Only a third of people with dementia receive a diagnosis and post-diagnostic support. An eight session, manualised, modular post-diagnostic support system (New Interventions for Independence in Dementia Study (NIDUS) – family), delivered remotely by non-clinical facilitators is the first scalable intervention to improve personalised goal attainment for people with dementia. It could significantly improve care quality.

We aimed to explore system readiness for NIDUS–family, a scalable, personalised post-diagnostic support intervention.

We conducted semi-structured interviews with professionals from dementia care services; the Consolidated Framework for Implementation Research guided interviews and their thematic analysis.

From 2022 to 2023, we interviewed a purposive sample of 21 professionals from seven English National Health Service, health and social care services. We identified three themes: (1) potential value of a personalised intervention – interviewees perceived the capacity for choice and supporting person-centred care as relative advantages over existing resources; (2) compatibility and deliverability with existing systems – the NIDUS–family intervention model was perceived as compatible with service goals and clients’ needs, but current service infrastructures, financing and commissioning briefs constraining resources to those at greatest need were seen as barriers to providing universal, post-diagnostic care; (3) fit with current workforce skills – the intervention model aligned well with staff development plans; delivery by non-clinically qualified staff was considered an advantage over current care options.

Translating evidence for scalable and effective post-diagnostic care into practice will support national policies to widen access to support and upskill support workers, but requires a greater focus on prevention in commissioning briefs and resource planning.

Effective risk identification and assessment is important to help inform personalised care decisions, positive risk management, policy making and clinical practice in dementia. This mixed-method systematic review identified key components of risk assessment for people with dementia living within the community and care homes, examined attitudes towards risk identification and risk assessment, and appraised existing risk assessment tools.

Systematic searches of eight databases on two platforms (EBSCO, OVID) and grey literature databases (Open Grey, Base) were conducted. Studies were systematically screened for inclusion based on predetermined eligibility criteria and quality assessed using the Mixed Methods Appraisal Tool. Findings were tabulated and synthesised using thematic synthesis.

Twenty studies consisting of qualitative and mixed-method designs were included in the review. Five overarching themes emerged from the synthesis: Conceptualisation of risk - individual perceptions of risk, including how different individuals define, construct, and identify risk situations. Components of risk –key elements included in risk and safety assessments. Contributors to risk –factors that impact the risk level and how risk assessments are conducted. Perspectives on risk assessment –how individuals assess risk and approaches to risk management. Risk reduction –strategies to mitigate risk following an assessment.

Our review found differences in how risk is conceptualised between people with dementia, their family carers, and healthcare professionals, with views being shaped by media perceptions, personal experiences, sociocultural influences, dementia knowledge and severity. We found that mobilisation both inside and outside of the home is the most frequently identified risk factor. Our findings show people with dementia and carers are generally risk- tolerant, while healthcare professionals adopt risk-averse approaches that reflect organisational requirements and ensure safety. We found factors that disrupt daily routines, living and caring arrangements, medication management, and unclear care pathways contribute towards adverse risk events. Few studies considered people with dementia’s insight into the risk being assessed.

Accurate risk assessment and effective communication strategies are needed to enable risk- tolerant practices and ensure these approaches can be evaluated effectively. We did not find any instrument which to date had been shown to be widely acceptable and useful in practice.

This systematic review identified key components of risk assessment for people with dementia, examined attitudes toward risk identification and risk assessment, and appraised existing risk assessment tools.

Systematic searches of five databases on two platforms (EBSCO, OVID) and gray literature databases (Open Grey, Base) were conducted. Studies were screened for inclusion based on predetermined eligibility criteria and quality assessed using the Mixed Methods Appraisal Tool. Findings were tabulated and synthesized using thematic synthesis.

Our review found people with dementia, their family carers, and healthcare professionals differed in how risk is conceptualized, with views being shaped by media perceptions, personal experiences, socio-cultural influences, dementia knowledge, and dementia severity. We found that mobilization (causing falls inside and getting lost outside) is the most frequently identified risk factor. Our findings show people with dementia are generally risk-tolerant, while healthcare professionals may adopt risk-averse approaches because of organizational requirements. We found factors that disrupt daily routines, living and caring arrangements, medication management, and unclear care pathways contribute toward adverse risk events. We discovered that most studies about risk and risk assessment scales did not consider insight of the person with dementia into risks although this is important for the impact of a risk. No risk instrument identified had sufficient evidence that it was useful.

Accurate risk assessment and effective communication strategies that include the perspectives of people with dementia are needed to enable risk-tolerant practice. No risk instrument to date was shown to be widely acceptable and useful in practice.

To identify barriers and facilitators to help seeking for a dementia diagnosis from the perspective of carers and people with dementia.

A systematic review of the literature was conducted according to the PRISMA guidelines (PROSPERO protocol registration CRD42018092524). Nine electronic databases were searched for qualitative, quantitative, and mixed methods primary research studies. Two independent reviewers screened titles and abstracts, full texts of eligible studies, and conducted quality appraisal of included articles. A convergent qualitative synthesis approach was used.

From 7496 articles, 35 papers representing 32 studies from 1986 to 2017 were included. Studies originated from 13 countries across 4 continents. Barriers and facilitators were reported predominantly by carers. A small number of studies included people with dementia. Barriers included denial, stigma and fear, lack of knowledge, normalization of symptoms, preserving autonomy, lack of perceived need, unaware of changes, lack of informal network support, carer difficulties, and problems accessing help. Facilitators included recognition of symptoms as a problem, prior knowledge and contacts, and support from informal network.

Studies from a 30-year period demonstrated that barriers to help seeking persist globally, despite increasing numbers of national dementia policies. Barriers and facilitators rarely existed independently demonstrating the complexity of help seeking for a diagnosis of dementia. Multiple barriers compounded the decision-making process and more than one facilitator was often required to overcome them. Multi-faceted interventions to reduce barriers are needed, one approach would be a focus on the development of dementia friendly communities to reduce stigma and empower people with dementia and carers.

The START (STrAtegies for RelaTives) intervention reduced depressive and anxiety symptoms of family carers of relatives with dementia at home over 2 years and was cost-effective.

To assess the clinical effectiveness over 6 years and the impact on costs and care home admission.

We conducted a randomised, parallel group, superiority trial recruiting from 4 November 2009 to 8 June 2011 with 6-year follow-up (trial registration: ISCTRN 70017938). A total of 260 self-identified family carers of people with dementia were randomised 2:1 to START, an eight-session manual-based coping intervention delivered by supervised psychology graduates, or to treatment as usual (TAU). The primary outcome was affective symptoms (Hospital Anxiety and Depression Scale, total score (HADS-T)). Secondary outcomes included patient and carer service costs and care home admission.

In total, 222 (85.4%) of 173 carers randomised to START and 87 to TAU were included in the 6-year clinical efficacy analysis. Over 72 months, compared with TAU, the intervention group had improved scores on HADS-T (adjusted mean difference −2.00 points, 95% CI −3.38 to −0.63). Patient-related costs (START versus TAU, respectively: median £5759 v. £16 964 in the final year; P = 0.07) and carer-related costs (median £377 v. £274 in the final year) were not significantly different between groups nor were group differences in time until care home (intensity ratio START:TAU was 0.88, 95% CI 0.58–1.35).

START is clinically effective and this effect lasts for 6 years without increasing costs. This is the first intervention with such a long-term clinical and possible economic benefit and has potential to make a difference to individual carers.

G.L., Z.W. and C.C. are supported by the UCLH National Institute for Health Research (NIHR) Biomedical Research Centre. G.L. and P.R. were in part supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames at Bart's Health NHS Trust. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Z.W. reports during the conduct of the study; personal fees from GE Healthcare, grants from GE Healthcare, grants from Lundbeck, other from GE Healthcare, outside the submitted work.

Trials of psychological interventions for reducing agitation in people with dementia living at home have been unsuccessful.

To inform future interventions by identifying successful strategies of family carers with relatives with dementia and agitation living at home.

Qualitative in-depth individual interviews were performed with 18 family carers. We used thematic analysis to identify emerging themes.

Carers described initial surprise and then acceptance that agitation is a dementia symptom and learned to respond flexibly. Their strategies encompassed: prevention of agitation by familiar routine; reduction of agitation by addressing underlying causes and using distraction; prevention of escalation by risk enablement, not arguing; and control of their emotional responses by ensuring their relative's safety then walking away, carving out some time for themselves and using family and services for emotional and practical help.

These strategies can be manualised and tested in future randomised controlled trials for clinical effectiveness in reducing agitation in people with dementia living at home.