Lessons learned from the impact of Covid-19 on the work of disability support organisations that support employers of social care personal assistants in England.

Social care Personal Assistants (PAs) are directly employed by individuals to assist with activities of daily living such as help or support with personal care, shopping, household tasks and community participation. This option is encouraged by UK public funding. In England, disabled people's support organisations initially offered assistance with such arrangements, although numbers doing this have declined. The Covid-19 pandemic provided the opportunity to ask those remaining organisations providing support for PA employers about their activities during this time and the questions being posed to them by PA employers. This paper reports data from 15 interviews undertaken March-July 2021 with disability support organisation representatives. We identified one overarching theme 'Working to prevent and challenge marginalisation of PA employers', with three related subthemes: (1) Advocating for the voice of a forgotten group; (2) Needing to be proactive and (3) Adapting to new tasks and ways of working. Participant accounts focused on representing the needs of disabled people to the authorities and providing concise, timely and accurate information to PA employers, particularly around the use of public funds during Covid-19. Remote working amplified the digital-divide, resulting in these organisations working hard to ensure PA employers received important information about their support options. Befriending services and Covid-hubs were established by some organisations to reduce isolation and risks of poor mental health amongst PA employers. Many of the challenges facing PA employers existed pre-pandemic but were perceived to have been heightened during it, reflecting the value of and need for the work of these local support organisations. Our findings suggest areas where effective contingency planning drawn from closer collaboration between disability support organisations and central and local government might usefully be focussed. The potential for specific services or organisations to be commissioned to provide such support is discussed.

How does the delivery of paid home care compare to the care plan for clients living with dementia?

Many people living with dementia choose to remain in their own homes, supported by home-care workers, who provide care that is specified in care plans. We explored how care plans of clients living with dementia, compared with ethnographic observations of home care they received. In a secondary, reflexive thematic analysis, we reviewed care plans for 17 clients living with dementia and transcripts from 100 h of observations with 16 home-care workers delivering care to them. Our overarching theme was: Care plans as a starting point but incomplete repository. Clients' care plans provided useful background information but did not reflect a wealth of knowledge home-care workers built through practice. Two sub-themes described: (a) Person-centred care planning: whether and how the care plan supported tailoring of care to clients' needs and (b) Filling in the gaps: home-care workers often worked beyond the scope of vague, incomplete or out-of-date care plans. We found considerable inconsistencies between care plans and the care that was delivered. Care plans that were comprehensive about care needs, and rich in person-specific information aided the delivery of person-centred care. Lack of documentation was sometimes associated with observed failures in person-centred care, as helpful information and strategies were not shared. Including information in care plans about how, as well as what care tasks, should be completed, and frequently discussing and updating care plans can create more person-centred plans that reflect changing needs. Electronic care planning systems may support this.

Time to reflect is a rare and valued opportunity; a pilot of the NIDUS-professional dementia training intervention for homecare workers during the Covid-19 pandemic.

Most people living with dementia want to continue living in their own home for as long as possible and many rely on support from homecare services to do so. There are concerns that homecare often fails to meet the needs of clients with dementia, but there is limited evidence regarding effective interventions to improve its delivery for this client group. We aimed to assess whether a co-designed, 6-session dementia training intervention for homecare workers (NIDUS-professional) was acceptable and feasible. Facilitated training sessions were delivered over 3 months, followed by 3, monthly implementation meetings to embed changes in practice. Two trained and supervised facilitators without clinical qualifications delivered the intervention via group video-calls during Oct 2020-March 2021 to a group of seven homecare workers from one agency in England. Participants provided qualitative feedback 3- and 6-months post intervention. Qualitative interview data and facilitator notes were integrated in a thematic analysis. Adherence to the intervention and fidelity of delivery were high, indicating that it was acceptable and feasible to deliver in practice. Thirty of a possible 42 (71.4%) group sessions were attended. In our thematic analysis we report one over-arching theme: 'Having time and space to reflect is a rare opportunity'. Within this we identified four subthemes (Having time to reflect is a rare opportunity; Reflecting with peers enhances learning; Reflection and perspective taking can improve care; Recognising skills and building confidence) through which we explored how participants valued the intervention to discuss their work and learn new skills. Attendance was lower for the implementation sessions, perhaps reflecting participants' lack of clarity about their purpose. We used our findings to consider how we can maintain positive impacts of the manualised sessions, so that these are translated into tangible, scalable benefits for people living with dementia and the homecare workforce. A randomised feasibility trial is underway.

Co-designing complex interventions with people living with dementia and their supporters.

BACKGROUND AND OBJECTIVES: We engaged people living with dementia, family carers and health and social care professionals in co-designing two dementia care interventions: for family carers and people living with dementia (New Interventions for Independence in Dementia Study (NIDUS)-family and home-care workers (NIDUS-professional training programme). RESEARCH DESIGN AND METHODS: Over October 2019-March 2020, we invited public and patient (PPI) and professional members of our NIDUS co-design groups to complete the PPI Engagement Evaluation Tool (designed to assess engagement activities), and non-professional PPI members to participate in qualitative telephone interviews. We thematically analysed and integrated mixed-methods findings. RESULTS: Most (15/20; 75%) of the PPI members approached participated. We identified four themes: (1) Creating the right atmosphere: participants found group meetings positive and enabling, though one health professional was unsure how to position themselves within them; (2) Participants influencing the outcome: while most members felt that they had some influence, for one carer consultation seemed too late to influence; (3) Having the right information: several carers wanted greater clarity and more regular updates from researchers; (4) Unique challenges for people living with dementia: memory problems presented challenges in engaging with substantial information, and within a large group. DISCUSSION AND IMPLICATIONS: We reflect on the importance of providing accessible, regular updates, managing power imbalances between co-design group members with lived and professional experiences; and ensuring needs and voices of people living with dementia are prioritised. We encourage future studies to incorporate evaluations of co-design processes into study design.

'You can't just put somebody in a situation with no armour'. An ethnographic exploration of the training and support needs of homecare workers caring for people living with dementia.

BACKGROUND: Homecare workers carry out complex work with people living with dementia, while under-supported, undervalued and undertrained. In this ethnographic study, we explore the skills, training and support needs of homecare workers supporting people living with dementia. RESEARCH DESIGN AND METHODS: We conducted 82 interviews with people living with dementia (n = 11), family caregivers (n = 22), homecare staff (n = 30) and health and social care professionals (n = 19) and conducted 100-hours of participant observations with homecare workers (n = 16). We triangulated interview and observational findings and analysed data thematically. RESULTS: We developed four themes: 1) 'Navigating the homecare identity and role': describing challenges of moving between different role identities and managing associated expectations, 2) 'Developing and utilising relational and emotional skills': boundaries between caring and getting emotionally involved felt blurred and difficult to manage, 3) 'Managing clients who resist care': homecare workers experienced clients' reactions as challenging and felt "thrown to the wolves" without sufficient training, and 4) 'Drawing on agency and team support': homecare work could be isolating, with no shared workplace, busy schedules and limited opportunity for peer support. DISCUSSION AND IMPLICATIONS: It is important that training and support for homecare workers addresses the relational, emotional and rights-based aspects of the role. Where a flexible, responsive, person-centred service is required, corresponding training and support is needed, alongside organisational practices, taking account of the broader context of the homecare sector.

Supporting independence at home for people living with dementia: a qualitative ethnographic study of homecare.

PURPOSE: The aim of this ethnographic study was to investigate how homecare workers support or inhibit independence in people living with dementia. METHODS: We undertook 100 h of participant observations with homecare workers (n = 16) supporting people living with dementia (n = 17); and 82 qualitative interviews with people living with dementia (n = 11), family carers (n = 22), homecare managers and support staff (n = 11), homecare workers (n = 19) and health and social care professionals (n = 19). We triangulated data and analysed findings thematically. RESULTS: We developed three themes: (1) independence and the home environment, highlighting ongoing negotiations between familiarity, suitability and safety for care; (2) independence and identity, exploring how homecare workers' understanding of their clients' identity can enable active participation in tasks and meaningful choices; and (3) independence and empowerment, considering the important position of homecare workers to advocate for clients living with dementia while navigating authoritative power amongst proxy decision-makers. CONCLUSION: We consider that person-centred care should also be home-centred, respecting the client's home as an extension of self. Homecare workers can use their understanding of clients' identities, alongside skills in providing choice and developing relationships of interdependence to engage clients in everyday tasks. Homecare workers are well placed to advocate for their client's voice within the care network, although their ability to do so is limited by their position within power structures.

A mixed-methods feasibility study of a goal-focused manualised intervention to support people with dementia to stay living independently at home with support from family carers: NIDUS (New Interventions for Independence in Dementia Study) Family.

OBJECTIVES: To examine the feasibility and acceptability of NIDUS-Family, a 6-8 session manualised, individually tailored, modular intervention supporting independence at home for people with dementia; and explore participants' and facilitators' experiences of the intervention. METHOD: In this single group multi-site feasibility study, trained, supervised non-clinically qualified graduates (facilitators) delivered NIDUS-Family to family carer and people living with dementia dyads. We recruited participants from GP practices and memory services in London and Bradford. We completed quantitative outcomes pre- and post-intervention; and conducted qualitative interviews with participants and facilitators. Our pre-specified main outcomes were proportion of potential participants approached who agreed to participate, intervention adherence and acceptability to family carers, and facilitator fidelity to the manual. RESULTS: We recruited 16 dyads (57% of those approached); 12 (75%) completed the intervention. Of 12 participants rating intervention acceptability, 9 (75%) agreed or strongly agreed that it had helped; 2 (18%) neither agreed nor disagreed and 1 (8%) disagreed. Mean facilitator fidelity was high (81.5%). Dyads set on average 3.9 goals; these most commonly related to getting out and about and increasing activity/hobby participation (n = 10); carer wellbeing (n = 6), managing physical complaints (n = 6); meal preparation/cooking (n = 5); and reducing irritability, frustration or aggression (n = 5). Almost all secondary outcomes changed in a direction indicating improvement. In our qualitative analysis we identified three overarching themes; relationships facilitate change, goal-focused versus manualised approach and balancing the needs of carers and people with dementia. CONCLUSION: NIDUS-Family was feasible and acceptable to participants. Following refinements, testing in a pragmatic trial is underway.

Exploring how people with dementia can be best supported to manage long-term conditions: a qualitative study of stakeholder perspectives.

OBJECTIVES: To explore how the self-management of comorbid long-term conditions is experienced and negotiated by people with dementia and their carers. DESIGN: Secondary thematic analysis of 82 semi-structured interviews. SETTING: Community settings across the United Kingdom. PARTICIPANTS: 11 people with dementia, 22 family carers, 19 health professionals and 30 homecare staff. RESULTS: We identified three overarching themes: (1) The process of substituting self-management: stakeholders balanced the wishes of people with dementia to retain autonomy with the risks of lower adherence to medical treatments. The task of helping a person with dementia to take medication was perceived as intermediate between a personal care and a medical activity; rules about which professionals could perform this activity sometimes caused conflict. (2) Communication in the care network: family carers often communicated with services and made decisions about how to implement medical advice. In situations where family carers or homecare workers were not substituting self-management, it could be challenging for general practitioners to identify changes in self-management and decide when to intervene. (3) Impact of physical health on and from dementia: healthcare professionals acknowledged the inter-relatedness of physical health and cognition to adapt care accordingly. Some treatments prescribed for long-term conditions were perceived as unhelpful when not adapted to the context of dementia. Healthcare professionals and homecare workers sometimes felt that family carers were unable to accept that available treatments may not be helpful to people with dementia and that this sometimes led to the continuation of treatments of questionable benefit. CONCLUSION: The process of substituting self-management evolves with advancement of dementia symptoms and relies on communication in the care network, while considering the impact on and from dementia to achieve holistic physical health management. Care decisions must consider people with dementia as a whole, and be based on realistic outcomes and best interests.

Patient and befriender experiences of participating in a befriending programme for adults with psychosis: a qualitative study.

BACKGROUND: Befriending is a popular form of volunteering in healthcare, and research suggests that it can be beneficial for people with mental illness. This study aimed to explore the experiences of a large sample of volunteer befrienders and patients who participated in the VOLUME trial, testing the efficacy of a structured befriending programme for individuals with psychosis. This is the first study to explore the specific challenges and benefits of befriending in both volunteers and patients in this population within the same programme. METHODS: A series of in-depth semi-structured interviews were conducted with 34 volunteer befrienders and 28 participating patients. All participants who had taken part in at least one befriending session were invited to be interviewed about their experiences with the aim of including a wide range of views, including those who were more or less engaged with the befriending programme. The data were analysed using Thematic Analysis. RESULTS: Four broad themes were developed from the analysis of the befriender and patient interviews which, although were largely discrete, captured the overall experiences of participating in the befriending programme: 1) Bridging the gap, 2) A genuine relationship that developed over time, 3) A big commitment, and 4) A flexible approach. CONCLUSIONS: These results further support that, befriending programmes for individuals with psychosis can be a worthwhile experience for both befrienders and patients. However, participation also requires perseverance and flexibility from both sides. Different factors, such as incorporating participant preferences for frequency of meetings, have to be considered in the development and management of a befriending programme in order to provide effective support to both befrienders and patients.

"I just keep thinking that I don't want to rely on people." a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives.

BACKGROUND: Most people living with dementia want to remain in their own homes, supported by family and paid carers. Care at home often breaks down, necessitating transition to a care home and existing interventions are limited. To inform the development of psychosocial interventions to enable people with dementia to live well for longer at home, we qualitatively explored the views of people living with dementia, family carers and health and social care professionals, on how to achieve and maintain independence at home and what impedes this. METHODS: We conducted an inductive thematic analysis of qualitative interviews with 11 people living with dementia, 19 professionals and 22 family carers in England. RESULTS: We identified four overarching themes: being in a safe and familiar environment, enabling not disabling care, maintaining relationships and community connectedness, and getting the right support. For people living with dementia, the realities of staying active were complex: there was a tension between accepting support that enabled independence and a feeling that in doing so they were accepting dependency. Their and professionals' accounts prioritised autonomy and 'living well with dementia', while family carers prioritised avoiding harm. Professionals promoted positive risk-taking and facilitating independence, whereas family carers often felt they were left holding this risk. DISCUSSION: Psychosocial interventions must accommodate tensions between positive risk-taking and avoiding harm, facilitating autonomy and providing support. They should be adaptive and collaborative, combining self-management with flexible support. Compassionate implementation of rights-based dementia care must consider the emotional burden for family carers of supporting someone to live positively with risk.

"In the Bengali Vocabulary, There Is No Such Word as Care Home": Caring Experiences of UK Bangladeshi and Indian Family Carers of People Living With Dementia at Home.

BACKGROUND AND OBJECTIVES: We aimed to explore experiences of South Asian carers of people with dementia receiving health or social care in the United Kingdom, purposively recruited to encompass a range of migration, economic and cultural experiences. While previous work in this area has reported carers' understanding of, and attitudes to dementia, we explored how carers' cultural identities and values influenced their experiences, negotiation of the caring role and relationship with services. RESEARCH DESIGN AND METHODS: We conducted semi-structured interviews with 10 Bangladeshi and Indian family carers of people living with dementia at home. We recruited participants from community settings in London and Bradford, UK. Interviews were audio recorded, transcribed and thematically analyzed. RESULTS: We identified 4 themes: an expectation and duty to care, expectation and duty as a barrier to accessing formal care (family carer reluctance, care recipient reluctance, and service organization), culturally (in)sensitive care, and the importance of support from informal care networks. DISCUSSION AND IMPLICATIONS: Interviewees described tensions between generations with different understandings of familial care obligations. Expectations to manage led to burden and guilt, and the cost of caring, in terms of lost employment and relationships was striking. Unlike in previous studies, interviewees wanted to engage and be supported by services, but were frequently offered care models they could not accept. There was a tension between a state-provided care system obliged to provide care when there are no alternatives, and family carers who feel a duty to always provide alternatives. Informal social networks often provided valued support.

Developing the New Interventions for independence in Dementia Study (NIDUS) theoretical model for supporting people to live well with dementia at home for longer: a systematic review of theoretical models and Randomised Controlled Trial evidence.

PURPOSE: To build an evidence-informed theoretical model describing how to support people with dementia to live well or for longer at home. METHODS: We searched electronic databases to August 2018 for papers meeting predetermined inclusion criteria in two reviews that informed our model. We scoped literature for theoretical models of how to enable people with dementia to live at home independently, with good life quality or for longer. We systematically reviewed Randomised Controlled Trials (RCTs) reporting psychosocial intervention effects on time lived with dementia at home. Two researchers independently rated risk of bias. We developed our theoretical model through discussions with experts by personal, clinical and academic experiences, informed by this evidence base. RESULTS: Our scoping review included 52 studies. We divided models identified into: values and approaches (relational and recovery models; optimising environment and activities; family carer skills and support); care strategies (family carer-focused; needs and goal-based; self-management); and service models (case management; integrated; consumer-directed). The 11 RCTs included in our systematic review, all judged at low risk of bias, described only two interventions that increased time people with dementia lived in their own homes. These collectively encompassed all these components except for consumer-directed and integrated care. We developed and revised our model, using review evidence and expert consultation to define the final model. CONCLUSIONS: Our theoretical model describes values, care strategies and service models that can be used in the design of interventions to enable people with dementia to live well and for longer at home. TRIAL REGISTRATION: PROSPERO 2018 registration number: CRD42018099693 (scoping review). PROSPERO 2018 registration number: CRD42018099200 (RCT systematic review).

Clinical and social factors associated with increased risk for involuntary psychiatric hospitalisation: a systematic review, meta-analysis, and narrative synthesis.

BACKGROUND: Use of involuntary psychiatric hospitalisation varies widely within and between countries. The factors that place individuals and populations at increased risk of involuntary hospitalisation are unclear, and evidence is needed to understand these disparities and inform development of interventions to reduce involuntary hospitalisation. We did a systematic review, meta-analysis, and narrative synthesis to investigate risk factors at the patient, service, and area level associated with involuntary psychiatric hospitalisation of adults. METHODS: We searched MEDLINE, PsycINFO, Embase, and the Cochrane Controlled Clinical Register of Trials from Jan 1, 1983, to Aug 14, 2019, for studies comparing the characteristics of voluntary and involuntary psychiatric inpatients, and studies investigating the characteristics of involuntarily hospitalised individuals in general population samples. We synthesised results using random effects meta-analysis and narrative synthesis. Our review follows Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and is registered on PROSPERO, CRD42018095103. FINDINGS: 77 studies were included from 22 countries. Involuntary rather than voluntary hospitalisation was associated with male gender (odds ratio 1·23, 95% CI 1·14-1·32; p<0·0001), single marital status (1·47, 1·18-1·83; p<0·0001), unemployment (1·43, 1·07-1·90; p=0·020), receiving welfare benefits (1·71, 1·28-2·27; p<0·0001), being diagnosed with a psychotic disorder (2·18, 1·95-2·44; p<0·0001) or bipolar disorder (1·48, 1·24-1·76; p<0·0001), and previous involuntary hospitalisation (2·17, 1·62-2·91; p<0·0001). Using narrative synthesis, we found associations between involuntary psychiatric hospitalisation and perceived risk to others, positive symptoms of psychosis, reduced insight into illness, reduced adherence to treatment before hospitalisation, and police involvement in admission. On a population level, some evidence was noted of a positive dose-response relation between area deprivation and involuntary hospitalisation. INTERPRETATION: Previous involuntary hospitalisation and diagnosis of a psychotic disorder were factors associated with the greatest risk of involuntary psychiatric hospitalisation. People with these risk factors represent an important target group for preventive interventions, such as crisis planning. Economic deprivation on an individual level and at the population level was associated with increased risk for involuntary hospitalisation. Mechanisms underpinning the risk factors could not be identified using the available evidence. Further research is therefore needed with an integrative approach, which examines clinical, social, and structural factors, alongside qualitative research into clinical decision-making processes and patients' experiences of the detention process. FUNDING: Commissioned by the Department of Health and funded by the National Institute of Health Research (NIHR) via the NIHR Mental Health Policy Research Unit.

A systematic review of observational studies of adult home care.

The home-care workforce is in high demand globally. Home-care workers provide care for people at home, including practical and personal care, as well as other tasks such as medication management. We conducted a systematic review with the aims of understanding methods of observation that have been employed to study home care and to explore how these methods have enabled researchers to understand the quality of home care. We searched the literature using PubMed and CINAHL databases in May 2018, with no limits applied to date of publication. We searched for MeSH terms of 'Home Care Services', 'Home Health Care', 'Home Nursing' and 'Observation*'. Across 15 eligible studies, the types of observation methods employed were categorised as structured, guided and unstructured. The characteristics of these methods, such as the level of participation adopted by the observer, varied across the studies. Three themes were developed through a narrative synthesis of the included studies' findings: 'The impact of care delivery and organisational factors', 'Observing relationships and communications', and 'People and places behind closed doors'. We conclude that methods of observation are a fairly novel, yet rich and meaningful way of exploring home-care practice. Researchers undertaking observations should consider elements such as the number of researchers observing and the potential for variations, how and when to record the observations, possible triangulation of data, the researcher's reflective stance as an observer, as well as ethical considerations.

Giving Patients Choices During Involuntary Admission: A New Intervention.

Background: People who receive involuntary treatment are some of the most vulnerable in psychiatric services. They are more likely to have poorer social and clinical outcomes and to be disillusioned with and disengaged from care. Research indicates that patients' experience in the first week of involuntary treatment is a critical period: a better experience of care in the first week predicts better quality of life and reduced readmission 1 year later. Patients have identified involvement in clinical decisions as key to improving their experience of care. The aim of this study was to test the feasibility and acceptability of an intervention to facilitate involvement in decision making for involuntary inpatients called OPeNS (Options, Preferences, Negotiate, and Summarise). Methods: This was a mixed method study. The OPeNS intervention was developed based on previous research carried out by a multidisciplinary team. Clinicians were trained to deliver it to involuntary inpatients. Feasibility indices (rates of participation in the intervention and time required to deliver it) were collected. Patients (N = 14) and clinicians (N = 5) provided qualitative data on their experience of the intervention in semi-structured interviews which were analysed using thematic analysis. Results: The OPeNS intervention was found to be acceptable by both patients and clinicians and feasible to conduct within the first week of involuntary treatment. Patients' and clinicians' experiences of the intervention fall into two themes: 'Enabling a different dynamic' and 'Clashing with usual practices and priorities'. Conclusion: The OPeNS intervention provides a structure that can be used by clinicians across disciplines to facilitate involving involuntary patients in decision making. Although challenges related to changing usual practices were identified, the intervention was received positively and was feasible to conduct in the first week of involuntary treatment.

How would patients with psychosis like to be in contact with a volunteer: Face-to-face or digitally?

INTRODUCTION: Volunteer befriending can be used to address social isolation in patients with psychosis. Traditionally this involves face-to-face encounters between a volunteer and a patient, but modern digital technology also makes it possible to have these interactions remotely. This study aimed to explore the views and interests of patients with psychosis about different formats of volunteering, face-to-face or digitally. METHODS: A survey was conducted with patients with psychotic disorders in community mental health teams in London. Questions covered socio-demographic characteristics, quality of life, loneliness, views on the different formats of volunteering and types of volunteers, and their interest in getting volunteering support, face-to-face or digitally. Binary logistic regressions were used to investigate potential predictors of interest in getting volunteering support face-to-face or digitally. RESULTS: A total of 151 patients with psychotic disorders were included in this study. More than half of the patients (n = 87, 57.6%) had not heard about these volunteering programs. Many were interested in getting face-to-face (n = 87, 57.6%) and digital (n = 56, 37.1%) volunteering. For the face-to-face encounters, most preferred them to be weekly (n = 36, 41.4%), for one-hour (n = 32, 36.8%), and with an open-ended relationship (n = 45, 51.7%). For the digital contacts, most preferred them to be weekly (n = 17, 30.9%) and through text messages (n = 26, 46.4%). A minority of patients (n = 20, 13.2%) did not use digital technology. Patients with lower quality of life were significantly more likely to prefer face-to-face volunteering (p < .05). Younger patients and with fewer years of diagnosis were significantly more likely to prefer digital volunteering (p < .05). CONCLUSIONS: The variability in patients' interests suggests that different formats of volunteer support should be offered. Digital volunteering may become more important in the future, since many younger patients are interested in it.

Effects of nonpharmacological interventions on functioning of people living with dementia at home: A systematic review of randomised controlled trials.

OBJECTIVE: Slowing functional decline could enable people living with dementia to live for longer and more independently in their own homes. We aimed to update previous syntheses examining the effectiveness of nonpharmacological interventions in reducing functional decline (activities of daily living, activity-specific physical functioning, or function-specific goal attainment) in people living in their own homes with dementia. METHODS: We systematically searched electronic databases from January 2012 to May 2018; two researchers independently rated risk of bias of randomised controlled trials (RCTs) fitting predetermined inclusion criteria using a checklist; we narratively synthesised findings, prioritising studies judged to have a lower risk of bias. RESULTS: Twenty-nine papers (describing 26 RCTs) met eligibility criteria, of which we judged 13 RCTs to have a lower risk of bias. Study interventions were evaluated in four groups: physical exercise, occupational, multicomponent, and cognition-oriented interventions. Four out of 13 RCTs reported functional ability as a primary outcome. In studies judged to have a lower risk of bias, in-home tailored exercise, individualised cognitive rehabilitation, and in-home activities-focussed occupational therapy significantly reduced functional decline relative to control groups in individual studies. There was consistent evidence from studies at low risk of bias that group-based exercise and reminiscence therapies were ineffective at reducing functional decline. CONCLUSION: We found no replicated evidence of intervention effectiveness in decreasing functional decline. Interventions associated with slower functional decline in individual trials have been individually delivered and tailored to the needs of the person with dementia. This is consistent with previous findings. Future intervention trials should prioritise these approaches.

Peer-supported self-management for people discharged from a mental health crisis team: a randomised controlled trial.

BACKGROUND: High resource expenditure on acute care is a challenge for mental health services aiming to focus on supporting recovery, and relapse after an acute crisis episode is common. Some evidence supports self-management interventions to prevent such relapses, but their effect on readmissions to acute care following a crisis is untested. We tested whether a self-management intervention facilitated by peer support workers could reduce rates of readmission to acute care for people discharged from crisis resolution teams, which provide intensive home treatment following a crisis. METHODS: We did a randomised controlled superiority trial recruiting participants from six crisis resolution teams in England. Eligible participants had been on crisis resolution team caseloads for at least a week, and had capacity to give informed consent. Participants were randomly assigned to intervention and control groups by an unmasked data manager. Those collecting and analysing data were masked to allocation, but participants were not. Participants in the intervention group were offered up to ten sessions with a peer support worker who supported them in completing a personal recovery workbook, including formulation of personal recovery goals and crisis plans. The control group received the personal recovery workbook by post. The primary outcome was readmission to acute care within 1 year. This trial is registered with ISRCTN, number 01027104. FINDINGS: 221 participants were assigned to the intervention group versus 220 to the control group; primary outcome data were obtained for 218 versus 216. 64 (29%) of 218 participants in the intervention versus 83 (38%) of 216 in the control group were readmitted to acute care within 1 year (odds ratio 0·66, 95% CI 0·43-0·99; p=0·0438). 71 serious adverse events were identified in the trial (29 in the treatment group; 42 in the control group). INTERPRETATION: Our findings suggest that peer-delivered self-management reduces readmission to acute care, although admission rates were lower than anticipated and confidence intervals were relatively wide. The complexity of the study intervention limits interpretability, but assessment is warranted of whether implementing this intervention in routine settings reduces acute care readmission. FUNDING: National Institute for Health Research.