Moving forward with dementia: an explorative cross-country qualitative study into post-diagnostic experiences.

OBJECTIVES: This explorative cross-country qualitative study aims to describe experiences of receiving a dementia diagnosis and experiences of support following a diagnosis in Australia, Canada, the Netherlands and Poland. METHOD: Qualitative study using projective techniques during online focus groups, online and telephone interviews with people with dementia and caregivers. RESULTS: Twenty-three people with dementia and 53 caregivers participated. Qualitative content analysis revealed five themes; (1) 'Coming to terms with dementia' helped people deal with complex emotions to move forward. (3) 'The social network as a source of support' and (4) 'The challenges and realities of formal support' and impacted 'Coming to terms with dementia'. (2) 'Navigating life with dementia as a caregiver' highlights caregiver burden and was impacted by (4) 'The challenges and realities of formal support'. People were (5) 'Self-caring and preparing for tomorrow' as they focused on maintaining current health whilst planning the future. Despite differences in healthcare and post-diagnostic support systems, there were more similarities across countries than differences. CONCLUSION: Across countries, formal support and support from friends and family are crucial for people with dementia and caregivers to come to terms with dementia and maintain carer wellbeing to ultimately live well with dementia.

Experiences of people with dementia and informal caregivers with post-diagnostic support: Data from the international COGNISANCE study.

OBJECTIVES: The study aims to describe people with dementia and informal caregivers' respective experiences of support after diagnosis and compares these experiences. Additionally, we determine how people with dementia and informal caregivers who are satisfied with support differ from those dissatisfied. METHODS: A cross-sectional survey study in Australia, Canada, the Netherlands, Poland, and United Kingdom was carried out to examine people with dementia and informal caregivers experience with support (satisfaction with information, access to care, health literacy, and confidence in ability to live well with dementia). The separate surveys contained closed questions. Analysis consisted of descriptive statistics and Chi-square tests. RESULTS: Ninety people with dementia and 300 informal caregivers participated, and 69% of people with dementia and 67% of informal caregivers said support after diagnosis helped them deal more efficiently with their concerns. Up to one-third of people with dementia and informal caregivers were dissatisfied with information about management, prognosis, and strategies for living positively. Few people with dementia (22%) and informal caregivers (35%) received a care plan. People with dementia were more often satisfied with information, had more often confidence in their ability to live well with dementia, and were less often satisfied with access to care compared to informal caregivers. Informal caregivers who were satisfied with support were more satisfied with information and access to care compared to informal caregivers not satisfied with support. CONCLUSIONS: Experience of dementia support can be improved and people with dementia and informal caregiver differ in their experiences of support.

Using World Cafés to engage an Australian culturally and linguistically diverse community around human papillomavirus vaccination.

INTRODUCTION: Internationally, cultural factors are associated with vaccine uptake and completion in ethnic minority communities. Whilst Australia has achieved high human papillomavirus (HPV) vaccination, little is known about how culture or ethnicity influences HPV vaccination engagement. To address these gaps, we partnered with our Local Health District to explore how one culturally and linguistically diverse (CALD) community engages with school and HPV vaccination. METHODS: We adapted a participatory research method (the World Café) to engage one local CALD community-the Macedonian community (Our bi-cultural researcher and participants preferred the term 'Macedonia' rather than The Republic of North Macedonia as outlined in the 2018 Prespa agreement) in New South Wales (Australia)-to discuss HPV and school vaccination. Our qualitative analysis combined deductive codes taken from the Tailoring Immunization Programme framework, inductive codes guided by narrative inquiry (temporality, sociality and place) and previously known vaccination 'trust' frameworks. RESULTS: In late 2019, 31 local Macedonian community members were purposely recruited for two World Cafés (n = 15 mothers/grandmothers and n = 16 young adults). Our themes reveal a community narrative grounded in historical vaccine experiences, family views on vaccination and a general trust in schools. Participants collectively discussed how 'increasing knowledge' and 'tailoring health communications' could strengthen community vaccine decision-making. CONCLUSION: This study demonstrates how research partnerships and participatory methods can be applied in CALD community settings to research engagement with school and HPV vaccination. Our World Café dialogues highlight a positive narrative about vaccines, where community vaccination behaviours were built on multilayer trust relationships despite low vaccine knowledge. Our findings further knowledge around 'public trust' in school vaccination, highlighting the importance of existing (or missing) trust relationships when tailoring vaccine communication to local CALD communities. PATIENT OR PUBLIC CONTRIBUTION: Participants who took part in the World Cafes were all local Macedonian community parents or young adults who have been or will be exposed to the health services offered by school-based HPV vaccination. Thus, all the data collected came from their personal experiences with the school vaccination programme, or how they expect to participate in the programme. To ensure our study design was culturally appropriate and tailored to the Macedonian community, we engaged with the relevant local health stakeholders (the bi-cultural Multicultural Health Officer and Multicultural Health Service Manager Programme Director) to adapt and refine the World Café method for this context and setting. Our local health stakeholders also reviewed our preliminary findings, assisted with data interpretation and participated in manuscript editing.

Forward with Dementia: process evaluation of an Australian campaign to improve post-diagnostic support.

BACKGROUND: Forward with Dementia is a co-designed campaign to improve communication of dementia diagnosis and post-diagnostic support. METHODS: Webinars, a website, social and traditional media, and promotions through project partners were used to disseminate campaign messages to health and social care professionals (primary audience) and people with dementia and carers (secondary audience). The campaign ran between October 2021 and June 2022, with 3-months follow-up. The RE-AIM framework was used for process evaluation. Measurements included surveys and interviews, a log of activities (e.g. webinars, social media posts) and engagements (e.g. attendees, reactions to posts), and Google Analytics. RESULTS: There were 29,053 interactions with campaign activities. More than three-quarters of professionals (n = 63/81) thought webinars were very or extremely helpful. Professionals and people with dementia and carers reported that the website provided appropriate content, an approachable tone, and was easy to use. Following campaign engagement, professionals planned to (n = 77/80) or had modified (n = 29/44) how they communicated the diagnosis and/or provided post-diagnostic information and referrals. Qualitative data suggested that the campaign may have led to benefits for some people with dementia and carers. CONCLUSIONS: Forward with Dementia was successful in terms of reach, appropriateness, adoption and maintenance for professionals, however flow-through impacts on people with dementia are not clear. Targeted campaigns can potentially change health professionals' communication and support around chronic diseases such as dementia.

Supporting the involvement of older adults with complex needs in evaluation of outcomes in long-term care at home programmes.

BACKGROUND: It is important to involve older people in evaluating public programmes that affect their lives. This includes those with physical and cognitive impairments (such as dementia) who may need support to live at home. Many countries have implemented new approaches to support older people to live well at home for longer. However, it can be challenging to involve disabled people in service evaluation, so we are unclear whether services are meeting their needs. AIM: This study explored how a cascading methodology, offering different supports enabled the involvement of home care users with cognitive and physical impairments in the assessment of their care-related quality of life. METHOD: We used multiple tools from the Adult Social Care Outcomes Toolkit (ASCOT) with n = 63 older adults who were recipients of home care in the Illawarra. We also offered different physical and cognitive supports as needed. RESULTS: We started with the standard ASCOT questionnaire to assess the care-related quality of life, but then offered alternative formats (including Easy Read) and supports (including physical and cognitive assistance) if the older person needed them to participate. This allowed us to involve a greater diversity of older people in the evaluation, and changed what we found out about whether their care needs were being met. CONCLUSION: There is a need to implement more flexible and inclusive methods to increase the involvement of vulnerable users of long-term care in the assessment of service outcomes. This is important to ensure that the perspectives of all service users inform the delivery of person-centred care. It is also critical to understand the extent to which programmes are meeting the needs of vulnerable service users. PATIENT OR PUBLIC CONTRIBUTION: Service users with dementia were involved in the design of the 'Easy Read' questionnaire used in the study.

What is the impact of dementia on occupational competence, occupational participation and occupational identity for people who experience onset of symptoms while in paid employment? A scoping review.

BACKGROUND/AIM: Engagement in meaningful occupation, including paid work is considered an important determinant of health, impacted by injury or illness. Dementia is one neurodegenerative syndrome with potential to compromise capacity for remaining engaged in paid employment. In response to 'ageing' populations globally, policy shifts within developed economies are increasing workforce participation for those over 45 years and eligibility ages for retirement pensions. Dementia onset is not limited to 'older age', consequently an increased impact of dementia is likely for both older workers and those experiencing younger onset dementia. Therefore, identifying and addressing workforce participation issues confronting people with dementia is becoming increasingly important for occupational therapy practice. METHOD: This scoping review draws on peer reviewed literature to explore the impact of dementia on workers across the three domains of occupational engagement: occupational competence; occupational participation; and occupational identity using the Model of Human Occupation (MOHO). International studies published in English including full-text translations between 2000 and 2017 were identified from an incremental search of electronic databases (Web of Science; Scopus; Proquest; MEDLINE; CINAHL; and Health Business Elite) and hand searched reference lists. RESULTS: Six relevant papers were identified and retained for analysis, all reporting qualitative studies. Data were collated under the three domains of occupational engagement and further organised into emergent subcategories. While evidence was limited, person-centred approaches addressing dementia-related changes in occupational competence; workforce participation choices; and redefinition of occupational identity may mitigate negative experiences associated with transitioning from paid worker roles. CONCLUSION: There is a significant need for further research exploring the impact of dementia on engagement in paid work. Occupational therapists have an important part to play in enabling access to person-centred interventions that promote continued engagement in meaningful occupational roles, including opportunities to extend workforce participation and engage in supported transitions to retirement.

Are Big Food's corporate social responsibility strategies valuable to communities? A qualitative study with parents and children.

OBJECTIVE: Recent studies have identified parents and children as two target groups whom Big Food hopes to positively influence through its corporate social responsibility (CSR) strategies. The current preliminary study aimed to gain an in-depth understanding of parents and children's awareness and interpretation of Big Food's CSR strategies to understand how CSR shapes their beliefs about companies. DESIGN: Community-based qualitative semi-structured interviews. SETTING: New South Wales, Australia. SUBJECTS: Parents (n 15) and children aged 8-12 years (n 15). RESULTS: Parents and children showed unprompted recognition of CSR activities when shown McDonald's and Coca-Cola brand logos, indicating a strong level of association between the brands and activities that target the settings of children. When discussing CSR strategies some parents and most children saw value in the activities, viewing them as acts of merit or worth. For some parents and children, the companies' CSR activities were seen as a reflection of the company's moral attributes, which resonated with their own values of charity and health. For others, CSR strategies were in conflict with companies' core business. Finally, some also viewed the activities as harmful, representing a deceit of the public and a smokescreen for the companies' ultimately unethical behaviour. CONCLUSIONS: A large proportion of participants valued the CSR activities, signalling that denormalising CSR to sever the strong ties between the community and Big Food will be a difficult process for the public health community. Efforts to gain public acceptance for action on CSR may need greater levels of persuasion to gain public support of a comprehensive and restrictive approach.

The development and testing of the dementia friendly communities environment assessment tool (DFC EAT).

BACKGROUND: There is a growing recognition of the need to make the built environment in towns and cities more enabling for people with dementia. This study reports the development of a reliable tool to assess the support provided to people with dementia by public and commercial buildings such as council offices, supermarkets, banks, and medical centers as they approach, use, and leave them. METHODS: A three-step process was carried out to develop and establish the reliability of the tool: (1) a review of principles and available tools informed the development and modification of an environmental audit tool of proven utility, (2) the draft tool was subjected to an iterative process of evaluation by a team of people with expertise in design and town planning, people with dementia and their carers, (3) inter-rater reliability and internal consistency were assessed on a sample of 60 public and commercial buildings. RESULTS: The review of available tools led to the drafting of a tool that was refined through iterative, experience-based evaluation resulting in a tool that has high inter-rater reliability and internal validity. The data gathered enabled a sample of banks, libraries, shops, medical facilities, supermarkets and council offices to be compared. CONCLUSIONS: The new tool aids the collection of reliable information on the strengths and weaknesses of public and commercial buildings. This information is likely to be of use in the refurbishment of these buildings to improve their support of people with dementia as they use them in their daily life.

A review of current practices to increase Chlamydia screening in the community--a consumer-centred social marketing perspective.

BACKGROUND: Chlamydia trachomatis is one of the most frequently reported sexually transmitted infections (STI) in Australia, the UK and Europe. Yet, rates of screening for STIs remain low, especially in younger adults. OBJECTIVE: To assess effectiveness of Chlamydia screening interventions targeting young adults in community-based settings, describe strategies utilized and assess them according to social marketing benchmark criteria. SEARCH STRATEGY: A systematic review of relevant literature between 2002 and 2012 in Medline, Web of Knowledge, PubMed, Scopus and the Cumulative Index to Nursing and Allied Health was undertaken. RESULTS: Of 18 interventions identified, quality of evidence was low. Proportional screening rates varied, ranging from: 30.9 to 62.5% in educational settings (n = 4), 4.8 to 63% in media settings (n = 6) and from 5.7 to 44.5% in other settings (n = 7). Assessment against benchmark criteria found that interventions incorporating social marketing principles were more likely to achieve positive results, yet few did this comprehensively. Most demonstrated customer orientation and addressed barriers to presenting to a clinic for screening. Only one addressed barriers to presenting for treatment after a positive result. Promotional messages typically focused on providing facts and accessing a testing kit. Risk assessment tools appeared to promote screening among higher risk groups. Few evaluated treatment rates following positive results; therefore, impact of screening on treatment rates remains unknown. DISCUSSION: Future interventions should consider utilizing a comprehensive social marketing approach, using formative research to increase insight and segmentation and tailoring of screening interventions. Easy community access to both screening and treatment should be prioritized.

Reflections and Recommendations for Conducting In-Depth Interviews With People With Dementia.

Despite the importance and advantages of including people with dementia in research, there are various challenges for researchers and participants to their involvement. This article draws on the literature and experiences of a diverse group of authors, including a person with dementia, to provide recommendations about conducting research with people with dementia. Particular attention is given to in-depth interviews as a qualitative technique. More specifically, topics discussed include interview guide preparation, recruitment, obtaining consent/assent, conducting effective interviews, analysis and interpretation of data, effective communication of research findings, and reflections and recommendations for maintaining researcher and participant health. Given the current obstacles to participation in research of people with dementia, this is a timely article providing useful insights to promote improved outcomes using in-depth interviews.

Dementia attitudes and help-seeking intentions: an investigation of responses to two scenarios of an experience of the early signs of dementia.

OBJECTIVES: To investigate associations between dementia-attitudes and help-seeking intentions. METHOD: An online survey of 611 Australian adults (45-60 years) assessed dementia-related attitudes and help-seeking intentions in response to two scenarios of an experience of early dementia: for themselves (Scenario 1); and for a significant other (proxy help-seeking) (Scenario 2). Logistic regression models examined the relationship between four dementia-related attitudes (labelled Personal Avoidance, Fear of Labelling, Fear of Discrimination and Person Centredness) and help-seeking intentions. RESULTS: Most participants indicated they would seek help from a general practitioner (GP) for themselves (82.2%) or for a proxy (78.7%) in response to the scenarios. Whilst only 7.2% indicated they would seek help from no-one, 21.3% would delay seeking help. In response to Scenario 1, Personal Avoidance and Fear of Labelling were associated with intentions to delay help-seeking. Fear of both Labelling and Discrimination were associated with intentions to seek help from no-one. In response to Scenario 2, Personal Avoidance was associated with intentions to delay proxy help-seeking and a reduced likelihood of seeking help by phone or and with Fear of Discrimination, via a GP. Fear of Labelling was also associated with an intention to delay proxy help-seeking. CONCLUSION: Efforts to improve help-seeking for dementia should address attitudes relating to stigma including negative labelling and a desire for the avoidance of people with dementia. Fears relating to discrimination indicate a need to build public confidence regarding the capacity of the health and workforce sectors to support people with dementia ethically and appropriately.

Knowledge of, beliefs about, and perceived barriers to organ and tissue donation in Serbian, Macedonian, and Greek Orthodox communities in Australia.

CONTEXT: Despite the lifesaving benefits of organ and tissue donation, a worldwide shortage of suitable and registered donors exists. Although the reasons for this shortage are multifactorial, it has been recognized that distinct barriers to registration, family discussion, and consent that require targeted intervention and action are present among minority cultural, religious, and immigrant communities. OBJECTIVE: To explore the knowledge, attitudes, and beliefs of 3 orthodox religious communities in Australia (Macedonian, Greek, and Serbian Orthodox) and determine the implications for engaging with these communities to improve knowledge, attitudes, family discussion, and the ability to make an informed decision about donation. DESIGN: Qualitative approach using focus groups moderated by researchers and bicultural health workers with the assistance of accredited interpreters. PARTICIPANTS: 98 adult members of the Greek, Macedonian, and Serbian Orthodox communities in the Illawarra region of New South Wales, Australia. RESULTS: Clear barriers to discussing and making an informed decision about organ and tissue donation were identified. Knowledge of processes and procedures was low and discussion about death (and organ and tissue donation) with family members and loved ones was considered taboo. Despite these barriers, all 3 communities expressed a desire for more information and engagement. Of particular interest were the perspectives of 3 types of "experts": medical, religious, and other community members (who had experience with the organ and tissue donation system). Future programs designed for orthodox religious communities should consider the need for active strategies that facilitate information sharing and engagement between community members and these 3 types of experts.

Further development needed: models of post-diagnostic support for people with dementia.

PURPOSE OF REVIEW: There is increasing recognition of a service gap immediately after diagnosis for people with dementia and carers. This narrative review of models of post-diagnostic support focuses on recent developments and offers suggestions for future development. We present the current evidence for these models and consider the service components they provide against the recommendations of clinical guidelines and principles underpinning ideal post-diagnostic support. RECENT FINDINGS: Models of post-diagnostic support include a short-term support worker, ongoing support worker, centre-based support, primary care management, and specialist dementia clinics. Of these, specialist dementia clinics that include ongoing support workers provide most components of an ideal and timely post-diagnostic support framework, but may be more costly to implement universally. The greatest research evidence is for the benefits of long-term support models, specifically case management, though this does not necessarily include medical care or nonpharmacological interventions. There is sparce evidence for the benefits of short-term support worker models such as dementia advisers for people with dementia and carers. SUMMARY: Further development is needed to create whole-system models of dementia support which meet the needs of people with dementia and their carers, are timely, accessible and equitable, and can be implemented universally.

Understanding of Dementia in the Polish Language: A Frame Semantic Approach.

BACKGROUND: With the increasing incidences of dementia in aging societies, attention should be paid to the social context in which people with dementia live. One of its aspects is language transmitting beliefs, perceptions, and behavioral patterns. An analysis of understanding the diagnostic label of dementia may reveal the role of semantics in the process of social cognition of this disease. OBJECTIVE: The overall aim of this study was to investigate the understanding of the word dementia (otepienie) in the Polish language. METHODS: Frame semantics approach was applied. The structure of semantic information was uncovered with the concept of frame utilizing The National Corpus of Polish (the biggest corpus of contemporary Polish language of 1,500 million words). Additional data was collected from Polish speaking adults in Poland. RESULTS: The analyses allowed to identify the otepienie frame for Polish and verify how its elements are filled in by the general population, indicating the selectivity of colloquial knowledge about dementia. Dementia deviates from the prototypical disease. Need to care for the person with dementia outweighs treatment options. The cognitive symptoms and characteristics of the subject are salient. The perceptions of people with dementia embedded in semantics of the diagnostic label might create a basis for prejudicial attitudes among lay part of the society. CONCLUSION: Findings give foundation to further studies on relationship between semantics and social cognition of dementia which has a real impact on the social and clinical situation of people with dementia and may facilitate formulation of tailored messages aimed at building dementia-friendly society.

Beliefs around help-Seeking and Support for Dementia in the Australian Arabic Speaking Community.

BACKGROUND: The number of people with dementia in multicultural Australia is rapidly increasing. Despite its culturally diverse population, there is limited research about how people from ethnic minority groups understand and approach help-seeking and support for dementia. The aim of this study is to understand the perceptions of dementia symptoms, help-seeking and support in the Australian Arabic-speaking community. METHODS: This study used a cross-sectional qualitative research design. Individual, semi-structured interviews using projective stimulus techniques were used. Participants were three Arabic-speaking people aged over 70 who were experiencing cognitive changes or dementia symptoms, six carers, and five health or social care practitioners experienced in working with Arab-Australians. Phone or video chat interviews were conducted in either Arabic or English. Interviews were audiotaped, translated when needed, transcribed verbatim and inductive thematic analysis was undertaken. FINDINGS: Seven themes were identified. Participants described dementia as relating to symptoms of confusion and memory loss. Carers and older people believe that when older people are experiencing these cognitive symptoms, they must be cared for primarily by ensuring their happiness and comfort. Barriers to help-seeking and support included a lack of help-seeking due to cultural norms of family orientated care, families are unsure of where to seek help and fear of community judgement. Two ways to facilitate help-seeking and support were to build trust through culturally appropriate support and to educate the community. CONCLUSION: Family, trust and community were identified as central pillars of the Australian-Arabic-speaking community. There is a need to increase dementia literacy in this community particularly around help-seeking and decreasing stigma. Education should be promoted by trusted community members and religious leaders. As the first point of professional contact, general practitioners need to be upskilled to support Arabic-speaking Australians around dementia.

Exploring the usability, user experience and usefulness of a supportive website for people with dementia and carers.

PURPOSE: This study explores the usability, usefulness and user experience of the Forward with Dementia website for people with dementia and family carers, and identifies strategies to improve web design for this population. METHODS: The website was iteratively user-tested by 12 participants (five people with dementia, seven carers) using the Zoom platform. Data collection involved observations, semi-structured interviews and questionnaires. Integrative mixed-method data analysis was used, informed by inductive thematic qualitative analysis. RESULTS: Users of Version 1 of the website experienced web functionality, navigation and legibility issues. Strategies for desirable web design were identified as simplifying functions, streamlining navigation and decluttering page layouts. Implementation of strategies produced improvements in usability, user experience and usefulness in Version 2, with mean System Usability Scale scores improving from 15 to 84, and mean task completion improving from 55% to 89%. The user journey for people with dementia and carers overlapped, but each group had their own unique needs in the context of web design. CONCLUSIONS: The interplay between a website's content, functionality, navigation and legibility can profoundly influence user perceptions of a website. Dementia-related websites play an important role in informing audiences of management strategies, service availability and planning for the progression of dementia. Findings of this study may assist in guiding future web development targeting this population.

People with cognitive impairment can provide useful feedback on design and accessibility of websites, and their input should be obtained when developing digital applications for this group.This paper provides practical suggestions for website design features to improve function, legibility and navigation of websites for older people and people living with dementia.

"I Always Buy the Purple Ones If I See Them": Socioecological Factors Influencing Anthocyanin-Rich Food Consumption for Cognitive Health in Older Adults.

Despite the positive relationship between anthocyanin-rich foods and cognitive health, a dietary deficit exists in older adults. Effective interventions require an understanding of people's dietary behaviors situated in social and cultural contexts. Therefore, the aim of this study was to explore older adults' perceptions about increasing their consumption of anthocyanin-rich foods for cognitive health. Following an educational session and the provision of a recipe and information book, an online survey and focus groups with Australian adults aged 65 years or older (n = 20) explored the barriers and enablers towards eating more anthocyanin-rich foods and potential strategies to achieve dietary change. An iterative, qualitative analysis identified the themes and classified the barriers, enablers and strategies onto the Social-Ecological model levels of influence (individual, interpersonal, community, society). Enabling factors included a desire to eat healthily, taste preference and familiarity of anthocyanin-rich foods (individual), social support (community), and the availability of some anthocyanin-rich foods (society). The barriers included budget, dietary preferences and motivation (individual), household influences (interpersonal), limited availability and access to some anthocyanin-rich foods (community) and the cost and the seasonal variability (society). The strategies included increasing individual-level knowledge, skills, and confidence in utilizing anthocyanin-rich foods, educational initiatives about the potential cognitive benefits, and advocating to increase access to anthocyanin-rich foods in the food supply. This study provides for the first time, insight into the various levels of influence impacting older adults' ability to consume an anthocyanin-rich diet for cognitive health. Future interventions should be tailored to reflect the barriers and enablers and to provide targeted education about anthocyanin-rich foods.

Use of day centers for respite by help-seeking caregivers of individuals with dementia.

Addressing the use of respite services by caregivers of individuals with dementia is important to improving social support among this vulnerable group. This article uses theory to conceptualize the behavioral, normative, and control beliefs that caregivers of individuals with dementia associate with the use of out-of-home day centers for respite. Interviews and focus groups with 36 caregivers were conducted to explore the beliefs of both users and nonusers of these services. While service users held positive beliefs, nonusers perceived negative outcomes for the care recipient with dementia or faced barriers associated with the recipient's behavioral or physical needs. To address negative perceptions, nurses may need to promote the benefits of day centers for both caregivers and care recipients. However, improvements in program activities and environments, staff development, and caregiver support are also required to address negative beliefs and meet the needs of those currently not accessing care.

Using Journey Mapping to support staff, family members and allies of people with dementia to think and act differently during a care transition: The benefits and limits of care imagination.

Research methods are not just for data collection, but can also be engaged in to promote more immediate benefits for participants and to create social change. This paper reports on how journey mapping was used with staff and family members of people with dementia in a residential aged care facility in regional NSW, Australia. The study was conducted in the context of a care transition, where residents, including people with dementia moved from an existing site to another new facility. Care transitions are frequent yet difficult for people with dementia to negotiate, so it was important to predict their nature and understand what might make the move easier. We used an innovative visual method known as 'journey mapping' to engage 45 staff and 18 family members to inform supports for 30 people with dementia, who had been identified as needing additional support during the planned transition. The journey mapping process was useful for fostering the caring imagination and encouraging active and creative planning around change for the people with dementia. It also highlighted the entrenched inequalities in the aged care sector, where poorly paid staff wanted to enact broad ranging supports but felt unsupported to do so. In other words, to improving and re-imagining transitional care for people with dementia requires structural and systemic change rather than just localised re-imaginings. [245].