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Supporting ageing in place, quality of life, and activity engagement are public health priorities for people with dementia. The importance of maintaining opportunities for meaningful activities has been widely acknowledged for those with dementia in long-term care, but little is known about what makes activities meaningful for, and how they are experienced by, people with different types of dementia in their own homes. This study used focussed ethnographic methods to explore the motivations and meanings of everyday activity engagement within the homes of 10 people with memory-led Alzheimer's disease and 10 people with posterior cortical atrophy. While participants' interactions with their everyday environments were challenged by their diagnoses, they were all finding ways to continue meaning-making via various activities. The main findings are encapsulated in three themes: (1) The fun and the function of activities; (2) Reciprocities of care, and (3) The constitution and continuity of (a changing) self. Ongoing engagement with both fun and functional activities offered participants living with different dementias opportunities to connect with others, to offer care and support (as well as receive it), and to maintain a sense of self and identity. Implications are discussed regarding the development and delivery of tailored interventions and support to enable continued engagement in meaningful activities for people with different types of dementia living in the community. [ABSTRACT FROM AUTHOR]

Background and purpose: Logopenic variant primary progressive aphasia (lvPPA) is a major variant presentation of Alzheimer's disease (AD) that signals the importance of communication dysfunction across AD phenotypes. A clinical staging system is lacking for the evolution of AD‐associated communication difficulties that could guide diagnosis and care planning. Our aim was to create a symptom‐based staging scheme for lvPPA, identifying functional milestones relevant to the broader AD spectrum. Methods: An international lvPPA caregiver cohort was surveyed on symptom development under an 'exploratory' survey (34 UK caregivers). Feedback from this survey informed the development of a 'consolidation' survey (27 UK, 10 Australian caregivers) in which caregivers were presented with six provisional clinical stages and feedback was analysed using a mixed‐methods approach. Results: Six clinical stages were endorsed. Early symptoms included word‐finding difficulty, with loss of message comprehension and speech intelligibility signalling later‐stage progression. Additionally, problems with hearing in noise, memory and route‐finding were prominent early non‐verbal symptoms. 'Milestone' symptoms were identified that anticipate daily‐life functional transitions and care needs. Conclusions: This work introduces a new symptom‐based staging scheme for lvPPA, and highlights milestone symptoms that could inform future clinical scales for anticipating and managing communication dysfunction across the AD spectrum. [ABSTRACT FROM AUTHOR]

Objectives: Predeath grief conceptualizes complex feelings of loss experienced for someone who is still living and is linked to poor emotional well-being. The Road Less Travelled program aimed to help carers of people with rarer dementias identify and process predeath grief. This study evaluated the feasibility, acceptability, and preliminary effectiveness of this program. Design: Pre–post interventional mixed methods study. Setting: Online videoconference group program for carers across the UK held in 2021. Participants: Nine family carers of someone living with a rare form of dementia. Eight were female and one male (mean age 58) with two facilitators. Intervention: The Road Less Travelled is an online, facilitated, group-based program that aims to help carers of people with rarer dementias to explore and accept feelings of grief and loss. It involved six fortnightly 2-hour sessions. Measurements: We collected measures for a range of well-being outcomes at baseline (T1), post-intervention (T2), and 3 months post-intervention (T3). We conducted interviews with participants and facilitators at T2. Results: Participant attendance was 98% across all sessions. Findings from the semistructured interviews supported the acceptability of the program and identified improvements in carer well-being. Trends in the outcome measures suggested an improvement in quality of life and a reduction in depression. Conclusion: The program was feasible to conduct and acceptable to participants. Qualitative reports and high attendance suggest perceived benefits to carers, including increased acceptance of grief, and support the need for a larger-scale pilot study to determine effectiveness. [ABSTRACT FROM AUTHOR]

There is a paucity of evidence regarding the effects of sport and physical activity on wellbeing in dementia. The present study is the first known study to involve golf with this population. People with dementia (n = 10) and carers (n = 5) participated in a 6-week golf program, facilitated by golf center staff (n = 3). Multiple avenues of data collection were utilized and were subject to thematic analysis. Five central themes were identified: emotion, respite, losing the "dementia" label, friendship/camaraderie, and improving relationships. Underlying subthemes were also identified, while potential links between themes were highlighted. Themes were also considered in terms of which participants (person with dementia, carer, and staff) provided evidence for each theme. This study presents preliminary support for the role of golf to enhance the psychological and social wellbeing of people with early stages of dementia, carers, and staff. Potential mechanisms and future research are discussed. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

We used quantitative text analysis to examine conversations in a series of online support groups attended by care partners of people living with rare dementias (PLWRD). We used transcripts of 14 sessions (>100,000 words) to explore patterns of communication in trained facilitators' (n = 2) and participants' (n = 11) speech and to investigate the impact of session agenda on language use. We investigated the features of their communication via Poisson regression and a clustering algorithm. We also compared their speech with a natural speech corpus. We found that differences to natural speech emerged, notably in emotional tone (d = −3.2, p < 0.001) and cognitive processes (d = 2.8, p < 0.001). We observed further differences between facilitators and participants and between sessions based on agenda. The clustering algorithm categorised participants' contributions into three groups: sharing experience, self-reflection, and group processes. We discuss the findings in the context of Social Comparison Theory. We argue that dedicated online spaces have a positive impact on care partners in combatting isolation and stress via affiliation with peers. We then discuss the linguistic mechanisms by which social support was experienced in the group. The present paper has implications for any services seeking insight into how peer support is designed, delivered, and experienced by participants. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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). 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). 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. 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. [ABSTRACT FROM AUTHOR]

Little is known regarding the nuanced experiences of family carers for people living with rare dementias (PLWRD), with no known literature exploring their positive experiences of caring discussed within peer support group settings. This article explores family carers of PLWRD's positive experiences reported in video conferencing peer support groups. Six peer support group sessions involving a total of nine participants were qualitatively analysed using thematic analysis, guided by the conceptual framework of positive aspects of caring (CFPAC) (Carbonneau et al., 2010). Six themes were identified: (1) Protecting, maintaining, enjoying and finding strength in their relationship with the PLWRD; (2) Using tools and resources in response to challenges; (3) Positive impact of interactions and others' responses to the dementia; (4) Overcoming barriers to taking a break while maintaining their wellbeing, (5) Maintaining positive outlooks and showing psychological resilience in adversity; and (6) Attributing meaning to the caring role. This article highlights family carers of PLWRD's positive psychological, physical and social resources, balanced against the challenges of caring and maintaining their wellbeing, and identifies ways of promoting family carers' positive caring experiences and resources within healthcare and supportive settings. [ABSTRACT FROM AUTHOR]

People affected by rarer forms of dementia often have a long and difficult experience obtaining a diagnosis and appropriate support, impacting family, employment and social relationships, quality of life and wellbeing. For this population progressive cognitive symptoms affect skills other than memory and disproportionately occur under the age of 65 years, often resulting in misdiagnosis and lack of appropriate care pathways. The objective of this study will be to better understand the subjective experience of the time period from first noticing symptoms to obtaining a formal diagnosis, through to accessing support, and onward to the present time. Through the concurrent use of line drawings and video-recorded interviews we will collect the stories of people living with different rarer dementias and/or family members who are care partners in Canada and the United Kingdom. Narrative and visual analysis will be used in parallel to methodologically explore how line drawing and verbal discourse interact and inform each other to construct knowledge, and how the use of drawing lines might enrich research interviews and increase accessibility of research participation. This novel research approach may also have implications for clinical interviewing, support services, and public engagement. To the best of our knowledge, this is the first study to retrospectively explore over time the experiences of people affected by rarer forms of dementia from initial symptoms—to diagnosis—to accessing support—to the present, using visual and verbal methodologies. [ABSTRACT FROM AUTHOR]

People affected by rarer forms of dementia often have a long and difficult experience obtaining a diagnosis and appropriate support, impacting family, employment and social relationships, quality of life and wellbeing. For this population progressive cognitive symptoms affect skills other than memory and disproportionately occur under the age of 65 years, often resulting in misdiagnosis and lack of appropriate care pathways. The objective of this study will be to better understand the subjective experience of the time period from first noticing symptoms to obtaining a formal diagnosis, through to accessing support, and onward to the present time. Through the concurrent use of line drawings and video-recorded interviews we will collect the stories of people living with different rarer dementias and/or family members who are care partners in Canada and the United Kingdom. Narrative and visual analysis will be used in parallel to methodologically explore how line drawing and verbal discourse interact and inform each other to construct knowledge, and how the use of drawing lines might enrich research interviews and increase accessibility of research participation. This novel research approach may also have implications for clinical interviewing, support services, and public engagement. To the best of our knowledge, this is the first study to retrospectively explore over time the experiences of people affected by rarer forms of dementia from initial symptoms--to diagnosis--to accessing support--to the present, using visual and verbal methodologies. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

People living with rarer forms of dementia tend to have progressive cognitive symptoms affecting skills other than memory and/or onset before the age of 65 years. They are often misdiagnosed and due to symptom profile or age of onset, do not usually fit well with care pathways designed for older people with typical Alzheimer's disease or vascular dementia. Although the arts have been increasingly used as interventions to support people with dementia, there is very little attention given to rarer dementia forms in arts and health research or practice. The objective of the present international study seeks to systematically explore four diverse forms of poetry writing within this population through virtual and in-person small and large group formats. Our approach includes investigating poetic processes as methodology through the lens of an arts-based methodological approach in order to explore how poems construct knowledge and a felt experience. We will also use more traditional qualitative approaches to understand the experience of writing, reading and listening to poetry as an intervention that can be used with different rarer forms of dementia. To the best of our knowledge, this will be the first study to explore poetry using multiple research protocols. The results will have implications for methodology development, co-constructed poetic inquiry and multiple opportunities for involving poetry in supporting people with dementia and family members. [ABSTRACT FROM AUTHOR]

Dementia is a neurodegenerative syndrome that can lead to profound psychological and social challenges for people with dementia and their informal caregivers. Previous research has found positive effects of arts‐based interventions for people with dementia and caregivers that have been dyadic in nature and the present article sought to review these findings. A systematic literature review was conducted to investigate psychosocial outcomes of dyadic arts interventions. PsychINFO, Medline, Web of Science and ASSIA databases (from journal inception to March 2020) were searched as well as Google Scholar and reference lists of relevant studies were searched. Interventions were delivered to people with dementia and their caregivers in community‐based settings across five countries. Thirteen peer‐reviewed journal articles met the criteria for inclusion in this review, six focusing on performing arts and seven on visual arts. The findings suggested that choral singing and visual arts interventions may have positive effects on psychosocial outcomes for both people with dementia and their informal caregivers. Improved well‐being, quality of life, mood, enhanced identity and decreased social isolation were found in some studies. Importantly, across all studies, participants reported enjoying arts activities. This is the first review to systematically assess dyadic arts activities in a dementia context. These activities offer enjoyable and engaging experiences for many person with dementia and caregivers and were generally found to have positive results but mostly small sample size, lack of control groups and different outcome measures made comparisons challenging. Future research recommendations include further theoretical development, identifying key intervention components, and specifying relevant and measurable theoretically informed outcomes within dyadic interventions for this population. [ABSTRACT FROM AUTHOR]

Research suggests that experience of the natural environment may have a range of beneficial outcomes for children and young people. A systematic review of the peer-reviewed empirical literature focused on research involving direct interaction with nature amongst children and young people and its impact on wellbeing; 14 papers, within the domains of childhood and adolescence, were identified for inclusion in the review. Within these domains, a range of wellbeing outcomes were identified and grouped into thematic areas of self-esteem and confidence, positive and negative affect, stress reduction and restoration, social benefits, and resilience. Findings related to wellbeing outcomes were synthesised and critiqued, and research and clinical implications discussed. [ABSTRACT FROM AUTHOR]

Background: This literature review examined the existing evidence base for the impact of both live and recorded music interventions involving active participation in a dementia population. Methodology: PsycINFO, Medline, CINAHL, Web of Science, PubMed and Cochrane Library were searched and 15 studies met inclusion criteria. Results: There was a positive impact on behavioural and psychological symptoms, quality of life, communication and some aspects of cognitive function; methodological limitations, however, make it difficult to offer firm conclusions. Interventions using recorded music resulted in more consistent positive behavioural and psychological outcomes, whereas interventions using live music reported a benefit to communication and relationships. Conclusions: Although live and recorded music showed benefits, and should be considered in dementia care, the use of different outcome measures made definitive comparisons problematic. In order to better understand mechanisms of change, one future research area should explore how group music interventions affect communication by more closely assessing processes during live and recorded music. [ABSTRACT FROM AUTHOR]

Background and Objectives Research has indicated the benefit of music interventions on biological, psychological, and cognitive aspects of dementias, yet there is limited research focusing on music's role in communication. This study developed a conceptual understanding of how people with late-stage dementia may express themselves nonverbally and interact with others during a live music group over time. Research Design and Methods Eight people with advanced dementias in residential care (aged 82–97 years), four care staff, and three musicians participated in 8-hr-long weekly live Music for Life sessions and listened to 1-hr-long recorded music session. Visual grounded theory was used to analyze video data collected nonintrusively via the Fly 360-degree camera. Results The live music group facilitated a multisensory communicative environment allowing for verbal and nonverbal communicative actions, social interactional components and agency to develop over time. These aspects were influenced by three factors: time, one-to-one interaction within a group setting and the characteristics of the music. Discussion and Implications Nonverbal communication in later-stage dementia may be overlooked or underestimated by busy care staff and families. Using music as an interactive way to communicate can help develop mirroring and turn-taking which has been shown to improve quality of life for people with communication impairment, increase their nonverbal communication and allow for a connection to be built between people. Although further research is recommended, individuals responsible for residential care should feel confident that the development of ongoing music groups for this population is warranted as part of ongoing care. [ABSTRACT FROM AUTHOR]

Objectives: The Rare Dementia Support (RDS) Impact study will be the first major study of the value of multicomponent support groups for people living with or supporting someone with a rare form of dementia. The multicentre study aims to evaluate the impact of multicomponent support offered and delivered to people living with a rare form of dementia, comprising the following five work packages (WPs): (a) longitudinal cohort interviews, (b) theoretical development, (c) developing measures, (d) novel interventions, and (e) economic analysis.Methods: This is a mixed-methods design, including a longitudinal cohort study (quantitative and qualitative) and a feasibility randomised control trial (RCT). A cohort of more than 1000 individuals will be invited to participate. The primary and secondary outcomes will be in part determined through a co-design nominal groups technique prestudy involving caregivers to people living with a diagnosis of a rare dementia. Quantitative analyses of differences and predictors will be based on prespecified hypotheses. A variety of quantitative (eg, analysis of variance [ANOVA] and multiple linear regression techniques), qualitative (eg, thematic analysis [TA]), and innovative analytical methods will also be developed and applied by involving the arts as a research method.Results: The UCL Research Ethics Committee have approved this study. Data collection commenced in January 2020.Conclusions: The study will capture information through a combination of longitudinal interviews, questionnaires and scales, and novel creative data collection methods. The notion of "impact" in the context of support for rare dementias will involve theoretical development, novel measures and methods of support interventions, and health economic analyses. [ABSTRACT FROM AUTHOR]

Objectives: This study aimed to investigate factors influencing referral of children with physical illness to paediatric psychology. Due to high rates of mental health problems within this population, studies have shown that referral to paediatric psychology should be increased. However, few studies have examined factors shaping healthcare professionals' referral behaviour. Methods: This study used the theory of planned behaviour to develop a questionnaire which explores factors influencing the referral of children and families to paediatric psychology. Psychometric properties of the questionnaire were examined. Results: The questionnaire was found to have good reliability and validity. The main constructs of the theory of planned behaviour were useful in predicting intention to refer to paediatric psychology. Specific beliefs about referral were shown to influence intention to refer. Conclusion: Findings suggest that individual attitudes and beliefs can impact healthcare professionals' referral behaviour, indicating that multidisciplinary interventions and inter-professional education relating to the psychological aspects of illness are required. [ABSTRACT FROM AUTHOR]

The psycho-social contexts of older lesbian, gay and bisexual (LGB) individuals suggest that they may face unique strengths and barriers in accessing social support. The present review aimed to explore what is known about this by providing a synthesis of this area of research and a methodological critique. The Applied Social Sciences Index (ASSIA), Psychinfo and Medline databases were searched and 22 relevant articles were identified. Key findings were extracted and quality was assessed using a standardised rating scale. The findings indicated that although many older LGB people report similar-sized support networks to older heterosexuals, more support came from friends and less from biological family members. Many reported not receiving enough support; it is possible that differences in care-giving between friends and family and anticipated social support difficulties due to previous LGB-stigma experiences partially account for this. Current recruitment strategies may mean that more-connected older LGB people are over-represented in research. There is a lack of research with the 'old-old' population, bisexual people, those with significant health needs, those outside the United States of America and those with additional characteristics associated with discrimination. Practical and research implications are discussed and it is suggested that friendship–carer dyads may need support to have more explicit discussions about care-giving roles due to a lack of societal templates for these kinds of relationships. [ABSTRACT FROM AUTHOR]

Background: Dementia diagnoses are typically made where there is a significant, progressive decline in cognitive functioning. Evidence of such decline is increasingly established through information provided by informants. However, some studies demonstrate that informant reports may not always be accurate and may be biased by extraneous factors. This review aimed to elucidate factors that have been identified as potentially having some influence on informant reports of cognitive decline. Method: A search of PsychInfo, ASSIA, PubMed and Web of Science databases identified 13 peer-reviewed studies that met criteria for inclusion in the review. Results: Reviewed studies provide some evidence for associations between informant-reported cognitive decline and demographic characteristics (patient age, education, ethnicity and informant gender), clinical factors (dementia severity, diagnosis, behavioural disturbance, everyday functioning) and psychological factors (patient depressive symptoms and neuroticism, informant psychological distress and burden). Several methodological limitations of the evidence base were identified. Conclusion: Findings suggest that informant-reported cognitive decline may not always be wholly reliable in that information holds potential to be influenced by both patient and informant characteristics. Clinical and empirical implications are discussed. [ABSTRACT FROM AUTHOR]

In a quasi-experimental design (N = 80), this study examined the wellbeing impact of handling museum artefacts, by testing for differences across domain, time, gender and stages of dementia. The results indicated that people with early and moderate impairment showed positive increases in wellbeing, regardless of the type of dementia but those with early stage dementia showed larger positive increases in wellbeing. We can feel confident that for most people with early- to middle-stage dementia, handling museum objects in a supportive group environment increases subjective wellbeing and should be considered part of a health promotion strategy in dementia care. [ABSTRACT FROM AUTHOR]

Introduction: Moving house later in life can be a major transition and valued material objects may be important to this process. The present study aimed to develop an explanatory model for the meanings of material objects to older adults in the context of a residential transition. Method: Using grounded theory methodology, 12 participants were interviewed about the meanings and roles of valued material objects following a residential transition. Older adult participants lived in either their own home or a care home. Results: The model entails two core categories, "threats to identity" and "objects and identity continuity" along with four explanatory concepts, "moving and identity discontinuity", "connections across time", "attachments to others", and "preserving self and ancestors in the memories of the next generation". Discussion: Objects were described to have important personal meanings which helped people maintain a sense of identity continuity following residential transition. They were associated with comfort, security and life review processes, which support identity continuity later in life. Conclusion: Moving house later in life can threaten a person's sense of self. However, material objects can help maintain a sense of identity continuity through reminiscence and life review processes. Implications for community and residential care moving house transitions are discussed. [ABSTRACT FROM AUTHOR]

This document is a correction notice for an article titled "A mixed methods evaluation of a program exploring predeath grief and loss for carers of people with rarer dementias." The correction addresses an error in the affiliation of several authors. The correct affiliation for these authors is the Dementia Research Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, University College London, UK. The original article has been updated to reflect this correction. [Extracted from the article]

In Western society, identity formation is argued to be one of the key developmental tasks of adolescence. Despite implications for adolescent development, research into chronic illness (CI) onset during this period has been notably sparse. This study aimed to explore how diagnosis impacts on the developmental tasks of adolescence, what role adolescent-onset CI plays in identity formation, and how adolescents incorporate the diagnosis into their identity using a narrative analysis. Individual semi-structured interviews were carried out with eight young people aged 14 to 19years who lived with a diagnosis of a CI diagnosed between the ages of 12 and 16 years. Five core narrative themes emerged: walking a different path, tolerating contradiction, a changed interface with others, locating power and a fluid relationship. Narratives were considered to have been influenced by factors such as the interview context and dominant social narratives concerning health and illness. Adolescent-onset CI was found to have a significant, though not exclusively negative, impact on developmental tasks. The findings are discussed in relation to existing literature and potential clinical implications. [ABSTRACT FROM AUTHOR]

Creativity research has a substantial history in psychology and related disciplines; one component of this research tradition has specifically examined artistic creativity. Creativity theories have tended to concentrate, however, on creativity as an individual phenomenon that results in a novel production, and on cognitive aspects of creativity, often limiting its applicability to people with cognitive impairments, including those with a dementia. Despite growing indications that creativity is important for the wellbeing of people living with dementias, it is less well understood how creativity might be conceptualised, measured and recognised in this population, and how this understanding could influence research and practise. This paper begins by exploring prevailing concepts of creativity and assesses their relevance to dementia, followed by a critique of creativity and dementia research related to the arts. Perspectives from researchers, artists, formal and informal caregivers and those with a dementia are addressed. We then introduce several novel psychological and physiological approaches to better understand artistic-related creativity in this population and conclude with a conceptualisation of artistic creativity in the dementias to help guide future research and practise. [ABSTRACT FROM AUTHOR]

Background: This review focused on evaluation of United Kingdom social prescribing schemes published in peer-reviewed journals and reports. Schemes, including arts, books, education and exercise "on prescription" refer patients to community sources of non-clinical intervention. Method: A systematised review protocol appraised primary research material evaluating social prescribing schemes published 2000–2015. Searches were performed in electronic databases using keywords, and articles were screened for evaluation of patient data, referral process, assessment method and outcomes; non-evaluated articles were excluded. Results: Of 86 schemes located including pilots, 40 evaluated primary research materials: 17 used quantitative methods including 6 randomised controlled trials; 16 qualitative methods, and 7 mixed methods; 9 exclusively involved arts on prescription. Conclusions: Outcomes included increase in self-esteem and confidence; improvement in mental well-being and positive mood; and reduction in anxiety, depression and negative mood. Despite positive findings, the review identifies a number of gaps in the evidence base and makes recommendations for future evaluation and implementation of referral pathways. [ABSTRACT FROM AUTHOR]

Introduction: The subjective experience of dementia for lesbian and gay individuals is largely absent from the extant literature. This study aimed to explore what it means to experience dementia in this context given the documented psychosocial influences facing this population. A second aim was to develop understanding of these experiences within dyadic relationships. Method: Ten semi-structured interviews were conducted with lesbian and gay individuals with dementia and people with whom they had a significant relationship and analysed using interpretative phenomenological analysis. Results: Three superordinate themes, reflecting characteristics of participants' experience, were identified: duality in managing dementia, giving yourself away vs. holding onto yourself and relationships as sheltered harbours. Ten subthemes indicated the processes that were adopted to adjust and make sense of the experience of dementia. These included decisions around concealment, ensuring safety and the promotion of personhood and couplehood. In line with findings for heterosexual couples, partners had an important role in maintaining the identity of the person with dementia. Conclusions: Results suggest additional and distinct challenges, including experienced and perceived discrimination and heterosexism. In response to these conditions, interviewees worked to resist a 'double stigma' of dementia and sexuality. Findings indicated areas of improvement for dementia services, including training in inclusive practice. [ABSTRACT FROM AUTHOR]

Aims: To assess psychological wellbeing in a novel social prescription intervention for older adults called Museums on Prescription and to explore the extent of change over time in six self-rated emotions ('absorbed', 'active', 'cheerful', 'encouraged', 'enlightened' and 'inspired').Methods: Participants ( n = 115) aged 65-94 years were referred to museum-based programmes comprising 10 weekly sessions, by healthcare and third sector organisations using inclusion criteria (e.g. socially isolated, able to give informed consent, not in employment, not regularly attending social or cultural activities) and exclusion criteria (e.g. unable to travel to the museum, unable to function in a group situation, unlikely to be able to attend all sessions, unable to take part in interviews and complete questionnaires). In a within-participants' design, the Museum Wellbeing Measure for Older Adults (MWM-OA) was administered pre-post session at start-, mid- and end-programme. A total of 12 programmes, facilitated by museum staff and volunteers, were conducted in seven museums in central London and across Kent. In addition to the quantitative measures, participants, carers where present, museum staff and researchers kept weekly diaries following guideline questions and took part in end-programme in-depth interviews.Results: Multivariate analyses of variance showed significant participant improvements in all six MWM-OA emotions, pre-post session at start-, mid- and end-programme. Two emotions, 'absorbed' and 'enlightened', increased pre-post session disproportionately to the others; 'cheerful' attained the highest pre-post session scores whereas 'active' was consistently lowest.Conclusion: Museums can be instrumental in offering museum-based programmes for older adults to improve psychological wellbeing over time. Participants in the study experienced a sense of privilege, valued the opportunity to liaise with curators, visit parts of the museum closed to the public and handle objects normally behind glass. Participants appreciated opportunities afforded by creative and co-productive activities to acquire learning and skills, and get to know new people in a different context. [ABSTRACT FROM AUTHOR]

This article describes video-based observation of three mentalization-based treatment (MBT) art therapy groups in services for people who have received a diagnosis of personality disorder. Four focus groups (service user researchers, MBT trained psychologists, MBT trained art therapists, and the three art therapists who submitted videos) developed descriptions of the practice they observed on video. A grounded theory method was used to develop a proposition that if the art therapist uses art to demonstrate their attention, this tends to help potentially chaotic and dismissive groups to cooperate, whereas if the art therapist gives the appearance of passivity, it tends to increase the problematic interactions in the group. [ABSTRACT FROM PUBLISHER]

Background: Dementia can have significant detrimental impacts on the well-being of those with the disease and their carers. A range of computer-based interventions, including touchscreen-based interventions have been researched for use with this population in the hope that they might improve psychological well-being. This article reviews touchscreen-based interventions designed to be used by people with dementia (PWD), with a specific focus in assessing their impact on well-being.Method: The data bases, PsycInfo, ASSIA, Medline, CINAHL, and Cochrane Reviews were searched for touchscreen-based interventions designed to be used by PWD with reported psychological well-being outcomes. Methodological quality was assessed using Pluye and Hong's (2014) Mixed Methods Appraisal Tool (MMAT) checklist.Results: Sixteen papers were eligible. They covered 14 methodologically diverse interventions. Interventions were reported to be beneficial in relation to mental health, social interaction, and sense of mastery. Touchscreen interventions also reportedly benefit informal carers in relation to their perceived burden and the quality of their relationships with the people they care for. Key aspects included the user interface, provision of support, learning style, tailored content, appropriate challenge, ergonomics, and users' dementia progression.Conclusions: Whilst much of the existing research is relatively small-scale, the findings tentatively suggest that touchscreen-based interventions can improve the psychological well-being of PWD, and possibilities for more rigorous future research are suggested. [ABSTRACT FROM AUTHOR]

Introduction: Previous research has shown that people with dementia and caregivers derive wellbeing-related benefits from viewing art in a group, and that facilitated museum object handling is effective in increasing subjective wellbeing for people with a range of health conditions. The present study quantitatively compared the impact of two museum-based activities and a social activity on the subjective wellbeing of people with dementia and their caregivers. Methods: A quasi-experimental crossover design was used. People with early to middle stage dementia and caregivers (N = 66) participated in museum object handling, a refreshment break, and art viewing in small groups. Visual analog scales were used to rate subjective wellbeing pre and post each activity. Results: Mixed-design analysis of variances indicated wellbeing significantly increased during the session, irrespective of the order in which the activities were presented. Wellbeing significantly increased from object handling and art viewing for those with dementia and caregivers across pooled orders, but did not in the social activity of a refreshment break. An end-of-intervention questionnaire indicated that experiences of the session were positive. Conclusion: Results provide a rationale for considering museum activities as part of a broader psychosocial, relational approach to dementia care and support the use of easy to administer visual analog scales as a quantitative outcome measure. Further partnership working is also supported between museums and healthcare professionals in the development of nonclinical, community-based programs for this population. [ABSTRACT FROM AUTHOR]

Background: Art-based interventions have been shown to be beneficial for the well-being of people with dementia and their caregivers. This article explored whether such interventions can be delivered via a touchscreen tablet device displaying art images. Method: Twelve pairs of volunteers with dementia and informal caregivers were recruited (N = 24). A quasi-experimental mixed-methods within-subjects study evaluated the well-being impacts of art viewing using visual analogue scales and explored participant experiences with thematic analysis. Findings: Quantitative results before Bonferroni correction showed a significant effect for change in composite well-being from Session 1 to Session 5 but this became non-significant after the correction was applied. Well-being subdomains generally increased with number of sessions. Qualitative findings included changes in cognition, behavior, mood, and relationships. These changes tended to be viewed positively. Conclusion: The results suggest touchscreen-based art interventions could yield well-being benefits for this population. A larger-scale controlled study would help determine whether wider dementia care practice implications can be drawn. [ABSTRACT FROM AUTHOR]

Purpose of Study: There is a continuing interest around the use of group singing in dementia care. Although studies generally indicate positive outcomes, limited research has been carried out from a relational perspective, which places the couple relationship in a central position. This study aimed to better understand how group singing benefits people with dementia and their partners. Design and Methods: Interview data from 17 couples (N = 34) with one member having dementia, who participated in a range of different types of singing groups, were analyzed using grounded theory methodology. Results: Five key areas were identified, resulting in the development of the group singing model in dementia for couple dyads. Group singing was experienced as being both joyful and accessible. The accessibility of singing, combined with effective facilitation, created an environment for active participation and enjoyment. The group effect mediated further benefits for the person with dementia and for the caregiver which, when combined, increased benefits for the couple through participation in new experiences. Implications: An opportunity for couples to share in-the-moment creative expression and the positive affect of artistic creation circumventing cognitive impairment is likely to contribute positively to the experience of the relationship. A more refined understanding of shared creative processes in relationship-centered models of care could inform dementia support services. Future research would benefit from longitudinally exploring the links between creativity in couples and relationship resilience. [ABSTRACT FROM AUTHOR]

An account is provided of a UK national seminar series on Arts, Health and Wellbeing funded by the Economic and Social Research Council during 2012–13. Four seminars were organised addressing current issues and challenges facing the field. Details of the programme and its outputs are available online. A central concern of the seminar programme was to provide a foundation for creating a UK national network for researchers in the field to help promote evidence-based policy and practice. With funding from Lankelly Chase Foundation, and the support of the Royal Society for Public Health, a Special interest Group for Arts, Health and Wellbeing was launched in 2015. [ABSTRACT FROM AUTHOR]

Purpose of Study: Dementia refers to a variety of diseases that are characterized by cognitive difficulties and an overall decline in daily living skills. Psychologically informed arts and health programs may be particularly beneficial ways of improving the lives of people with dementia and their caregivers. This study sought to better understand how programs at contemporary and traditional art galleries might play a role in the lives of people with dementia. Design and Methods: Participants included 12 people with mild-to-moderate dementia, their 12 caregivers and 4 gallery facilitators. Those with dementia and their caregivers were engaged in art viewing followed by art making over an 8-week period. Data, collected through postintervention interviews with participants, field notes and extensive written communication between the facilitators and research team, were analyzed using grounded theory methodology to theorize how gallery-based interventions affect people with dementia and those who care for them. Results: The emerging theory has four primary components: the art gallery is seen as being a physically valued place that provides intellectual stimulation and offers opportunities for social inclusion that can change how dementia is perceived. These components coalesced to create positive emotional and relational effects for those with dementia and caregivers. Implications: The resulting theory has potential implications for the use of gallery-based programs in dementia care within public health, healthcare, and museum/art gallery policy and practice. [ABSTRACT FROM AUTHOR]

Aims and objectives To synthesise and evaluate the extant literature investigating the psychosocial influences on ageing as a lesbian, gay or bisexual person, to develop understanding about these influences and guide future research in the area. Background Research suggests there may be specific psychological and social factors relevant to ageing for individuals with a nonheterosexual identity. Design A systematic review was conducted on empirical research involving lesbian, gay and bisexual individuals aged 60 or above. Methods The Cochrane Database, Psych INFO, MEDLINE, Web of Science and Google Scholar were searched and 41 studies met inclusion criteria. The majority had not been reviewed in earlier review articles. Results Findings were within two domains: psychological, consisting of sub-themes relating to identity, mental health and body image; and social, consisting of relationships, social support, discrimination, caregiving and receiving, community, accessing services and housing. The results suggest lesbian, gay and bisexual individuals mostly adjust well to ageing identities, with mediating influences including self-acceptance and connection with peers. Challenges experienced included ageism and heteronormative health and social care services; intimate friendships, social support and respectful professionals mitigated such threats and facilitated successful ageing. Methodological issues related to sampling procedures, such as purposive sampling through the gay community and limited generalisability due to the homogeneity of participants. Additionally, there was a widespread lack of heterosexual control groups. However, most studies used appropriate measures and acknowledged inherent limitations. Conclusion Psychosocial influences included the challenge of societal stigma, but also resilience individuals demonstrate through a positive attitude. These factors must continue to be investigated for services to best meet the needs of this population. Relevance to clinical practice Clinicians are well placed to assist individuals draw on resilience when facing ageing challenges. Also, clinicians should be aware older people may have prior negative experiences of accessing services and try to involve 'families of choice' in care planning. [ABSTRACT FROM AUTHOR]

Objectives: Dementia is a progressive condition, affecting increasing numbers of people, characterised by cognitive decline. The current systematic review aimed to evaluate research pertaining to the impact of arts and health interventions on cognition in people with dementia. Method: A literature search was conducted utilising PsychInfo, Cochrane Reviews, Web of Science, Medline and British Humanities Index databases. Seventeen studies were included in the review, including those related to literary, performing and visual arts. Results: The review highlighted this as an emerging area of research with the literature consisting largely of small-scale studies with methodological limitations including lack of control groups and often poorly defined samples. All the studies suggested, however, that arts-based activities had a positive impact on cognitive processes, in particular on attention, stimulation of memories, enhanced communication and engagement with creative activities. Conclusion: The existent literature suggests that arts activities are helpful interventions within dementia care. A consensus has yet to emerge, however, about the direction for future research including the challenge of measurement and the importance of methodological flexibility. It is suggested that further research address some of these limitations by examining whether the impact of interventions vary depending on cognitive ability and to continue to assess how arts interventions can be of use across the stages of dementia. [ABSTRACT FROM AUTHOR]

The study aimed to determine the prevalence of anxiety related to discharge, among a group of 42 participants who were likely to have sustained an at least moderate to severe ABI and who were due to be discharged home following a period of inpatient neurorehabilitation. Differential relationships between psychological factors (self-efficacy and internal health control beliefs) were examined, alongside the relative influence of demographic and clinical characteristics on discharge anxiety. Data were obtained via self-report measures and retrospective reviews of participant's inpatient medical records. While relatively few participants (n = 6; 14%) reported markedly elevated trait-anxiety, almost half the sample (n = 19; 45%) reported clinically significant levels of transient state-anxiety. Notably, state-anxiety was strongly associated with discharge anxiety. Multivariate analyses revealed that age, self-efficacy and internal health control beliefs made independent contributions to self-reported discharge anxiety, with perceived self-efficacy alone explaining 69% of the variance and mediating the effects of age and internal health control beliefs. None of the other demographic or clinical characteristics examined was significantly associated with discharge anxiety. While causality cannot be inferred, findings suggest that anxiety related to discharge from rehabilitation might be best predicted by poor perceptions of self-efficacy. Implications for clinical practice and future research are discussed. [ABSTRACT FROM AUTHOR]

Background: This review offers a conceptual summary and critique of psychological theories and research concerning the use of material objects and their possible role in clinical work. Methods: Studies relating to the theory and use of material objects in different contexts and interventions were identified through a search of the following data bases: Psycinfo, Applied Social Sciences Index and Abstracts and Cochrane Database of Systemic Reviews. Results: The 29 papers that met inclusion criteria fell within six broad categories: psychoanalytic thinking and transitional objects, found object theory and clinical use, developmental and neuropsychological perspectives on touch, valued object choice, the relationships of material objects to identity and museum object handling interventions. Conclusions: A range of effective roles for material objects in research and clinical work was identified, and in particular, museum object-handling sessions offered short-term benefits in well-being and engagement to a variety of clinical populations. A number of methodological limitations were identified throughout this literature. The review concludes with recommendations for further research including the need for longitudinal studies, further study of the processes within group object-handling sessions and studies of multiple object-handling sessions; clinical application of material objects was also addressed. [ABSTRACT FROM AUTHOR]

Many people with dementia are cared for by their spouse or partner, therefore there is a need to understand the ways in which dementia and couple relationships impact upon each other. This study aimed to contribute to our understanding of the experience of dementia from a relational perspective. Seven couples, in which one person had a diagnosis of dementia, were interviewed about their experience of being in a couple where one partner had a diagnosis of dementia. Using interpretative phenomenological analysis, five master themes were identified, which illustrated how couples constructed their experience of dementia in order to make sense of it, and describe the processes that they adopt in order to adjust to dementia. Findings were supported by existing empirical and theoretical literature and suggest that services and interventions could be enhanced if a relational understanding of dementia were more fully considered. [ABSTRACT FROM AUTHOR]

The author discusses the potential of well-being and health services in the art galleries and museums. Topics discussed include effect of cultural participation in well-being and human health, the roles of museums on the improvement of health and well-being, and the strategic partnerships between museums and galleries with local healthcare authorities and funders.