'Misdiagnosed and Misunderstood': Insights into Rarer Forms of Dementia through a Stepwise Approach to Co-Constructed Research Poetry.

This study investigated co-constructed research poetry as a way to understand the lived experiences of people affected by rarer dementia and as a means to use poetry to convey those experiences to healthcare professionals. Using mixed methods, 71 people living with rarer dementia and care-partners (stakeholders) contributed to co-constructing 27 poems with professional poets; stakeholders' verbatim words were analysed with descriptive qualitative analysis. Stakeholders were also surveyed and interviewed about their participation. Healthcare professionals (n = 93) were surveyed to elicit their responses to learning through poetry and its acceptability as a learning tool. Poems conveyed a shared narrative of different aspects of lived experience, often owing to atypical symptoms, misunderstandings by professionals, lack of support pathways, and a continuous struggle to adapt. Stakeholder surveys indicated it was a valuable experience to both co-create and respond to the poems, whilst group interviews revealed people's experiences of the research poetry were characterised by reflection on lived experience, curiosity and exploration. Healthcare professionals' responses reinforced poetry's capacity to stimulate cognitive and affective learning specific to rare dementia support and prompt both empathy and critical thinking in practice. As the largest poetry-based study that we are aware of, this novel accessible approach of creating group poems yielded substantial information about the experiences and needs of those affected by rarer dementia and how poetry can contribute to healthcare education and training.

The Diagnostic Pathway Experiences of People Living with Rare Dementia and Their Family Caregivers: A Cross-Sectional Mixed Methods Study Using Qualitative and Economic Analyses.

The pathways for receiving a diagnosis of a rare type of dementia are poorly understood. Diagnostic challenges decrease access to relevant health promotion activities and post-diagnostic support. This study was focused on pathways experienced by people affected by rare dementia in Wales, United Kingdom (UK), considering the practical, emotional, and economic consequences. Semi-structured interviews were completed with 10 people affected by rare dementia across Wales, UK (nine family caregivers and one person living with rare dementia). The interview data were subject to a thematic analysis and a bottom-up costing approach was used to cost the pathway journeys. Five transitional points occurred across the diagnostic pathway (initial contact, initial referral, further referrals-provider, further referrals-private, and diagnosis) alongside two further themes (i.e., involved in the diagnostic process and disputes between stakeholders). The timeliness of the diagnosis was perceived to often be subject to 'luck', with access to private healthcare a personal finance option to expedite the process. Higher economic costs were observed when, in retrospect, inappropriate referrals were made, or multiple referrals were required. The confusion and disputes relating to individual diagnostic pathways led to further emotional burdens, suggesting that higher economic costs and emotional consequences are interlinked. Clearer diagnostic pathways for rare dementia may prevent unnecessary service contacts, waiting times, and associated distress. Prioritising appropriate and timely service contacts leads to diagnosis and support to families and enables people to increase control over their health. Appropriate diagnostic pathways may be less costly and reduce costs for families.

Hard to Reach and Hidden: Improving the Identification of Young Dementia Carers.

Young dementia carers (YDCs) rarely receive appropriate training and support. Their visibility and identification remain dangerously low, and, consequently, support initiatives being developed are failing to reach them. This study explored the success (or failure) of YDC identification pathways as well as the barriers and enablers to their implementation. An explorative qualitative approach was followed, drawing on the experiences of parents of YDCs, dementia researchers, professionals in the field of dementia/young carers, and young adult carers. Data collection involved semi-structured interviews (n = 17) and a participatory 2-h workshop to discuss and critique preliminary themes as well as explore strategies to increase the visibility and identification of YDCs. Five themes were identified: a "whole-family approach" (as a pathway to identification), "not a carer" (self/family identification), a postcode lottery (high variability of support services), tailored support that is "fit for purpose", and the "power" of peer support. Recommendations on potential initiatives and actions that can help raise awareness and increase the identification success of YDCs are proposed. Our findings support the need for a broad and holistic approach to the identification of YDCs that runs alongside the development of support initiatives that are accessible and relatable. The support itself will play a role in improving subsequent identification or hindering it if not "fit for purpose".

Knowledge Is Power: Utilizing Human-Centered Design Principles with People Living with Dementia to Co-Design a Resource and Share Knowledge with Peers.

This paper describes the process used by a group of people living with young-onset dementia to inform the development and delivery of a post-diagnosis peer guide. It draws on the four stages of human-centered design and applies them in a new context of supporting resilience for people following a diagnosis of dementia. (1) Discover: The group discussed in-depth their perspectives on what it takes to be resilient while living with dementia and how this can be maintained. (2) Define: The group decided to collate practical information and knowledge based on their personal experiences into a booklet to support the resilience of others following a diagnosis of dementia. (3) Develop: The booklet was designed and developed together with input from other people living with dementia, facilitated by the authors. (4) Deliver: The group guided the professional production of the booklet 'Knowledge is Power'. Over 8000 copies have been distributed to memory clinics, post-diagnostic support organizations and people living with dementia across Wales. A bilingual English-Scottish Gaelic adaptation and an adaptation for people in England have since been developed. The success of 'Knowledge is Power' highlights the importance of working alongside people with dementia to share knowledge and support their resilience.

Situating support for people living with rarer forms of dementia.

BACKGROUND: Awareness of a multitude of diseases that can cause neurodegenerative decline and their unique symptom profiles in the dementia care and support sectors remains limited. Obtaining an accurate diagnosis and post-diagnostic care and support is a challenge for many people and their families. As part of a larger study examining multi-component forms of support for people living with rarer dementias, the aim of this present study was to examine how rare dementia was situated within the complex social groupings, their organization and embedded discursive constructions that broadly form dementia care and support delivery. METHODS: Adopting a situational analysis approach, we undertook an examination of public documents and organizational websites within the support sector for people living with dementia in Canada, England, and Wales. We also surveyed professionals to further explore the situation at the point of care and support delivery. Consistent with our approach, data collection and analysis occurred concurrently including the development of a series of analytic maps. RESULTS: Recognizing the complexities within the situation, our findings provided new insights on the situated structures for support action and the discursive representations that illuminate both the limitations of the current support landscape and possibilities for a more flexible and tailored rare dementia support. Alongside, the predominant universal versus tailored support positionings within our data reinforced the complexity from which a promising new social space for people living with rarer dementias is being cultivated. CONCLUSIONS: The social worlds engaged in supportive action with people living with rare dementia are less visible within the shadow of a universally constructed dementia support milieu and appear to be negotiated within this powerful arena. However, their evolving organization and discursive constructions point to an emerging new social space for people living with rarer conditions.

"Better Living with Non-memory-led Dementia": protocol for a feasibility randomised controlled trial of a web-based caregiver educational programme.

BACKGROUND: Non-memory-led dementias such as posterior cortical atrophy (PCA), primary progressive aphasia (PPA) and behavioural variant frontotemporal dementia (bvFTD) are low prevalent and often affect individuals under the age of 65. Tailored educational and support resources for caregivers of people living with these dementia phenotypes are scarce and unevenly distributed geographically. Web-based educational programmes are emerging as promising alternatives to improve caregiver self-efficacy and well-being. Here, we present the protocol of a study aiming to assess the feasibility of a co-produced online educational programme for caregivers of people living PCA, PPA and bvFTD: the Better Living with Non-memory-led Dementia programme. METHODS: A randomised controlled feasibility trial will be conducted on a sample of 30 caregivers of people living with PCA, PPA and bvFTD. Participants will be recruited among members of the support organisation Rare Dementia Support (based at UCL in the UK). The intervention group will be given access to an 8-week co-produced web-based educational programme consisting of 6 modules addressing education about PCA, PPA and bvFTD and support strategies for the person with dementia and for the caregiver. The control group will receive treatment as usual (TAU). Feasibility will be measured through feasibility of recruitment, clinical measurement tools and acceptability. Clinical measures will be used to assess preliminary efficacy and data on completion rates, missing data and variability used to decide on measures to be included in a full-scale trial. Allocation ratio will be 2:1 (intervention:control) stratified by diagnosis. Feasibility of recruitment and acceptability will be assessed. Clinical measures will be administered at baseline and 8-week and 3-month post-randomisation. The control group will be offered access to the intervention at the completion of data collection. Participants will be unblinded, and all measures will be self-reported online. DISCUSSION: Online-delivered educational programmes show potential for improving care competency of caregivers and may contribute to overcoming geographical inequalities in local provision of support services. This pilot study will inform a fully powered international trial to determine the effectiveness of Better Living with Non-memory-led Dementia. TRIAL REGISTRATION: This trial has been registered prospectively on the Clinical Trials Registry on 1st September 2022, registration number NCT05525377.

Development of an item pool for a patient reported outcome measure of resilience for people living with dementia.

BACKGROUND AND OBJECTIVES: Policies to support people living with dementia increasingly focus on strengths-based approaches, highlighting the importance of building resilience. This research responds to the lack of a suitable resilience measure for people with dementia. It develops a pool of items to inform a new measure of resilience for this population. METHODS: A conceptual model and associated data informed the item generation of the draft resilience measure. Regular meetings with professionals (n = 7) discussed response-scale formatting, content and face validity, leading to refinement and item reduction. Cognitive interviews with people living with dementia (n = 11) then examined the face and content validity of items and the suitability of response-scale formatting. These two phases informed subsequent revision and further item reduction of the resilience measure. RESULTS: The first item generation exercise led to 140 items. These were independently assessed by the professionals and this refinement reduced the measure to 63 items across 7 domains of the conceptual model (psychological strengths; practical approaches for adapting to life with dementia; continuing with hobbies, interests and activities; strong relationships with family and friends; peer support and education; participating in community activities; the role of professional support services). Cognitive interviews explored the 63 items with people living with dementia. Detailed feedback led to items removed due to difficulty with (a) understanding (N = 7); (b) answering (n = 11); (c) low preference for that item (n = 6); and (d) presence of a preferred item within a cluster of similar questions (n = 4). Items were amended to enhance clarity/conciseness (n = 19) leading to a final 37-item pool. CONCLUSION: Established methods for measurement development included the expertise of people with dementia and led to the generation of a set of items for a new resilience measure that were understandable and acceptable to this target population. This 37-item pool reflects the conceptual understanding of resilience in dementia as being derived across individual, community and societal level resources.

'I have never bounced back': resilience and living with dementia.

OBJECTIVE: This work responds to the limited research about resilience when living with dementia and develops a conceptual model to inform service development and healthcare practices for this population. METHODS: An iterative process of theory building across four phases of activity (scoping review n = 9 studies), stakeholder engagement (n = 7), interviews (n = 11) generated a combined sample of 87 people living with dementia and their carers, including those affected by rare dementias to explore their lived experiences. An existing framework of resilience developed in other populations served as the starting point to analyse and synthesise the findings, inspiring a new conceptual model of resilience unique to the experience of living with dementia. RESULTS: The synthesis suggests resilience encompasses the daily struggles of living with a dementia; people are not flourishing, thriving or 'bouncing back', but are managing and adapting under pressure and stress. The conceptual model suggests resilience may be achieved through the collective and collaborative role of psychological strengths, practical approaches to adapting to life with dementia, continuing with hobbies, interests and activities, strong relationships with family and friends, peer support and education, participating in community activities and support from healthcare professionals. Most of these themes are not reflected in resilience outcome measures. CONCLUSIONS: Practitioners adopting a strengths-based approach utilising the conceptual model at the point of diagnosis and post-diagnosis support may help individuals achieve resilience through appropriately tailored services and support. This 'resilience practice' could also extend to other degenerative or debilitating chronic conditions a person faces in their life course.

'The oxygen of shared experience': exploring social support processes within peer support groups for carers of people with non-memory-led and inherited dementias.

OBJECTIVES: To explore support processes and behaviours taking place during online peer support groups for family carers of people living with rare, non-memory-led and inherited dementias (PLWRD). METHODS: Twenty-five family carers of PLWRD participated in a series of ongoing online peer support groups on the theme of 'Independence and Identity'. Transcripts from 16 sessions were analysed using qualitative directed content analysis with a coding framework informed by Cutrona & Suhr's (2004) Social Support Behaviour Code (SSBC). RESULTS: Most of the social support behaviours outlined in the SSBC were identified within the sessions, along with two novel social support categories - 'Experiential Support' and 'Community Support' - and novel support behaviours including 'Advocacy and Collective Action' and 'Uses Humour'. The SSBC code 'Relationship' appeared to be of central importance. CONCLUSIONS: This study sheds light on the unique challenges of the caring context for those affected by non-memory-led and inherited dementias and the significant contributions carers can offer to, and receive from, peers in similar situations. It highlights the importance of services which recognise the value of the informational and emotional expertise of carers of PLWRD and encourages the continued development and delivery of tailored support for these populations.

Adaptation of an eHealth Intervention: iSupport for Carers of People with Rare Dementias.

'iSupport' is an online psychoeducation and skills development intervention created by the World Health Organisation to support people with dementia. This project adapted iSupport for carers of people with rare dementias (iSupport RDC), creating a new resource to support the health and wellbeing of this underserved population. The adaptation involved three phases: (1) Co-design methods to generate preliminary adaptations; (2) Analysis of phase one findings informing adaptations to iSupport to develop; iSupport RDC; (3) Post-adaptation survey to ascertain participant agreement with the adaptations in iSupport RDC. Fourteen participants contributed, resulting in 212 suggested adaptations, of which 94 (92%) were considered practical, generalisable, and aligned with iSupport principles. These adaptations encompassed content and design changes, including addressing the challenges of rare dementias (PCA, PPA, LBD, and FTD). iSupport RDC represents a significant adaptation of the WHO iSupport intervention. Its tailored nature acknowledges the unique needs of people caring for someone with a rare dementia, improving their access to specialised resources and support. By extending iSupport to this population, it contributes to advancing dementia care inclusivity and broadening the understanding of rare dementias. A feasibility study is underway to assess iSupport RDCs acceptability, with prospects for cultural adaptations to benefit carers globally.

A systematic review and psychometric evaluation of resilience measurement scales for people living with dementia and their carers.

Psychometrically sound resilience outcome measures are essential to establish how health and care services or interventions can enhance the resilience of people living with dementia (PLWD) and their carers. This paper systematically reviews the literature to identify studies that administered a resilience measurement scale with PLWD and/or their carers and examines the psychometric properties of these measures. Electronic abstract databases and the internet were searched, and an international network contacted to identify peer-reviewed journal articles. Two authors independently extracted data. They critically reviewed the measurement properties from the available psychometric data in the studies, using a standardised checklist adapted for purpose. Fifty-one studies were included in the final review, which applied nine different resilience measures, eight developed in other populations and one developed for dementia carers in Thailand. None of the measures were developed for use with people living with dementia. The majority of studies (N = 47) focussed on dementia carers, three studies focussed on people living with dementia and one study measured both carers and the person with dementia. All the studies had missing information regarding the psychometric properties of the measures as applied in these two populations. Nineteen studies presented internal consistency data, suggesting seven of the nine measures demonstrate acceptable reliability in these new populations. There was some evidence of construct validity, and twenty-eight studies hypothesised effects a priori (associations with other outcome measure/demographic data/differences in scores between relevant groups) which were partially supported. The other studies were either exploratory or did not specify hypotheses. This limited evidence does not necessarily mean the resilience measure is not suitable, and we encourage future users of resilience measures in these populations to report information to advance knowledge and inform further reviews. All the measures require further psychometric evaluation in both these populations. The conceptual adequacy of the measures as applied in these new populations was questionable. Further research to understand the experience of resilience for people living with dementia and carers could establish the extent current measures -which tend to measure personal strengths -are relevant and comprehensive, or whether further work is required to establish a new resilience outcome measure.

Peer support for people living with rare or young onset dementia: An integrative review.

OBJECTIVES: The aim of this integrative review was to identify and synthesize the literature on peer support interventions for people living with or caring for someone with a rare or young onset dementia. DESIGN: A literature search of articles was performed using the Nipissing University Primo search system, a central index that enables simultaneous searches across databases which included MEDLINE (PubMed), Web of Science, PsycINFO, CINAHL, Sociological Abstracts, Cochrane Library. RESULTS: The eleven papers that met the inclusion criteria spanned eighteen years and from five countries. Studies reported on peer support programs that were either hospital-based (n = 6) or community-based (n = 4), and were predominantly led by disciplines in the health sciences. Only one study did not involve delivering services. There was a range of methodological quality within the studies included in the review. Further analysis and synthesis led to the identification of three overarching peer support themes. These included: (1) peers as necessarily part of social support interventions; (2) a theoretical portmanteau; and (3) dementia spaces and relationality. CONCLUSION: Consistent with a much larger body of work examining peer involvement in social interventions, this review reinforced the valuable contribution of peers. A full understanding of the mechanisms of change was not achieved. Notwithstanding, the issue of studies neglecting to sufficiently conceptualize and describe interventions is an important one - drawing attention to the need to continue to explore varied delivery, including co-produced models, and more effective evaluation strategies to inform the dementia care sector.

Effects of an e-health intervention 'iSupport' for reducing distress of dementia carers: protocol for a randomised controlled trial and feasibility study.

INTRODUCTION: In the UK, National Health Service (NHS) guidelines recommend that informal carers of people living with dementia should be offered training to help them develop care skills and manage their own physical and mental health. The WHO recommends access to affordable, proven, well-designed, online technologies for education, skills training and support for dementia carers. In response to these recommendations, this multisite randomised controlled trial (RCT) is the first study in the UK to evaluate the clinical and cost-effectiveness of an online support programme developed by the WHO called 'iSupport for dementia carers'. METHODS AND ANALYSIS: 350 informal carers (age 18+ years) living in Britain who self-identify as experiencing stress and depression will be recruited. They will be randomised to receive 'iSupport', or standardised information about caring for someone with dementia (control-comparison). Data will be collected via videoconferencing (eg, Zoom) or telephone interview at baseline, 3 months and 6 months. Intention-to-treat analysis will ascertain effectiveness in the primary outcomes (distress and depression) and combined cost, and quality-adjusted life-year data will be used to assess cost-effectiveness compared with usual care from a public sector and wider societal perspective. A mixed-methods process evaluation with a subgroup of carers in the intervention (~N=50) will explore the barriers and facilitators to implementing 'iSupport'. A non-randomised feasibility study will adapt 'iSupport' for young carers (n=38 participants, age 11-17 years). ETHICS AND DISSEMINATION: The research plan was scrutinised by National Institute for Health Research reviewers ahead of funding being awarded. Ethical approval was granted by Bangor University's School of Health and Medical Sciences Academic Ethics Committee, reference number 2021-16915. Dissemination plans include delivering events for stakeholders, social media, a project website, developing policy briefings, presenting at conferences and producing articles for open access publications. TRIAL REGISTRATION NUMBER: ISRCTN17420703.

eHealth and Web-Based Interventions for Informal Carers of People With Dementia in the Community: Umbrella Review.

BACKGROUND: The prevalence of dementia is increasing, and there are many associated problems that family members face as informal carers, including emotional, physical, and financial difficulties. There are benefits for a person with dementia to live at home for as long as possible, and therefore, supporting their informal carers is crucial. The growing interest in supporting carers through internet-based interventions is evidenced by the volume of systematic reviews on this topic. It is now appropriate to systematically examine this body of work and provide an overview of the literature. OBJECTIVE: This umbrella review aimed to identify the most effective internet-based intervention content and delivery method to support those caring for someone with dementia living in the community. METHODS: PsycINFO, Web of Science, CINAHL, MEDLINE, Cochrane Library, and PubMed were searched for systematic reviews examining the effectiveness of web-based interventions for informal carers of people with dementia. A total of 3 reviewers extracted data and evaluated the quality of the papers. To ascertain the extent to which the systematic reviews reported on the same evidence, the proportion of overlap between their included studies was calculated. Qualitative research findings were extracted and reported. RESULTS: A total of 21 papers were included in the study. The quality of the review papers was mainly rated as low to moderate, and 10% (2/21) of papers were of high quality. The findings suggest that multicomponent interventions were the most effective in supporting carers. These included combinations of cognitive behavioral therapy and relaxation strategies, educational resources, and online support groups. Interventions that were delivered on the web but included sessions with a personal element, such as telephone contact, showed the best results. When comparing the studies reviewed in all the review papers, a moderate overlap was noted. However, when comparing individual reviews with each other, they showed a high overlap of the included studies. CONCLUSIONS: Mixed delivery methods and intervention content showed the most effective results in supporting those caring for people with dementia. However, many papers do not separate the results for differing intervention contents or delivery; this needs to be considered when drawing conclusions. There was an overlap among the studies included in the reviews. This suggests a lack of current research on the effectiveness of web-based interventions for people caring for a person with dementia. There was also a lack of consistency in the outcome measures across all papers. Future studies can involve updating research on the effectiveness of these interventions while distinguishing between different intervention types, thus creating guidelines for the use of standardized measures to enable comparisons of intervention effects and improve the scientific quality of the overall research. TRIAL REGISTRATION: PROSPERO CRD42021241559; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=241559.

The Development of Videoconference-Based Support for People Living With Rare Dementias and Their Carers: Protocol for a 3-Phase Support Group Evaluation.

BACKGROUND: People living with rarer dementias face considerable difficulty accessing tailored information, advice, and peer and professional support. Web-based meeting platforms offer a critical opportunity to connect with others through shared lived experiences, even if they are geographically dispersed, particularly during the COVID-19 pandemic. OBJECTIVE: We aim to develop facilitated videoconferencing support groups (VSGs) tailored to people living with or caring for someone with familial or sporadic frontotemporal dementia or young-onset Alzheimer disease, primary progressive aphasia, posterior cortical atrophy, or Lewy body dementia. This paper describes the development, coproduction, field testing, and evaluation plan for these groups. METHODS: We describe a 3-phase approach to development. First, information and knowledge were gathered as part of a coproduction process with members of the Rare Dementia Support service. This information, together with literature searches and consultation with experts by experience, clinicians, and academics, shaped the design of the VSGs and session themes. Second, field testing involved 154 Rare Dementia Support members (people living with dementia and carers) participating in 2 rounds of facilitated sessions across 7 themes (health and social care professionals, advance care planning, independence and identity, grief and loss, empowering your identity, couples, and hope and dementia). Third, a detailed evaluation plan for future rounds of VSGs was developed. RESULTS: The development of the small groups program yielded content and structure for 9 themed VSGs (the 7 piloted themes plus a later stages program and creativity club for implementation in rounds 3 and beyond) to be delivered over 4 to 8 sessions. The evaluation plan incorporated a range of quantitative (attendance, demographics, and geography; pre-post well-being ratings and surveys; psycholinguistic analysis of conversation; facial emotion recognition; facilitator ratings; and economic analysis of program delivery) and qualitative (content and thematic analysis) approaches. Pilot data from round 2 groups on the pre-post 3-word surveys indicated an increase in the emotional valence of words selected after the sessions. CONCLUSIONS: The involvement of people with lived experience of a rare dementia was critical to the design, development, and delivery of the small virtual support group program, and evaluation of this program will yield convergent data about the impact of tailored support delivered to geographically dispersed communities. This is the first study to design and plan an evaluation of VSGs specifically for people affected by rare dementias, including both people living with a rare dementia and their carers, and the outcome of the evaluation will be hugely beneficial in shaping specific and targeted support, which is often lacking in this population. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/35376.

A qualitative systematic review of the role of families in supporting communication in people with dementia.

BACKGROUND: Cognitive-communication difficulties are often associated with dementia and can impact a person's ability to participate in meaningful conversations. This can create challenges to families, reflecting the reality that people living with dementia rarely have just one regular conversation partner, but interact with multiple family members. To date, there is limited evidence of the impact of changes in communication patterns in families. A family systems approach, with foundations in psychology, can be used to explore the impact of communication difficulties on multiple different family members, including the person living with dementia and potential coping strategies used by individuals, together with the family as a whole. METHODS & PROCEDURES: A systematic review of primary qualitative research was conducted to identify and examine research exploring communication and interaction within families living with dementia. Studies were identified through a comprehensive search of major databases and the full-text articles were subject to a quality appraisal. We conducted a thematic analysis on the literature identified to consider the role of families in supporting communication for people with dementia. OUTCOMES & RESULTS: The searches identified 814 possible articles for screening against the eligibility criteria. Nine articles were included in the final review. Three major themes emerged from the analysis of the included studies: (1) 'identities changing' reflected how interactions within the family systems impacted on identities; (2) 'loss' reflected the grief experienced by families due to changes in communication; and (3) 'developing communication strategies' highlighted strategies and approaches that families affected by dementia may use organically to engage in meaningful interactions and maintain connection. Only one study explicitly used a family systems approach to understand how families manage the changes in interaction resulting from dementia. CONCLUSIONS & IMPLICATIONS: The findings may usefully inform the clinical practice of speech and language therapists in terms of communication strategies and coping mechanisms that may be advised to facilitate connection in families living with dementia. Further research using a family systems approach to exploring communication in dementia may help to support the implementation of family-centred practice as recommended in policy. WHAT THIS PAPER ADDS: What is already known on the subject There is increasing recognition of the impact of dementia on whole families and the need for family-centred interventions to enhance quality of life. However, much of the research to date that explores communication within families affected by dementia examines interaction between dyads, largely overlooking the roles and skills of other familial communication partners. To the authors' knowledge, there has been no previous review of the literature using a family systems approach, which has the potential to inform clinical practice of those working in dementia care. What this paper adds to existing knowledge The review examines and understands what is known about the approaches used by families affected by communication changes resulting from dementia to preserve connection. It collates the evidence from qualitative studies examining approaches and strategies used by individual conversation partners, including people with dementia, as well as the family system as a whole, to facilitate meaningful interactions, and proposes recommendations for clinicians working in this field. Furthermore, we consider the potential benefits of using a family systems approach to understand the context of people living with dementia and how this could enhance communication, personhood and well-being. What are the potential or actual clinical implications of this work? This review highlights practical conversation strategies and interactional approaches that may serve to enhance communication and preserve relationships between people with dementia and their family members. Such techniques have the potential to be advised by Speech and Language Therapists working in dementia care as part of tailored, relationship-centred care and support that they provide.

When One Health Meets the United Nations Ocean Decade: Global Agendas as a Pathway to Promote Collaborative Interdisciplinary Research on Human-Nature Relationships.

Strong evidence shows that exposure and engagement with the natural world not only improve human wellbeing but can also help promote environmentally friendly behaviors. Human-nature relationships are at the heart of global agendas promoted by international organizations including the World Health Organization's (WHO) "One Health" and the United Nations (UN) "Ocean Decade." These agendas demand collaborative multisector interdisciplinary efforts at local, national, and global levels. However, while global agendas highlight global goals for a sustainable world, developing science that directly addresses these agendas from design through to delivery and outputs does not come without its challenges. In this article, we present the outcomes of international meetings between researchers, stakeholders, and policymakers from the United Kingdom and Brazil. We propose a model for interdisciplinary work under such global agendas, particularly the interface between One Health and the UN Ocean Decade and identify three priority research areas closely linked to each other: human-nature connection, conservation-human behavior, and implementation strategies (bringing stakeholders together). We also discuss a number of recommendations for moving forward.

iSupport for Young Carers: An Adaptation of an e-Health Intervention for Young Dementia Carers.

Young dementia carers need to be recognised and supported in their role. They need help to understand the illness, what changes are expected and how it can affect their family member. Many support services, partly due to the COVID pandemic, have moved online and have been shown to be acceptable as they are low cost and reduce access barriers. iSupport is an evidence-informed e-health training programme developed by the World Health Organization (WHO) to support adult dementia carers. This paper reports on the co-design of an adapted version of iSupport for young carers. A theoretically driven co-design approach, drawing on the lived experiences of young dementia carers and experts who work with this target group was followed. As a result of this study iSupport for Young Carers was created. It is the first e-health intervention of its kind and aims to support the mental health, knowledge and skills of young dementia carers. In turn, it could improve the quality of the support that service providers can offer, and this can result in increased levels of identification of these young people. The work presented also provides opportunities for other countries and demographic groups to translate and adapt iSupport for Young Carers to their specific cultural context.

A longitudinal exploration of mental health resilience, cognitive impairment and loneliness.

OBJECTIVE: There is a growing interest in how people living with dementia may achieve good outcomes and be resilient despite their health challenges. Understanding what might be important for resilience in this population is largely untested theory. METHODS: The analysis draws a subsample with cognitive impairment (N = 579) from two waves of the Cognitive Function and Ageing Studies Wales study, a nationally representative study of community-dwelling people aged 65+ in Wales. We constructed a measure of mental health resilience (MHR) defined as no depression, no anxiety and high well-being. Drawing on a resilience framework, we tested univariate and cumulative effects models of the factors that enable MHR, and then examined whether MHR is important for reducing loneliness over time. RESULTS: Across both waves of data 22% (n = 121) met the criteria for MHR. The cumulative effects model found the odds of MHR were greater for male gender, higher self-esteem, greater social resources and no subjective memory complaints. Controlling for these significant predictors, MHR significantly predicted lower total and sub-scale scores for loneliness at wave 2. Sensitivity analysis shows these effects held at lower levels of cognitive function when the Mini-Mental State Examination score was <25, but not at <23. CONCLUSIONS: This paper addresses a gap in research regarding the conceptualisation and measurement of resilience when facing cognitive impairment. Understanding what aspects of a person's life might enable good mental health despite cognitive impairment-to be resilient-could inform effective strategies for friends and families, along with health, and social policy and practice.

The feasibility of a Comprehensive Resilience-building psychosocial Intervention (CREST) for people with dementia in the community: protocol for a non-randomised feasibility study.

BACKGROUND: A dementia diagnosis can prevent people from participating in society, leading to a further decline in cognitive, social and physical health. However, it may be possible for people with dementia to continue to live meaningful lives and continue to participate actively in society if a supportive psychosocial environment exists. Resilience theory, which focuses on strengthening personal attributes and external assets in the face of serious challenges, may provide a scaffold on which an inclusive multifaceted psychosocial supportive environment can be built. This protocol paper describes a study to determine the feasibility of conducting a multifaceted complex resilience building psychosocial intervention for people with dementia and their caregivers living in the community. METHODS: This is a non-randomised feasibility study. Ten participants with dementia and their primary caregivers living in the community will be recruited and receive the CREST intervention. The intervention provides (a) a 7-week cognitive stimulation programme followed by an 8-week physical exercise programme for people with dementia and (b) a 6-week educational programme for caregivers. Members of the wider community will be invited to a dementia awareness programme and GP practices to a dementia training workshop. Trained professionals will deliver all intervention components. Outcomes will assess the feasibility and acceptability of all study processes. The feasibility and acceptability of a range of outcomes to be collected in a future definitive trial, including economic measurements, will also be explored. Finally, social marketing will be used to map a route toward stigma change in dementia for use in a subsequent trial. Quantitative feasibility outcome assessments will be completed at baseline and after completion of the 15-week intervention while qualitative data will be collected at recruitment, baseline, during and post-intervention delivery. CONCLUSION: This feasibility study will provide evidence regarding the feasibility and acceptability of a comprehensive multifaceted psychosocial intervention programme for people with dementia and their caregivers (CREST). The results will be used to inform the development and implementation of a subsequent RCT, should the findings support feasibility. TRIAL REGISTRATION: ISRCTN25294519 Retrospectively registered 07.10.2019.