Current state of the evidence on community treatments for people with complex emotional needs: a scoping review.

BACKGROUND: Improving the quality of care in community settings for people with 'Complex Emotional Needs' (CEN-our preferred working term for services for people with a "personality disorder" diagnosis or comparable needs) is recognised internationally as a priority. Plans to improve care should be rooted as far as possible in evidence. We aimed to take stock of the current state of such evidence, and identify significant gaps through a scoping review of published investigations of outcomes of community-based psychosocial interventions designed for CEN. METHODS: We conducted a scoping review with systematic searches. We searched six bibliographic databases, including forward and backward citation searching, and reference searching of relevant systematic reviews. We included studies using quantitative methods to test for effects on any clinical, social, and functioning outcomes from community-based interventions for people with CEN. The final search was conducted in November 2020. RESULTS: We included 226 papers in all (210 studies). Little relevant literature was published before 2000. Since then, publications per year and sample sizes have gradually increased, but most studies are relatively small, including many pilot or uncontrolled studies. Most studies focus on symptom and self-harm outcomes of various forms of specialist psychotherapy: most result in outcomes better than from inactive controls and similar to other specialist psychotherapies. We found large evidence gaps. Adaptation and testing of therapies for significant groups (e.g. people with comorbid psychosis, bipolar disorder, post-traumatic stress disorder, or substance misuse; older and younger groups; parents) have for the most part only reached a feasibility testing stage. We found little evidence regarding interventions to improve social aspects of people's lives, peer support, or ways of designing effective services. CONCLUSIONS: Compared with other longer term mental health problems that significantly impair functioning, the evidence base on how to provide high quality care for people with CEN is very limited. There is good evidence that people with CEN can be helped when specialist therapies are available and when they are able to engage with them. However, a much more methodologically robust and substantial literature addressing a much wider range of research questions is urgently needed to optimise treatment and support across this group.

Time Trends in Incidence of Reported Memory Concerns and Cognitive Decline: A Cohort Study in UK Primary Care.

Purpose: To investigate time trends in incidence of recorded memory concerns (MC) and cognitive decline (CD) in a UK older population presenting to primary care with no prior diagnosis of dementia. To determine the risk of developing dementia in people with recorded memory concern and cognitive decline. Patients and methods: We included individuals aged 65-99 years who contributed to data within the IQVIA medical research database from 1st January 2009 to 31st December 2018. We reported crude incidence rates for MC (study population n=1,310,838) and CD (n=1,348,796). We conducted survival analysis to estimate the risk of developing dementia using fine-grey sub-distribution hazard model with competing risk of death. Results: We identified 55,941 individuals (4.3%) with a record of incident MC; rates were fairly stable over the decade of study. We identified 14,869 people (1.1%) with a record of incident CD, and these rates increased from 1.29/1000 PYAR (95% CI 1.21 to 1.38) in 2009 to 3.49/1000 PYAR (95% CI 3.30 to 3.68) in 2018. Within 3 years of follow up from the first record of MC, 45.5% of individuals received a diagnosis of dementia, while of those with a record of CD, 51.7% received a dementia diagnosis. Women, people in older age groups and those living in more deprived areas were more likely to have a record of MC or CD, and their symptoms were more likely to progress to a dementia diagnosis. Conclusion: Incidence rates of MC and CD estimated from routinely collected primary care data are lower than those reported in community surveys, suggesting that a minority of people who experience memory loss consult their GP and have it recorded. Our findings indicate that those who do report concerns to primary care, especially women, those in older age groups and those in more deprived areas, are at a higher risk for developing dementia.

What constitutes 'good' home care for people with dementia? An investigation of the views of home care service recipients and providers.

BACKGROUND: Our objective was to explore what people receiving and providing care consider to be 'good' in-home care for people living with dementia. METHODS: We conducted 36 in-depth interviews and two focus groups with key stakeholders in Australia in the first quarter of 2018. Participants included those receiving care (4 people living with dementia, 15 family carers) or providing care (9 case managers, 5 service managers, 10 home care workers). Qualitative thematic analysis was guided by Braun and Clarke's six-step approach. RESULTS: Consensus was reached across all groups on five themes considered as important for good in-home dementia care: 1) Home care workers' understanding of dementia and its impact; 2) Home care workers' demonstrating person-centred care and empathy in their care relationship with their client; 3) Good relationships and communication between care worker, person with dementia and family carers; 4) Home care workers' knowing positive practical strategies for changed behaviours; 5) Effective workplace policies and workforce culture. The results contributed to the co-design of a dementia specific training program for home care workers. CONCLUSIONS: It is crucial to consider the views and opinions of each stakeholder group involved in providing/receiving dementia care from home care workers, to inform workforce training, education program design and service design. Results can be used to inform and empower home care providers, policy, and related decision makers to guide the delivery of improved home care services. TRIAL REGISTRATION: ACTRN 12619000251123 .

How are people with mild cognitive impairment or subjective memory complaints managed in primary care? A systematic review.

BACKGROUND: Primary care is typically the first point of contact in the health care system for people raising concerns about their memory. However, there is still a lack of high-quality evidence and understanding about how primary care professionals (PCPs) currently manage people at higher risk of developing dementia. OBJECTIVES: To systematically review management strategies provided by PCPs to reduce cognitive decline in people with mild cognitive impairment and subjective memory complaints. METHOD: A systematic search for studies was conducted in December 2019 across five databases (EMBASE, Medline, PsycInfo, CINAHL and Web of Science). Methodological quality of included studies was independently assessed by two authors using the Mixed Methods Appraisal Tool. RESULTS: An initial 11 719 were found, 7250 were screened and 9 studies were included in the review. Most studies were self-reported behaviour surveys. For non-pharmacological strategies, the most frequent advice PCPs provided was to increase physical activity, cognitive stimulation, diet and social stimulation. For pharmacological strategies, PCPs would most frequently not prescribe any treatment. If PCPs did prescribe, the most frequent prescriptions targeted vascular risk factors to reduce the risk of further cognitive decline. CONCLUSION: PCPs reported that they are much more likely to provide non-pharmacological strategies than pharmacological strategies in line with guidelines on preventing the onset of dementia. However, the quality of evidence within the included studies is low and relies on subjective self-reported behaviours. Observational research is needed to provide an accurate reflection of how people with memory problems are managed in primary care.

People will typically go to their general practitioners, also known as primary care professionals (PCPs), to raise concerns about their memory. However, there is no clear understanding of what advice or treatment PCPs provide to people with memory concerns who are at high risk of dementia. This review aims to summarize the findings from research that studied what advice or treatments PCPs would give to a person with memory concerns. Nine studies were included in the review after screening through 11 719 studies. The current review found that PCPs were more likely to provide advice rather than prescribe any drug treatment. The most common advice that PCPs provided was to increase physical activity, cognitive stimulation and social stimulation. If PCPs decided to prescribe drugs, the most common prescriptions were to improve blood flow. Improving blood flow has been linked with reducing the risk of developing dementia. However, the quality of the studies included in this review is low because many relied on PCPs answering questionnaires on their intentions to manage people with memory concerns. Therefore, future research needs to observe PCPs' real-life practice to provide an accurate reflection of how people with memory problems are managed in primary care.

What are the neural correlates of meta-cognition and anosognosia in Alzheimer's disease? A systematic review.

Awareness of one's own cognitive processes (metacognition) or of one's own illness or deficits (anosognosia) can be impaired in people with Alzheimer's disease (AD). The neural correlates of anosognosia within AD remain inconclusive. Understanding anosognosia is of importance because of its impact on carer burden and increased institutionalization. A systematic review of structural and functional neuroimaging studies was conducted to identify specific brain regions associated with anosognosia within AD. Thirty-two studies were included in the systematic review. Reduced gray matter density, cerebral blood flow, and hypometabolism in 8 key regions were significantly associated with increased anosognosia scores in people with AD. The most frequently associated regions were the inferior frontal gyrus, anterior cingulate cortex, and medial temporal lobe. Other key regions include the superior frontal gyrus, medial frontal gyrus, orbitofrontal cortex, posterior cingulate cortex, and the insula. Identifying brain regions associated with anosognosia can aid understanding and identification of anosognosia in people with AD and potentially facilitate improvements in care.

'I know they are not trained in dementia': Addressing the need for specialist dementia training for home care workers.

Global population ageing has meant a rapid increase in the numbers of older people with dementia, most of whom live in their own homes. Staying at home is an important determinant of health and well-being. As care needs increase, the quality of community support which older people receive directly influences their capacity to remain in their own homes. While many are supported informally by family carers, formal support provided by home care workers often enables them to remain at home for longer period. However, providing community-based care for people with dementia can be challenging. Workers often lack training in dementia-specific care for clients with increasingly complex needs, and typically work without direct supervision. As the demand for person-centred home care for people with dementia increases, specialist dementia training for home care workers is urgently needed. In this qualitative study, we used in-depth interviews of a purposive sample, comprising 15 family carers and four older people with dementia, to understand the experience of receiving community care. Data analysis was guided by Braun and Clarke's approach to thematic analysis and revealed the following five overlapping themes, relating to home care workers' understanding of dementia, person-centred care, communication and rapport, mutual collaboration, and the influence of organisational constraints on continuity of care. Although participants acknowledged that service providers operated under challenging circumstances, they were frustrated with home care workers' lack of dementia knowledge and inconsistent staff rostering. Conversely, an understanding of the lived experience of dementia, effective communication and rapport, and continuity of care contributed significantly to a positive experience of receiving care. The findings of this study will be used to inform the essential elements of a training program aimed at enabling and empowering a skilled, specialist home care workforce to support older people with dementia to live well at home for as long as possible.

DREAMS-START (Dementia RElAted Manual for Sleep; STrAtegies for RelaTives) for people with dementia and sleep disturbances: a single-blind feasibility and acceptability randomized controlled trial.

ABSTRACTBackground:40% of people with dementia have disturbed sleep but there are currently no known effective treatments. Studies of sleep hygiene and light therapy have not been powered to indicate feasibility and acceptability and have shown 40-50% retention. We tested the feasibility and acceptability of a six-session manualized evidence-based non-pharmacological therapy; Dementia RElAted Manual for Sleep; STrAtegies for RelaTives (DREAMS-START) for sleep disturbance in people with dementia. METHODS: We conducted a parallel, two-armed, single-blind randomized trial and randomized 2:1 to intervention: Treatment as Usual. Eligible participants had dementia and sleep disturbances (scoring ≥4 on one Sleep Disorders Inventory item) and a family carer and were recruited from two London memory services and Join Dementia Research. Participants wore an actiwatch for two weeks pre-randomization. Trained, clinically supervised psychology graduates delivered DREAMS-START to carers randomized to intervention; covering Understanding sleep and dementia; Making a plan (incorporating actiwatch information, light exposure using a light box); Daytime activity and routine; Difficult night-time behaviors; Taking care of your own (carer's) sleep; and What works? Strategies for the future. Carers kept their manual, light box, and relaxation recordings post-intervention. Outcome assessment was masked to allocation. The co-primary outcomes were feasibility (≥50% eligible people consenting to the study) and acceptability (≥75% of intervention group attending ≥4 intervention sessions). RESULTS: In total, 63out of 95 (66%; 95% CI: 56-76%) eligible referrals consented between 04/08/2016 and 24/03/2017; 62 (65%; 95% CI: 55-75%) were randomized, and 37 out of 42 (88%; 95% CI: 75-96%) adhered to the intervention. CONCLUSIONS: DREAM-START for sleep disorders in dementia is feasible and acceptable.

A manual-based intervention for carers of people with dementia and sleep disturbances: an acceptability and feasibility RCT.

BACKGROUND: It has been estimated that between 25% and 40% of people living with dementia suffer from sleep disturbances, and there are currently no known effective treatments. Sleep disturbances may be the direct result of dementia or due to other comorbidities, such as pain and limited mobility. If carers' sleep is also disturbed, carers too can become tired and stressed, and this sometimes results in the breakdown of care in the home. OBJECTIVES: To design an evidence-based manualised non-pharmacological therapy for sleep disturbances and test it for feasibility and acceptability. DESIGN: A single-blind, randomised, parallel-group feasibility trial, with participants randomised 2 : 1 to intervention or treatment as usual (TAU). SETTING: Five memory services in two London NHS trusts and Join Dementia Research (JDR). PARTICIPANTS: The study recruited people with dementia and sleep disturbances (who scored ≥ 4 on at least one question on the Sleep Disorders Inventory) and their primary family carers. INTERVENTION: All participants were given an Actiwatch (CamNtech Ltd, Cambridge, UK) to wear to record their sleep patterns for 2 weeks before randomisation. The intervention group received Dementia RElAted Manual for Sleep; STrAtegies for RelaTives (DREAMS START). This was designed as a six-session, manual-based intervention for carers of people with dementia, delivered by trained and clinically supervised psychology graduates, based on evidence about managing sleep disturbance in people with dementia. It uses the structure of a previous manual-based treatment, STrAtegies for RelaTives (START). Family carers were consulted about structure, content and design. Sessions were interactive, and each involved techniques, tasks to practise between sessions, relaxation and a recapitulation on the previous session. The sessions covered understanding sleep and dementia, making a plan (incorporating information from Actiwatch read-outs and a light box to increase light), daytime activity and routine, difficult night-time behaviours, taking care of your own (carer's) sleep and using the strategies in the future. Carers kept their own manual, light box and relaxation recordings post intervention. RANDOMISATION AND BLINDING: A statistician created an electronic randomisation list, stratified by site, using random permuted blocks. Those assessing the outcome were blinded to allocation; participants were not blinded. MAIN OUTCOME MEASURES: Outcomes were assessed at 3 months. (1) Feasibility, defined as the percentage of eligible people who consented to the study recruitment, with an expected value of 50% [95% confidence interval (CI) 41% to 59%]. (2) Acceptability, defined as the percentage of intervention group participants attending ≥ 4 intervention sessions, with an expected value of 75% (95% CI 59% to 87%). The predetermined criterion for progression to the main trial was acceptability of ≥ 70%. RESULTS: Of 95 eligible patients referred, 63 (66%, 95% CI 56% to 76%) consented between 4 August 2016 and 24 March 2017: 61 from memory clinics and two from JDR. Of these, 62 participants (65%, 95% CI 55% to 75%) were randomised: 42 to the intervention arm and 20 to the TAU arm. Thirty-seven out of 42 participants (88%, 95% CI 75% to 96%) adhered to the intervention. CONCLUSIONS: The results show that the randomised controlled trial is feasible and that the intervention is acceptable. A higher than expected proportion of eligible patients referred consented to the study and adhered to the intervention. LIMITATIONS: Participants were not blinded and were recruited only in London. FUTURE WORK: The results of this trial indicate that a future efficacy trial is warranted. TRIAL REGISTRATION: Current Controlled Trials ISCTRN36983298. FUNDING: This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 22, No. 71. See the NIHR Journals Library website for further project information. Funding was also provided by Camden and Islington NHS Foundation Trust and Barnet, Enfield and Haringey Mental Health NHS Trust to pay for excess treatment costs from therapist training and supervision and intervention delivery.

An intervention to improve sleep for people living with dementia: Reflections on the development and co-production of DREAMS:START (Dementia RElAted Manual for Sleep: STrAtegies for RelaTives).

Many people living with dementia experience sleep disturbances yet there are currently no known effective, safe and acceptable treatments. Working with those affected by dementia to co-produce interventions is increasingly promoted to ensure that approaches are fit for purpose and meet the specific needs of target groups. Our aim here is to outline and reflect upon the co-production of Dementia RElAted Manual for Sleep; STrAtegies for RelaTives (DREAMS:START), an intervention to improve sleep for people living with dementia. Our co-production team brought together experts in the development and testing of manualised interventions in dementia care and cognitive behavioural interventions for sleep disorders, with Alzheimer's Society research network volunteers (ASRNVs) whose lives had been affected by dementia. Here we present the process of intervention development. We worked with (ASRNVs) at each stage of the process bringing together 'experts by training' and 'experts by experience'. (ASRNVs)shared their experiences of sleep disturbances in dementia and how they had managed these difficulties, as well as suggestions for how to overcome barriers to putting the intervention into practice; making (DREAMS:START) more accessible and usable for those in need. In this paper we discuss both the benefits and challenges to this process and what we can learn for future work. Collaborating with 'experts by experience' caring for a relative with sleep difficulties helped us to develop a complex intervention in an accessible and engaging way which we have tested and found to be feasible and acceptable in a randomised controlled trial.

An update on dementia training programmes in home and community care.

PURPOSE OF REVIEW: Many people living with dementia (PLWD) wish to continue living at home. The quality of home care services directly influences their ability to stay at home, their quality of life, and can promote independence for PLWD, and reduce burden for the family carer. For high-quality, effective, person-centred community-based dementia care, a knowledgeable and empathetic workforce is crucial. This article presents an up-to-date review and summary of the literature investigating dementia training programmes for community home care professionals and care workers, referred to collectively as home care workers (HCWs). RECENT FINDINGS: We reviewed the literature between October 2016 and April 2018 on dementia training for HCWs. We found a significant lack of evidence-based, codesigned specialist dementia training programmes for HCWs that address the needs of all stakeholders in home care, and which formally measure outcomes. SUMMARY: In order to enable PLWD to maintain living at home in the community, dementia-friendly and knowledgeable HCWs are needed. This review highlights the need for more research into the design and evaluation of evidence-based dementia specialist training programmes for community care.