consensus conference and weighted using a modified Delphi process. Standards were then operationalised through a clinical consultation group and field-tested with 11 crisis teams and 5 non-crisis teams. Scores ranged from 48 to 92/100. The median score for the crisis teams was 74.5 (range 67-92), and the median score for non-crisis teams was 60 (range 48-72). CONCLUSIONS: With further psychometric testing, this Best Practice Model and Tool will be ideal for the planning, improvement and national benchmarking of teams managing dementia crises in the future

Protocol for the development of an evidence-based ‘Best Practice Model’ for Teams Managing Crisis in Dementia

Background: Teams working in the community to manage crisis in dementia are available, but with widely varying models of practice it is difficult to determine the effectiveness of such teams. The aim of this study is to develop a model of best practice for dementia services managing crisis, as well as a set of resources to help teams implement this model: these will be (respectively) the Best Practice Tool and Toolkit, to improve the effectiveness of crisis teams working with older people with dementia and their carers. Objective: To detail a protocol describing the development a ‘Best Practice Model,’ to include a Best Practice Tool and Toolkit intended to measure and improve practice delivery. Methods: This paper describes the protocol for a prospective study which will use qualitative methods to establish an understanding of current practice to develop a ‘Best Practice Model,’ to include a Best Practice Tool and Toolkit intended to measure and improve practice delivery. Participants (people with dementia, carers, staff members and stakeholders) from a variety of geographical areas, with a broad experience of crisis and non-crisis working, will be purposively selected to participate in qualitative methodology including interviews, focus groups, a consensus workshop, and development and field testing of both the Best Practice Tool and Toolkit. Results: Not applicable as protocol is describing a prospective study for development of a 'Best Practice Model' for Teams Managing Crisis in Dementia. Conclusions: This is the first study to systematically explore the requirements needed to fulfil effective and appropriate home management for people with dementia and their carers at a time of mental health crisis, as delivered by Teams Managing Crisis in Dementia (TMCDs). This systematic approach to development will support greater acceptability and validity of the Best Practice Tool and Toolkit and lay the foundation for a large scale trial with TMCDs across England to investigate effects on practice and impact on service provision, and associated experiences of people with dementia and their carers. Clinical Trial: Not applicabl

Support at Home: Interventions to Enhance Life in Dementia (SHIELD) – evidence, development and evaluation of complex interventions

Background: Dementia is a national priority and this research addresses the Prime Minister’s commitment to dementia research as demonstrated by his 2020 challenge and the new UK Dementia Research Institute. In the UK > 800,000 older people have dementia. It has a major impact on the lives of people with dementia themselves, on the lives of their family carers and on services, and costs the nation £26B per year. Pharmacological cures for dementias such as Alzheimer’s disease are not expected before 2025. If no cure can be found, the ageing demographic will result in 2 million people living with dementia by 2050. People with dementia lose much more than just their memory and their daily living skills; they can also lose their independence, their dignity and status, their confidence and morale, and their roles both within the family and beyond. They can be seen as a burden by society, by their families and even by themselves, and may feel unable to contribute to society. This programme of research aims to find useful interventions to improve the quality of life of people with dementia and their carers, and to better understand how people with dementia can be supported at home and avoid being admitted to hospital. Objectives: (1) To develop and evaluate the maintenance cognitive stimulation therapy (MCST) for people with dementia; (2) to develop the Carer Supporter Programme (CSP), and to evaluate the CSP and Remembering Yesterday, Caring Today (RYCT) for people with dementia both separately and together in comparison with usual care; and (3) to develop a home treatment package (HTP) for dementia, to field test the HTP in practice and to conduct an exploratory trial. Methods: (1) The MCST programme was developed for people with dementia based on evidence and qualitative work. A randomised controlled trial (RCT) [with a pilot study of MCST plus acetylcholinesterase inhibitors (AChEIs)] compared MCST with cognitive stimulation therapy (CST) only. The MCST implementation study conducted a trial of outreach compared with usual care, and assessed implementation in practice. (2) The CSP was developed based on existing evidence and the engagement of carers of people with dementia. The RCT (with internal pilot) compared the CSP and reminiscence (RYCT), both separately and in combination, with usual care. (3) A HTP for dementia, including the most promising interventions and components, was developed by systematically reviewing the literature and qualitative studies including consensus approaches. The HTP for dementia was evaluated in practice by conducting in-depth field testing. Results: (1) Continuing MCST improved quality of life and improved cognition for those taking AChEIs. It was also cost-effective. The CST implementation studies indicated that many staff will run CST groups following a 1-day training course, but that outreach support helps staff go on to run maintenance groups and may also improve staff sense of competence in dementia care. The study of CST in practice found no change in cognition or quality of life at 8-month follow-up. (2) The CSP/RYCT study found no benefits for family carers but improved quality of life for people with dementia. RYCT appeared beneficial for the quality of life of people with dementia but at an excessively high cost. (3) Case management for people with dementia reduces admissions to long-term care and reduces behavioural problems. In terms of managing crises, staff suggested more costly interventions, carers liked education and support, and people with dementia wanted family support, home adaptations and technology. The easy-to-use home treatment manual was feasible in practice to help staff working in crisis teams to prevent hospital admissions for people with dementia. Limitations: Given constraints on time and funding, we were unable to compete the exploratory trial of the HTP package or to conduct an economic evaluation. Future research: To improve the care of people with dementia experiencing crises, a large-scale clinical trial of the home treatment manual is needed. Conclusion: There is an urgent need for effective psychosocial interventions for dementia. MCST improved quality of life and was cost-effective, with benefits to cognition for those on AChEIs. MCST was feasible in practice. Both CSP and RYCT improved the quality of life of people with dementia, but the overall costs may be too high. The HTP was useful in practice but requires evaluation in a full trial. Dementia care research may improve the lives of millions of people across the world. Trial registrations: Current Controlled Trials ISRCTN26286067 (MCST), ISRCTN28793457 (MCST implementation) and ISRCTN37956201 (CSP/RYCT). Funding: This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 5, No. 5. See the NIHR Journals Library website for further project information

Development of an Evidence-Based Best Practice Model for Teams Managing Crisis in Dementia: Protocol for a Qualitative Study

Background: Teams working in the community to manage crisis in dementia are available, but with widely varying models of practice it is difficult to determine the effectiveness of such teams. The aim of this study is to develop a model of best practice for dementia services managing crisis, as well as a set of resources to help teams implement this model: these will be (respectively) the Best Practice Tool and Toolkit, to improve the effectiveness of crisis teams working with older people with dementia and their carers. Objective: To detail a protocol describing the development a ‘Best Practice Model,’ to include a Best Practice Tool and Toolkit intended to measure and improve practice delivery. Methods: This paper describes the protocol for a prospective study which will use qualitative methods to establish an understanding of current practice to develop a ‘Best Practice Model,’ to include a Best Practice Tool and Toolkit intended to measure and improve practice delivery. Participants (people with dementia, carers, staff members and stakeholders) from a variety of geographical areas, with a broad experience of crisis and non-crisis working, will be purposively selected to participate in qualitative methodology including interviews, focus groups, a consensus workshop, and development and field testing of both the Best Practice Tool and Toolkit. Results: Not applicable as protocol is describing a prospective study for development of a 'Best Practice Model' for Teams Managing Crisis in Dementia. Conclusions: This is the first study to systematically explore the requirements needed to fulfil effective and appropriate home management for people with dementia and their carers at a time of mental health crisis, as delivered by Teams Managing Crisis in Dementia (TMCDs). This systematic approach to development will support greater acceptability and validity of the Best Practice Tool and Toolkit and lay the foundation for a large scale trial with TMCDs across England to investigate effects on practice and impact on service provision, and associated experiences of people with dementia and their carers. Clinical Trial: Not applicable