collective case study dementia

• DOI: 10.1186/s12877-019-1186-z
• Corpus ID: 195583943

A collective case study of the features of impactful dementia training for care home staff

• C. Surr , C. Sass , +4 authors J. Oyebode
• Published in BMC Geriatrics 25 June 2019
• Medicine, Education

14 Citations

Capacity building for dementia care in community care services: a mixed methods approach, the barriers and facilitators to implementing dementia education and training in health and social care services: a mixed-methods study, pain interventions for people with dementia: a quasi-experimental study, the impact of a training intervention on nursing care for people with dementia in long-term care: a quasi-experimental study, dementia care class increases confidence of informal caregivers in community-based dementia care, ‘this adds another perspective’: qualitative descriptive study evaluating simulation-based training for health care assistants, to enhance the quality of care in nursing homes, dementia care class meningkatkan sikap caregiver informal dalam perawatan demensia berbasis masyarakat, nursing assistants and resident satisfaction in long-term care: a systematic review., focus group findings to support the preliminary development of the augmented reality education experience (aredux), implementing montessori approaches after training: a mixed methods study to examine staff understanding and movement toward action., 53 references, components of impactful dementia training for general hospital staff: a collective case study, effective dementia education and training for the health and social care workforce: a systematic review of the literature, communication skills training in dementia care: a systematic review of effectiveness, training content, and didactic methods in different care settings, aged care staff’s experiences of ‘better oral health in residential care training’: a qualitative study, a systematic review of staff training interventions to reduce the behavioural and psychological symptoms of dementia, nursing home staff training in dementia care: a systematic review of evaluated programs, implementing a psycho‐educational intervention for care assistants working with people with dementia in aged‐care facilities: facilitators and barriers, fits into practice: translating research into practice in reducing the use of anti-psychotic medication for people with dementia living in care homes, the care of older people with dementia in acute hospitals., implementing person-centered care in residential dementia care, related papers.

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Components of impactful dementia training for general hospital staff: a collective case study

Aging & Mental Health

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Introducing the bio-psycho-social-physical model of dementia through a collective case study design

• Publisher DOI

Keady J, Jones L, Ward R, Koch S, Swarbrick C, Hellstrom I, Davies-Quarrell V & Williams S (2013) Introducing the bio-psycho-social-physical model of dementia through a collective case study design. Journal of Clinical Nursing , 22 (19-20), pp. 2768-2777. https://doi.org/10.1111/j.1365-2702.2012.04292.x

Abstract Aims and objectives: To provide evidence for the development of a physical domain attached to the well-known bio-psycho-social model of dementia. The objectives were to develop a set of international case studies that followed a trajectory approach, from prevention to end-of-life care. Background: In the UK the bio-psycho-social model has informed the shape of the National Institute for Health and Clinical Excellence and the Social Care Institute for Excellence ‘dementia' guideline. However, limited attention has been paid to outlining and describing a physical domain of dementia, a discrepancy that informed the rationale for this study. Design: A collective case study design was used to address the research aim and objectives. Methods: Case studies from along the trajectory of dementia were provided by an international team of contributors from an inter-disciplinary background comprising nursing (general and mental health), social work and social science. Results: The team's synthesis and analysis of the six case studies generated five repeating themes with each theme becoming components of a ‘physical' domain of dementia. The five identified physical components were: (1) physical well-being, (2) physical health and examination, (3) physical care, (4) physical treatment and (5) physical environment. Conclusions: The development of a bio-psycho-social-physical model of dementia presents a holistic and culturally sensitive approach to understanding the experience of living with dementia, and to providing care and support in a variety of situations and contexts. Relevance to clinical practice: The physical domain of dementia has particular relevance to nursing and nursing practice, such as providing physical care at the end-of-life. The interplay between the biological-psychological-social-physical domains of dementia and the trajectory of dementia could form the basis of clinical decision-making and practice.

Keywords bio-psycho-social model; collective case study; dementia; physical; teaming

Journal Journal of Clinical Nursing: Volume 22, Issue 19-20

Professor Richard Ward

Professor of Dementia, Ageing, Community, Dementia and Ageing

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A collective case study of the features of impactful dementia training for care home staff

https://doi.org/10.1186/s12877-019-1186-z

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BackgroundUp to 80% of care home residents have dementia. Ensuring this workforce is appropriately trained is of international concern. Research indicates variable impact of training on a range of resident and staff outcomes. Little is still known about the most effective approaches to the design, delivery and implementation of dementia training. This study aimed to investigate the features and contextual factors associated with an effective approach to care home staff training on dementia.MethodsAn embedded, collective case study was undertaken in three care home provider organisations who had responded to a national training audit. Data collected included individual or small group interviews with training leads, facilitators, staff attending training, managers, residents and their relatives. Observations of care practice were undertaken using Dementia Care Mapping. Training delivery was observed and training materials audited. A within case analysis of each site, followed by cross case analysis using convergence coding was undertaken.ResultsAll sites provided bespoke, tailored training, delivered largely using face-to-face, interactive methods, which staff and managers indicated were valuable and effective. Self-study booklets and on-line learning where were used, were poorly completed and disliked by staff. Training was said to improve empathy, knowledge about the lived experience of dementia and the importance of considering and meeting individual needs. Opportunities to continually reflect on learning and support to implement training in practice were valued and felt to be an essential component of good training. Practice developments as a result of training included improved communication, increased activity, less task-focussed care and increased resident well-being. However, observations indicated positive well-being and engagement was not a consistent experience across all residents in all sites. Barriers to training attendance and implementation were staff time, lack of dedicated training space and challenges in gaining feedback on training and its impact. Facilitators included a supportive organisational ethos and skilled training facilitation.ConclusionsEffective training is tailored to learners’, delivered face-to-face by an experienced facilitator, is interactive and is embedded within a supportive organisational culture/ethos. Further research is needed on the practical aspects of sustainable and impactful dementia training delivery and implementation in care home settings.

The organisations recruited varied in terms of size and number of units participating in the study (Table 2), all were within provider organisations who owned a small number of care homes (≤7) and were located across England and Scotland

Despite care homes being one of the most researched settings in terms of dementia training and its impact, relatively little is still known about how the emergent design and delivery features of effective training can be implemented practically

More research is still needed on the practical aspects of sustainable and impactful dementia training delivery and implementation in care home settings

Up to 80% of care home residents have dementia. Ensuring this workforce is appropriately trained is of international concern. Research indicates variable impact of training on a range of resident and staff outcomes. This study aimed to investigate the features and contextual factors associated with an effective approach to care home staff training on dementia. A number of systematic reviews have examined research on the effectiveness of dementia training for the care home workforce in relation to a range of outcomes including the general benefits of training [12], impact on resident functional ability and quality of life [13], improving staff communication skills [14] and for supporting complex resident behaviours [15, 16]. There is limited available evidence on the most effective approaches to the design, delivery and implementation of impactful dementia training in care home settings

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BMC Geriatrics (Jun 2019)

A collective case study of the features of impactful dementia training for care home staff

• Claire A. Surr,
• Michelle Drury,
• Natasha Burnley,
• Alison Dennison,
• Sarah Burden,
• Jan Oyebode

Affiliations

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Abstract Background Up to 80% of care home residents have dementia. Ensuring this workforce is appropriately trained is of international concern. Research indicates variable impact of training on a range of resident and staff outcomes. Little is still known about the most effective approaches to the design, delivery and implementation of dementia training. This study aimed to investigate the features and contextual factors associated with an effective approach to care home staff training on dementia. Methods An embedded, collective case study was undertaken in three care home provider organisations who had responded to a national training audit. Data collected included individual or small group interviews with training leads, facilitators, staff attending training, managers, residents and their relatives. Observations of care practice were undertaken using Dementia Care Mapping. Training delivery was observed and training materials audited. A within case analysis of each site, followed by cross case analysis using convergence coding was undertaken. Results All sites provided bespoke, tailored training, delivered largely using face-to-face, interactive methods, which staff and managers indicated were valuable and effective. Self-study booklets and on-line learning where were used, were poorly completed and disliked by staff. Training was said to improve empathy, knowledge about the lived experience of dementia and the importance of considering and meeting individual needs. Opportunities to continually reflect on learning and support to implement training in practice were valued and felt to be an essential component of good training. Practice developments as a result of training included improved communication, increased activity, less task-focussed care and increased resident well-being. However, observations indicated positive well-being and engagement was not a consistent experience across all residents in all sites. Barriers to training attendance and implementation were staff time, lack of dedicated training space and challenges in gaining feedback on training and its impact. Facilitators included a supportive organisational ethos and skilled training facilitation. Conclusions Effective training is tailored to learners’, delivered face-to-face by an experienced facilitator, is interactive and is embedded within a supportive organisational culture/ethos. Further research is needed on the practical aspects of sustainable and impactful dementia training delivery and implementation in care home settings.

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The Integrated Atlas of Dementia Care in the Australian Capital Territory: A Collective Case Study of Local Service Provision

Hossein tabatabaei-jafari.

1 Mental Health Policy Unit, Health Research Institute, University of Canberra, Canberra, ACT, Australia

Mary Anne Furst

Nasser bagheri, nathan m. d’cunha.

2 School of Rehabilitation and Exercise Science, Faculty of Health, University of Canberra, Canberra, ACT, Australia

3 School of Nursing, Midwifery and Public Health, Faculty of Health, University of Canberra, Canberra, ACT, Australia

Perminder S. Sachdev

4 Centre for Healthy Brain Ageing, Discipline of Psychiatry and Mental Health, University of New South Wales, Sydney, NSW, Australia

Luis Salvador-Carulla

5 Menzies Centre for Health Policy, School of Public Health, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia

Associated Data

Supplemental material, sj-docx-1-his-10.1177_11786329241232254 for The Integrated Atlas of Dementia Care in the Australian Capital Territory: A Collective Case Study of Local Service Provision by Hossein Tabatabaei-Jafari, Mary Anne Furst, Nasser Bagheri, Nathan M. D’Cunha, Kasia Bail, Perminder S. Sachdev and Luis Salvador-Carulla in Health Services Insights

Supplemental material, sj-docx-2-his-10.1177_11786329241232254 for The Integrated Atlas of Dementia Care in the Australian Capital Territory: A Collective Case Study of Local Service Provision by Hossein Tabatabaei-Jafari, Mary Anne Furst, Nasser Bagheri, Nathan M. D’Cunha, Kasia Bail, Perminder S. Sachdev and Luis Salvador-Carulla in Health Services Insights

Background:

This study evaluates the dementia care system in a local area and aimed to include all specialised services designed to provide health and social services to people with dementia or age-related cognitive impairment, as well as general services with a high or very high proportion of clients with dementia.

The study used an internationally standardised service classification instrument called Description and Evaluation of Services and DirectoriEs for Long Term Care (DESDE-LTC) to identify and describe all services providing care to people with dementia in the Australian Capital Territory (ACT).

A total of 47 service providers were eligible for inclusion. Basic information about the services was collected from their websites, and further information was obtained through interviews with the service providers. Of the 107 services offered by the 47 eligible providers, 27% (n = 29) were specialised services and 73% (n = 78) were general services. Most of the services were residential or outpatient, with a target population mostly of people aged 65 or older, and 50 years or older in the case of Aboriginal and Torres Strait Islander Australians. There were government supports available for most types of care through various programmes.

Conclusions:

Dementia care in the ACT relies heavily on general services. More widespread use of standardised methods of service classification in dementia will facilitate comparison with other local areas, allow for monitoring of changes over time, permit comparison with services provided for other health conditions and support evidence-informed local planning.

Introduction

Dementia is a significant health and aged care concern, with a substantial impact on the quality of life not just of those with dementia, but also their families and friends. Consequently, care providers play a crucial role in supporting patients and carers as the condition progresses. These services include a whole array of community-based settings, professionals and workers for individuals living at home, residential services for those requiring permanent care or short-term respite stays, and hospital services for those who need acute or subacute care. The types of services and professionals increases every year and now include short-term support worker, ongoing support worker, centre-based support, primary care management, specialist dementia clinics or home hospital care. 1 , 2

In Australia, the expenses directly linked to the diagnosis, treatment, and care of individuals with dementia amounted to nearly $3.0 billion in health and aged care spending during 2018 to 19. Residential aged care services constituted the highest proportion of expenditure, accounting for 56% or $1.7 billion, trailed by community-based aged care services at 20% or $596 million, and hospital services at 13% or $383 million. 3 It’s notable that about 30% of individuals diagnosed with dementia reside in care accommodation. 3

Understanding service availability, capacity, gap analysis and analysis of unmet needs are crucial for supporting evidence-informed planning, prioritisation, and resource allocation/ expenditure within healthcare systems. Several international organisations have called for an integrated model of healthcare: one which includes specific interventions for different disorders and which also includes a complex array of service provision, such as homecare, community, hospital, and other residential settings. 4 The World Health Organization’s One Health model emphasises a holistic and collaborative approach to programmes, policies, legislation, and research; and the United Nations Decade of Healthy Ageing 2021-2030, and the WHO Framework for countries to achieve an integrated continuum of long-term care recommended that service provision should be person centred, multidisciplinary, accessible and affordable and ‘integrated and coordinated at all levels, from policymaking to workforce training, service delivery, and information systems, across public and private sectors, and health and social care systems’. 5 , 6 In theory, these frameworks and recommendations should integrate the healthcare and social elements of long-term care provision, particularly for people with dementia, to boost efficient and equitable care provision. 7 However, this goal is confronted with significant challenges. Whilst there are international standards for the evaluation of care utilisation and quality (eg, InterRAI 8 ), the information on the actual care provision (services and settings) is mostly limited to narratives of good care examples and have often failed to provide standard comparisons across jurisdictions and over time useful for health planning. 6 , 9 , 10 The Organization for Economic Co-operation and Development’s (OECD) report on international comparison of dementia care concluded that settings for dementia care come from a wide variety of sources, including social care as well as specific and non-specific services for dementia and the analysis of its care coordination is an issue that ‘is not an easy one to resolve’. 11 Differences in organisational structure and services as the differences in service provision for different target groups such as aged population, persons with mild cognitive impairment, persons after diagnosis of dementia and persons with Alzheimer disease or other specific conditions or comorbidities contribute to this challenge.

In addition, standard service assessment is confronted with serious methodological limitations in dementia care. Currently available classification systems of health providers, such as the System of Health Accounts (SHA 2.0), do not provide an ontology-based and comprehensive picture of local care provision. 12 This classification excludes sectors such as social services and demonstrates ambiguous terminology when classifying care providers (organisations and as professionals), care functions, and care interventions. Additionally, the routine practice of translating top-down national indicators to local evaluation and planning could be highly misleading due to the ‘ecological fallacy’, (ie, incorrect assumptions about a local area based on aggregate data on services, beds, and professionals relating to the whole country). 13 Hence, a standard assessment and coding system and a common method of data gathering is urgently needed for the harmonisation of service data, that could inform equitable allocation of care resources, programmes, and treatment across different jurisdictions and countries. 14 In addition, all health system approaches require the broader perspective of health care ecosystem analysis, which also takes into account the local social determinants of care, the natural and build environment, and the spatial–temporal variation across regions in the patterns of care and related impacts. 15 , 16 Understanding the complex intersection of contextual factors is fundamental to implementation, provision, modelling, and improvement of services. 17

These issues in the analysis of service provision in local systems can be addressed using Integrated Atlases of Health based on an innovative service classification instrument called the Description and Evaluation of Services and DirectoriEs for Long Term Care (DESDE-LTC). 18 , 19 The integrated Atlases of Health collect detailed local information from local service managers in a ‘bottom-up’ approach, and use Geographic Information Systems (GIS) to map the local socioeconomic and demographic context and geolocate service distribution. Following the approach previously used to map local provision in mental health, 14 , 20 multiple sclerosis, 21 and chronic care. 22 An Integrated Atlas of Dementia Services could provide essential information on service availability, care capacity, social and demographic characteristics, and health-related needs, allowing policy planners and decision-makers to assess the strengths and gaps in the healthcare system and make informed decisions. 14

This study aims to utilise DESDE-LTC to fill the knowledge gap by demonstrating the practicality of a standardised approach to assess the service delivery system for dementia in a specific region: the Australian Capital Territory (ACT). Eventually, this approach could be implemented globally, as already done for mental healthcare. 23

This is a collective case study of the typology and characteristics of care for dementia in the ACT region. Collective case studies in healthcare analyse multiple individual cases or instances that share common characteristics or themes (in this case care organisations, beds and places and professionals providing dementia care in the ACT region). These entities are examined collectively to gain a comprehensive understanding of the broader issue at hand, exploring similarities, differences, and patterns of care provision to gain insights that can inform healthcare policies and quality improvement. 24 , 25 This type of study design is especially useful in the analysis of complex systems in specific context conditions. 26

The ACT, a federal district of Australia covering an area of 2300 km 2 , had an estimated resident population of 445 110 individuals as of the 2022 census. Canberra, the territory’s sole city and the national capital, is home to roughly 90% of the ACT population. Of this population, approximately 30% are aged 50 years or older, and 14% are 65 years or older, resulting in an ageing index of approximately 66. 27 Furthermore, about 14% of those aged 65 and above have a profound or severe disability and reside in the community. 27 In the study area, there are about 48 aged care residential facilities (beds) per 1000 people aged 65 and over. 28

Inclusion criteria

The analysis included all services that offer direct care or support to individuals with dementia within the ACT boundaries. This includes specialised services that only provide care to people with dementia, and generalised aged care services that provide general services to older people including people with dementia. However, only those general services where more than 50% of clients (here termed ‘general-50’) and those where between 20% and 50% (here termed ‘general-20’) of clients are people with dementia were included in this study. It’s essential to clarify that the differentiation between specialised and ‘general-50’ and ‘general-20’ services is primarily based on the fact that specialised services exclusively serve individuals living with dementia. For example, there are residential facilities (nursing homes) that exclusively provide care to people with dementia, whereas there are others that cater to both clients with and without dementia. The former is categorised as specialised, and the latter as general-50 or 20, depending on the ratio of people with dementia. Nevertheless, general services with less than 20% of clients affected by dementia are not included. Despite contributing to the overall service capacity for individuals with dementia, the distinct nature of their services and the expertise of their team members warrant a separate evaluation, akin to the general atlas of social and health services.

This consideration encompassed all services, whether publicly or privately funded services. Additionally, services providing information and coordination to aid people with dementia or their caregivers to manage their illness were included, as long as they were stable in both temporal and administrative terms.

The DESDE-LTC was the tool utilised to gather and evaluate the data. It is an internationally standardised instrument that has been validated in 6 different European countries from both the Western and Eastern regions. 19 The purpose of this tool is to describe and classify services across different sectors, enabling valid comparisons to be made between local areas and countries, despite differences in levels of care, units of analysis, and terminology. 23 , 29 , 30 It uses a conceptual model based on a healthcare ecosystems research approach that takes a whole systems approach to healthcare, aiming to facilitate analysis of the complex environment and context of health systems and the translation of this knowledge into policy and practice. 18

The DESDE-LTC categorises and codes services that provide care or support based on 4 different axes, including target population, sector of care, the main type of care, and workforce. It provides a taxonomy of care types based on various criteria such as service acuity, mobility, availability to the service user, and whether it is health-related or not. This allows an accurate and meaningful comparison to be made with other regions. Each team providing care within an organisation is identified as a basic stable service team, and the main type of care (MTC) delivered by each service team is described according to 6 main branches of the taxonomy: (1) residential care, (2) day care, (3) outpatient care, (4) accessibility of care, (5) guidance with 2 sub-branches of information and evaluation, and (6) self-help and volunteer care. This standardised approach provides a highly granular and multiaxial final code that describes the care provided by a service team, and allows for an accurate comparison with other regions. For more details, refer to Appendix S1, and the eDESDE-LTC website ( http://www.edesdeproject.eu ).

Data collection

The following steps were taken for data collection:

• Eligible services were identified through an initial search that involved scanning online, telephone and official directories for relevant services. Consultation was also made with experts in the field.
• Information necessary for the description and classification of services, such as location, administration, temporal stability, governance, and financing mechanisms, was manually extracted from the webpages of identified service providers.
• Relevant organisations were contacted directly to arrange interviews with their representatives to obtain details of services provided to people living with dementia.
• Representatives from each identified organisation were interviewed using the DESDE-LTC service inventory questionnaire (Appendix S1) to collect data.

Service coding and analysis

Services identified through the above processes that met the inclusion criteria were given a DESDE-LTC code. Services which were eligible but not interviewed for any reason have been coded based on publicly available information on their website and characteristics in comparison to similar services in the same area. The analysis involved describing the number of service teams and their MTC, which were then evaluated based on their availability per 100 000 adult population in the study area. To display the distribution of the different MTCs and to show the combination of service types (ie, pattern of care) in the area, radar plots were used. Each point on the 24 radii of a radar plot represents the number of a particular MTC per 100 000 adult population in the study area.

Ethics approval for this study was granted by an institution Health Human Research Ethics Committee.

General overview of MTC

A total of 71 service providers were initially identified as potential candidates for the study. However, 24 of them were excluded as fewer than 20% of their clients had dementia or age-related cognitive impairment based on information gathered from their websites or from direct communication with them. Therefore, there were 47 eligible service providers included in this study.

For additional information, service providers were contacted to arrange an online or in-person interview (conducted from December 2021 to January 2023). However, reaching out to some of services providers for interview were not successful due to the strain on the aged care workforce related to COVID-19. Therefore, the coding of these services was based solely on the information available publicly on their websites. A total of 107 services were provided by 107 stable service teams from the included 47 service providers. These teams delivered 118 MTCs. Twenty-eight different MTC codes were applied across these 118 main types of care ( Figure 1 ). Of the 107 services, 62 services were coded based on face-to-face or online interviews and 45 services coded based on the information on their websites. Of the organisations not interviewed, 3 were not contactable, 2 did not agree to an interview, and the rest did not proceed with the interview request. Only 24 of the 107 services reported information about workforce capacity, making it impossible to provide an analysis of the workforce capacity of the dementia care system in the ACT ( Supplemental Tables 1–3 ).

Summary of services providing dementia care in the Australian Capital Territory region 2022.

Specialised versus general services

Overall, the contribution of general aged care services was higher than specialised care services in care provision for people with dementia/age-related cognitive impairment. However, in some categories of care, such as health-related day care services, self-help and volunteer care, and accessibility to care, there was a lack of services in both specialised and general aged care services ( Table 1 ).

The number of main types of care (and beds for residential cares) in specialised and general services provided to people with dementia in ACT across different categories of care based on DESDE classification.

General-50; general services that more than 50% of their clients are people with dementia, General-20; general services that more than 20% up to 50% of their clients are people with dementia.

A total of 29 specialised service teams from 16 service providers offered 30 MTCs (across 13 different types of care) for individuals with dementia ( Supplemental Table 1 ). The number of general services was higher than that of specialised services, with 27 general-50 service teams from 17 service providers offering 31 main types of care ( Supplemental Table 2 ), and 51 general-20 service teams from 35 service providers offering 56 main types of care ( Supplemental Table 3 ). Figure 2 shows the location of the specialised (A) and general (B) services. As the figure indicates, the majority of services are situated in the southern part of the city. Specifically, access to specialised non-residential care is significantly limited in the northern part of the city.

The of services providing dementia care in the Australian Capital Territory region 2022: (A) specialised services, (B) general services.

In the category of specialised care, residential care was the most common type of care, providing 18 of the 30 main types of care, followed by outpatient care, which had 7 types of care ( Table 1 , Supplemental Table 1 ). Day care, accessibility to care, information care, and evaluation each had 1 or 2 services, and there were no specialised self-help or volunteer services available.

In the category of general-50 services, in which at least 50% of clients had dementia or age-related cognitive problems, residential and outpatient care were also the most common types of care, providing 15 and 8 of the 32 types of care, respectively ( Table 1 , Supplemental Table 2 ). Evaluation services were more prevalent in general than specialised services, with 5 of the 32 general-50 MTCs dedicated to evaluation. Three day-care services were available, but there were no accessibility to care, information services, or self-help and volunteer care services.

The diversity of types of care available (16 different types of care) was greater in general-20 services (those services supporting between 20% and 50% of clients with dementia or age-related cognitive problems) than that in general-50 services (11 different types of care). Outpatient care was the most common type of care, providing 26 of the 55 available types of care, followed by residential care, with 21 types of care. Day care, accessibility to care, and information services were also available, with 4, 3, and 2 services, respectively, but there were no evaluation or self-help and volunteer services available in this category ( Table 1 , Supplemental Table 3 ).

To illustrate the pattern of service types offered in the region, a radar tool was used to create a visual pattern of care. Figure 3 compared the patterns of specialised and general care in terms of the number of MTCs per 100 000 of the population in the ACT region in 2022. The brown line represents the pattern of specialised services, the blue line represents general-50 services, and the grey line represents general-20 services. The figure shows that the patterns of service types were similar across specialised and general services, but the capacity of services per 100 000 population was higher in general-20 services than in general-50 and specialised services for most types of care. Community residential services (ie, nursing homes) were the dominant service in all 3 categories.

Availability of specialised dementia services (brown) and general-50 services (blue) and general-20 services (grey) MTCs per 100 000 adult population.

Capacity and the gap in the system

To identify the gap in dementia services, a content analysis 31 of the views and perceptions of 29 participants was conducted (to be reported separately). Briefly, participants identified several gaps in dementia services in the ACT region: a lack of dementia-specific services, poor quality of existing dementia care due to inadequate staff training, insufficient funding for dementia services, and poor public awareness of dementia leading to stigma and reluctance to access services.

To our knowledge this is the first analysis of the regional case provision for dementia following a whole system approach and a validated coding tool. The collective case study approach allows in-depth, multi-faceted explorations of complex issues in their real-life settings. The value of the case study approach is well recognised in the fields of business, law and policy, but somewhat less so in health services research. This study aimed to provide a standardised systematic description of the availability, capacity, and diversity of dementia care services within a specified local area, the ACT, with a perspective of beginning a global process. The study encompassed both specialised health and social care, as well as general services that support a considerable number of clients with dementia or age-related cognitive decline. The findings revealed that specialised services are limited compared with general services. However, the diversity of types of care available is only slightly less in specialised than in general services.

Only a quarter of the available services for people with dementia were provided by specialised services. The remaining care was furnished by general services not tailored specifically to dementia care even though sometimes up to 80% of their clients are living with cognitive difficulties. Moreover, only a limited number of specialised services offered tailored care to individuals with dementia, considering the varying degrees of cognitive challenges and the severity of the condition. This is significant as people experiencing dementia demonstrate a range of cognitive difficulties, varying in severity, which directly influences the type and extent of care needed. It’s imperative for healthcare systems to prioritise care that meets the diverse needs of individuals with dementia, aligning with the severity of their conditions.

Special training is necessary when working with people who live with dementia. 32 , 33 Training standards should be tailored to the needs of the consumer, worker, and regions. 34 Despite this, even specialised services may lack staff trained to care for people with dementia. These services are designed to cater to people with special needs, but their staff may not be specifically trained to provide dementia care. They are mainly designed to provide a suitable environment rather than specialised staff. However, this does not necessarily imply that the staff providing care are unqualified, and, in fact, some may be overqualified for their positions 35 For instance, a registered nurse may serve as a coordinator in an accessibility to care service, a role that may not require their level of expertise. 36 Unfortunately, only a small proportion of available services provided information about their workforce capacity, leading to an incomplete and imprecise picture of the entire system.

Dementia is a chronic condition, the provision of care for which requires an integrated, person-centred approach, as advised by the World Health Organization. 6 To achieve this, greater multidisciplinary involvement and a shift towards community-based services is necessary, as recognised in the Australian healthcare system. 1 , 37 Indeed, the majority (about 75%) of people with dementia live in the community instead of moving to residential aged care. They mainly rely on informal care provided by their family members or friends to be able to remain living at home. 38 , 39 The present study shows the availability of a relatively diverse range of services for people living with dementia, including community services. Additionally, there is a relatively similar pattern of care in both specialised and general services. Residential care, mainly in nursing homes, is the most prevalent, followed by outpatient care, including home care. Although day care, information and evaluation care, and access to care services are available, the availability of day care is limited compared to residential and outpatient care. When compared to mental health services for older adults and for people aged 18 years and above, dementia services demonstrate greater variation in the type of services provided. 20 , 40 There are services available in 6 of the 7 categories of care, (although limited in some categories) for people living with dementia, while mental health services for older people and adults with mental health issues are limited to hospital and outpatient care.

This variation in service provision may be attributed to the superior financial support of the aged care system compared to the mental health system in Australia. Individuals with dementia receive government-subsidised support via the Aged Care System for both residential and community services. The Australian National Aged Care Classification (AN-ACC) provides a general aged care home subsidy for all aged care residents, and the Specialist Dementia Care Program (SDCP) caters to individuals with severe dementia symptoms. Community services are supported through the Home Care Package (HCP) and the Commonwealth Home Support Program (CHSP), as well as the National Disability Insurance Scheme (NDIS) for individuals under the age of 65. At the same time there is no specific governmental support for mental health issue for older people. Since the NDIS also supports mental health services for people less than65 years old the diversity of mental health services for people between 18 and 65 years old is better than that for mental health services for older people.

It is important to note that accessing dementia services in this study was considerably more challenging than accessing mental health services in the ACT. 41 There was no direct contact with manager level staff available for other service providers, researchers, or policy makers. Compared to that for mental health services, response rates to our interview requests were lower. Forty two percent of aged care providers did not respond or were not available for an interview compared to less than 10% non-respondents in mental healthcare sector in the same study area. 41 Non-respondent organisations have been coded based on the information publicly available on their websites considering the coding of similar services in the same local area.

Moreover, organisations often failed to provide supplementary information, such as workforce capacity data, in response to our follow-up inquiries, with response rates lower than those from mental health service providers. 42 Overall, service providers commonly offered website information alongside phone or email contact options for additional inquiries. However, they typically supplied a national number or email for all inquiries. This approach proved inconvenient for us and might not be user-friendly, especially for older individuals. National numbers posed challenges as respondents were often unfamiliar with local facilities. Emails, on the other hand, either garnered no response or, when received, lacked helpful information due to respondents’ limited knowledge.

An effective approach to caring for individuals with chronic conditions must encompass both healthcare and social services. 43 People living with dementia may have significant non-medical social needs that impact their health and quality of life, and these should be considered when developing individual management plans. 44 However, the integration of social services into healthcare can be challenging due to the financial incentives that prioritise health-related services. As a result, there is little motivation for health systems to develop comprehensive care systems that incorporate social services. 44

This assessment of dementia care is unique and unprecedented, with no comparable data available worldwide, including Australia. Although there is a noticeable variation among services in the ACT, service providers have identified some shortcomings in the system. It is uncertain whether these issues are specific to ACT, are prevalent throughout Australia, or are common worldwide due to the nature of service provision in this field. This may become evident if other regions in Australia and worldwide undergo similar evaluations, potentially revealing a nationwide concern.

One of the notable strengths of this study is its use of a consistent and uniform depiction of the regional service delivery system, taking into account all aspects. Standardised descriptions of this nature are crucial in ensuring clarity, facilitating planning, resource allocation, and guiding future service delivery, as previously demonstrated in mental health care. 45 It is important to note that this study solely focuses on the availability of care for individuals with dementia and does not address the entire aged care system. We have included only specialised services and general services that cater to clients with dementia or age-related cognitive challenges affecting at least 20% of their clientele. Our previous research on care provision for various conditions such as mental health, chronic care, Multiple Sclerosis, and disabilities indicates the importance of a separate analysis of specialised services and those general services that also cater to the target population. 21 , 22 , 40 In the case of dementia, we have identified a significant proportion of general services with a substantial case load of people with dementia. This finding prompted us to include general services with over 50% and those with over 20% case load of dementia. The number of services falling into these categories highlights a major problem in the capacity of specialised care in this area. While general services with less than 20% of clients having dementia still contribute to the overall capacity for individuals living with dementia, it is crucial to note that, due to differences in the nature of services and the expertise of service team members, a separate evaluation for general services is warranted.

The current study has certain limitations. Firstly, the evaluation was restricted to specialised and general services that have a significant number of clients with cognitive impairments. The categorisation of services into specialised and general was based on their focus on individuals with dementia or on older adults, but the study lacks information on the level of workforce training in each group, as well as workforce details. Additionally, it is important to acknowledge that dementia is just one of several conditions that aged care services cater to. As a result, there may be competition for limited resources, but implementing tools like the DESDE-LTC can inform a fair allocation of resources. The DESDE-LTC was initially validated for chronic care coding in 6 Western and Eastern European countries and outperforms other global service assessment tools in terms of validation extent and psychometric depth. 46 Extending its validation to other parts of the world would be advantageous. The study’s methodology is replicable, allowing for follow-up assessments over time to track the impact of plans and changes, 47 such as the introduction of new services, particularly in tandem with evaluations of health-related quality of life and satisfaction with care provided to individuals with dementia.

As this study was the first to employ the DESDE method in evaluating the dementia care system, it introduced a novel experience. Among the most challenging aspects was accessing managers of organisations and arranging interviews, especially with residential facilities. Given that a substantial portion of dementia care is subsidised by local and national governments, many organisations had already reached their capacity. Consequently, they might have lacked the motivation to respond to or request interviews. This contrasted with our previous studies on mental health care, where organisations showed more enthusiasm, foreseeing potential benefits in terms of publicity.

Additionally, identification of the services was another challenge because most of the services were not available in national and local directories. This issue was also less problematic in other fields. Last but not least, the entire system designed for aged care, and indeed for people with dementia, needed to be utilised. Therefore, the number of services specifically designed for people with dementia was limited, and we had to include those with a high rate of clients with dementia, an issue which is not the case in mental health services.

Conclusions

Although governmental supports facilitated a variety of dementia care services in the ACT, the care system primarily relies on non-specialised aged care services. This lack of specialised services is especially evident in day care and respite care. Therefore, it is essential to establish further specialised services, specifically those currently absent to aid patients in living independently at home. Providing policy and service decision makers with the necessary tools and opportunities to make informed decisions regarding future planning and investments in dementia care is critical. This study has demonstrated the evaluation of dementia care in a local health system and serves as a resource for assessing how services will evolve over time, and whether the changes will result in improved care levels in areas of need identified locally.

Supplemental Material

Acknowledgments.

The authors would like to express their gratitude to Ms. Nicole O’Connor for her invaluable administrative support in this study and to Ms. Secil Yanik for her assistance in preparing the visual materials. Additionally, the authors wish to specially thank service providers, who participated in the project and provided invaluable comments regarding the dementia care in ACT.

Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by Australian Dementia Network (ADNet) and the Centre for Healthy Brain Ageing (CHeBA), University of New South Wales Sydney, in partnership with University of Canberra.

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Author Contributions: H. T-J. co-planned the study, interviewed participants, Coded the services, conducted the data analysis, and wrote the paper. M. F. supervised the coding and contributed to revising the paper. N. B., K. B. and P. S. S. helped to plan the study and to revise the manuscript. N. D. interviewed participants and revised the manuscript. L. S-C. co-planned the study, supervised the coding and revised the manuscript.

Ethics Approval: Ethics approval for this study was granted by an institution Health Human Research Ethics Committee.

Supplemental Material: Supplemental material for this article is available online.

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• Published: 20 August 2024

Supporting caregivers of people with dementia: insights from Demensia KITA mobile application online content development

• Nurul Syaireen A. Rashid 1 , 2 ,
• Muhamad Fadhil Mohamad Marzuki 3 ,
• Nik Nairan Abdullah 1 ,
• Mariam Mohamad 1 ,
• Aseel A. Takshe 4 ,
• Raudah Mohd Yunus 1 &
• Xin Wee Chen 1  

Scientific Reports volume  14 , Article number:  19302 ( 2024 ) Cite this article

Metrics details

• Patient education
• Public health

Dementia significantly impacts caregivers, particularly in low and middle-income countries where support is often inadequate. Given the gap in affordable and culturally relevant digital resources for Malaysian dementia caregivers, we developed "Demensia KITA," a mobile application (app) specifically tailored to their needs. This study utilized a theoretical framework proposed from existing literature and the "Model of Carer Stress and Burden". This paper discusses our app content development, highlighting key findings and challenges. To assess caregivers’ needs, the Nominal Group Technique (NGT) with five dementia caregivers was conducted, followed by a Focus Group Discussion (FGD) with eight medical professionals. Both sessions were conducted online via Google Meet. In the NGT, ideas were generated, organized, prioritized, reviewed, and refined by medical professionals in the FGD. Content relevant to addressing the complexities of dementia caregiving was then discussed. Topics were either adapted from established modules or newly developed from credible sources. Subsequently, these were organized into modules and themes, and subsequently underwent expert validation. From the NGT, three key domains emerged: Knowledge, Services, and Support. These were further organized into two modules: 'Patient Care for Caregivers' and 'Caregiver Wellbeing'. Within these, twelve sub-modules were identified, covering a range of topics including basic knowledge on dementia, patient care, nutritional management, oral and dental care, simple exercises, daily activity and memory rehabilitation, service directories, support groups, emotional and stress management, welfare assistance, and daily motivation. This framework was developed to address the specific needs of dementia caregivers in terms of psychoeducation, psychosocial and caregiving skills, incorporating expert opinions in the field. This study corroborates the feasibility of online methods for mobile health app content development and encourages similar research. Future studies should evaluate Demensia KITA's effectiveness in alleviating caregiver burden across all regions, assess users’ acceptance, and ensure it meets the evolving needs of Malaysian caregivers with regular updates.

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Introduction.

Dementia, though not a normal part of aging, is closely linked with old age 1 . It affects approximately 7% of adults over 60 1 , 2 and is a growing concern, significantly as the global population in this age group is projected to reach 2.1 billion by 2050 3 , 4 . The burden is most predominant in low- and middle-income countries, home to 60% of people living with dementia (PLwD) 1 . Its impact extends beyond patients to caregivers and families. Informal caregivers, often family, spend many hours each day on dementia care, a task intensified by the cognitive and behavioural challenges of dementia, making it a more strenuous experience than caregiving for other chronic conditions 1 , 5 , 6 , 7 . Despite increasing dementia prevalence and an aging population, caregiver needs are often overlooked 8 . Caregiver stress, influenced by factors like inadequate support systems, high caregiving strain, limited coping skills, and behavioural issues of care recipients, can lead to PLwD social isolation 8 , 9 . This isolation heightens the risk of elder abuse and often escalates the probability of institutionalization as dementia progresses, thereby increasing both care needs and associated costs 9 . In Malaysia, it has been reported that 8.5% of the seniors population is affected by dementia 10 ; the lack of a national dementia strategy, combined with the expected increase in the aging population by 2044 11 , underscores a significant gap in preparedness. This greatly impacts the quality of life for PLwD and their caregivers. Therefore, it is crucial to have accessible support in place to address this urgent need.

While the pace is slow, the importance of supporting dementia caregivers to enhance the well-being of PLwD is increasingly being acknowledged. Though interventions such as telemedicine, in-person consultations, psychoeducation, and emotional support exist to aid PLwD caregivers, their wide dissemination is limited, leading to inaccessibility 12 . Nevertheless, with the rise in the use of mobile devices, the development of medical software applications (apps) for these platforms has enhanced, offering a new path for health education and intervention delivery 13 , 14 . This surge in the use of mobile technology has significantly altered many aspects of health practice, including but not limited to health education, promotion, and interventions for dementia caregivers within community settings.

Following the context mentioned above, research shows that healthcare mobile apps, including those for dementia care, can effectively enhance the quality of life (QOL) of patients and caregivers while reducing caregiver burden 5 , 15 , 16 , 17 , 18 . However, lower-and middle-income countries (LMIC) still lack access to such modern supports. Prior research highlights the significant challenges encountered by primary caregivers in areas with scarce dementia care resources, where the caregivers lack sufficient support 19 , 20 , 21 . Many available resources overlook the specific socio-cultural and linguistic needs of caregivers, particularly in low- and middle-income countries (LMIC), highlighting the critical need for culturally specific apps designed for particular settings like Malaysia 10 , 22 . Most current app contents are mainly in English, disregarding local caregiving traditions, social customs, and cultural values, and can be costly 16 , 17 , 18 , 23 , which is also the case in Malaysia. Based on our findings, the few available apps in Malaysia often overlook essential elements such as basic dementia knowledge, caregiving techniques, and coping strategies for home-based care 24 , 25 , 26 , 27 . Based on the literature, enhancing caregivers' knowledge could improve their stress and burden 28 , 29 , 30 , 31 . Nevertheless, finding a mobile application that offers comprehensive content on the complexities of dementia caregiving knowledge, while being tailored to the specific needs of caregivers particularly in Malaysia, remains a significant challenge.

The development of mobile app content for caregivers of PLwD involving multiple stakeholders is challenging for several reason. Clinicians and caregivers are often constrained by their responsibilities and may not be able to leave their workplaces or homes, which makes it necessary to use research methodologies that can accommodate their availability 32 , 33 . Online meetings can be a practical solution in this case as they enhance collaboration and participation in research activities. The literature review reveals that online methods for qualitative research have not been utilized to their full potential, but there is a growing trend towards their adoption. However, developing countries face several challenges, including poor connectivity, unstable internet, varying technical skills among participants, audio-visual issues, and platform limitations, as highlighted in recent literature 34 . In terms of content development, understanding the specific needs of dementia caregivers in local contexts is crucial. Caregiver-focused apps differ from patient-centred ones, as they require the inclusion of stress management, coping strategies, and practical tips while also considering the varying health literacy levels of users 35 , 36 , 37 . This means that such content should range from basic dementia knowledge to correct caregiving techniques, tailored to and accessible for caregivers of varying culture, educational and technical backgrounds. Thus, designing an app that is both informative and educational while simultaneously meeting the varied needs of users in an accessible manner presents a substantial challenge.

There is a lack of suitable apps available for Malaysian PLwD caregivers and limited applicability for LMIC. Therefore, there is a critical need to develop culturally sensitive, language-accessible digital solutions that address their unmet needs. To achieve this, this study employs a theoretical framework combining social network and support theories 38 , 39 . The focus was on the importance of psychosocial support and knowledge in direct caregiving skills 38 . The 'Model of carer stress and burden' 39 was used to examine how enhanced caregiver knowledge and psychoeducational interventions can mitigate caregiver burden and improve their overall health and wellbeing. These insights informed the development of “Demensia KITA', aiming to strengthen caregiving skills, psychosocial and psychoeducation support for Malaysian caregivers. This paper aims to: (i) elaborate on the content development of “Demensia KITA” using an online platform; and (ii) discuss challenges and insights from the online content development process.

The overall development of the mobile app was done in three-phases, which were outlined in our study methodology protocol published elsewhere 40 . This paper describes Phase I, which involved content development, and shares the process and outcomes of this phase, as well as the insights gained during the various steps we undertook. During the app content development, we integrated findings from previous literature on caregiver needs. Based on previous literature, dementia caregivers have three distinct needs: medical, educational, and psychosocial 41 , 42 , 43 , 44 . Medical needs encompass increased knowledge of the care recipients’ disease and condition 45 , 46 . Educational needs involve acquiring communication skills and managing cognitive and behavioural disorders 41 , 42 , 44 . Psychosocial needs include social support and resources 41 , 43 , 44 , 47 , 48 .

We conducted a need assessment among Malaysian dementia caregivers using the nominal group technique (NGT) 49 to validate alignment with existing literature and identify any new or different needs. Additionally, we held focus group discussions (FGD) 50 with professional clinical stakeholders to gather insights, perspectives, and achieve consensus based on the NGT findings. The researcher leading both NGT and FGD session had some experience with both methodologies. Moreover, the sessions were conducted in guidance and consultation with a team member who had expertise in qualitative research. This ensured the sessions adhered to appropriate methods, offered clear guidance, minimize bias, and facilitated accurate execution. Both sessions were held online to accommodate participants' preference and overcome logistical constraints and busy schedules 33 . The study commenced in September 2022, and the content development process took 7 months to complete.

Study participants

Figure  1 depicts the overall process of recruiting participants and collecting data for the study. The study participants were recruited from two Malaysian public hospitals that specialize in geriatric and dementia care and offer a special clinic for PLwD—Hospital Kuala Lumpur (HKL) and University Malaya Medical Centre (UMMC). Both hospitals are located in central Peninsular Malaysia, serving the densest populations in Malaysia. Liaison officers from HKL and UMMC were appointed to facilitate the recruitment process and to take on the primary role of experts responsible for supervising the content of the mobile app.

A process overview of participant recruitment and data collection for NGT and FGD.

Nominal group technique sessions

NGT participants were recruited based on purposive sampling, guided by these inclusion criteria:

Aged 18 years or older.

Primary caregiver (primary caregiver in this study is defined as a person who helps in personal care of an older adult with dementia, regardless of their education or experience for a period of 1 month or more during the last 12 months 51 , 52 ) to moderate to severe dementia patients aged 60 years and above.

Have a smart mobile phone (smartphone) and knows how to use any mobile apps.

Have a good understanding of Malay or English.

Additionally, we sought participants with diverse demographics and experiences with different dementia types to gain broader insights. Although the NGT sessions have been conducted with groups of between two and fourteen people, a maximum of seven has been recommended 53 . In this study, five participants were successfully enlisted and informed consent was obtained prior to any information publication in an open access journal. Communication between researcher and participants was facilitated through Google Meet, email, and WhatsApp. Participants were briefed on Google Meet, ensuring an efficient session from their homes with stable audio-visual connectivity. The researcher served as a moderator and used a PowerPoint presentation to explain the process of NGT which is a four-step structured method of focusing on idea generation, recording, discussion, and voting, and address any queries.

i. Idea generation

In a 20-min independent brainstorming session for the key features of the app, participants were asked to reflect on the question, " What information or features would you include in a dementia caregiving app to aid in your daily task?". Ideas were written using preferred methods at home (papers or digital devices) fostering diverse and unbiased remote idea generation.

ii. Recording

Ideas were gathered and shared in a 'Round-Robin Sharing' session, then organized into a table, and entered into a PowerPoint presentation in real-time. The session was also audio-visually recorded for thorough documentation purposes.

iii. Group discussion

The moderator facilitated a grouping of ideas, organizing them into a few domains and presenting them in real-time for in-depth assessment. For instance, statements such as “ More information about what is dementia itself ”, “ Which drugs and supplements are safe to give to my parents ”, and “ How to change adult diapers and care for bedridden families with dementia ” were grouped under the domain “Knowledge”. Meanwhile, “ Location of hospitals with doctors with expertise in dementia ” was categorized as “List of services”, and “ Finding friends to talk to when stressed out ” was classified under “Support”. All domains were finalized by constructing and validating the meanings of the ideas with all participants.

iv. Voting for prioritization

In a continuously moderated online session, participants ranked the app features from one (least important) to five (most crucial), with the moderator documenting these on the same presentation to prioritize key app content.

Focus group discussion session

Two weeks following an NGT session with dementia caregivers, experts convened an online FGD session through Google Meet, following methods adopted from an established guideline 50 . The participants selected for the FGD session included healthcare providers with specialized expertise from various disciplines, each having a minimum of 3 years of experience in their respective fields, particularly in caring for older adults or providing specialized care and consented for participation. The liaison officers were among the eight selected experts, who contributed to the selection process to ensure a comprehensive representation from all relevant disciplines for addressing dementia caregiving complexities.

The FGD was conducted in a single session, beginning with a presentation of the NGT findings. Following this, key domains were introduced and agreed upon, as the results were consistent with existing literature. This alignment led to the selection of essential topics and content. Decisions included (i) incorporating sub-specialties from each of the eight experts as sub-modules, (ii) utilizing existing resources for content, and (iii) constructing new topics for sub-modules lacking existing guideline with other credible sources. The session ended with the experts concurring that the app's purpose would be to serve as a single hub for dementia caregiving knowledge, delivering essential, validated information in a mobile-friendly format.

Following the FGD, the researchers’ team organized the app content into two main parts: one focusing on patient care for caregivers (Module 1) and the other on caregivers’ support (Module 2). Subsequently, this decision was revisited and reaffirmed in consultation with the expert panels. The researcher then compiled information from expert consultations and external resources, developing content for each sub-module under their guidance. These iterative processes involved multiple editing and communications with each expert individually at different periods, through various means such as email, WhatsApp, or video calls, to seek their approval and validation for the newly developed sub-modules relevant to their expertise. English sources were translated into Bahasa Malaysia using simplified terms to increase linguistic accessibility. Certain health information and topics were summarized and converted to infographics via Canva for clarity and visual appeal. After the content was finalized, it was reviewed and approved by the liaison officers. The content development process is summarized in Fig.  2 .

Content development based on module availability.

Ethics declarations

The study was conducted in accordance with National Institutes of Health (NIH) standards and approved by the Malaysian Research and Ethics Committee (MREC), Registration ID-22-00546-EBB (IIR) on 8 August 2022, and the Research Ethics Committee of University Teknologi MARA (UiTM) on 13 July 2022, Ethics Reference No.: REC/07/2022 PG/MR/153.Written consents were obtained from all the participants.

Nominal group technique sessions with dementia caregivers

Recruitment efforts resulted in five HKL participants, with none from UMMC due to various reasons like time constraints and schedule conflicts. Despite this, the study continued with the existing participants, considering the similar profiles at both institutions. Participant demographics and characteristics are detailed in Table 1 .

Ideas were generated independently and tabulated. Table 2 demonstrates that four domains emerged from the NGT session: services, knowledge, appointment system, and support.

The final step of NGT sessions, namely the voting process, had identified the most crucial and widely agreed-upon ideas from the PLwD caregivers, shaping the mobile app's content focus. Table 3 displays the top three highest-scoring domains voted on, which were support, services, and knowledge. The session concluded with a recognition of all the domains established.

Focus group discussion sessions with an expert panel

The FGD featured the participation of eight experts from diverse specialties and disciplines, all with professional experience in geriatric care or specialized services spanning 3–21 years (Table 4 ). Additionally, the mobile app developer was invited to facilitate two-way communications with the expert panel team during the session, ensuring a mutual understanding of overall content outcome, interfaces, and desired features for the app.

The app's content, derived from NGT session findings and expert agreement on essential domains, was structured into two main modules: first module focusing on patient care for caregivers (aiming to reduce caregivers’ stress by enhancing knowledge and caregiving skills for home-based dementia care) and second module focusing on caregivers’ wellbeing (covering caregivers’ wellness, addressing mental, emotional health support, and other relevant information dissemination). These modules, enriched with expert knowledge from FGDs, covers various of topics vital for addressing dementia caregiving challenges. Table 5 presents the structure and composition of all 12 sub-modules (seven in first module and five in second module), detailing the topics addressed.

This paper presents the development process of mobile application content aimed at supporting dementia caregivers. The results revealed three principal findings: (i) the remote construction of digital educational materials is viable and effective, (ii) NGT sessions with Malaysian caregivers revealed three dominant domains: support, services, and knowledge, and (iii) FGD with medical professionals/experts proposed two modules with 12 sub-modules addressing the three themes, covering areas of psychoeducation, psychosocial and caregiving skills.

Many studies have focused on developing mobile applications for public health education and interventions; however, most have typically relied on methods conducted in-person to shape their content 54 , 55 , 56 , 57 , 58 , 59 . The COVID-19 pandemic has brought about a shift towards digital technologies. While face-to-face methods are inherently flexible 60 , our study highlights the distinct advantages of remote sessions. These include improved accessibility and convenience, which are particularly significant for individuals who face mobility challenges or have caregiving responsibilities. Our findings reveal that similar approaches have been relatively scarce 61 , 62 , 63 . Nonetheless, these studies and our experience suggest that, using online platforms equipped with recording tools and interactive features such as screen sharing can enhance the research process and offer benefits similar to in-person meeting. This method is not limited to dementia care, but it also has the potential for research expansion and novel developments in various domains. It also promotes the involvement of a diverse participant base, enhancing accessibility and outcomes 60 .

The domains and outcomes of the NGT session align with existing literature 29 , 38 , 43 , 44 , and highlight the emotional and mental support needs of Malaysian caregivers who care for people with dementia. Although there were initial concerns about the app's focus on patient care, our findings emphasize the importance of educating caregivers in dementia care. Caregivers frequently turn to various sources for guidance, including websites, social media, and peer advice, which can result in guidance that is inappropriate or impractical to address their concerns or needs 64 , 65 . This lack of adequate knowledge among caregivers in managing newly diagnosed patients and providing care for bed-bound individuals can result in suboptimal care, potentially leading to slower patient recovery or even deterioration in health conditions 66 . This situation not only worsens the patient's condition but also increases the caregiver's burden.

During the FGD, it was revealed that there are many specialized areas lack comprehensive modules and public guidelines, rendering them inaccessible to Malaysian PLwD caregivers. Although some information exists, it is fragmented across multiple reputable sources, leaving key topics such as dietary guidance, rehabilitation practices, and caregiver helplines largely unknown. Additionally, information on basic nursing skills for caregivers of older people and managing behavioural issues at home was particularly scarce and difficult to locate, necessitating a thorough search to extract and emphasize vital information for caregiver support. The lack of accessible knowledge in psychoeducation, psychosocial, and caregiving skills, crucial for local PLwD home care, intensifies caregiver stress and drives some towards institutionalizations 67 , 68 . Hence, Demensia KITA's comprehensive content serves to bridge existing gaps by providing a holistic “one-stop-centre” for caregivers, enabling convenient access to a wide range of dementia caregiving information and support for their well-being through handheld devices.

Demensia KITAs’ app content is tailored to align with local customs, ensuring cultural sensitivity and language accessibility for Malaysian caregivers of people living with dementia, catering to their specific unmet needs. Previous studies underline the significance of respecting the unique cultural values in diverse ethnic groups for effective dementia care 69 , 70 . Our content is tailored to incorporate values pertinent to Malaysian culture and context in general. In addition to being fully functional in Bahasa Malaysia, the national language, Module 1 for instance, provides detailed dementia information relevant to Malaysia, including the five most common dementia types in the country. It also mentions additional content on dementia prevention, illustrated with examples of religious and cultural practices in Malaysia, such as religious rituals, traditional cultural games, and customary cultural activities. This module also offers dietary advice reflective of local cultures, featuring common Malaysian foods, local delicacies, and menus. Module 2 lists diverse Malaysian support groups and respite care, emphasizing local services and also introducing “zakat” for Muslim users, with plans for broader financial assistance information. The module's motivational quotes and visuals are also culturally inclusive, catering to Malaysia's multiracial demographic 10 .

While institutionalized care is an option for some families, financial constraints and cultural values emphasizing familial responsibility and respect for parents and senior citizens often necessitate home-based care for individuals with dementia 69 , 71 , 72 , 73 . To address these challenges, “Demensia KITA” aims to educate and support both unpaid home caregivers and paid institutional caregivers, particularly new trainees. By engaging with Module 1, users can acquire or deepen their understanding of dementia, along with learning essential caregiving and nursing techniques. Should caregivers seek support for their mental well-being or require guidance, Module 2 offers foundational assistance. In short, the app serves as a comprehensive source of information on dementia and caregiving, supporting the Malaysian Ministry of Health's efforts in healthcare digitalization and creative innovation 74 , 75 . It aims to enhance dementia awareness and prepare the population for the challenges of an aging society in the coming years, while also supporting the Ministry of Health's policies 70 , 76 .

Study challenges and limitations

During the research, we encountered several challenges and limitations. A main challenge was the absence of established modules or clinical guidelines in various sub-specialties related to the sub-modules we intended to include in the caregiving mobile app content. This gap in pre-existing resources necessitated the development of new content tailored specifically for this application, which was both time-consuming and complex due to the need for comprehensive and accurate information. Furthermore, while some relevant information was available, it was often dispersed among numerous credible sources. This dispersion not only made it difficult to combine and create concise information, but also raised concerns about consistency when integrating information from different origins. The fragmented nature of the information required extensive literature reviews and consultations with experts to ensure the content’s reliability and applicability to the target audience of caregivers. Moving forward, the content will be subjected to a validation process prior to its release or public availability.

Secondly, the content development process was sequential, necessitating that every sub-module content be fully developed and approved by its respective expert panel. This sequential approval process enabled the researcher to focus on refining each sub-modules’ content and ensuring its accuracy before moving on to develop the next sub-module with a different expert panel's input. This step often experienced delays due to the panels' clinical duties, impacting the overall project timeline. Moreover, translating these resources directly from English to Bahasa Malaysia, while simplifying medical jargon was a demanding task, despite the researcher's proficiency in both languages. To enhance clarity and comprehension, a Bahasa Malaysia educator reviewed the translations.

Thirdly, regarding the technical aspects, our initial plan was to create a fully offline app featuring embedded videos, nonetheless, posed storage and performance issues, potentially leading to lagging and uninstallations. As a solution, we opted to embed external video content and website using links within the app, yet the disadvantage would be the continued availability of these original resources, as their removal would render them inaccessible to app users. This dependency necessitates regular monitoring and updates to ensure content remains accessible, including the replacement of these resources with suitable alternatives. Furthermore, sourcing educational content in Bahasa Malaysia posed another challenge due to the prevalence of English-language videos. To overcome this, we selected videos that offered subtitles in Bahasa Malaysia. Nonetheless, Demensia KITA stands as the first-of-its-kind prototype dedicated to bridging the psychoeducational, psychosocial, and caregiving skill gaps for Malaysian PLwD caregivers. We anticipate that future project will investigate the integration of additional features to enhance the app's functionality, including interactive elements like games, caregiver support chatrooms, and embedded videos, while also seeking methods to reduce the app's data storage requirements on smartphones.

Conclusions

This study highlights the practicability of using online qualitative methods in developing mobile app content, which encourage further digital health research in a similar way. Our findings reveal a significant need for an improved understanding of dementia caregiving skills, and greater availability of PLwD caregiver support in Malaysia. Future efforts should examine the app’s impact on reducing caregiver burden in both urban and rural settings, assess caregivers' knowledge, attitudes, and practices, and determine their acceptance. The app will also undergo scheduled updates to meet the evolving needs of Malaysian dementia caregivers. “Demensia KITA” contributes to the Sustainable Development Goals by promoting better awareness on health and reducing inequalities, demonstrating how focused technological solutions can aid in achieving these global goals.

Data availability

All data generated or analysed during this study are included in this published article.

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Acknowledgements

The authors extend their gratitude to the Directors of Hospital Kuala Lumpur and University Malaya Medical Centre for authorizing this study, and the expert panels and caregivers of dementia patients for their invaluable participation in our research. We would also like to thank the Director General of Health Malaysia for his permission to publish this article.

The study received funding from Universiti Teknologi MARA, grant number 100-RMC 5/3 SRP INT (016/2022).

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Conceptualization, N.S.A.R., X.W.C., M.F.M.M. and R.M.Y.; data curation, investigation, and methodology, N.S.A.R.; funding acquisition, X.W.C., R.M.Y. and A.A.T.; project administration, N.S.A.R., X.W.C. and R.M.Y.; first draft write-up, N.S.A.R.; supervision and offered substantial revisions, X.W.C., M.F.M.M., N.N.A., M.M., A.A.T., and R.M.Y.; validation, X.W.C., M.F.M.M., N.N.A, M.M., A.A.T., and R.M.Y.; All authors have read and approved the final manuscript.

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Rashid, N.S.A., Mohamad Marzuki, M.F., Abdullah, N.N. et al. Supporting caregivers of people with dementia: insights from Demensia KITA mobile application online content development. Sci Rep 14 , 19302 (2024). https://doi.org/10.1038/s41598-024-69947-7

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A collective case study of the features of impactful dementia training for care home staff

Affiliations.

• 1 Centre for Dementia Research, School of Health and Community Studies, Leeds Beckett University, Leeds, LS1 3HE, UK. [email protected].
• 2 Centre for Dementia Research, School of Health and Community Studies, Leeds Beckett University, Leeds, LS1 3HE, UK.
• 3 Centre for Applied Dementia Studies, University of Bradford, Bradford, UK.
• PMID: 31238881
• PMCID: PMC6593517
• DOI: 10.1186/s12877-019-1186-z

Background: Up to 80% of care home residents have dementia. Ensuring this workforce is appropriately trained is of international concern. Research indicates variable impact of training on a range of resident and staff outcomes. Little is still known about the most effective approaches to the design, delivery and implementation of dementia training. This study aimed to investigate the features and contextual factors associated with an effective approach to care home staff training on dementia.

Methods: An embedded, collective case study was undertaken in three care home provider organisations who had responded to a national training audit. Data collected included individual or small group interviews with training leads, facilitators, staff attending training, managers, residents and their relatives. Observations of care practice were undertaken using Dementia Care Mapping. Training delivery was observed and training materials audited. A within case analysis of each site, followed by cross case analysis using convergence coding was undertaken.

Results: All sites provided bespoke, tailored training, delivered largely using face-to-face, interactive methods, which staff and managers indicated were valuable and effective. Self-study booklets and on-line learning where were used, were poorly completed and disliked by staff. Training was said to improve empathy, knowledge about the lived experience of dementia and the importance of considering and meeting individual needs. Opportunities to continually reflect on learning and support to implement training in practice were valued and felt to be an essential component of good training. Practice developments as a result of training included improved communication, increased activity, less task-focussed care and increased resident well-being. However, observations indicated positive well-being and engagement was not a consistent experience across all residents in all sites. Barriers to training attendance and implementation were staff time, lack of dedicated training space and challenges in gaining feedback on training and its impact. Facilitators included a supportive organisational ethos and skilled training facilitation.

Conclusions: Effective training is tailored to learners', delivered face-to-face by an experienced facilitator, is interactive and is embedded within a supportive organisational culture/ethos. Further research is needed on the practical aspects of sustainable and impactful dementia training delivery and implementation in care home settings.

Keywords: Care homes; Dementia; Education; Long-term care; Staff training; Workforce development.

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The authors declare that they have no competing interests.

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• Components of impactful dementia training for general hospital staff: a collective case study. Surr CA, Sass C, Burnley N, Drury M, Smith SJ, Parveen S, Burden S, Oyebode J. Surr CA, et al. Aging Ment Health. 2020 Mar;24(3):511-521. doi: 10.1080/13607863.2018.1531382. Epub 2018 Dec 29. Aging Ment Health. 2020. PMID: 30596270
• Challenge Demcare: management of challenging behaviour in dementia at home and in care homes – development, evaluation and implementation of an online individualised intervention for care homes; and a cohort study of specialist community mental health care for families. Moniz-Cook E, Hart C, Woods B, Whitaker C, James I, Russell I, Edwards RT, Hilton A, Orrell M, Campion P, Stokes G, Jones RSP, Bird M, Poland F, Manthorpe J. Moniz-Cook E, et al. Southampton (UK): NIHR Journals Library; 2017 Aug. Southampton (UK): NIHR Journals Library; 2017 Aug. PMID: 28783270 Free Books & Documents. Review.
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Dementia risk factors identified in new global report are all preventable – addressing them could reduce dementia rates by 45%

Affiliate Professor of Medicine, UW School of Medicine, University of Washington

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Eric B. Larson receives funding from National Institutes of Health, National Institute on Aging and UpToDate royalties for chapters that he writes and updates.

Laura N. Gitlin receives funding from the National Institute on Aging, Veterans Administration and also royalties from various books. She also is the creator of several online courses to train health providers in evidence-based care programs that she and her teams have tested and shown to be efficacious for which she and her university affiliations are entitled to training fees.

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Nearly half of all dementia cases could be delayed or prevented altogether by addressing 14 possible risk factors, including vision loss and high cholesterol.

That is the key finding of a new study that we and our colleagues published in the journal The Lancet.

Dementia , a rapidly increasing global challenge, affects an estimated 57 million worldwide, and this number is expected to increase to 153 million by 2050 worldwide . Although the prevalence of dementia is on the decline in high-income countries, it continues to increase in low- and middle-income countries .

This third updated report of the Lancet Commission on Dementia offers good news and a strong message: Policymakers, clinicians, individuals and families can be ambitious about prevention and reduce dementia risk; and for those living with dementia and their caregivers, support their quality of life using evidence-based approaches.

The new report confirms 12 previously identified potentially modifiable risk factors from two previous reports, published in 2017 and 2020 . It also offers new evidence supporting two additional modifiable risk factors: vision loss and high levels of low-density lipoprotein (LDL) cholesterol , often called “bad” cholesterol.

Our study of published evidence found that collectively, addressing 14 modifiable risk factors could potentially reduce the prevalence of dementia by 45% worldwide. Even greater risk reductions could be possible in low- and middle-income countries and for people with low income in higher-income countries given the higher prevalence of dementia , health disparities and risk factors in these populations.

The report further indicates that reducing these 14 risks can increase the number of healthy years of life and reduce the length of time with poor health in people with dementia.

Additionally, the report cites clinical trials showing that nonpharmacological approaches, such as using activities tailored to interests and abilities, can reduce dementia-related symptoms and improve quality of life .

We are a general internist and an applied sociologist and intervention scientist , and our work focuses on memory and wellness in older adults. Together with 25 other internationally recognized dementia experts under the leadership of psychiatry professor Dr. Gill Livingston , we carefully reviewed the evidence to derive recommendations for prevention, intervention and care.

Why it matters

The rapid growth of aging populations worldwide is a triumph of better public and personal health throughout the entire life span. Yet, given the lack of a dementia cure, this report highlights the importance of prevention as well as supporting quality of life for those with a dementia diagnosis.

In the new report, our team proposed an ambitious program for preventing dementia that could be implemented at the individual, community and policy levels and across the life span from early life through mid and late life. The key points include:

• In early life, improving general education.
• In midlife, addressing hearing loss, high LDL cholesterol, depression, traumatic brain injury, physical inactivity, diabetes, smoking, hypertension, obesity and excessive alcohol.
• In later life, reducing social isolation, air pollution and vision loss.

Together, these add up to the Lancet Commission on Dementia’s estimate that 45% of dementia risk can be reduced. And an abundance of new research shows that when risk factors are addressed, such as exposure to air pollution, they are linked with improved cognition and likely reduction of dementia risk .

New evidence supports the notion that in high-income countries, reducing dementia risk can translate to more healthy years, years free of dementia and a shorter duration of ill health for people who develop dementia.

What still isn’t known

The 45% reduction in dementia risk across the world’s population is based on a calculation that assumes that risk factors are causal and can be eliminated. It shows how dementia prevention is critical and the impact it would have on individuals and families.

The commission emphasized the need for more research to identify additional risk factors, test risk factor changes in clinical trials, provide guidance for public health efforts, and identify and evaluate strategies for implementing and scaling evidence-based programs that support people with dementia and caregivers.

The updated report has worldwide public health and research impact and is being widely disseminated. It serves as a guideline to clinicians and policymakers and outlines new research directions.

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Risk of glaucoma to subsequent dementia or cognitive impairment: a systematic review and meta-analysis

• Systematic Review
• Open access
• Published: 20 August 2024
• Volume 36 , article number  172 , ( 2024 )

Cite this article

You have full access to this open access article

• Xiaoran Wang 1 ,
• Wenjing Chen 2 ,
• Wenxia Zhao 3 &
• Mingsan Miao 2 , 4  

Substantial evidence supports that glaucoma and dementia share pathological mechanisms and pathogenic risk factors. However, the association between glaucoma, cognitive decline and dementia has yet to be elucidated.

This study was aimed to assess whether glaucoma increase the risk of dementia or cognitive impairment.

PubMed, Cochrane Library, Web of Science, and EMBASE databases for cohort or case-control studies were searched from inception to March 10, 2024. The Newcastle-Ottawa Quality Assessment Scale (NOS) was used to the risk of bias. Heterogeneity was rigorously evaluated using the I 2 test, while publication bias was assessed by visual inspection of the funnel plot and by Egger’ s regression asymmetry test. Subgroup analyses were applied to determine the sources of heterogeneity.

Twenty-seven studies covering 9,061,675 individuals were included. Pooled analyses indicated that glaucoma increased the risk of all-cause dementia, Alzheimer’s disease, vascular dementia, and cognitive impairment. Subgroup analysis showed that the prevalence of dementia was 2.90 (95% CI: 1.45–5.77) in age ≥ 65 years and 2.07 (95% CI: 1.18–3.62) in age<65 years; the incidence rates in female glaucoma patients was 1.46 (95% CI: 1.06-2.00), respectively, which was no statistical significance in male patients. Among glaucoma types, POAG was more likely to develop dementia and cognitive impairment. There were also differences in regional distribution, with the highest prevalence in the Asia region, while glaucoma was not associated with dementia in Europe and North America regions.

Glaucoma increased the risk of subsequent cognitive impairment and dementia. The type of glaucoma, gender, age, and region composition of the study population may significantly affect the relationship between glaucoma and dementia.

Avoid common mistakes on your manuscript.

Introduction

Dementia, a growing global public health problem, affects approximately 50 million people. As life expectancy rises, the number of dementia cases worldwide is expected to skyrocket to more than 131 million by 2050 [ 1 ]. As a neurodegenerative disease, the widespread prevalence of dementia places a significant strain on global healthcare systems. Due to the lack of effective treatments and preventive interventions, identifying potential risk factors for dementia is critical for dementia prevention. However, no disease-modifying treatments are currently available for adults with dementia; thus, an emphasis on risk factor reduction, particularly modifiable risk factors, is warranted. According to recent research, visual impairment is one of the first symptoms of dementia [ 2 ]. Visual deprivation caused by retinal ganglion cell (RGC) injury may result in decreased activation of central sensory pathways in the brain, resulting in decreased cognitive load and an increased risk of structural brain damage, accelerating the progression of dementia [ 3 , 4 ].

Glaucoma is a group of diseases characterized by optic papillary atrophy and depression, as well as retinal ganglion cell (RGC) death and visual field defects, which is the most common cause of irreversible blindness worldwide. Clinically, it is classified as open-angle glaucoma or angle-closure glaucoma based on the status of the anterior chamber angle at the time of elevated intraocular pressure [ 5 , 6 ]. Despite extensive multicenter and laboratory studies showing that pathological intraocular pressure (IOP) elevation is a significant risk factor for the development and progression of the disease, lowering IOP does not always stop the disease [ 7 ]. In glaucoma patients, progressive loss of visual function is associated with RGC degeneration, characterized by apoptosis of retinal somatic cells, axonal degeneration of the optic nerve, and synaptic loss of dendrites and synaptic loss of axon terminals. In addition, glaucoma-related neuronal damage extends to the lateral geniculate nucleus and visual cortex and is accompanied by astrocyte and retinal microglia changes [ 8 , 9 , 10 ]. Axonal transport defects have also been linked to several neurodegenerative diseases, including Alzheimer’s disease (AD) and other dementias. Although inconclusive, numerous research have been conducted to support the common pathophysiological features of dementia and glaucoma regarding age-related biological features and cell death mechanisms in the central nervous system [ 11 ].

Several cross-sectional studies have found that glaucoma is associated with deficits in a variety of cognitive functions, including attention, language, learning, and memory skills [ 12 , 13 , 14 , 15 ]. In a study of 1,168 elderly patients, Mandas et al. found a significant association between glaucoma and the prevalence of mixed dementia [ 16 ]. Furthermore, neuropathological studies have revealed hyperphosphorylated tau proteins, increased amyloid fragmentation, microglia activation, neurodegeneration, and apoptosis in the retinas of glaucoma patients. However, existing evidence does not explain the causal relationship between glaucoma and dementia or cognitive impairment, and findings are inconsistent [ 17 , 18 , 19 ]. For example, in a cross-sectional study in Denmark, Bach-Holm et al. followed 69 elderly patients with normal IOP glaucoma for 12 years and found no correlation between glaucoma and dementia [ 20 ]. Ong et al. followed 1179 older adults with age-related eye disease in Singapore and suggested no significant correlation [ 21 ]. The relationship between glaucoma and dementia or cognitive impairment remains controversial.

Growing evidence suggests that glaucoma and dementia share pathological mechanisms and pathogenic risk factors. Nevertheless, previous studies reported inconsistent results regarding the association between glaucoma and dementia or cognitive impairment [ 22 ]. Clarifying the effects of glaucoma on subsequent secondary cognitive impairment or dementia is critical for preventing and delaying the progression of these diseases. Therefore, we performed a systematic review and meta-analysis to assess the association of glaucoma with dementia or cognitive impairment.

This current systematic review conformed to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines [ 23 ] and was registered in the International Prospective Register of Systematic Reviews: https://www.crd.york.ac.uk/ PROSPERO (Registration number: CRD 42,023,408,202).

Search strategy

Both Medical Subject Headings (MeSH) terms and keywords were utilized to retrieve as many as possible in PubMed, Web of Science, EMBASE, and Cochrane Library for case-control or cohort studies exploring the relationship between glaucoma and dementia or cognitive impairment published from their inception to March 10, 2024. The main terms included “glaucoma,” “dementia,” “Alzheimer’s disease,” “vascular dementia,” “senile dementia,” “cognitive decline,” “cognitive impairment,” “cognitive dysfunction,” and “cognitive disorder.” A further gray literature search was conducted using Google Scholar to identify relevant articles not found through the database search. References and citations of relevant publications identified for inclusion and reviews on this topic were scrutinized. English and Chinese language publications were included. The detailed search strategy is presented in Supplementary Table 1 .

Eligibility criteria

The included studies were required to meet the following criteria: (1) case-control or cohort study design; (2) exposure factors were glaucoma with incident dementia or cognitive impairment, and the control group included participants without glaucoma; (3) report risk estimates of dementia or cognitive decline as the outcome (i.e., at least all-cause dementia or Alzheimer’s disease as its most common subtype), expressed as an adjusted odds ratio (OR), risk ratio (RR), or hazard ratio (HR); (4) population-based study design; (5) English publication.

Exclusion criteria

The exclusion criteria were as follows: (1) conference abstract, reviews, case reports, basic experiments and other non-clinical research; (2) duplicate publications; (3) studies with incomplete data or no relevant outcome.

Study selection and data extraction

All retrieved records were imported into an EndNote (Clarivate Analytics) library, and two researchers (WXR and CWJ) independently screened the literature, extracted data, and cross-checked. Discussions were cross-verified by a third researcher in the event of disagreement. When screening literature, first read the title and abstract, and after excluding irrelevant literature, further, read the full text to determine what is ultimately included. (1) Basic information: first author, publication year, country, study type; (2) Characteristics of included studies: sample size, gender, age, follow-up years, diagnostic criteria for glaucoma, dementia, or cognitive impairment, and adjusted covariates; (3) Key elements of risk of bias assessment; and (4) Effect sizes and their 95% confidence intervals (CI) after controlling for confounding factors.

Data synthesis

Following the PRIMA 2020 guidelines, the selection process was documented using a “flow diagram” showing the number of references excluded at each step. Reasons for study exclusion after full-text assessment are reported in detail. In addition, the extracted data were tabulated and summarized in text. Moreover, the results of the statistical analysis are presented in both tables and figures (detailed below).

Assessment of risk of bias

To determine the validity of the included studies, two independent investigators assessed the risk of bias (RoB) using the Newcastle-Ottawascale Scale (NOS) [ 24 ] and cross-checked the results. In the case of any disagreement, a third party was consulted to assist in the decision. The evaluation was conducted in three parts with eight items, with scores ranging from 0 to 4 indicating low quality, 5 to 6 indicating medium quality, and 7 to 9 indicating high quality. Each study was assigned a risk of bias rating - high, moderate, or low - based on responses to each question.

Statistical analysis

All statistical analyses were conducted by using RevMan 5.3 and State 17.0 software. The primary outcome indicators were the pooled odds ratios (OR) and 95% confidence interval (95% CI) with adjusted confounders. We formally assessed between-study heterogeneity (chi-square test, α = 0.1) to determine the share of variation across studies due to heterogeneity rather than chance (Higgins’ I 2 statistic) and interpreted heterogeneity as potentially insignificant (40%), moderate (30-60%), significant (50-90%), or considerable (75-100%), in line with Cochrane recommendations [ 25 ]. If P  > 0.05 or I 2  < 50%, there was no statistical heterogeneity between studies, and a fixed-effects model was selected. When clinical or statistical heterogeneity occurred, a random-effects meta-analysis was used. An α-level of 0.05 was used to determine statistical significance. We visually examined funnel plot asymmetry and performed Egger’s regression test to detect statistical publication bias (Lin et al., 2018). To confirm the robustness of the overall results, we performed a sensitivity analysis by rerunning the meta-analysis while omitting one study at a time, or by trim-and-fill method. Given that the study region, type of glaucoma, type of dementia, gender, age, sample size, and follow-up time could affect the findings of the study, we performed subgroup analyses to explore sources of heterogeneity.

Literature search

In summary, the search retrieved 4,216 records from electronic databases. No additional articles were included based on reference screening and expert consultation. After removing duplicates, 3,467 publications were initially screened by reading the titles and abstracts of the literature. Using the above inclusion/exclusion criteria, the full texts of 54 articles were evaluated, and 27 studies were eventually included. There were twenty cohort studies [ 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 ] and seven case-control studies [ 46 , 47 , 48 , 49 , 50 , 51 , 52 ] involving 9,061,675 participants (Fig.  1 ). The detailed exclusion list is provided in Supplementary Table 2 .

PRISMA flow diagram of the study selection process

Main characteristics of included studies

Across the included studies, there were 9,061,675 participants aged 18 years or older, with the proportion of male participants ranging from 35.01 to 54.66%. The study populations were from China ( n  = 8) [ 33 , 34 , 36 , 40 , 42 , 48 , 49 , 51 ] the United States ( n  = 5) [ 31 , 32 , 38 , 39 , 46 ], Sweden ( n  = 5) [ 26 , 30 , 44 , 45 , 50 ], Korea ( n  = 3) [ 27 , 28 , 35 ], the United Kingdom ( n  = 2) [ 28 , 37 ], Australia ( n  = 1) [ 52 ], France ( n  = 2) [ 43 , 47 ], and Denmark ( n  = 1) [ 41 ]. These articles were published from 2007 to 2024, with sample sizes ranging from 509 to 2,623,130, and the mean follow-up time varied from 3 to 14 years.

Most of these studies used the International Classification of Diseases-9 (ICD-9) or International Classification of Diseases-10 (ICD-10) diagnosis codes as glaucoma and dementia diagnostic criteria. However, seven studies [ 30 , 31 , 43 , 44 , 45 ,, 51 , 52 ] used ophthalmologic examinations to assess glaucoma, one [ 36 ] used self-administered questionnaires only to determine glaucoma, and four [ 32 , 36 , 51 , 52 ] used MMSE/McOA scores to diagnose dementia and cognitive impairment. All studies examined the association between glaucoma and dementia or cognitive impairment as a dichotomous variable among the outcome indicators. In 24 studies [ 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 47 , 50 ], the outcome measures were dementia and cognitive impairment in three [ 46 , 51 , 52 ]. The main characteristics of the included studies are summarized in Table  1 .

Methodology quality assessment

The NOS scale was used to assess the quality of the included studies, and the results are presented in Tables  2 and 3 . Twenty-one studies [ 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 48 , 49 ] with a quality score ≥ 7 were classified as high quality, five [ 37 , 47 , 50 , 51 , 52 ] with a quality score of 6, and one [ 46 ] with a quality score of 5 was classified as moderate quality. In terms of study population selection, four cohort studies [ 32 , 33 ,, 36 , 41 ] had dementia at baseline selection, three case-control studies [ 49 , 51 , 52 ] did not specify the definition of the control group, and one case-control study [ 52 ] did not explicitly describe the selection of the control population. In terms of comparability, six cohort studies [ 28 , 32 , 36 , 37 , 38 , 44 ] and five case-control studies [ 45 , 48 , 49 , 51 , 52 ] were at risk of bias due to incomplete adjustment for confounding factors. Regarding outcomes, two studies [ 42 , 43 ] were at risk of bias due to insufficient follow-up time. The mean quality score of the 27 studies was 7.59, indicating overall high methodological quality (Table 3 ).

Association between glaucoma and risk of all-cause dementia

A total of 18 studies evaluated all-cause dementia as an outcome. Of these, 11 studies showed that glaucoma was associated with an increased risk of all-cause dementia, with effect estimates (OR) ranging from 1.09 (95% CI: 1.15˗1.13) to 3.90 (95% CI: 1.50˗10.14). In general, glaucoma was associated with an increased risk of all-cause dementia (OR = 1.31, 95% CI: 1.16˗1.48, P  < 0.0001) (Fig.  2 ). Sensitivity analysis was performed by the trim-and-fill method, and the combined random-effects model resulted in a log OR = 0.259, 95% CI: 0.125˗0.393. After two iterations with the Linear method, the shear-complement method did not add to the study, indicating that the overall results were relatively robust (Supplementary Figure S1 ). Plotting funnel plots to test for publication bias showed that the distribution of studies was largely symmetrical (Fig.  2 ). Combining Egger’s test ( P  = 0.710) suggested a low likelihood of publication bias.

Forest plot and Funnel plot showing the effect of glaucoma on all-cause dementia

Association between glaucoma and risk of Alzheimer’s disease

There were 24 studies included, and the results revealed a strong link between glaucoma and an increased risk of Alzheimer’s disease (OR = 1.30, 95% CI: 1.17˗1.46, P <0.00001) (Fig.  3 ). For sensitivity analysis, using a study-by-study exclusion approach, the combined ORs ranged from 1.29 (1.13˗1.47) to 1.35 (1.15˗1.59) (Supplementary Figure S2 ). The funnel plot was roughly symmetrical (Fig.  3 ), and Egger’s test ( P  = 0.07) indicated that publication bias was unlikely.

Forest plot and Funnel plot showing the effect of glaucoma on Alzheimer’s disease

Association between glaucoma and risk of vascular dementia

There was significant link between glaucoma and the risk of vascular dementia (OR = 1.26, 95% CI: 1.07˗1.47, P  = 0.005) (Fig.  4 ). Removing one study at a time did not have a statistically significant effect on the size of the aggregated results in the sensitivity analysis (Supplementary Figure S3 ). Regarding publication bias, Egger’s test ( P  = 0.436) also suggested no publication bias .

Forest plots showing the effect of glaucoma on vascular dementia ( a ) and cognitive impairment ( b )

Association between glaucoma and risk of cognitive impairment

Three studies with a total of 1,513,047 patients were included, and the result revealed that glaucoma patients had twice the risk of cognitive impairment as the general population (OR = 2.00, 95% CI: 1.79˗2.22, P <0.00001) (Fig.  4 ). Egger’s test ( P  = 0.800) indicated that there was no significant publication bias.

Subgroup analysis

Subgroup analysis revealed that the type of glaucoma, gender, age and region of the study population significantly influenced the relationship between glaucoma and dementia. The pooled results showed that primary open-angle glaucoma increased the risk of all-cause dementia (OR = 1.55, 95% CI: 1.21˗2.00, P  = 0.0006), Alzheimer’s disease (OR = 1.29, 95% CI: 1.11˗1.49, P  = 0.0006), and cognitive impairment (OR = 2.00, 95% CI: 1.79˗2.22, P <0.0001), while angle-closure glaucoma increased the risk of vascular dementia (OR = 1.24, 95% CI: 1.01˗1.52, P  = 0.04). Concerning gender, female glaucoma patients were more likely to develop Alzheimer’s disease (OR = 1.82, 95% CI: 1.47˗2.26, P <0.00001), whereas there was no significant link between male glaucoma patients and dementia. According to age subgroup analyses, glaucoma patients aged ≥ 65 or < 65 both had a significantly increased risk of all-cause dementia and Alzheimer’s disease. In addition, we found that the glaucoma patients in Asia had a 29% increased risk of all-cause dementia, and a 48% increased risk of Alzheimer’s disease compared to those without the visual condition. In Europe and North America, nevertheless, there was no correlation between glaucoma and dementia. The results from subgroup analyses by sample size and follow-up time showed no statistically significant differences regarding the impact of glaucoma on dementia in the subgroups, and they were not the source of heterogeneity (Table  4 ).

Main findings

The present study comprehensively investigated the association between glaucoma and the risk of incident dementia or cognitive decline and found that glaucoma was an independent risk factor for all-cause dementia, Alzheimer’s disease, vascular dementia and cognitive impairment. Our result is similar to the findings of a recently published systematic review. Xu et al. [ 53 ] quantified the association between glaucoma and cognitive impairment or dementia, proposing a prevalence of 7.7% for glaucoma patients with mild cognitive impairment; 3.9–77.8% for cognitive impairment and 2.5–3.3% for dementia in glaucoma patients.

Several meta-analyses have tried to pool the effects of the associations of glaucoma with dementia or cognitive decline. The meta-analysis by Zhao et al. [ 54 ]. included only eleven cohort studies published up to 2020 and revealed that glaucoma was not an independent risk factor for dementia. Similarly, Kuźma et al. [ 55 ] performed a meta-analysis of eight cross-sectional studies involving 175,357 individuals up to 2020 and found no association between glaucoma and dementia. On the contrary, our systematic review and meta-analysis is the comprehensive meta-analysis to confirm that glaucoma is linked to dementia, which may contribute to an accurate assessment of whether glaucoma patients are associated with an increased risk of dementia or cognitive impairment.

Notwithstanding these overall associations, there was a high heterogeneity of effects across all the studies and sensitivity analyses did not reduce the heterogeneity. Our subgroup analysis showed that glaucoma type, gender, age, and region (ethnicity) were influential factors in the association between glaucoma and the risk of dementia. In addition, the different confounders adjusted for each study may be another source of heterogeneity. However, there was a nonsignificant association between glaucoma and all-cause dementia in subgroups with follow-up years > 10, age 65and number of cases ≥ 10,000.

Angle-closure glaucoma only increases the occurrence of vascular dementia. Vascular imaging has shown evidence of microvascular dysfunction in both angle-closure glaucoma and dementia [ 56 ]. According to Cruz Hernández et al. [ 57 ], age-related decreased angiogenesis, lessened vascular vessel diameter, inefficient cell signaling, and impaired vasodilation result in reduced cerebral blood flow. Intermittent cerebral ischemia is linked to vascular dementia, and ischemia can cause oxidative stress, leading to the formation of reactive oxygen species and cellular damage [ 58 ]. The accumulation of neurotoxic factors causes cell death in Alzheimer’s disease, and it has been linked to retinal ganglion cell death in glaucoma. PACG patients have microvascular dysfunction and deficiencies in endothelial-dependent and non-endothelial-dependent vasodilatory responses [ 59 , 60 ]. However, open-angle glaucoma was not associated with vascular dementia, possibly due to open-angle glaucoma being included in fewer observational studies, reducing statistical efficiency. More studies are needed to confirm the association between open-angle glaucoma and dementia.

The results of subgroup analyses revealed gender differences in the prevalence of dementia, with women with a higher risk of Alzheimer’s disease with glaucoma, which is consistent with epidemiological research on dementia. Furthermore, clinical evidence has shown that women have faster age-related neurological decline and more severe cognitive impairment than elderly men [ 61 ]. Currently, there are several major biological hypotheses regarding gender differences in Alzheimer’s disease, including age-related decreases in sex hormones (estrogen, progesterone, testosterone), various genetic risks (ApoE, Etc.), effects of risk for other diseases (diabetes, depression, cardiovascular disease), and gender differences in brain anatomy [ 62 , 63 ]. Estradiol, for example, increases neurogenesis in different brain regions, such as the hippocampal dentate gyrus, and these newly generated neurons in the hippocampus contribute to region-specific learning and memory [ 64 ]. Women with mild cognitive impairment (MCI) had hippocampal atrophy, confirming estrogen’s critical role in cognitive function [ 65 ]. However, there is no link between brain estrogen levels and the onset of dementia in men [ 66 ], which may explain our results that there was no significant association between male glaucoma patients and the risk of dementia.

Age subgroup analysis proved that the coexistence of glaucoma and dementia became more pronounced with age. The risk of dementia was 2.9 times higher in glaucoma patients aged 65 years, and Alzheimer’s disease was 4.09 times higher, presumably due to the increased prevalence of glaucoma and dementia associated with advancing age. Furthermore, we discovered that the risk of glaucoma and all-cause dementia or Alzheimer’s disease differed geographically. In Asia, glaucoma significantly increased the risk of all-cause dementia and Alzheimer’s disease, whereas there was no correlation in Europe or North America. We speculate that it may be related to the large population base, accelerated population aging, and increased level of dementia diagnosis and dementia reporting in Asia, resulting in an overall high prevalence of dementia associated with rapid growth [ 67 ].

Strengths and limitations

Our study encompassed data from 27 population-based longitudinal studies, including 9,061,675 participants across 8 countries, with considerable sample size. Compared with previous meta-analyses, we attempted to include all forms of dementia by including all relevant studies, not only subgroup analysis of the type of glaucoma, the subtype of dementia, age, gender, sample size, geographic location, and follow-up time, but also a refined analysis of the association of each influencing factor with the subtype of dementia.

Nevertheless, the study still had a few potential limitations. First, there was considerable heterogeneity among the results of the included studies, lowering the quality of the evidence. Based on our findings, the type of glaucoma and geographic region of the study population may be a source of heterogeneity. Alternatively, different approaches to assessing glaucoma, dementia, and the variables used to characterize cognitive decline may provide other explanations for the discrepancy. Nevertheless, due to the limitations of the original data, more detailed subgroup analyses could not be performed, and the available results did not fully explain the sources of heterogeneity generation. None of the studies recruited participants immediately at the time of glaucoma diagnosis, which may have led to selection bias. Second, some did not fully adjust for confounding factors, such as BMI, smoking, and alcohol consumption, all risk factors for dementia or cognitive impairment. These factors may influence the association between glaucoma and dementia or cognitive impairment. Finally, the study subjects were from different regions, and differences between races may have impacted the results; the included studies were all cohort studies and case-control studies, with a higher risk of various types of bias, such as selection and recall bias.

Despite these limitations, our study has implications for public health, government officials, researchers, and the general public. The global population is growing and advances in health care and social welfare have prolonged life expectancy, meaning that older adults will represent a significant proportion of the population. As a result, age-related diseases such as Alzheimer’s disease will become more prevalent. More high-quality longitudinal studies are needed in the future to assess the association between glaucoma subtypes and dementia risk and to identify sources of heterogeneity in previously published studies. At the same time, the factors influencing the relationship between glaucoma and dementia or cognitive function should be further explored and fully adjusted to identify the underlying biological basis and reveal features of glaucoma that may increase the risk of dementia, and translational studies as well as clinical and population studies are necessary to determine the impact of different treatment strategies and the degree of glaucoma disease on cognitive function, and ultimately to identify targeted preventive interventions.

Conclusions

Overall, our review first demonstrated that glaucoma increased the risk of subsequent cognitive impairment and dementia, including all-cause dementia, Alzheimer’s disease, and vascular dementia, which updated the results of previous meta-analysis. These findings contribute to the further promotion of dementia awareness and glaucoma patients, and serve to develop global management strategies to reduce the occurrence of dementia in glaucoma.

Data availability

No datasets were generated or analysed during the current study.

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Acknowledgements

The authors would like to thank to all other authors for consulting and sorting out the relevant literature and the support of the above funds.

This research was funded by the National Administration of Traditional Chinese Medicine -- Chief Scientist of Qi-Huang Project (2022-6); Major Public Welfare Projects in Henan Province [grant numbers 201300310100]; Joint Open Project of the State Administration of Chinese Medicine [grant numbers GZY-KJS-2022-040-1].

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Wang, X., Chen, W., Zhao, W. et al. Risk of glaucoma to subsequent dementia or cognitive impairment: a systematic review and meta-analysis. Aging Clin Exp Res 36 , 172 (2024). https://doi.org/10.1007/s40520-024-02811-w

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They All Got Mysterious Brain Diseases. They’re Fighting to Learn Why.

Doctors in Canada have identified dozens of patients with similar, unexplained symptoms — a scientific puzzle that has now become a political maelstrom.

Gabrielle Cormier was 20 years old when she became the youngest confirmed case in a mysterious cluster in New Brunswick, Canada. Credit... Brendan George Ko for The New York Times

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By Greg Donahue

Greg Donahue is a writer in New York who covers crime, corruption and politics. He interviewed two dozen doctors, patients and politicians for this article.

• Aug. 14, 2024

In late 2018, after an otherwise-normal Christmas holiday, Laurie Beatty started acting strange. An 81-year-old retired contractor, he grew unnaturally quiet and began poring over old accounting logs from a construction business he sold decades earlier, convinced that he had been bilked in the deal.

Listen to this article, read by Robert Petkoff

Over the course of several days, Beatty slipped further into unreality. He told his wife the year was 1992 and wondered aloud why his hair had turned white. Then he started having seizures. His arms began to move in uncontrollable jerks and twitches. By the end of May, he was dead.

Doctors at the Georges-L.-Dumont University Hospital Center in Moncton, the largest city in the province of New Brunswick, Canada, zeroed in on an exceedingly rare condition — Creutzfeldt-Jakob disease, caused by prions, misfolding proteins in the brain — as the most likely culprit. The doctors explained this to Beatty’s children, Tim and Jill, and said they would run additional tests to confirm the post-mortem diagnosis. Three months later, when the siblings returned to the office of their father’s neurologist, Dr. Alier Marrero, that’s what they were expecting to hear. Instead, Marrero told them that Laurie’s Creutzfeldt-Jakob test had come back negative. “We were all looking at one another,” Tim says, “because we were all very confused.” If Creutzfeldt-Jakob hadn’t killed their father, then what had? What Marrero said next was even more unsettling.

“There’s something going on,” they recall him saying. “And I don’t know what it is.”

It turned out that Laurie Beatty was just one of many local residents who had gone to Marrero’s office exhibiting similar, inexplicable symptoms of neurological decline — more than 20 in the previous four years. The first signs were often behavioral. One patient fell asleep for nearly 20 hours straight before a friend took her to the hospital; another found himself afraid to disturb the stranger who had sat down in his living room, only to realize hours later that the stranger was his wife.

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Discover Aboriginal Experiences launches 4 member case studies on sustainable tourism for Earth Day 2024

Mabu Buru Tours, Broome, Western Australia © Tourism Australia

Media release

A collective of quality, authentic, Aboriginal-guided tourism offerings, Discover Aboriginal Experiences (DAE) is delighted to launch four case studies on collective members going to extraordinary lengths when it comes to sustainable tourism, whether that relates to protecting the environment, community, culture – or all three.

The launch of the four case studies coincides with upcoming Earth Day 2024, falling on 22 April. The case studies also tap into recent figures published by Statista , which show that more than 80 per cent of global travellers regard sustainable travel as important to them, and that they were willing to adopt sustainable travel incentives something that has led the global eco-tourism industry to be worth US$172.4 billion.

Indeed, the vast majority of experiences offered by members of the DAE collective fall into this category. These four case studies profile Mabu Buru Tours in Western Australia; Sand Dune Adventures in New South Wales; Wajaana Yaam in New South Wales; and Maruku Arts in the Northern Territory. The case studies are detailed below in Appendix 1. Interviews can be arranged by request.

Australia’s Aboriginal and Torres Strait Islander peoples don’t see a piece of land as something to fence off and own. Nor do they look at the bush as a place to extract as many resources as possible. They don’t regard waterways as reservoirs to feed mass plantations. Instead, they see themselves and the land as one.

The world’s oldest living cultures have been embracing sustainability long before it became fashionable to lower food miles and use plant-based plastics. For at least 65,000 years they have lived in harmony with the environment, adhering to a reciprocal relationship that honours, rather than exploits the land. The Earth is their mother, a force that enables their existence in return for care and respect.

“The Indigenous connection to Country is fundamental across the DAE collective, as is sharing of culture through tourism, fostering a thriving living culture and economic and physical wellbeing of communities, and telling uniquely Australian stories,” says Nicole Mitchell, Executive Officer Discover Aboriginal Experiences. “We’re delighted to spotlight four of our members who stand out in these fields. There are so many others – and we will develop our portfolio of case studies in the coming months. We hope this inspires guests and journalists to rethink and recognise the immense positive impact that the growing demand for Aboriginal tourism is having.”

It's this ongoing commitment to sustainability that saw the DAE collective recently acknowledged in Travel + Leisure’s Global Vision Awards 2024, announced in the lead-up to Earth Day to recognise the many companies, individuals, destinations and non-profit organisations that are leading the way in developing a more sustainable travel industry.

Editor's note:

Trade and media can access information on each operator in the collective as well as images and logos from the Trade and Media section of the website, here . Keep up to date and be inspired via our Connect to Country digital magazines. A collection of royalty-free Aboriginal tourism images and videos are available here . Please see the dropdown menu for Discover Aboriginal Experiences.

The Discover Aboriginal Experiences collective is part of Tourism Australia’s Signature Experiences of Australia program that promotes outstanding tourism experiences within a variety of special categories. This collection showcases a diversity of experiences delivered by the world’s oldest living cultures, creating memorable trips for adventure seekers, culture enthusiasts, foodies and nature lovers, ranging from exploring hidden rock art galleries to foraging for native delicacies, stand-up paddleboarding on culturally significant waterways to bedding down at wilderness lodges in serene natural settings.

Each member of the Discover Aboriginal Experiences collection is considered a world-class leader in Aboriginal tourism, representing local Aboriginal cultures with integrity and authenticity.

Appendix 1: Case studies

Case study 1: mabu buru tours, kimberley, western australia.

Mabu Buru Tours is the brainchild of Johani Mamid, a proud Indigenous man born and raised in Broome in the Kimberley region of Western Australia. His guided experiences take guests on a deep dive into culture, allowing you to savour seasonal fruits, meet local wildlife, and delve into ancient lore and traditions. More than a tour, it’s an immersive cultural journey fostering understanding of Aboriginal life and history. And by learning about it, you’re helping preserve it.

Mabu Buru donates 50 per cent of profits from the ‘3-day Broome Ultimate Aboriginal Culture Expedition’ to the Mabu Buru Foundation , an Aboriginal not-for-profit organisation dedicated to ensuring the survival and preservation of Indigenous culture through continued practice and knowledge sharing.  The Foundation’s objectives include ‘Cultural Practice and Knowledge Sharing’, ‘Training and Employment’ for local Aboriginal people, ‘Cultural Tourism’ experiences, ‘Conservation and Environment’, and ‘Community Engagement.’

Funds are then used via a number of initiatives. Among them are workshops and training programs to facilitate cultural practices, knowledge transmission and skill development among cultural practitioners and emerging talents. “A big goal of ours is to protect knowledge,” says Johani. “We've created a business that helps to bring together corporate Australia and Indigenous products and services and Indigenous businesses, which of course not just helps the corporate Australia companies, it also helps Indigenous businesses to connect with opportunities we find for them and create for them to see.”

The foundation also channels funds into caring for Country by supporting initiatives that contribute to environmental conservation, land management, and the preservation of significant cultural sites and practices. Johani and his team also believe education is key, and they work with schools, organisations and community groups to deliver cultural awareness programs, educational resources and activities that promote a deeper understanding and appreciation of Indigenous culture. And the Foundation helps create jobs and business opportunities for Aboriginal people, promoting entrepreneurship and supporting economic development initiatives that align with cultural values and aspirations.

Case study 2: Sand Dune Adventures, Port Stephens, NSW

There’s something about zooming down the largest shifting sand dunes in the Southern Hemisphere that makes you understand why Port Stephens, a two-hour drive north of Sydney/Warrane, is such a special place, and has been to the Worimi Aboriginal people for millennia. Here, Sand Dune Adventures ’ adrenaline-pumping quad-bike tours take guests across Stockton Bight Sand Dunes in the Worimi Conservation Lands, covering some 4,200 hectares. This part of New South Wales is off-limits to most people – unless you’re with a Worimi guide and have good screaming lungs.

Sand Dune Adventures combines this thrilling quad-biking adventure with unique cultural preservation as you journey through bushland, in and around enormous sand dunes – you’ll learn about traditional Aboriginal food and history, as well as the dunes’ significance to Indigenous communities.

Sand Dune Adventures is owned and operated by the Worimi Local Aboriginal Land Council . Guides are all Worimi peoples; “Our tours are not about profit, they’re about people and sustaining culture,” says Andrew Smith, CEO of the Worimi Local Aboriginal Land Council. More than that, Sand Dune Adventures also funds the Murrook Cultural Centre , who’s purpose it to gather, sustain, protect and teach Aboriginal Culture to all people with an emphasis on Worimi culture. 

“We’ve trained dozens of Aboriginal local people in our business,” says Andrew, noting that the centre now employs more than 45 staff and has grown from having four quad bikes to being able to accommodate more than 100 guests at any given time. “We have a whole series of people who can be Aboriginal tour guides, they can ride the quad bikes, they know the local history, they’re trained in business administration and marketing. All the things required to run a successful business. We also do training in natural resource management… we get our elders and Traditional Owners and knowledge holders out on Country with some of our younger generation and start talking about respect… discovering a combined balance in the ecosystem between our traditional natural resource management values and scientific values.”

This forward-thinking centre is fundamental when it comes to gathering, sustaining, protecting and teaching Aboriginal culture, catering to everyone from school groups to community businesses, government groups and international travellers. It’s also used by the local Aboriginal community as a gathering place. Aboriginal staff teach various facets of culture, ranging from boomerangs to weapons and tools, art and dance, bush food and medicine, craft and more.

The Council also funds a ‘green team’, dedicated to the rehabilitation and regeneration of natural environments alongside urban-based environmental education. Part of this has been the establishment of a nursery at Murrook. “We also have a botanist, ecologist and archaeologist. We do seed collection and create stock supplies for our nursery to sustain native plants indigenous to this region. There are a lot of rehabilitation sites looking for native plants. We’re here with a long-term investment,” says Andrew.

And the return to the community? “Social Adventures Australia worked out that for every $1 we invest into our businesses, it’s giving around a $25 return to a family. That’s a massive investment into our people.”

Case study 3: Maruku Arts, Ulu r u, Northern Territory

In the Northern Territory’s heartland, near the UNESCO World Heritage Site of Ulu r u, Maruku Arts has been contributing to cultural sustainability for more than 35 years, helping to preserve Aboriginal practices like painting, drawing and carving through sharing these traditions with visitors and local employment.

Owned by A n angu (Aboriginal people from the Western and Central Deserts of Australia), Maruku offers the opportunity for guests to peruse an extensive range of paintings and distinctive punu (wooden carvings) by some 900 A n angu artists from 25 different communities, depicting Creation stories and places. Everything is ethically sourced and sold. Beyond supporting these artists via the retail gallery, this outback art centre offers hands-on dot-painting workshops, where you’ll be guided by a local A n angu artist to learn about the traditional art form, symbols and tools, creating your own artwork.

Maruku not only sells art from its local community Mutitjulu at Ulu r u, but also sends staff to remote communities across the NPY regions (Pitjantjajatjarra, Yangkuntjarra, Ngaanyatjarra Lands) of the Northern Territory, South Australia and Western Australia, to purchase woodcarvings – it has been doing this since 1984. In 2019 alone, it invested $1.5 million dollars into 22 different communities across the central and western deserts, funding tour guides and environmental training, among other cultural facets.

“As Maruku Arts celebrates 40 years, it's a testament to our longevity and sustainability,” says Lauren Woodward,  Maruku’s manager cultural tourism and events. “Maruku Arts stands as a beacon of cultural preservation and community empowerment.”

Case Study 4: Wajaana Yaam Adventure Tours, Coffs Harbour, NSW

The Gumbaynggirr people of the New South Wales Mid-North Coast have been paddling its waterways for tens of thousands of years, their ancestors using their knowledge of the tides to travel long distances in dugout canoes carved from hollowed tree trunks. Wajaana Yaam Adventure Tours continues this tradition via its stand-up paddleboarding tours, which are held on three idyllic waterways within the Solitary Islands Marine Park: the OFFICIAL Coffs, Moonee and Red Rock Creeks. While paddling, you can admire the fish darting through crystal clear waters as your Aboriginal guide brings the Dreaming to life, and introduces you to some coastal bush tucker.

But more than being a scenic way to see the coast, Wajaana Yaam has its eye on the future – much of the company’s profits are reinvested from tourism activities back into the community. The company’s founder, Clark Webb, also established Bularri Muurlay Nyanggan Aboriginal Corporation (BMNAC) in 2010, with the overarching goal of sustaining local culture on Country. Over the last 14 years, the organisation has set up three learning centres, among other achievements.

Arguably the biggest achievement to date has been the 2022 opening of the Giingana Gumbaynggirr Freedom School , the first bilingual school in NSW of an Aboriginal Language. “The aim is to revitalise the Gumbaynggirr language, as currently it is listed as endangered, while also education on Aboriginal culture, purpose, traditions and identity,” says Clark. “It’s of the utmost importance that our children can attend a school that holds their culture and the land in the highest regard.”

In 2022, the school opened with 15 students; in 2023 there were 52 students and this year there are 85… with a waiting list. This is a 100 per cent Aboriginal student school.

The BMNAC is also planning to open the Yilaami Eco-Resort, with capacity to cater for 40 guests and including an on-site restaurant and facilities that connect people with an array of cultural tourism experiences. In addition to offering a minimum of 12 permanent jobs, profits from the Yilaami Eco-Resort will provide the main source of funding for the Gumbaynggirr Giingana Freedom School, says Clark.

For media enquiries, contact:  Nicole Mitchell Executive Officer, Discover Aboriginal Experiences T: +61 410 499 525 E: [email protected] W:  discoveraboriginalexperiences.com

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Towards the wall or the bridge a case study of host–guest symbiosis in a chinese heritage tourism site.

1. Introduction

2. literature review, 2.1. what is going on inside heritage tourist destinations as a symbiotic system, 2.2. who plays the role host–guest interaction in heritage tourism destinations, 2.3. how does symbiosis proceed a symbiosis framework for heritage tourist destinations based on host–guest interactions, 3. hypotheses development, 3.1. emotional solidarity and the sense of community belonging, 3.2. the sense of community belonging and willingness to participate in tourism, 4. materials and methods, 4.1. study area, 4.2. data sources and methodology, 4.2.1. stage i qualitative, 4.2.2. stage ii quantitative, 5.1. stage i, 5.1.1. identity qualification.

Every household starts stocking up on fish and ingredients to make crispy fish after 1 October, with too much work to do to prepare it for sale at the end of the year. (V02)

While ancient cities exist worldwide, Guangfu is the only one combining the water culture and Tai Chi culture. There are many young and older people playing Tai Chi at 5 o’clock, Foreigners also learn to play Tai Chi ( Figure 5 ). (V01)

Click here to enlarge figure

We don’t do the specialties such as crispy fish, as there are too many people doing it, and the competition is fierce. (V11)

5.1.2. Bodily Co-Presence

• From 6 a.m. to 8 a.m., most of the shops on the main commercial streets are not open for business, with almost no interaction between residents and tourists, presenting an ordinary scene of Guangfu;
• From 4 p.m. to 6 p.m., a number of tourists and residents go out for activities, and it is the peak period for great interaction between residents and tourists.
• After 8 p.m., residents start to rest and are less active. Most tourists are day-trippers and rarely stay overnight, so residents and tourists seldom have interactions.

5.1.3. Common Focus

5.2. stage ii, 5.2.1. sample description, 5.2.2. reliability test and cfa, 5.2.3. the results of hypothesis testing, 6. discussion, 6.1. theoretical implications, 6.2. practical implications, 7. conclusions, author contributions, data availability statement, acknowledgments, conflicts of interest.

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Share and Cite

Tao, H.; Chen, X.; Sun, Y.; Wang, Z. Towards the Wall or the Bridge? A Case Study of Host–Guest Symbiosis in a Chinese Heritage Tourism Site. Land 2024 , 13 , 1315. https://doi.org/10.3390/land13081315

Tao H, Chen X, Sun Y, Wang Z. Towards the Wall or the Bridge? A Case Study of Host–Guest Symbiosis in a Chinese Heritage Tourism Site. Land . 2024; 13(8):1315. https://doi.org/10.3390/land13081315

Tao, Hui, Xiaoying Chen, Yehong Sun, and Zhe Wang. 2024. "Towards the Wall or the Bridge? A Case Study of Host–Guest Symbiosis in a Chinese Heritage Tourism Site" Land 13, no. 8: 1315. https://doi.org/10.3390/land13081315

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