Dementia Care Pathway Research Articles

Understanding the role of agency in the navigation of regional dementia care and support service pathways.

Reliable dementia care and support service pathways are essential for timely diagnoses and for reducing the delay in time from diagnosis to care and support. However, carers commonly experience difficulties in finding information about where to go and what to do before and following a dementia diagnosis. In rural and regional areas, accessing dementia care and support services can be especially challenging. This qualitative, narrative inquiry study explores the agency of carers, and people living with dementia, in their navigation of regional dementia care and support service pathways. Semi-structured interviews were conducted with ten carers of people living with dementia from a regional location in Victoria, Australia. Data analysis was guided by the tripartite framework of Giddens' Theory of Structuration which considered the carers' intentionality, capacity and power to act in the navigation of their dementia care and support service pathways. Carers had intentionality; however, they did not always have the capacity and power to act. Information played a critical role in facilitating agency. Health literacy was important - as knowledge about where to look for/find information, and knowledge gained through experience, education or learning from others. Where carers encountered barriers, they lacked capacity and power. This occurred where there was an absence of information or knowledge, incorrect information (e.g. misdiagnoses), and where government bodies impeded carers' efforts. Information and knowledge are critical to the progression of dementia care and support service pathways. Health literacy is a significant resource, and carers would benefit from dementia education/training. The agency of carers in navigating their dementia care and support service pathways relies on carers themselves finding information and seeking out knowledge and education. However, GPs, local health providers, and dementia organisations have an important role to play in helping carers to find information towards accessing dementia care and support services.

An Exploration of the Peri-Diagnostic Experiences of Lesbian, Gay and Bisexual People With Dementia Using the Candidacy Framework.

How dementia affects lesbian, gay, bisexual, trans, queer people or those with other minoritised sexual/gender identities (LGBTQ+) is not well understood. Furthermore, existing research often excludes the voices of LGBTQ+ people living with dementia and focuses instead on their care partners. This study addresses this evidence gap by drawing on the ESRC/NIHR funded DETERMIND cohort, consisting of 940 newly diagnosed people with dementia, to explore the peri-diagnostic experiences of people living with dementia who identify as LGBTQ+. We recruited five people (who identified as lesbian, gay or bisexual [LGB]) and completed semi-structured interviews with them and their partner caregivers (n=3) discussing their experiences of (1) engaging with dementia health care services, (2) receiving a dementia diagnosis, and (3) the support they were offered after diagnosis. Interviews were shaped by the Candidacy Framework, a theoretical model for understanding accessibility of health services, and an inductive thematic analysis was employed to develop common themes. Participants did not routinely disclose their LGBTQ+ identities to health service professionals, despite feeling this was an essential aspect of who they are. They relied on their resilience of overcoming previous experiences of lifetime discrimination to navigate complicated dementia care systems. The importance of 'chosen families' as informal support networks for LGBTQ+ people living with dementia was highlighted, particularly given the lack of formal care services they felt comfortable accessing. All participants were concerned about their future care needs and whether they would receive home-based or community-based support that respected their LGBTQ+ identities. This study adds to the limited evidence base that can be used to inform future research, policy and practice seeking to address inequalities across the dementia care pathway. We only interviewed people who identified as LGB so generalizability to the whole LGBTQ+ population is limited, however our data suggest dementia health care professionals should encourage and support disclosures of LGBTQ+ identities so that inclusive care and support planning can be provided to LGBTQ+ people at every stage of dementia.

Reaching people and managing membership in community-based dementia support groups: the Get Real with Meeting Centres realist evaluation part 1

Objectives There is a need to improve the provision and reach of community services for people living with dementia, a goal in which community-based support groups can play a key role. The Get Real with Meeting Centres project aimed to explore factors involved in the success and sustainability of Meeting Centres (MCs) a form of community-based support proliferating in the UK. This is the first of two linked articles outlining learning from this realist evaluation of MCs, which focusses on findings around reach and membership. Method Semi-structured interviews and focus group discussions were conducted with 77 participants across three case study MC sites in England and Wales, including people living with dementia, informal carers, staff, volunteers, trustees, and supporting professionals/practitioners. Data were themed, then analysed using both soft systems methodology and realist logic of analysis. Results Fifty-two ‘context-mechanism-outcome’ statements were generated, explaining how background circumstances might trigger responses/processes to produce wanted or unwanted outcomes regarding four key areas for MC sustainability: Referrals and the dementia care pathway; Reaching people and membership; Carer engagement and benefit; and Venue and location. Conclusion Strong links with formal services and a well-functioning dementia care pathway are essential to sustaining community-based group support such as MCs; group support is also well-placed to assist work to improve pathway issues. Clarity of offer (including benefit to carers), and a wide range of activities, are key to appeal and reach; transport to, and use of, venue are challenges, as are pressures to support people with more advanced dementia.

Dementia care pathways in prisons – a comprehensive scoping review

BackgroundThe number of older people in prison is growing. As a result, there will also be more prisoners suffering from dementia. The support and management of this population is likely to present multiple challenges to the prison system.ObjectivesTo examine the published literature on the care and supervision of people living in prison with dementia and on transitioning into the community; to identify good practice and recommendations that might inform the development of prison dementia care pathways.MethodsA scoping review methodology was adopted with reporting guided by the PRISMA extension for scoping reviews checklist and explanation.ResultsSixty-seven papers were included. Most of these were from high income countries, with the majority from the United Kingdom (n = 34), followed by the United States (n = 15), and Australia (n = 12). One further paper was from India.DiscussionThe literature indicated that there were difficulties across the prison system for people with dementia along the pathway from reception to release and resettlement. These touched upon all aspects of prison life and its environment, including health and social care. A lack of resources and national and regional policies were identified as important barriers, although a number of solutions were also identified in the literature, including the development of locally tailored policies and increased collaboration with the voluntary sector.ConclusionTo our knowledge, this is the most comprehensive and inclusive review of the literature on dementia care pathways in prison to date. It has identified a number of important areas of concern and opportunities for future research across the prison system, and its operations. This will hopefully lead to the identification or adaptation of interventions to be implemented and evaluated, and facilitate the development of dementia care pathways in prisons.

Exploring dementia care pathways in seven LMICs with the help of case vignettes – identifying opportunities for strengthening pre‐ and post diagnostic support

AbstractBackgroundThere is a scarcity of information about the care pathways of people living with dementia under different circumstances in Low and Middle Income Countries (LMICs) countries. This knowledge is important to effectively improve system responses and processes for people living with dementia and their families.MethodDuring a workshop with researchers from a range of LMICs, we identified key variables likely influencing people’s access to and routes through health and long‐term care system. Based on these, we developed five case vignettes exploring these key characteristics together with the research teams in the seven STRiDE (‘Strenghtening Responses to dementia in DEveloping countries’) project countries. The multidisciplinary STRiDE country teams then narratively described the likely care pathways and validated the results with relevant stakeholders.ResultUsing the same five vignettes across Brazil, India, Indonesia, Jamaica, Kenya, Mexico and South Africa enabled us to analyse the dementia care system. The vignettes highlighted the role of infrastructure on accessibility regarding diagnosis, help and support. While health service entry points varied by health care system design and type of health insurance, we found that traditional healers and alternative medicine, often in parallel, also played a role in most countries. Where people rely on public services, awareness of dementia among entry level healthcare workers seems important.Following diagnosis, health services were the main ongoing support provided across countries. Availability of other types of supporting therapies or social interventions varied. Non‐governmental organisations or faith‐based support seemed to be especially important in rural areas. Across all countries, families and especially women provide the bulk of care and support. Residential care has been described as stigmatised in several countries. Issues around availability, affordability and quality of care in residential care were also raised.ConclusionExploring care pathways of people with different social profiles is important to show the responsiveness of health and long‐term care systems to people’s needs and to enable that bottlenecks to care and support can be addressed through interventions and policy. Comparing the vignettes across the seven STRiDE countries highlights similarities but also differences.

Primary Care Pracitioner Perspectives on the Role of Primary Care in Dementia Diagnosis and Care

Although the barriers to dementia care in primary care are well characterized, primary care practitioner (PCP) perspectives could be used to support the design of values-aligned dementia care pathways that strengthen the role of primary care. To describe PCP perspectives on their role in dementia diagnosis and care. In this qualitative study, interviews were conducted with 39 PCPs (medical doctors, nurse practitioners, and doctors of osteopathic medicine) in California between March 2020 and November 2022. Results were analyzed using thematic analysis. Overarching themes associated with PCP roles in dementia care. Interviews were conducted with 39 PCPs (25 [64.1%] were female; 16 [41%] were Asian). The majority (36 PCPs [92.3%]) reported that more than half of their patients were insured via MediCal, the California Medicaid program serving low-income individuals. Six themes were identified that convey PCPs' perspectives on their role in dementia care. These themes focused on (1) their role as first point of contact and in the diagnostic workup; (2) the importance of long-term, trusting relationships with patients; (3) the value of understanding patients' life contexts; (4) their work to involve and educate families; (5) their activities around coordinating dementia care; and (6) how the care they want to provide may be limited by systems-level constraints. In this qualitative study of PCP perspectives on their role in dementia care, there was alignment between PCP perspectives about the core values of primary care and their work diagnosing and providing care for people living with dementia. The study also identified a mismatch between these values and the health systems infrastructure for dementia care in their practice environment.

The use of the integrated cognitive assessment to improve the efficiency of primary care referrals to memory services in the accelerating dementia pathway technologies study.

Current primary care cognitive assessment tools are either crude or time-consuming instruments that can only detect cognitive impairment when it is well established. This leads to unnecessary or late referrals to memory services, by which time the disease may have already progressed into more severe stages. Due to the COVID-19 pandemic, some memory services have adapted to the new environment by shifting to remote assessments of patients to meet service user demand. However, the use of remote cognitive assessments has been inconsistent, and there has been little evaluation of the outcome of such a change in clinical practice. Emerging research has highlighted computerized cognitive tests, such as the Integrated Cognitive Assessment (ICA), as the leading candidates for adoption in clinical practice. This is true both during the pandemic and in the post-COVID-19 era as part of healthcare innovation. The Accelerating Dementias Pathways Technologies (ADePT) Study was initiated in order to address this challenge and develop a real-world evidence basis to support the adoption of ICA as an inexpensive screening tool for the detection of cognitive impairment and improving the efficiency of the dementia care pathway. Ninety-nine patients aged 55-90 who have been referred to a memory clinic by a general practitioner (GP) were recruited. Participants completed the ICA either at home or in the clinic along with medical history and usability questionnaires. The GP referral and ICA outcome were compared with the specialist diagnosis obtained at the memory clinic.Participants were given the option to carry out a retest visit where they were again given the chance to take the ICA test either remotely or face-to-face. The primary outcome of the study compared GP referral with specialist diagnosis of mild cognitive impairment (MCI) and dementia. Of those the GP referred to memory clinics, 78% were necessary referrals, with ~22% unnecessary referrals, or patients who should have been referred to other services as they had disorders other than MCI/dementia. In the same population the ICA was able to correctly identify cognitive impairment in ~90% of patients, with approximately 9% of patients being false negatives. From the subset of unnecessary GP referrals, the ICA classified ~72% of those as not having cognitive impairment, suggesting that these unnecessary referrals may not have been made if the ICA was in use. ICA demonstrated a sensitivity of 93% for dementia and 83% for MCI, with a specificity of 80% for both conditions in detecting cognitive impairment. Additionally, the test-retest prediction agreement for the ICA was 87.5%. The results from this study demonstrate the potential of the ICA as a screening tool, which can be used to support accurate referrals from primary care settings, along with the work conducted in memory clinics and in secondary care. The ICA's sensitivity and specificity in detecting cognitive impairment in MCI surpassed the overall standard of care reported in existing literature.

Training Indigenous Community Researchers for Community-Based Participatory Ethnographic Dementia Research: A Second-Generation Model.

Conducting community-based participatory research (CBPR) is a complex endeavor, particularly when training non-academic community members. Though examples of CBPR training programs and protocols have been published, they often address a limited set of concepts and are tailored for university or medical school students. Here, we describe the process of developing an online CBPR training program for American Indian (United States) and Indigenous (Canada) community members to conduct multi-sited ethnographic dementia research. This program is unique in its breadth and depth, as our program covers CBPR theory, methods, practical research, and administrative skills. Significantly, this program centers Indigenous methodology, pedagogy, and processes such as two-eyed seeing, storywork, and decolonization approaches. Key to this training program is a "second-generation" approach which incorporates experiential knowledge from prior community-based researchers and academic partners and is designed to develop CBPR capacity among community-based researchers and partnering communities. In this paper, we detail the experience of the first cohort of learners and subsequent improvement of the training materials. Unique challenges related to the specific research focus (dementia care pathway), population/setting (American Indian and Indigenous communities), and technology (rural digital infrastructure) are also discussed.

Participatory development and implementation of a dementia care pathway with intervention bundles in acute care during the coronavirus pandemic: A process evaluation study.

To explore the implementation of a dementia care pathway in an acute care setting. Dementia care in acute settings is often constrained by contextual factors. We developed an evidence-based care pathway with intervention bundles, and implemented it on two trauma units, with the aim to empower staff and improve quality care. Process evaluation using quantitative and qualitative methods. Pre-implementation, unit staff completed a survey (n = 72) assessing family and dementia care skills and level of evidence-based dementia care. Post-implementation, champions (n = 7) completed the same survey, with additional questions on acceptability, appropriateness and feasibility, and participated in a focus group interview. Data were analysed using descriptive statistics and content analysis guided by the Consolidated Framework for Implementation Research (CFIR). Standards for Reporting Qualitative Research Checklist. Pre-implementation, staff's perceived skills in family and dementia care were moderate overall, with high skills in 'building relationships' and 'sustaining personhood'. Evidence-based interventions were delivered seldom to frequent, with 'individualized care' scoring lowest and 'assessing cognition' scoring highest. Implementation of the care pathway/intervention bundles was overshadowed by the pandemic, and failed due to major organisational- and process-related barriers. Acceptability scored highest and feasibility lowest, with concerns relating to complexity and compatibility of pathways/bundles when introduced into clinical routines. Our study implies that organisational and process factors are the most influential determinants to the implementation of dementia care in acute settings. Future implementation efforts should draw on the evolving evidence within implementation science and dementia care research to ensure effective integration and improvement process. Our study provides important learning around improving care for persons with dementia and their families in hospitals. A family caregiver was involved in the development of the education and training programme.

A comprehensive literature search of digital health technology use in dementia: Digital tools to support dementia caregivers

AbstractBackgroundDementia can negatively impact the well‐being and quality of life of patients and informal caregivers. Digital self‐management tools have the potential to support those living with dementia. The aim of this review was to identify digital tools used in dementia care, investigate how they support users, and highlight pertinent clinical and psychosocial outcomes.MethodSix databases were searched (i.e. CINAHL, EMBASE, MEDLINE, PsycINFO, Web of Science, and the Cochrane Review) using free text and equivalent database‐controlled vocabulary terms.ResultTwenty‐six articles were identified reporting 21 digital tools focused mainly on caregivers ‐ thus caregivers form the focus of this review. The digital tools promoted self‐management and support through five main functions: Supporting psychoeducation and self‐help; improving competency and ability; sustaining and promoting well‐being; encouraging behaviour change and providing motivation; and facilitating contact and communication with healthcare professionals and other users. There was mixed‐to‐limited evidence to support a positive influence of digital tools on mental health, burden, quality of life, and caregiver perceived ability.ConclusionDigital health technology has the potential to support caregivers, however areas such as mental health, burden, and quality of life may be resistant to some digital interventions. It is important to understand issues around accessibility, uptake, and continued use of digital tools and their potential to be integrated within dementia care pathways and routine clinical care.

Understanding dementia care pathways for policy development and service planning in Kenya.

In Kenya, there is lack of evidence on existing dementia care pathways, with minimal or no presentation for dementia-related symptoms in health care settings. Understanding the services available for people with dementia as well as how communities access the services could offer a practical pattern for policy makers to identify strategies that encourage early detection, care and support for people with dementia and their families. To elucidate initial responses of individuals and their families to dementia and challenges encountered in help seeking through care pathways to inform dementia care-related policies and practice. The Strengthening Responses to dementia in Developing Countries (STRiDE) Kenya team adapted case vignettes (brief hypothetical stories meant to elicit responses on how the characters would behave) developed by the entire STRiDE team. A total of 29 stakeholders were then asked to provide feedback on the completed vignettes and summarize a common pathway to dementia care in Kenya while using the proposed case vignettes. We found four initial responses to dementia suspicion in Kenya where individuals:(i) Perceive symptoms as normal part of ageing, (ii) Consult a spiritual or traditional healer, (iii) Visit a private clinic or primary health care facilities, or (iv) No action taken. These were the first points within the care pathways which determined the care trajectory the person with dementia would follow. Identification of dementia care pathways could form a basis for improving the way communities perceive dementia etiology and establish standard pathways to care whilst ensuring that some pathways do not further pose an impediment to care and treatment for dementia.

Dynamics of Interaction among Professionals, Informal Supporters, and Family Caregivers of People with Dementia along the Dementia Care Pathway: A Nationwide Survey in Japan

This study aims to clarify the dynamics of information provision and human interaction to satisfy the needs of family caregivers. A questionnaire survey consisting of items on information received at and after diagnosis, persons and resources consulted, needs, and caregiver-oriented outcomes was conducted. Among the respondents, 2295 individuals who were caring for people with dementia were divided into quartiles by the time after diagnosis, and differences were statistically analyzed. The time after diagnosis in the first to fourth quartiles was 0.73 ± 0.4, 2.52 ± 0.49, 4.89 ± 0.73, and 10.82 ± 3.7 years, respectively. The number of persons consulted by family caregivers increased significantly from the first to the fourth quartiles (p < 0.001). During this time, attributes of professionals and informal supporters changed depending on the quartile. As time progressed, acceptance of the diagnosis increased, but so did its impact on the lives of family caregivers. These findings revealed differences over time in what family caregivers wanted and the dynamics of interactions that filled their needs. Informal supporters accounted for a significant proportion of the total resources. However, many family caregivers thought the information and support were insufficient. Thus, continuous reform of the care pathway is needed.

Multiple Cost Optimisation for Alzheimer's Disease Diagnosis.

Current machine learning techniques for dementia diagnosis often do not take into account real-world practical constraints, which may include, for example, the cost of diagnostic assessment time and financial budgets. In this work, we built on previous cost-sensitive feature selection approaches by generalising to multiple cost types, while taking into consideration that stakeholders attempting to optimise the dementia care pathway might face multiple non-fungible budget constraints. Our new optimisation algorithm involved the searching of cost-weighting hyperparameters while constrained by total budgets. We then provided a proof of concept using both assessment time cost and financial budget cost. We showed that budget constraints could control the feature selection process in an intuitive and practical manner, while adjusting the hyperparameter increased the range of solutions selected by feature selection. We further showed that our budget-constrained cost optimisation framework could be implemented in a user-friendly graphical user interface sandbox tool to encourage non-technical users and stakeholders to adopt and to further explore and audit the model - a humans-in-the-loop approach. Overall, we suggest that setting budget constraints initially and then fine tuning the cost-weighting hyperparameters can be an effective way to perform feature selection where multiple cost constraints exist, which will in turn lead to more realistic optimising and redesigning of dementia diagnostic assessments. Clinical Relevance-By optimising diagnostic accuracy against various costs (e.g. assessment administration time and financial budget) predictive yet practical dementia diagnostic assessments can be redesigned to suit clinical use.

Euthanasie bij dementie middels een voorafgaande wilsverklaring: een reflectie vanuit België en Nederland

Advance directives for euthanasia in dementia: a reflection from Belgium and the Netherlands Concerning the current law on euthanasia in Belgium, it is often suggested to enable euthanasia in patients suffering from (severe) dementia by means of an advance directive, largely triggered by the authority principle of the person who initially requested it. The current manuscript reflects on this proposed law extension: it mainly wants to stress the complexity of the issue. It is concluded that advance directives for euthanasia in dementia are not easy to implement in an optimized dementia care pathway.

The Use of a Computerized Cognitive Assessment to Improve the Efficiency of Primary Care Referrals to Memory Services: Protocol for the Accelerating Dementia Pathway Technologies (ADePT) Study.

BackgroundExisting primary care cognitive assessment tools are crude or time-consuming screening instruments which can only detect cognitive impairment when it is well established. Due to the COVID-19 pandemic, memory services have adapted to the new environment by moving to remote patient assessments to continue meeting service user demand. However, the remote use of cognitive assessments has been variable while there has been scant evaluation of the outcome of such a change in clinical practice. Emerging research in remote memory clinics has highlighted computerized cognitive tests, such as the Integrated Cognitive Assessment (ICA), as prominent candidates for adoption in clinical practice both during the pandemic and for post-COVID-19 implementation as part of health care innovation.ObjectiveThe aim of the Accelerating Dementia Pathway Technologies (ADePT) study is to develop a real-world evidence basis to support the adoption of ICA as an inexpensive screening tool for the detection of cognitive impairment to improve the efficiency of the dementia care pathway.MethodsPatients who have been referred to a memory clinic by a general practitioner (GP) are recruited. Participants complete the ICA either at home or in the clinic along with medical history and usability questionnaires. The GP referral and ICA outcome are compared with the specialist diagnosis obtained at the memory clinic. The clinical outcomes as well as National Health Service reference costing data will be used to assess the potential health and economic benefits of the use of the ICA in the dementia diagnosis pathway.ResultsThe ADePT study was funded in January 2020 by Innovate UK (Project Number 105837). As of September 2021, 86 participants have been recruited in the study, with 23 participants also completing a retest visit. Initially, the study was designed for in-person visits at the memory clinic; however, in light of the COVID-19 pandemic, the study was amended to allow remote as well as face-to-face visits. The study was also expanded from a single site to 4 sites in the United Kingdom. We expect results to be published by the second quarter of 2022.ConclusionsThe ADePT study aims to improve the efficiency of the dementia care pathway at its very beginning and supports systems integration at the intersection between primary and secondary care. The introduction of a standardized, self-administered, digital assessment tool for the timely detection of neurodegeneration as part of a decision support system that can signpost accordingly can reduce unnecessary referrals, service backlog, and assessment variability.Trial RegistrationISRCTN 16596456; https://www.isrctn.com/ISRCTN16596456International Registered Report Identifier (IRRID)DERR1-10.2196/34475

Designing Dementia Care Pathways to Transform Non Dementia-Friendly Hospitals: Scoping Review.

People with dementia (PwD) occupy around 25% of the hospital beds. Once PwD are admitted to hospitals, their cognitive impairment is not considered in most of the cases. Thus, it causes an impact on the development of the disease becoming a stressful situation as care plans are not adapted to PwD. The aim of this study was to explore the published core elements when designing a dementia care pathway for hospital settings. A scoping review was conducted to provide an overview of the available research evidence and identify the knowledge gaps regarding the topic. This review highlights person-centered care, compassionate care and end-of-life process as some of the key elements that should integrate the framework when designing a dementia care pathway. Architectonical outdoor and indoor hospital elements have also been found to be considered when adapting the healthcare context to PwD. Findings provide information about the key points to focus on to successfully design dementia interventions in hospital environments within available resources, mostly in those contexts in which national dementia plans are in its infancy. Hospitals should transform their patients’ routes and processes considering the increasing demographic changes of people with cognitive impairment.

A Qualitative Study on Formal and Informal Carers' Perceptions of Dementia Care Provision and Management in Malaysia.

Background: The number of people living with dementia worldwide is increasing, particularly in low- and middle-income countries (LMICs) where little is known about existing post-diagnostic care and support. This study aimed to better understand healthcare provision for people living with dementia in Malaysia, and to identify priorities for providing timely, quality, and accessible care and support to all.Methods: This is a qualitative interview study on care providers and facilitators (health and community care professionals, paid carers, traditional medicine practitioners, faith healers, community leaders, non-governmental organisations). A topic guide, piloted in Malaysia and peer reviewed by all LMIC partners, elicited the understanding of dementia and dementia care and barriers and facilitators to care for people living with dementia and carers, and perceptions of key priorities for developing efficient, feasible, and sustainable dementia care pathways. Verbatim transcription of audio-recorded interviews was followed by iterative, thematic data analysis.Results: Twenty interviews were conducted (11 healthcare professionals, 4 traditional medicine practitioners, and 5 social support providers). The findings indicate that dementia care and support services exist in Malaysia, but that they are not fully utilised because of variations in infrastructure and facilities across the country. Despite a locally recognised pathway of care being available in an urban area, people with dementia still present to the healthcare system with advanced disease. The interviewees linked this to a public perception that symptoms of dementia, in particular, are normal sequelae of ageing. Earlier detection of dementia is commonly opportunistic when patients present to GPs, government clinic staff, and general physicians with other ailments. Dementia may only be identified by practitioners who have some specialist interest or expertise in it. Workforce factors that hindered early identification and management of dementia included lack of specialists, overburdened clinics, and limited knowledge of dementia and training in guideline use. Post-diagnostic social care was reported to be largely the domain of families, but additional community-based support was reported to be available in some areas. Raising awareness for both the public and medical professionals, prevention, and more support from the government are seen as key priorities to improve dementia management.Conclusions: This qualitative study provides novel insight into the availability, delivery, and use of post-diagnostic care and support in Malaysia from the perspective of care providers. The respondents in this study perceived that while there was a provision for dementia care in the hospital and community settings, the different care sectors are largely unaware of the services each provides. Future work should explore how care provision across different service sectors and providers can be supported to better facilitate patient access and referral between primary, secondary, and social care. The importance of supporting families to understand dementia and its progression, and strategies to help them care for relatives was emphasised. There is also a need for broad workforce training and development, at both the postgraduate and undergraduate levels, as well as improved general awareness in the community to encourage earlier help-seeking for symptoms of dementia. This will enable the use of preventive strategies and access to specialist services to optimise care and quality of life for people living with dementia in Malaysia.

A national dementia care pathway explored and compared

AbstractBackgroundA national, systematic diagnosis and care pathway has the potential to alleviate pressing challenges experienced by individuals with dementia, their carers, and healthcare providers. International exemplars were sought to compare/contrast dementia care with current practice in the United States (US). Specifically, the 2013 New Zealand (NZ) Framework for Dementia Care was explored. The aim was to better understand this systematic, primary care‐led, home and community‐focused dementia management approach from the perspective of those delivering care. To better understand its potential for adoption, US providers were similarly studied.MethodMaximum variation purposive sampling was used in this qualitative descriptive study of 28 participants (18 New Zealand, 10 United States) including providers, case managers/social workers and government officials. Following review and approval by the IRB, investigator‐developed semi‐structured interviews were used, with recruitment of participants continuing until data saturation was reached. Data were then explored for themes using qualitative content analysis, the preferred approach for qualitative descriptive design, and supported by HyperResearch. Throughout the study, qualitative research quality enhancement strategies follow the classic approach of Guba and Lincoln (1994).ResultsNational standards in NZ provide a progressive pathway grounded in early primary care diagnoses and adaptable teams that foster caregiver support to decrease their burden (See Figure 1). The approach also ensures streamlined access to specialists by integrating dementia care in primary care. This is in contrast to the US, where a reactive rather than proactive approach requires providers to navigate unpredictability as they strive to weave together insufficient, inadequate, inconsistent, and inequitable resources to cobble a family’s foundation for an uncertain future.ConclusionCompared to the US where only 2.12% of the Medicare spend is on primary care (Bannow, 2019), NZ is grounded in a strong primary care foundation as are many of the world’s most highly functioning health care systems (Schneider, Sarnak, Squires, Shah &amp; Doty, 2017). Individual states exploring total cost care models, do have the capacity to redesign primary care for enhanced capacity for dementia management both within practice and community settings and should take action. Further implications for translating promising practices to the US are detailed.

Use of routine and cohort data globally in exploring dementia care pathways and inequalities: A systematic review

AbstractObjectivesThe aim of this systematic review was to evaluate studies which employed routine and cohort data sets to understand inequalities in dementia care pathways.MethodsWe identified 27 research papers using routine data sets to investigate inequalities in dementia care pathways through electronic and grey literature searches. Papers were independently assessed by two reviewers for inclusion based on defined criteria. Included papers were quality rated using the National Institutes of Health Quality Assessment Tool for Observational Cohort and Cross‐Sectional Studies. Data was extracted based on stage(s) in dementia care pathway and socio‐economic factors investigated.ResultsInequalities were noted across dementia care pathways. Socio‐economic and protected characteristics were shown to impact the likelihood of people with dementia moving into institutional nursing care, the quality and consistency of their treatment, need for emergency and urgent healthcare, the rate of illness progression and their long‐term survival. Research was often disparate ignoring the multiple parts of the dementia care pathway, or the impact of specific factors across multiple stages.ConclusionsOur study highlights issues in dementia care pathways based on socio‐economic or protected characteristics. Equitable service provision, more culturally appropriate services, improved health literacy and increased provision for both early diagnosis and care at home can help narrow the gap in dementia care inequalities. There is greater need for research investigating dementia care pathways as something greater than the sum of its parts; exploring the influence of socio‐economic factors from a person's entrance into the system and throughout.

Supporting people with an intellectual disability and dementia: A constructivist grounded theory study exploring care providers' views and experiences in the UK.

There is a need to better understand the experiences and support needs of paid and family carers of people with an intellectual disability and dementia, and the role of Intellectual Disability Dementia Care Pathways (IDDCPs). This study explored the experiences of carers, and IDDCPs and other support structures within those experiences. A constructivist grounded theory methodology was implemented. Data were obtained through 23 semi-structured interviews with two family carers, eight paid carers and eight healthcare professionals. The study's theory produced five interrelated categories: Impact of Dementia, Challenging the Diagnosis Process, Continuum of Support, Continuity and Continuum of Understanding. Findings have demonstrated the importance of planning and supporting carers' holistic needs; the role of an IDDCP in the post-diagnostic support (or lack of it) for carers; and the importance of a timely diagnosis of dementia. Recommendations for practice are offered.