As the population ages and new therapies become available, general practitioners will have a significant role in the early detection, diagnosis, and management of dementia. However, both in Australia and globally, dementia remains under-recognised and under-diagnosed in primary care. The aim of this study is to develop a complex intervention, informed by behaviour change theory, to improve rates of dementia diagnoses in Australian primary care. Co-design participants included GPs, general practice nurses, practice managers and reception staff. A program logic model was used to describe the essential activities and mechanisms of the intervention. Six behaviour changes—education, training, enablement, modelling, persuasion, and environmental restructuring—were identified to address the identified barriers to dementia diagnosis in primary care. The intervention comprises seven activities—peer-led online dementia education and training, geriatrician ‘drop-in’ online support sessions, quality improvement in dementia care sessions, stand-alone videos, auditing and benchmarking, a dementia risk alert tool and a set of dementia diagnosis and management decision-making resources. Using behaviour change theory can assist in the development of complex interventions aimed at changing clinical practice and may assist in their evaluation.

Background Primary care is increasingly tasked with early detection, diagnosis, and management of dementia. Despite policy initiatives, education investments, and development of diagnostic and care pathways in Australia and globally, dementia care in primary care settings remains sub-optimal. This study is part of a bigger project titled Facing Dementia Together, comprising a primary care practice change program and a public help-seeking campaign, aimed at improving timely detection and management of dementia in primary care. A core element of intervention research is understanding the context in which the intervention is to be developed, implemented and evaluated. The aim of this study is to identify current practice and barriers to dementia identification, diagnosis and management in primary care in two regions in Australia. Methods A qualitative design with semi-structured interviews was used. The interview guide was informed by projective techniques using hypothetical scenarios. A convenience sample of 18 key primary care stakeholders were recruited through the Western Victoria and Western Sydney Primary Health Networks located in two different states of Australia. Data analysis Data was thematically analysed following Braun and Clarke's six steps of thematic analysis The socioecological model was used to guide the development of themes. Results Four themes described current primary care practitioner practices in dementia diagnosis and management (1) Family concern triggers dementia investigation (2) GPs delay conversations about dementia (3) Completing routine cognitive assessments in the 75+ health assessment, and (4) Variability in post-diagnostic care. Barriers to identifying, diagnosing, and managing dementia were organised according to the levels of the socioecological framework: 'There is not much we can do' (individual), 'A difficult conversation' (Interpersonal), 'Hierarchy affects team communication' (Organisational), 'It's hard to get services' (Community) and 'If it's not financially viable, it won't be done' (Policy). Conclusion Enhancing care for people living with dementia and their carers requires multifaceted interventions that not only strengthen the capability and motivation of primary care practitioners, but also address intrapersonal, community, organisational, and policy-related challenges. The findings of this study inform the Facing Dementia Together primary care practice change intervention to improve early dementia diagnosis and management in primary care.

Dementia is a leading cause of disability and death worldwide, yet diagnosis in primary care remains substantially lower than expected, delaying access to treatment, support and future care planning. The Facing Dementia Together Practice Change Program was developed as a co-designed, multicomponent intervention to improve dementia diagnosis in Australian general practice. A mixed-methods process evaluation used the RE-AIM framework with the addition of Appropriateness. The intervention included Primary Health Network (PHN) engagement, GP education, clinical resources, audit and benchmarking reports, specialist support, and a dementia risk-alert tool. Data were collected through surveys, stakeholder interviews, website analytics and program documentation. Clinicians who participated reported increased confidence and changes in dementia-related clinical behaviours, while education, resources and benchmarking were perceived as valuable. However, overall reach was limited by competing clinical priorities, workforce pressures, lack of financial incentives, and PHN implementation challenges. The dementia risk-alert tool was feasible but achieved limited uptake because of software compatibility, usability concerns and incomplete electronic medical record data. Although the program was acceptable to participating clinicians, limited reach constrained its potential impact. These findings highlight organizational, workforce, digital infrastructure and policy factors that influenced implementation of multicomponent interventions in routine primary care.

Behaviour support plans (BSPs) for people in residential aged care (RAC) were mandated nationally in 2019 for those who require, or may require, restrictive practices as part of their care. The legislation aims to reduce and potentially eliminate restrictive practices: long-standing problems of their inappropriate use were highlighted by the Royal Commission into Aged Care Quality and Safety (2018). Many people living with dementia will be impacted: up to 90% experience changed behaviours; 54% of people in RACs have dementia; and approximately 20% experience cognitive decline without a diagnosis. There is no research examining how BSPs are implemented in practice since legislation was introduced. Our exploratory pilot study encompasses behaviour support policies, BSPs and staff views to identify practices, themes, barriers and enablers. This paper focuses on the content of BSPs. RAC providers were recruited via professional networks and requested to include two sites, submitting three BSPs for residents from each site. Age, gender and diagnosis from redacted plans were extracted, with legislation used as a framework to extract further content for analysis, including behaviours and non-pharmacological strategies prescribed. Preliminary results are presented with analysis continuing. Seven providers (24 sites) across eastern Australian states submitted sixty BSPs, which varied in format, content, and length (range 1-27 pages). Residents were mostly female (n = 41; 68%), aged 84 years (mean)(± 8.0 years; range 65-98), and according to BSPs, had dementia/cognitive impairment (n = 57; 95%). Agitation and ‘wandering’ were the most frequently reported behaviours. Restrictive practices use was common (n = 46, 77%), including chemical restraint (n = 14; 30%), environmental secure unit restraint (n = 14; 30%), or both chemical and environmental restraint (n = 15; 33%). Variability in number and specificity of behaviour support strategies prescribed was evident: some plans included 4-5 generic strategies, such as offering drinks/snacks; others detailed multiple strategies, including specific times of need and clear resident support preferences. Our study suggests that implementation of behaviour support legislation as reflected in care planning documentation is inconsistent, in terms of what constitutes behaviour and how best to support residents. Positive framing of behaviour support is limited. Guidance and education for the sector are urgently indicated.

OBJECTIVES:This paper aimed to develop a model to describe help-seeking for dementia diagnosis. The practical model is intended to guide public health interventions to increase help-seeking. METHOD:The model was developed by our multidisciplinary team based on qualitative semi-structured interviews in English (n = 33) and Chinese (n = 8) with older people, people with dementia and carers. The model was also informed by systematic reviews on help-seeking for dementia diagnosis, theories of help-seeking and further iterated based on feedback from a co-design group (n = 10). RESULTS:The model starts with changes which might be symptoms of dementia being observed by the person or family/friends and ends in dementia assessment. Model steps are (1) The person deciding that the changes represent a health problem; (2) obtaining support or confirmation from family/friends that the changes are a health problem; (3) deciding to seek medical help; and (4) persuading the GP to facilitate dementia assessment. The model applies to English and Chinese-speaking Australians, though there were additional barriers for Chinese speakers. There are personal, family, community and health system barriers at each step. CONCLUSION:Interventions to improve diagnosis of dementia might target public knowledge of dementia symptoms and benefits of a diagnosis, and general practice.

ObjectivesThis 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.MethodQualitative study using projective techniques during online focus groups, online and telephone interviews with people with dementia and caregivers.ResultsTwenty-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.ConclusionAcross 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.

Research involving people with dementia has highlighted the need to improve engagement in the conduct of interviews and focus groups. Projective and enabling techniques may be useful and avoid some of the drawbacks associated with direct questioning. However, researcher-driven projective techniques have not been extensively tested in research with people with dementia. In 2019, researchers in Australia, Canada, the Netherlands and Poland received training and trialled projective and enabling techniques to collect data about dementia diagnostic and early post-diagnostic experiences. The techniques were used with a total of thirty people with dementia (aged 67–97 years) in online and face-to-face individual and dyadic interviews and a focus group. Word association activities supported brainstorming about the concepts of ‘dementia’ and ‘support’. A researcher-driven photo elicitation technique was utilised to seek responses concerning a hypothetical couple at four time points: during a diagnostic conversation, and at 1, 6 and 12-month post-diagnosis. Discussions were audio recorded and transcribed and interviewers created ‘meta’ mind maps of word associations and made reflective notes regarding participant engagement. Deductive content analysis was used to assess the value of the techniques to support a manageable, comprehensible and meaningful research experience. Word associations supported free-flowing conversations around the key research concepts. Photo elicitation techniques promoted empathy and supported personal reflections on the probable experiences and needs of the hypothetical couple. The techniques were also useful in eliciting reflections on personal experiences, societal responses to dementia, and recommendations for improving the diagnostic conversation and supports for the post-diagnostic period. Overall, the techniques appeared to lessen some of the demands of direct questioning but were not manageable or meaningful for all participants. Further research should explore the vast array of projective techniques and engage in greater co-design and tailoring of research approaches to enhance the toolkit of dementia researchers.

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.

Forward with Dementia is a co-designed campaign to improve communication of dementia diagnosis and post-diagnostic support. 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. 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. 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.

People with dementia and their care partners report a lack of support, treatment, and information, fragmented services, and a lack of inclusion in decisions about their care. Care planning may address these issues; however, there is scarce literature on the process or benefits of care planning for people with dementia. This review describes the literature on care planning for community-dwelling people with dementia and their care partners. A systematic scoping methodology was followed to identify the research questions, identify relevant documents, select relevant documents, chart the data, and collate, summarise, and report the results. 31 full-text documents published between 2010 and May 2020 were identified and reviewed. Seven were guidelines, seven were expert opinion pieces, 11 were intervention studies, and six were descriptive studies. The topics and process of care planning varied depending on the service context (e.g., memory clinic, home care, and primary care). Care planning was presented as a component of case management in 15 papers. Six of the 11 intervention studies reported positive outcomes, one showed no improvement, and one did not evaluate outcomes for people with dementia or their care partners. Of the six with positive outcomes, four evaluated care planning in the context of care management. There is limited evidence that care planning alone improves outcomes for people with dementia and their care partners. It is unclear whether it may have benefits when combined with care management.

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.

PurposeThis 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.MethodsThe 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.ResultsUsers 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.ConclusionsThe 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.

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.MethodsA 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.

OBJECTIVE:To examine the language of the behaviour assessment in the new Australian National Aged Care Classification (AN-ACC) funding instrument. We explored whether the (BRUA) will support an inclusive and progressive approach for people living with dementia in residential aged care.METHODS:Databases were searched to identify publicly available literature relating to the development of the AN-ACC and BRUA, and hand searches of reference lists and selected websites were completed to identify additional grey literature, dementia language and best practice guidelines. Criteria for language use were extracted and compared with the BRUA in the light of the current national aged care reform agenda, as well as research with and perspectives of people with lived experience of dementia.RESULTS:The language within the BRUA did not align with international dementia language guidelines, and the content presented was disrespectful to those with lived experience. The assessment appears inconsistent with international best practices and is potentially discriminatory within the aged care cohort.CONCLUSIONS:The BRUA is intended as a funding instrument and not as a care planning tool, yet the negative representation of the lived experience of people with dementia embedded within a mandated assessment is likely to influence industry practice by condoning unsuitable language and attitudes amongst assessors, providers and staff. For better alignment with the current positive agenda for aged care reform in Australia, we recommend continued review and updating of this tool to avoid unintended consequences.

Abstract Purpose Reablement is a strategy recommended in clinical practice guidelines that could maximise functioning and quality of life in people living with dementia. This project sought to develop a practical handbook for health professionals illustrating the best, currently available evidence via newly-developed composite reablement programs. Materials and methods Handbook development occurred over five phases, informed by Normalisation Process Theory: (1) literature review, (2) sector interviews to explore how handbook implementation may impact practice, (3) workshop to determine final handbook content, (4) reablement program synthesis and handbook development, and (5) dissemination and implementation planning to support optimal uptake and normalisation within the sector. Results Interviews (n = 22) identified sector support for development of the reablement handbook. Workshop (n = 24 participants) outcomes informed the final eight reablement programs sorted by functional outcomes (everyday living activities; mobility and physical function; and cognition and communication). A technical guide and consumer information booklet were developed to support the handbook. A comprehensive handbook implementation plan involving dynamic assessment and monitoring was developed. Conclusions The reablement handbook provides a practical and accessible avenue to support function in people with dementia. Robust, coordinated dissemination, implementation and assessment of the new resource across a range of practice settings is now required. Implications for rehabilitation Dementia leads to disability and dependence, impacting the person with dementia, their family and society. Reablement, an approach consistent with rehabilitation, is a strategy recommended in clinical practice guidelines that could maximise functional performance and quality of life in people living with dementia. This study describes development of a freely available evidence-informed reablement handbook designed to support delivery of high-quality reablement programs by allied health/nursing professionals for people living with dementia. Outcomes have potential to inform future implementation work and to ultimately improve the quality of services offered within the dementia sector.

The COGNISANCE (Co-designing dementia diagnosis and post diagnostic support) project aims to co-design and produce resources that will improve communication of dementia diagnoses and support for people living with dementia (PLWD) and care partners following diagnosis. Internationally, dementia guidelines reinforce the need for post-diagnostic support, however PLWD and care partners are frequently dissatisfied. COGNISANCE is being conducted in five countries; Poland, UK, Netherlands, Canada and Australia. This presentation reports on current Australian experiences of support from the perspectives of PLWD, care partners and health and social care practitioners. Interviews and focus groups were conducted using online video conferencing with 8 PLWD who had been diagnosed with dementia in the past 24 months and 17 care partners. Nineteen health or social care professionals were interviewed individually or in small groups via videoconferencing. Techniques used included word association exercises and projective interviewing - projecting thoughts and feelings onto photographs of an (hypothetical) older couple receiving a diagnosis; and discussion of barriers and facilitators to post-diagnostic support. Interviews were transcribed and thematically analysed. Key themes were that PLWD and care partners experienced lack of support and direction following diagnosis. Support information given at the time of diagnosis was usually minimal. PLWD described ‘an information vacuum’ and care partners felt lost, and at a loss of what to do next, or where to find practical or emotional support. The majority of care partners felt abandoned and wanted follow-up after the diagnostic interview. Health care professionals were concerned but described difficulty in recommending useful supports because of lack of available/appropriate services, lack of knowledge of supports or therapeutic nihilism. Post-diagnostic support is inadequate and could be improved by follow-up, better linking with services, provision of information and development of a support plan.

The coronavirus disease 2019 (COVID-19) pandemic has led to reflections around reforming Australia’s health care system.1 In view of future reforms, this article is intended to provoke policy and clinical discussion regarding what an effective, efficient model of service delivery meeting the needs of people with dementia and their families may look like. The opinion presented here belongs to the members of the National Health and Medical Research Council (NHMRC) National Institute for Dementia Research Special Interest Group in Rehabilitation and Dementia.

Very severe behavioural and psychological symptoms of dementia (BPSD) have low prevalence but disproportionately poor outcomes for persons with dementia, others and systems of care, including inappropriate use of medication, tenuous accommodation, poor quality of life and increased costs. The Australian Government has established new Special Dementia Care Programmes (SDCPs) to provide interim care for up to 12 months for those with severe and persistent BPSD unsuitable for mainstream aged care. This 10‐year retrospective review describes environmental design, governance, clinical processes, characteristics and outcomes for 80 residents of a similar‐aged care mental health partnership SDCP. A key finding was that average length of stay was slightly over 12 months. All surviving residents except one were able to be transferred to mainstream aged care services. Doses of regular and PRN antipsychotic and anxiolytic medications were significantly reduced. SDCPs may have the potential to improve care and outcomes for this group of vulnerable older people.

BACKGROUND:Reablement has potential for enhancing function and independence in people with dementia. In order to enhance the use of evidence-based reablement in this population, this study sought to understand the current practices and needs of the sector around these interventions.METHODS:A purposive sample of 22 Australian aged and community-care providers participated in a semi-structured interview. Qualitative content analysis was applied to the data, with key themes interpreted within the context of the study aims: to explore (1) what reablement interventions are currently being offered to people living with dementia in Australia, and (2) what are key factors that will contribute to enhanced uptake of reablement interventions in dementia practice.RESULTS:Four themes emerged: (1) 'what reablement interventions are being offered', outlined a range of exercise and cognitive/social interventions, with only a proportion generated from a clear evidence-base, (2) 'what's in a name', illustrated the range of terms used to describe reablement, (3) 'whose role is it', highlighted the confusion around the range of health professionals involved in providing reablement interventions, and (4) 'perceived barriers and enablers to providing reablement to people living with dementia', described a range of factors that both hinder and support current reablement practice.CONCLUSIONS:Reablement interventions currently provided for people living with dementia in Australia are variable, with confusion around the definition of reablement, and apparently limited use of evidence-informed interventions. A multifaceted approach involving an evidence-informed and freely-accessible resource, and taking into account the varied levels of influence within the aged care sector would support uptake and implementation of reablement interventions for people living with dementia.

Background and Objectives Despite acknowledged benefits of residents in nursing homes spending time outdoors, little is known about factors related to their use of outdoor space. This systematic review summarizes reported barriers and enablers to nursing home residents’ use of outdoor spaces. Research Design and Methods Multiple databases were searched to May 2018. Qualitative or mixed methods studies describing barriers/enablers to use of outdoor areas by residents of nursing homes (aged 65 years and older), as reported by residents, staff, or family members were included. Study quality rating, thematic analysis, and stratified analyses were performed and confidence in findings assessed using GRADE-CERQual. Results Twenty-four studies were included. Nineteen collected data from residents, 15 from staff/caregivers, 7 from families. Major themes and key findings concerned: design of the outdoor area (importance of garden greenery and built features), safety concerns and staffing issues, weather and seasons (appropriate shade and shelter), design of the main building (easy to open doors and nearby access points) and social activities. Conclusions and Implications Providing gardens with seasonal plants and interactive features, weather protected seating, manageable doors at accessible thresholds, planned social activities, and appropriate clothing are fundamental to facilitate nursing home residents’ access to the outdoors. Cultural change at an organizational level, addressing perceptions of safety as a barrier is important. Incorporation of the recommendations in this review by architects, facility managers, and policy makers in the design and management of nursing homes, may increase use of outdoor areas and improve the quality of life of residents. Registration The protocol is registered in Prospero (CRD42018100249).