Metaphors to describe and understand dementia have been used in Western culture for many years. However, the ways in which people living with dementia and care partners use metaphors and symbols to illustrate and give meaning to their own experiences has been less understood. In this paper we explore the use of metaphor as methodology-- a way to support people living with dementia and their care partners in reflecting on and sharing their experiences of dementia. More specifically, drawing on our experiences using metaphor and symbols to map out the dementia journey from the perspectives of people living with dementia, care partners, and health and social care providers in Ontario, Canada, we describe our process of employing metaphor as methodology. We reflect on the use of metaphor as methodology through framing the dementia experience, exploring complexity, and representing multidimensionality. The use of metaphors has the potential to open space for new understandings of dementia.

As dementia care evolves, digital interventions are being developed to improve the quality of life of people living with dementia. It is also increasingly recognised that some people living with dementia can use and benefit from using digital interventions themselves. Therefore, exploring the effectiveness and experiences of using such interventions is essential to optimise digital intervention development and delivery. 5 databases were searched (MEDLINE (Ovid), PsycINFO, EMBASE, CINAHL and Web of Science) for papers reporting effectiveness outcomes or experiences, involving people living with dementia or mild cognitive impairment engaging with digital interventions for improving their quality of life. 73 relevant papers published between 2018-2023 were identified, 59 included effectiveness data and 18 included data on experiences. The integration of evidence identified that people living with dementia can benefit from engaging in digital interventions, if they are motivated, and provided with tailored training, support, appropriate devices and content. Benefits were seen within the domains of cognition, health and well-being and social relationships. Benefits were more frequent when digital interventions were provided in the home environment with specified daily/weekly usage requirements. This review provides an overview of the current state of research exploring engagement of digital interventions by people with dementia for improving their quality of life. The findings provide guidance on how to optimise the method of delivery. Future research should explore how digital interventions can improve social relationships and self-concept of people living with dementia, the long-term sustainability of digital interventions, and how individuals with dementia form attitudes towards technology.

Epistemic injustice refers to wronging or mistreating individuals in terms of their capacity as knowers, based on prejudices or negative attitudes. Excluding people with dementia from research is a form of epistemic injustice. In this article, we discuss epistemic injustice associated with data collection processes and the participation of people with dementia in scientific research. The challenges of participation that we discuss pertain to the role of gatekeepers and ethical research perspectives. The arguments presented are based on previous research, experiences from our current project, and critical self-assessment regarding the latter. The aim is to shed light on what enables or prevents people living with dementia from participating in research, and how this is connected to epistemic injustice. It is known that prejudices related to dementia affect both researchers and people living with dementia: the former tend to exclude people with dementia, and the latter may practice self-silencing due to dementia-related stigma. In addition to these individual issues, we argue that epistemic injustice occurs at a structural level, where a major role is played by gatekeepers and research ethics panels. As close family members, health officials, and dementia-related associations are the main gatekeepers, their attitudes and perceptions are highlighted. In terms of ethical issues, the concept of informed consent needs to be elaborated. If the research is not expected to harm participants and may contribute to improving the lives of those with dementia, the perspective should be shifted from informed consent to ongoing consent assessment. While acknowledging the features and symptoms of dementia, researchers should be more courageous, trust in the good cause, and enable persons living with dementia to participate in research that concerns them. This is the only way for researchers to genuinely understand the social world, experiences, and needs of those with dementia and to address epistemic injustice.

Culturally diverse informal caregivers of community-dwelling persons with dementia face challenges in accessing dementia care resources due to language barriers and cultural stigmas surrounding dementia. This study presents the perceived intervention experiences of a home-based approach which considers the cultural and linguistic needs of diverse family caregivers in dementia care. The intervention model includes home visits by trained bilingual, non-licensed community health workers (CHWs) whose cultural histories and understandings reflect that of the caregivers. The purpose of the present study was to understand family caregivers' experience in caregiving and their feedback on the intervention, which includes caregiver support through education and skill development.

This study explores the lived experiences of older adults with dementia in Dutch nursing homes, focusing on daily activities and emotional responses. With a growing number of older adults with dementia, gaining a deeper understanding of their lived experience is imperative.

This scoping review examined literature on dementia education programs (DEPs) for healthcare providers and students. The search was conducted using the Discover! search engine that includes 63 databases. The review included a total of 25 articles that met the eligibility criteria. There were numerous DEPs that varied by frequency and duration, mode of delivery, content, target population, program evaluation measures, and outcomes. Most involved nursing staff and students and took place in Canada, the US, and the UK. The most common delivery mode was a one-time in-person session and a wide variety of topics were covered, both general (e.g., understanding dementia) and specific (e.g., driving, delirium). Twenty different tools were used to measure primarily changes in knowledge and attitudes, with little attention paid to performance and care provision. Only three studies on DEPs focused on culture in terms of race and ethnicity. The implications of this scoping review for education are that DEPs need to meaningfully address culture and culturally safe care in order to respond to the increasing diversity of older adults and care providers. In terms of future research on DEPs, program evaluation must attend to the importance of consistent measures, translation of knowledge to practice, and sustainability.

The aim of this study was to examine the association of sex/gender and other factors with the perceived helpfulness of the diagnostic process and post-diagnostic services by persons with dementia and care partners. We conducted secondary cross-sectional analysis of surveys from the 'Cognisance' project. Sex/gender and other factors (e.g., demographic variables, help seeking behaviours, healthcare professional consulted) of persons with dementia and care partners from four countries were considered. Main outcomes were perceived helpfulness of diagnostic process and post-diagnostic services. We conducted descriptive and multivariate analyses. Compared to men, more women with dementia perceived post-diagnostic services as helpful though not statistically significant. Sex/gender was not associated with perceived helpfulness of diagnostic process and post-diagnostic services among care partners. Satisfaction with and awareness of services were associated with perceived helpfulness among care partners. These findings underscore the necessity for sex/gender-based research to enhance dementia care and for tailored interventions.

A diagnosis of dementia can have a powerful impact on identity, and social media platforms offer promising avenues for identity expression and reconciliation. Addressing limited research in this area, we used semi-structured interviews to explore how 10 people with dementia used social media to navigate their identity. Our thematic analysis produced four themes, showing how social media platforms afford unique opportunities for self-expression, visibility, and association, thereby empowering users to maintain their sense of self, challenge stereotypes, and foster community connections. Additionally, social media facilitated a multifaceted and holistic sense of identity beyond the confines of diagnosis. While there were concerns about online self-disclosure, sharing experiences of dementia had therapeutic benefits, aiding in acceptance and adjustment. Participants also leveraged social media to establish continuity between their pre- and post-diagnostic selves, providing a sense of stability amid uncertainty. With the increasing prevalence of social media use among people with dementia, proactive measures by healthcare professionals, policymakers, technology developers, and carers are required to cultivate online experiences that are safe, supportive, and inclusive of people with dementia.

Communication difficulties of people with dementia can negatively impact well-being of them and their carers. There are evidence-based and clinically recommended strategies that can be used to support people with dementia which they are more likely to access on websites than via academic literature. We aimed to search the internet for communication advice for people with dementia and their carers, describe the strategies and compare these to the evidence-base. After a systematic search of websites offering communication advice to people with dementia and their carers, we described the strategies there, used reflexive thematic analysis to identify the rationale for recommended strategies and compared the strategies to the evidence base. We included websites aimed at people with dementia and their carers published by dementia-related health and social care, or third sector organisations. We compared strategies to those in published systematic reviews and practice guidance from UK health and social care agencies. Our review identified 39 eligible websites, containing 164 individual strategies. These were grouped into 26 strategy types, with nine latent themes developed. These were supporting communication strengths, valuing the interaction, prioritising needs, providing emotional safety, working together, adapting communication for the situation, developing carer communication skills, knowing the individual and focusing on broader meaning. Our review highlights the need for flexible approaches to supporting communication for people with dementia which consider the individual's needs and preferences, the context of the interaction, and the priority in that moment. We identify the inherent challenges for carers in trying to interpret advice for their own needs.

Behaviours such as hitting-out and declining personal care are commonly exhibited by people living with dementia and are associated with care-giver stress and anxiety and care home placement breakdowns. Traditionally, pharmacological approaches have been used to manage behaviour; however, research indicates limited effectiveness. National guidelines recommend use of non-pharmacological interventions as first line treatment for distress, but further research is required to elucidate the components that lead to improved care for people living with dementia. This study aims to explore what works, examining case studies in which a non-pharmacological clinical intervention, the Newcastle Model, was used to understand and manage distressed behaviour in dementia care within care home settings. A qualitative case study design was used. Three cases were selected from the Edinburgh Behaviour Support Service for their success in preventing care home placement breakdown during a distressed behaviour intervention in NHS Scotland. Family members and staff involved in the interventions within these cases were interviewed ( = 6). Thematic analysis was used to analyse data. All participants reported positive outcomes from the intervention. Three key themes were identified, each with subthemes. Participants described a supportive, non-judgmental environment which allowed them to integrate knowledge about dementia and tailor interventions to the specific needs of the individual living with dementia. There was also a sense of family and staff coming together to unite with shared goals. A preliminary model of all of themes and their interactions is presented. The study supports use of biopsychosocial, formulation-led approaches in the understanding and treatment of complex behavioural presentations in community care settings. It suggests that clinicians should endeavour to facilitate safe and open environments for care home staff and family members, in order to promote attribution change and person-centered care, and to help mediate differences and conflict between staff and family members.

Some carers have reported struggling to manage the additional costs of caring for someone with dementia, which has negatively impacted upon their financial resilience. Since 2021, this has been compounded by the cost-of-living crisis experienced in the United Kingdom. This crisis has been driven by sharp increases in energy prices and the prices of everyday basics such as food. This study aimed to better understand how unpaid carers, supporting and co-habiting with people living with dementia, experience the cost-of-living crisis, and the impact this has on their ability to provide care for the person living with dementia. Eleven carers supporting and co-habiting with people living with dementia in England, took part in two semi-structured interviews approximately 3 months apart between November 2022 and February 2023. All transcripts were analysed using reflexive thematic analysis. Carers reported having to make difficult and sometimes drastic decisions in reaction to the cost-of-living crisis and the uncertainty of future cost-of-living increases, such as using blankets and extra lays of clothing for them and the person living with dementia in place of using the heating system in their home, going without food so their loved one can eat, or even missing social opportunities. Some carers described aspects which they felt mitigated some of the negative impact of the cost-of-living crisis, such as being able to draw upon financial resources or their local authority providing social events which included a heated space with food. The cost-of-living crisis has led to carers having to make difficult decisions which created worry and anxiety. Findings indicate that many carers need financial support, and it would be beneficial for free social events to be organised which provide a heated space and food, where carers and people living with dementia can socialise with others.

A collaborative, multi-disciplinary team input is crucial for the optimal management of the older adult with complex care needs such as dementia. Interprofessional learning (IPL) at undergraduate level can lead to improved collaborative knowledge and skills. The aim of this study was to develop, deliver and evaluate an IPL dementia workshop for healthcare students across 11 disciplines. A secondary aim was to determine whether there is a clinical application of learned knowledge in students who completed the workshop and subsequently underwent clinical placement.

This study aims to explore the meaning of participating in nature-based activities as seen from the perspective of people living with dementia. Being in a natural environment in contrast to a constructed environment has not previously been investigated, even though several studies have shown that nature-based activities may impact people's well-being, feelings of happiness, and a feeling of maintaining selfhood. A qualitative design was applied in this study, using walking-interviews to explore the meaning of participating in nature-based activities. Interviews have been conducted with 15 people with mild to moderate dementia in three municipalities. The analytical process using reflexive thematic analysis resulted in an overall theme that participation in nature-based activity nourishes the person by creating a feeling of having value as a person. Further, three subthemes were identified: Oasis for being, linking to the past, present, and future, and feeling capable. The findings of this study indicate that sensory stimulation when being in nature promotes embodied narratives and experiences, which contributes to the feeling of connecting to oneself, and to feeling valuable as a capable human being. This provides an important implication for practice that accessible nature-based activities may provide an overlooked opportunity to support self-identity for people living with dementia. However, it is time for a cultural and discursive shift in nature-based activities, where a delicate balance ensures that people living with dementia can derive inherent value from simply being in nature.

The World Health Organisation (WHO) has developed iSupport for Dementia, a self-paced online training programme for caregivers of people with dementia which is adaptable to different cultural contexts. This scoping review aims to understand the iSupport adaptation process in different countries and provide recommendations for future adaptations.

Across countries, most dementia carers report a lack of adequate information about dementia and local services. To address this issue, the World Health Organization developed the iSupport programme to provide information and support to dementia carers. The iSupport online programme was found to be feasible and acceptable by dementia carers. However, the potential of using the iSupport manual (iSupport) specifically for Chinese dementia carers in New Zealand remains unknown.

Social work assessments underpin support plans for many people living with dementia in their own homes in England, but it is unclear how they acknowledge that dementia places people at greater risk of mouth and dental problems affecting their wellbeing. We explored if and how dental needs are addressed during care assessments and social workers' perceptions of this aspect of personal care. This study analysed (a) semi-structured interviews with 14 social workers providing support to people living with dementia in their own homes, (b) data from 39 care assessments and support plans from two English local authorities. Interviews were recorded online, transcribed, and thematically analysed. Documents were analysed descriptively and presented visually. Participants acknowledged that oral care may be overlooked during assessments and reflected on various reasons, including assumptions of responsibility and role restrictions, limited training, and poor links with dental services. This was further evident in the analysis of assessment documentation. Participants identified potential strategies and practice changes to better integrate oral care in social work practice. These included increased awareness and more discussions around dental needs, skills training and streamlining of support. The findings have implications for social workers, educators, and commissioners or funders engaging with people affected by dementia in social work and beyond.

Despite the psychological challenges that dementia creates, comparatively little attention has been paid to how individuals or families can be helped to adjust to dementia. One of the few interventions to do this is the Living well with Dementia (LivDem) post-diagnostic course. LivDem focuses on supporting individuals to talk more openly about their dementia. However, while family supporters attend preliminary and follow up sessions, their role is limited and finding a way for them to be more actively involved might enhance the impact of the intervention and make it more flexible. We therefore set out to explore how the current LivDem intervention could be adapted for couples and families. We completed eleven semi-structured interviews and focus groups with four groups of stakeholders: people living with dementia and their families: LivDem facilitators; researchers in this area; and psychotherapists with experience of working with couples or families living with dementia. Interviews were transcribed and analysed using reflexive thematic analysis. Four main themes were generated: "Hear the impact on everybody"; People who are "ready to do that"; "It's such a fine line"; and "You deal with it in your family". Participants emphasised that the intervention needs to be delivered by willing and skilled facilitators to people who are ready to talk in their family context; and this intervention needs to be embedded within connected services. Stakeholders felt that it would be possible to adapt the LivDem model for couples and families so long as a number of conditions were met. An adapted family or couple version of LivDem has the potential to facilitate improved adaptation to dementia and to be incorporated into dementia pathways and delivered with the NHS and the voluntary sector. Further research is needed to establish the feasibility of such an intervention.

The lived experience of dementia, the views of the caregiver, and the pursuit of scientific understanding by researchers need to converge for holistic and collaborative action to improve dementia research. However, there often exist silos and division between these groups, which limits relevance and innovation. This paper aims to bridge this divide by offering a tripartite exploration of dementia research through three distinct, yet interconnected, lenses of a person living with the disease, their dedicated carer, and a researcher actively engaged in dementia research. This collaborative endeavour highlights the need to move beyond the traditional (and outdated) dichotomy of "subject and expert". By weaving together personal perspectives and insights in a multi-voiced approach, we highlight the opportunities and potential that can emerge from working in partnership and using a relational approach.

The number of caregivers and people living with dementia and other related forms of cognitive impairment is increasing worldwide. Compared to heterosexual and cisgender individuals, studies suggest that lesbian, gay, bisexual, queer, or other sexual and/or gender minority people (LGBTQ+) are at a higher risk for known risk factors for cognitive impairment and dementia, stemming from minority stress experiences. Limited research has explored the distinct obstacles that LGBTQ+ people with cognitive impairment and caregivers encounter, especially within dementia care. The purpose of this study was to deepen our understanding regarding LGBTQ+ people with cognitive impairment and caregivers' experiences with dementia care spaces, and to identify the strategies that they perceive as effective in creating safer and more inclusive spaces. Fourteen LGBTQ+ participants aged 27-78 ( = 58.07), consisting of two individuals with cognitive impairment and 12 caregivers, were interviewed about the care needs of LGBTQ+ people with cognitive impairment and caregivers, and their experiences with dementia care spaces. Using reflexive thematic analysis, we identified three overarching themes from the data, indicating that LGBTQ+ people with cognitive impairment and caregivers feel left "on the margins" of dementia care and express a desire for their identities to be celebrated and recognized. Additionally, they proposed recommendations for policy change to foster safer and more inclusive spaces for dementia care. The findings call attention to the negative experiences of LGBTQ+ people with cognitive impairment and caregivers with dementia care, but also highlight the ways in which care practices can be transformed to effectively address their care needs.

to explore the range of cultural understandings of dementia held by people providing nursing care globally. There is a worldwide shortage of nurses and healthcare workers, resulting in extensive global mobility among the workforce. Cultural competence is expected of nurses who serve diverse populations and although self-awareness is recognised as crucial in developing this ability, the focus has tended to be on the identity of the patient and adjusting care according to their specific needs. However, taken-for-granted assumptions drive unconscious judgements and therefore behaviour so nurses' dementia-related understandings are worthy of exploration. An integrative literature review, comprising five stages: problem identification; literature search; data evaluation; data analysis; and presentation of the findings. Six databases were searched for original research published between 1997 and 2023. Studies which focus on qualified/registered and unqualified/unregistered healthcare workers' cultural understandings of dementia were included. Studies were evaluated using a tool designed for the critical assessment of qualitative research. Data was extracted using a bespoke spreadsheet. Conventional content analysis was undertaken to develop a synthesised summary of the findings of the studies. 11 papers met the inclusion criteria. Content analysis led to identification of two main themes: 'Stigma as a common factor in cultural perceptions of dementia', and 'Stigma derived from cultural perceptions has consequences for people living with dementia'. An international perspective facilitated insight into alternative perceptions of the nature of dementia and care responses. A version of the 'Relationship Centred Care' model, expanded to include the wider community, could support theoretical and practical recommendations for culturally congruent approaches to care. Further research is required to examine the usefulness of incorporating this approach internationally. The authors followed the ENTREQ reporting guidelines (Tong et al., 2012).

Dementia does not merely affect individuals, the carer and the person living with dementia, but also has a profound impact on their spousal relationship. As such, this study aimed to gain a deeper understanding of how dementia affects spousal relationships with a focus on interpersonal (i.e. relationship adjustment, communication engagement and emotional connection between two individuals) and intrapersonal (i.e. loss of self within the context of relationships) dynamics using a qualitative approach. The study also explored how carers adapt to such relationship challenges in the context of dementia care. A phenomenological approach was used to capture the subjective experiences of female spousal carers, who regularly support their partner living with dementia. A total of nine semi-structured interviews were conducted. theme highlighted how learning to acknowledge role shifts from a spouse to a carer is critical for carers to manage relationship difficulties. theme demonstrated the importance of reminiscing about the shared history between dyads to cope with feelings of loss of affective intimacy. theme revealed carers' need to learn a new way of communicating due to the decrease in meaningful communication and two-way interaction. theme highlighted the importance of self-compassion to overcome feelings of self-loss and isolation. Findings suggest that improving the relationship between female spousal carers and their partner living with dementia may require targeted interventions addressing different factors. Such interventions can include a couple's life story approach to enable couples to reminisce about their shared experiences, interactive communication training to enhance meaningful engagements, and a psychological approach such as compassion-focused therapy to overcome emotional challenges and facilitate self-compassion.