Jennifer Rhiannon Roberts

Background: 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. In response to a lack of resilience outcome measures designed specifically with, and for, people living with dementia, this research builds on several stages of measurement development and evaluates the psychometric properties of a new outcome measure of resilience for people living with dementia. Methods: We aimed to recruit 185 people aged 18 + living with dementia. An online survey containing demographic questions, the draft 37-item resilience measure, the 7-item Generalised Anxiety Disorder Assessment (GAD- 7) and the 5-item Canterbury Wellbeing Scale was widely shared in the UK. Three people living with dementia piloted the survey before recruitment commenced and gave suggestions for improvement. Exploratory factor analysis was applied to the draft resilience measure and the construct validity and internal consistency ascertained. Convergent validity with other measures was tested. Results: Minor changes were made to the survey following piloting to help people with dementia. The survey was completed by 193 participants, aged 47–93 (M = 69.9; SD = 9.5), 58% male, and living with a range of dementia diagnoses. The exploratory factor analysis led to a final 19-item measure (Chronbach’s Alpha = 0.85) with 5-factors underlying resilience: ‘Outlook’, ‘Adaptation’, ‘Acceptance’, ‘community and peer support’ and ‘family and friends’. The new resilience measure demonstrated convergent validity with well-being (r = 0.49, p < 0.001) and anxiety (r = - 0.28, p < 0.001). Conclusions: This study presents preliminary field-testing and validation of the Bangor Dementia Resilience Scale, a new psychometrically sound resilience measure for people living with mild to moderate dementia. The scale may be a valuable tool for practitioners to provide strengths-based and person-centred support to maintain and enhance the resilience of people living with dementia, and evaluating the extent to which health and social care services may improve resilience. Given the global policy focus to support people with dementia to live as well as possible, the new scale has international significance for translation and cultural adaptation by other countries.

National dementia strategies are government policies that guide the provision of appropriate support for people living with dementia. These strategies, developed through extensive stakeholder engagement, should be tailored to the cultural and demographic needs of a country. Using a mixed methods survey design, this study explored the aims of the Dementia Action Plan (2018–2022) for Wales (UK) around assessment, diagnosis, and post-diagnostic support, and assessed whether these are being realized. Further, it sought to gain insight from people living with dementia and their carers around how the experience may be improved for others in the future, as the development of the next iteration of the Action Plan is anticipated. Respondents included 71 people, affected by typical and rarer types of dementia, living in both rural and urban areas. Findings suggest both positive and negative experiences, reflecting a ‘postcode lottery’ of service provision. Attainable recommendations for improvement were made by respondents, which would ultimately likely be cost-effective and reduce strain on formal services. The findings reported in this paper concur with those reported by people living with dementia in other countries, indicating their relevance for policymakers beyond Wales.

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.

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.

Rural areas tend to be inhabited by more older people and thus have a higher prevalence of dementia. Combined with lower population densities and more sparse geography, rural areas pose numerous barriers and costs relating to support and resource provision. This may leave people with dementia in rural places at a significant disadvantage, leading to a heavy reliance on informal support networks. The present study explores the personal experiences of people living with dementia and carers living in rural areas, seeking to discover both benefits and challenges, as well as recommendations within the literature for improving the lives of those affected by dementia in rural areas. A scoping review following the framework of Arksey and O'Malley identified 60 studies that describe or discuss the personal experience of dementia (either by the person with dementia or carer), in relation to living in rural or remote geographical areas. Four overarching themes were derived, namely the possible benefits of living in a rural community (supportive rural communities), sources of strength described by people affected by dementia in rural areas (managing and coping), detrimental aspects of living in a rural community (rural community challenges) and difficulties with dementia care services. Three further themes yielded recommendations for improving the experience of dementia in rural areas. This review highlights some potential opportunities related to living in rural areas for people living with dementia. These often come with parallel challenges, reflecting a delicate balance between being well-supported and being in crisis for those living in rural areas. Given the limited access to formal services, supporting people with dementia in rural areas requires input and innovation from the people, organisations and services local to those communities.

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

In English, the relationship between the written and spoken forms of words is relatively opaque, leading to proposals that skilled reading requires two procedures: (a) a sublexical grapheme/phoneme conversion process allowing the correct reading of regular words (CAT) and new or pseudowords (ZAT); (b) a lexical process necessary to read irregular words accurately (TWO) and assumed to be the dominant process for familiar words. However, it has been argued that the sublexical process may be sufficient in highly transparent languages such as Welsh. If this is the case, damage to the sublexical process may lead to more severe deficits in transparent languages due to the lack of an alternative lexical process. To test this hypothesis, we compared Welsh and English oral reading and written-word recognition and comprehension in seven bilingual stroke participants with comparably impaired pseudoword reading in English and Welsh. Performance was remarkably similar across languages. Irrespective of the language tested, words were read more accurately than pseudowords. Lexical decision and word comprehension were as accurate in Welsh and in English, and when imageability effects were present they were of a similar size in both languages. This study does not support the hypothesis that orthographic transparency determines the nature of cognitive reading processes, but rather suggests that readers develop a sight vocabulary through reading experience irrespective of orthographic transparency.