How do care partners of people with rare dementia use language in online peer support groups? A quantitative text analysis study

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

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

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

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

‘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 supportgroups 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

Symptom-led staging for semantic and non-fluent/agrammatic variants of primary progressive aphasia. Alzheimer's & Dementia

INTRODUCTION: Here we set out to create a symptom-led staging system for the canonical semantic and non-fluent/agrammatic variants of primary progressive aphasia (PPA), which present unique diagnostic and management challenges not well captured by functional scales developed for Alzheimer’s disease and other dementias. METHODS: An international PPA caregiver cohort was surveyed on symptom development under six provisional clinical stages and feedback was analyzed using a mixed-methods sequential explanatory design. RESULTS: Both PPA syndromes were characterized by initial communication dysfunction and non-verbal behavioral changes, with increasing syndromic convergence and functional dependency at later stages. Milestone symptoms were distilled to create a prototypical progression and severity scale of functional impairment: the PPA Progression Planning Aid (“PPA-Squared”). DISCUSSION: This work introduces a symptom-led staging scheme and functional scale for semantic and non-fluent/agrammatic variants of PPA. Our findings have implications for diagnostic and care pathway guidelines, trial design, and personalized prognosis and treatment for PPA

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

Development of the Video Analysis Scale of Engagement (VASE) for people with advanced dementia

Background: The current study sought to develop a valid, reliable and unobtrusive tablet computer-based observational measure to assess engagement of people with advanced dementia. The Video Analysis Scale of Engagement (VASE) was designed to enable the rating of moment-by-moment changes in engagement during an activity, which would be useful for both future research and current residential care. Methods: An initial version of the VASE was tested. Face validity and content validity were assessed to validate an operational definition of engagement and develop an acceptable protocol for the scale. Thirty-seven non-professional and professional volunteers were recruited to view and rate level of engagement in music activities using the VASE. Results: An inter-class coefficient (ICC) test gave a high level of rating agreement across professionals and non-professionals. However, the ICC results of within-professionals were mixed. Linear mixed modelling suggested that the types of interventions (active or passive music listening), the particular intervention session being rated, time period of video and the age of raters could affect the ratings. Conclusions: Results suggested that raters used the VASE in a dynamic fashion and that the measure was able to distinguish between interventions. Further investigation and adjustments are warranted for this to be considered a valid and reliable scale in the measurement of engagement of people with advanced dementia in a residential care setting

Created out of mind: shaping perceptions of dementia through art and science

We describe a transdisciplinary research programme called Created Out of Mind which draws together artists, scientists and people living with rarer forms of dementia. The importance of subjective, lived experiences of dementia is highlighted as a key driver of research conducted during our arts-science residency in The Hub, Wellcome Collection. We illustrate our approach through worked examples of how comments and experiences shared by individuals with a visual form of dementia called posterior cortical atrophy inspired and shaped experiments, artworks and other outputs which deepened understanding of that condition