Mary Pat Sullivan

Objectives: The health needs of people living with young-onset dementia are largely undocumented. The aim of this study was to describe health system use for community-dwelling people living with new young-onset dementia at a population level. Methods: We conducted a matched retrospective cohort study using routinely collected population-based health administrative data in Ontario, Canada, from January 2006 to March 2021. We matched 92% of people living with young-onset dementia to a comparison group (17,215 of 18,760) without dementia. Rates of health service use over time were estimated using Poisson regression. Long-term care placement and mortality were estimated using Cox regression. Results: People living with young-onset dementia had higher previous health system use compared to their matched counterparts. This included higher rates of general hospital admissions (rate ratio (RR) = 2.04 95% CI: 1.94, 2.15), emergency department visits (RR = 1.38 95% CI:1.30, 1.46), mental health admissions (RR = 4.03 95% CI:3.33, 4.88) and were more likely to experience hospital discharge delays (RR = 4.72 95% CI: 4.21, 5.29). Dementia specialist visits were 3.80 times higher (95% CI 3.40 to 4.25). The hazard of mortality for people with young-onset dementia was over three times higher compared to those without young-onset dementia (hazard ratio (HR) = 3.43 95% CI: 3.23, 3.65). Conclusions: We observed higher rates of secondary and tertiary health system utilization among people living with new young-onset dementia versus matched comparators. This complex pattern of health system use highlights the need for health system planning to address continuous care for people living with young-onset dementia.

Background: Much of our knowledge on the psychosocial impact and care needs of people living with dementia and interventions to improve well‐being normally focus on a principal caregiver – namely a spouse or adult child. Gaps in the literature include understandings of the impact on younger children or grandchildren, siblings, parents and parents‐in‐law or close friends. Knowledge on how to support the entire family system is also scarce yet highly relevant in the instance of an atypical or rare dementia diagnosis which often affects people at a young age. The aims of this proof‐of‐concept study were to: (a) develop understandings of the impact of rare dementia on the multiple generations and relationships within a family system; (b) what characterizes a model of multi‐ or intergenerational support; and (c) pilot a novel data collection method with youth and young adults. Method: Rare Dementia Support Canada members to were invited to participate. Our sample included spouses and parents of people living with young onset dementia ( N = 9) who participated in an in‐depth interview to explore the emotional, practical and informational needs of children and parents. We also engaged youth aged 12‐17 ( N = 3), young adults aged 18‐24 ( N = 5) who responded to questions about daily life with a parent with young onset dementia via Instagram's direct messaging using text, video or audio. These participants were also involved in a virtual group interview to learn about their experiences using Instagram. All data was analyzed using reflexive thematic analysis. Result: Our results point to the absence of support for the entire family system or those tailored to individual members of the family such as children, siblings, parents, or close friends. From the perspective of children and parent participants, stories were balanced among those of grief, loss, interruptions in developmental transitions and those of connection, memory making and normalization. For parents there was a significant desire to learn how to help. Our use of Instagram provided varied data quality though was viewed as a convenient and accessible way to participate in research. Conclusion: Using participatory approaches, this study is currently informing the development of a larger investigation into family‐centred rare dementia support.

Background: Literature on how to use theory, evidence and experience to practically develop and implement new interventions for people affected by dementia is scarce. Rare Dementia Support (RDS) is an evidence‐informed support community in the UK for people living with a rare dementia, their families, and dementia care practitioners working in the health and social care sectors. The RDS Impact Study (2019‐24) and the growth of RDS shed new light on the community's characteristics to facilitate a tailored, relational, and continuous model of support. The funding of RDS Canada in 2022 offered an opportunity to localize the model in another jurisdiction. Its implementation was informed by participatory, culturally centred and place‐based solutions. Method: Following a 2‐year implementation phase and using RDS program theory we conducted an evaluation of RDS Canada's principal activities with its growing membership (∼800 people) and support team. Using multiple data sources and methods, including case studies, an interrogation of administrative data, satisfaction surveys and interviews with staff and advisory circle members ( N = 17), we explored delivery, reach and implementation successes and challenges across peoples and geography. Result: People affected by rare dementia living in Canada highlighted a preference for self‐directed support characterized by disease or syndrome, age, and stage, and that provided ‘side by side’ emotional, practical and informational support. Whilst the vitality of the RDS model in Canada was reinforced, as anticipated, the data reinforced the role of pre‐ and post‐diagnostic support that was flexibly available considering family status, culture, language and geography. In a context of shrinking health resources, support that was directed on building member self‐advocacy skills emerged as new and critical contribution to program theory. Conclusion: The localization and mobilization of knowledge to support people affected by rare dementia providing promising results to continue to develop and expand delivery for diverse populations across diverse geographies in Canada. A newly funded realist evaluation of RDS Canada is now underway to further explore diversity through varied configurations of what supports work for whom, when, and where.

Background/objectives: Dementia is the most common cause for long-term care placement for people over the age of 65 years. The decision and the transition are often very difficult for families and the type and timing of effective support not well understood. In this exploratory study, we aimed to gain a better understanding of the experience of this transition to a long-term care setting and its impact on social connections. Methods: We conducted virtual in-depth interviews with a sample of spouses (N = 5) who had identified their partner’s move to a nursing home as particularly distressing. Interview data were analyzed using thematic analysis. Results: We identified that the transition process involved a particular disruption for dyads’ social health, although there was rarely a consideration in planning or support provision. For the person living with dementia, the unacknowledged loss of their social world reinforced their social death. Their grieving partner was explicitly and implicitly encouraged to recover a new social world as a means of healing from the loss. Conclusions: Our findings reinforce the need for evidence-informed support during the transition to long-term care for someone living with dementia and their partner.

Dementia is the most common cause for long-term care placement for people over the age of 65 years. The decision and the transition are often very difficult for families and the type and timing of effective support not well understood. As part of a study exploring dyadic experiences of social connection and living with dementia, we conducted virtual in-depth interviews with a sample of spouses (N=5) who had identified their partner’s move to a nursing home as particularly distressing. Using thematic analysis, we identified that the transition process involved a particular disruption for dyad’s social health although rarely a consideration in planning or support provision. For the person living with dementia, the unacknowledged loss of their social world reinforced their social death. Their grieving partner was explicitly and implicitly encouraged to recover a new social world as a means of healing from the loss. Our findings reinforce the need for evidence-informed support during the transition to long-term care for someone living with dementia and their partner.

Introduction: There is growing awareness of people living with diverse dementia syndromes, many of whom are younger in age, with distinct support needs. Planning for increasing numbers of people living with dementia and subsequent models of support has largely overlooked this population. To address this gap, the aim was to design a Theory of Change for multi-component rare dementia support.Methods: Intervention development frameworks underpinned the construction of a Theory of Change informed by research evidence on rare dementia support and an iterative consultation process with people with lived experience, researchers, educators and health and social care practitioners.Results: The Theory of Change illustrates pathways to activities for continuous and tailored support solutions, education and knowledge production. Characteristic features include relationship, connection and continuity for people with lived experience, training and networking for professionals, and relational support with a commitment to ongoing learning for the rare dementia support team.Conclusion: The Theory of Change is positioned to flexibly support people affected by rare dementia, strengthen capacity within all sectors, improve service quality whilst maintaining a commitment to knowledge production and mobilization.

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.

Objective: Visual processing deficits arising in dementia are associated with particular functional disability. This study aimed to investigate the effects of the built environment on mobility and navigation in people with dementia-related visual loss. Methods: Participants with posterior cortical atrophy (PCA; “visual-variant Alzheimer’s”; n = 11), typical Alzheimer’s disease (tAD; N = 10), and controls (n = 13) repeatedly walked down routes within a simplified real-world setting. Participant groups were of comparable age and gender. Routes were of different complexity (straight, U-shaped, and S-shaped), overhead lighting levels (low and high) and with or without a dynamic LED (light-emitting diode) cue (trial n = 24). Ratios of walking times for each experimental condition (each complex route vs the straight route, high lighting vs low, and LED cue vs no cue) were compared between participant groups. Kinematic measures were produced from a total of 10,813 steps using wearable inertial measurement units (IMUs). Results: The walking time ratios relating to route complexity were higher in the PCA group than in controls: 30.3% (95% CI [13.5%, 49.5%] higher for U-shaped vs straight and 31.9% [21.1%, 55.3%] for S-shaped vs straight, averaged over other conditions). The analogous results relating to route complexity for the tAD group were intermediate between those for the PCA and control groups. There was no evidence that walking time ratios differed according to lighting level or the presence of the LED cue. Conclusions: Findings contribute to evidence-based design for dementia-friendly environments, emphasizing consequences of environmental complexity for functional independence and mobility in people with dementia-related visual loss. Findings inform recommendations for environmental design to support the independence of individuals with dementia.

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.

Background It is estimated that rare forms of dementia account for about 7% of all dementias and 10–20% of dementias for those under the age of 65. These conditions bring unique difficulties related to age of onset, impact on family commitments, employment and finances, and also bring distinctive needs for support and care in contrast to Alzheimer’s disease and vascular dementia, the two leading causes of dementia. The aim of the present study was to explore and better understand what the concept of support means for people living with different rare dementia (PLwRD) and their care-partners who attend ongoing support groups. Method Using research poetry, an arts-based health research methodology, this mixed-methods study solicited words (source material) from 177 PLwRD and care-partners at eight in-person support groups. Poems were co-created by participants representing seven types of rare dementia and a facilitating poet. The source material and completed poems were analysed through a three-step process involving linguistic analysis followed by structured-tabular thematic analysis, relational analysis, and concluded with an online survey about participation in the study. Results The results of the linguistic analysis found that co-constructed poems remained faithful to the original source material provided by PLwRD and care-partners. These results provided confidence to subsequently conduct a thematic analysis of eight completed poems, which identified 15 initial themes among seven rare dementia types and one mixed-rare dementia group. A further relational analysis between themes drew on 6 different relational forms (comparative, semiotic, evocative, contingency, reciprocal, conceptual part-whole) and identified an overarching theme ‘A Community, Not an Intervention’ that describes the process of support (Dynamic Sharing, Strategies and Information, Part of a Community, Connecting with Peers, Professional Input, Transcendence, Effectual Actions) for this population. Survey results revealed a varied but generally positive response to writing whilst reactions to reading and listening to the completed poems reflected strong emotional connections that resonated with personal experience. The poems were also seen as a vehicle to communicate with healthcare professionals and the general public about rare dementia. Conclusions This is the first study that we are aware of to explore the use of co-constructed research poetry to better understand how in-person support groups provide support for people impacted by different rare dementias. The poems portray the complex, dynamic and relational aspects of how support groups provide a necessary form of connection for this population. Through rigorous mixed-method analysis, multiple sub-themes and an overarching theme characterised the support groups as a community rather than an intervention. Findings are discussed within the theoretical context of positive social identity, social health and biosocial groups. The results also confidently demonstrate that solicited words from participants can be faithfully portrayed in poems co-created by an experienced poet. This novel finding expands methodological options for the use of research poetry co-constructed from personal experiences and also offers support group members further creative choices for engagement, connection and communication. Future research is proposed that uses research poetry to longitudinally explore biosociality, biosolidarity, agency and active citizenship for PLwRD and care-partners within support groups.