Exploring dementia service gaps and barriers in the Australian Capital Territory: a qualitative study

Introduction

The analysis of unmet needs is a major priority in healthcare planning and policy, referring to the gap between care received and actual care required. To analyse unmet needs, it is necessary to combine information on demand (prevalence and reported care needs) and supply (availability, access to services, and reported barriers). In dementia care, this should include the description of the whole system of care for dementia beyond the health sector as it is inclusive of the needs of care partners and health conditions in addition to dementia (Mansfield et al. 2023). Dementia refers to a range of symptoms resulting from disorders affecting the brain. Although dementia is experienced differently by each individual there are some common impacts to memory, emotional state, behaviour, communication, and the ability to carry out daily activities. Albeit being more prevalent among older people, dementia is not considered a normal aspect of ageing. Currently, dementia affects over 400,000 Australians, with Alzheimer’s disease being the most common type (Australian Institute of Health and Welfare 2024a).

In Australia, recommendations for appropriate treatment and care should be offered following a dementia diagnosis (Foxe et al. 2024). This can include providing information, care planning, and rehabilitation and reablement services. However, many people with dementia and their care partners often learn about services through their own research and word of mouth, or only after an adverse incident (NHMRC National Institute for Dementia Research Special Interest Group in Rehabilitation and Dementia 2021; Cations et al. 2019). Furthermore, rehabilitation, peer support, and education are often beyond the scope of the public health system and facilitated by non-government organisations and accessed after being identified by the person with dementia, care partner, or family members (Cations et al. 2019).

Inadequacies in dementia care services have been identified on a national level. The National Dementia Action Plan (Department of Health and Aged Care 2024) and the Royal Commission into Aged Care Quality and Safety Final Report (Volume 1: Summary and Recommendations) (Royal Commission Into Aged Care Quality and Safety 2021) both highlight priorities for improving dementia services in Australia. The National Dementia Action Plan 2024–2034 addresses post-diagnostic support through: improving dementia diagnosis and post-diagnostic care and support (Action 4), and enhancing treatment, coordination, and support for people living with dementia (Action 5), which together aim to create better integrated services and systems for those affected by dementia (Department of Health and Aged Care 2024). Of the 148 recommendations made by the Royal Commission, five were dementia-specific (Royal Commission Into Aged Care Quality and Safety 2021). Notably, recommendation 15 refers to establishing a ‘comprehensive, clear and accessible post-diagnosis support pathway’, which includes information and advice on support services; access to peer support networks; education and counselling; and planning for continued independent living, including respite for care partners.

In 2024, there was an estimated 5900 people with dementia in the Australian Capital Territory (ACT), a number projected to increase to 12,300 people by 2054 (Dementia Australia 2023). The total costs of dementia in the ACT were estimated to be A$111 million in 2016 and projected to increase to A$236 million in 2036 (Brown et al. 2017). In 2018, the burden of dementia was 6.6 disability-adjusted life years (DALYs) per 1000 people in the ACT compared to 6.2 DALYs in New South Wales (NSW) and 5.8 DALYs in Victoria (Australian Institute of Health and Welfare 2024a). An estimated 20% of people with dementia in the ACT live in residential care, which is lower than the national rate of 35% (Australian Institute of Health and Welfare 2024a), suggesting higher dependence on informal care partners living in the community. The ACT contributes to 1.9% of Dementia Support Australia referrals while only accounting for 1.3% of total dementia cases in Australia (Australian Institute of Health and Welfare 2024a).

Unmet needs should be estimated regionally to avoid the ecological fallacy that occurs when inferences are made based on aggregate state and national data (Yoshikawa et al. 2023). The ACT provides a unique case to analyse service patterns due to its regionality and governance characteristics. In 2022, ACT Health released a Health Services Plan for 2022–2030 identifying dementia as an area of focus (ACT Government 2022). This included reducing the length of hospital stays for older people, including admissions from people living in residential care; workforce education and training to improve the care of people with dementia; and a stepped care model for people experiencing behavioural and psychological symptoms of dementia (BPSD; from here referred to as ‘changed behaviours’). The ACT Health Quality Strategy 2018–2028 also references early identification and care of people with cognitive impairment within the strategic priority of effective care. The ACT health system serves a portion of southeastern NSW residents as the primary tertiary referral centre and provider of specialists in the region, with 18% of hospital separations being from outside the ACT (ACT Government 2022).

We previously published findings on dementia services in the ACT, demonstrating that out of the 107 services offered, only 29 were dementia-specific (Tabatabaei-Jafari et al. 2024). Of these, 18 were residential care services with gaps identified in dementia-specific services, including daycare and respite care. This study took an internationally standardised approach to assess the service delivery system for dementia in the ACT by collecting objective data from service providers. To expand upon this work, the present study aimed to identify service gaps and unmet needs in dementia care in the ACT, as viewed by service providers to better inform decision-makers to implement evidence-based service improvements.

Methods

Results

A final sample of 29 senior staff, representing 26 service providers out of 42 (61.9%), answered the additional questions and provided responses for analysis. They were representatives of aged care providers (n = 13) including 11 who provided residential care; senior management from non-government organisations (n = 8); management and senior clinicians from government organisations who provide health services including hospitals (n = 7); and a director of a prominent general practice multidisciplinary clinic (n = 1). Seventeen representatives participated online (58.6%) and the remainder were conducted in-person. Twenty-four of the 29 representatives were female (82.8%).

Results are presented based on the area the participant was employed: A = aged care; C = clinic; G = government organisation; and N = non-government organisation (NGO). Within each area, participants were assigned a number. The broad services provided by each are presented in Table 1. Two organisations were represented by multiple staff members (1. N4–N6; 2. N7–N8).

Content analysis identified 17 themes that were discussed and refined to six final themes as follows: (1) concerns with existing dementia care services; (2) concerns with primary care; (3) a lack of dementia-appropriate services; (4) workforce shortages and limited training; (5) funding as a barrier to access and collaboration between services; and (6) lack of understanding of dementia. Exemplar quotes are presented in text, with (square brackets) to denote editing for readability.

Discussion

The investigation of service gaps in dementia service provision in the ACT revealed six themes. Overall, participants expressed several concerns about current services for people with dementia including a lack of capacity and services for people experiencing changed behaviours, a need for greater respite options, workforce-related challenges, complexities with funding models and creating dementia-appropriate services, and the persistent issue of lack of public understanding of dementia and the available services and care pathways. These qualitative findings align with our previous work that quantitatively identified that many dementia services were actually delivered by general services, highlighting a gap for specialised services to support people with dementia to live independently in the community (Tabatabaei-Jafari et al. 2024).

The lack of coordination between health and social care services, and working in silos, were acknowledged as key contributors to dementia care gaps in the ACT. These result in missed opportunities to delay dementia progression (Robertshaw and Cross 2019). Lack of timely diagnosis by GPs and referrals to medical specialists and dementia-specific services were also seen as missed opportunities for early intervention and to ensure supports are in place to understand what services and support are available (Draper et al. 2018). This often leads to confusion for people with dementia and their care partners about the most optimal course of action post-diagnosis (NHMRC National Institute for Dementia Research Special Interest Group in Rehabilitation and Dementia 2021; Robertshaw and Cross 2019). As GPs are typically the first point of contact for people with cognitive concerns, the need for improvements to achieve timely dementia diagnosis is well-acknowledged (NHMRC National Institute for Dementia Research Special Interest Group in Rehabilitation and Dementia 2021; Foxe et al. 2024). The National Dementia Action Plan 2024–2034 recommends GPs use dementia-specific support and referral pathways during consultations to increase awareness of services and ensure timely referral to memory clinics when necessary (Department of Health and Aged Care 2024). To achieve true coordination of services and clear pathways for people at different stages of dementia in Australia, support and referral pathways should be updated regularly to equip/resource GPs and geriatricians to facilitate coordination and cross-referrals between service providers.

A coordinated and integrated approach to service provision has the potential to maintain quality of life and reduce neuropsychiatric symptoms of people with dementia (Draper et al. 2018; Robertshaw and Cross 2019). Participants recognised a gap in ACT services for people experiencing changed behaviours, including residential care providers that believed they neither had the support, skills, or environment to adequately address care of people with more complex needs. Participants believed this was contributing to longer hospitalisations and reduced staff capacity in acute care, thus increasing overall pressure on the public health system. The ACT has two Specialist Dementia Care program sites for people experiencing severe changed behaviours for up to 16 people, but these were seen not to be sufficient.

Inadequate funding, workforce shortages, and a lack of appropriate dementia-specific training were seen to be contributing to gaps in services. These findings echo the workforce issues present in the ACT in 2007, regarding lack of training and self-efficacy of residential care staff in caring for people with dementia, which is further exacerbated by the continual ‘de-professionalisation’ of the sector to compensate for workforce supply issues (Jones et al. 2007). Given recent changes in mandated care hours for nurses, personal care workers, and assistants in residential care, questions remain regarding ongoing reforms including access to allied health (Gibson and Isbel 2024).

Participants highlighted a need for more dementia-appropriate services in the ACT, specifically respite and dementia daycare services. These gaps were highlighted in our previous work (Tabatabaei-Jafari et al. 2024). The inability to access respite can contribute to reduced care partner wellbeing and increased perceived burden and burnout (Engel et al. 2022). Access to residential respite and peer support groups has psychological and social benefits for care partners and provides an informal peer support network (Engel et al. 2022; D’Cunha et al. 2023a). Small-scale, home-like options are often preferred for respite by people with dementia by their care partners, particularly for people with young onset dementia (Harkin et al. 2020). Community buildings and the subsequent formation of informal support groups were identified gaps in the ACT dementia services landscape. Greater opportunities for peer support, particularly in informal advice and emotional support, have potential to reduce care partner distress and enable word of mouth regarding existing services (D’Cunha et al. 2023a).

The findings align with recommendations to improve access to dementia care training and additional funding for GPs to have longer appointments with older people (Royal Commission Into Aged Care Quality and Safety 2021). Barriers to completing dementia-specific education and training include limited access, awareness of available training, capacity to undertake and complete training due to cost, and support from management (Annear 2018). In addition, university-level education and dementia-specific education are predictive of higher dementia knowledge (Annear 2018). Therefore, the future health workforce must be better equipped to work with people with dementia (Haydon et al. 2023; Traynor et al. 2024) at both generalist and specialist levels of care. Although dementia workforce quality is essential, workforce quantity and supply must be addressed, with dementia care viewed as less preferable than other healthcare roles (NHMRC National Institute for Dementia Research Special Interest Group in Rehabilitation and Dementia 2021; Royal Commission Into Aged Care Quality and Safety 2021). The National Dementia Action Plan (Department of Health and Aged Care 2024) has the potential to trigger action towards resolving some of these concerns and work to increase the competency of the specialised dementia workforce and desirability of the career path (Traynor et al. 2024). Building the capability of the dementia care workforce in Australia is highlighted in the plan with a focus on ensuring staff have the skills and knowledge to better understand and respond to the needs of people affected by dementia, including those with complex dementia symptoms (Department of Health and Aged Care 2024).

Participants raised concerns regarding understanding and awareness of dementia across the sector and among the public. A finding in the present study was people not receiving timely diagnoses and presenting to services during a crisis, which contributed to a strain on resources. Lack of understanding and awareness of dementia can contribute to inaction and uncertainty regarding dementia symptoms (NHMRC National Institute for Dementia Research Special Interest Group in Rehabilitation and Dementia 2021). Poor knowledge surrounding dementia also contributes to delay in seeking support, and Australians generally have poor knowledge about dementia and may not be motivated to reduce dementia risk (Zheng et al. 2021).

While the current study focuses on the ACT, participants suggested these issues are not unique to the territory but are a symptom of an inadequate dementia response at a national level (NHMRC National Institute for Dementia Research Special Interest Group in Rehabilitation and Dementia 2021; McGrath et al. 2021). As such, broader action is needed to address these identified issues fully. Several issues raised in this study align with recommendations in the final report of the Royal Commission into Aged Care Quality and Safety, including peer support networks as a fundamental pillar for post-diagnostic support; the ability for care partners to access regular and planned respite, including for people experiencing changed behaviours; and importance of appropriate accommodation for people with severe changed behaviours (Royal Commission Into Aged Care Quality and Safety 2021). The National Dementia Action Plan 2024–2034 aims to expand awareness by partnering with people with dementia and using lived experience storytelling as part of co-designing and testing dementia-related materials and communications (Department of Health and Aged Care 2024). To increase dementia awareness, materials and communications should be culturally appropriate, provided in multiple languages, and with increased access to interpreters, as people may be less likely to access services and care due to cultural expectations and preferences.

Nation-wide initiatives to improve dementia services and care are underway. These include an update of the Australia Dementia Clinical Practice Guidelines that were published in 2016; a public help-seeking campaign called Face Dementia that aims to improve detection, diagnosis, and management in primary care (https://facedementia.au/en/); the AIHW National Dementia Data Improvement Plan 2023–2034 (Australian Institute of Health and Welfare 2024b); continued data collection and analysis as part of the Australian Dementia Network Clinical Quality Registry (https://www.australiandementianetwork.org.au/initiatives/clinical-quality-registry/); and the StepUp for Dementia Research participant and engagement service (https://www.stepupfordementiaresearch.org.au/). Despite limited published literature, there are several recent developments aimed at enhancing dementia services in the ACT that align with the aims of the National Dementia Action Plan 2024–2034. Work is in progress to develop a stepped care model for people with changed behaviours in the ACT. A multicomponent rehabilitation intervention for people with dementia and care partners living in the community, named the Sustainable Personalised Interventions for Cognition, Care and Engagement (SPICE) program, has been running since 2022 at a public rehabilitation hospital (D’Cunha et al. 2023a). The ACT government has recently recognised small-scale dementia care as an option to meet some of the gaps in residential care by planning a dementia-specific residential care village. In 2021, a small-scale dementia home for people living with young onset dementia opened in the community, operated by Community Home Australia (D’Cunha et al. 2023b), who now have several homes and a day respite centre in the ACT. Research in the ACT has contributed to a national rollout embedding pharmacists in residential care (Haider et al. 2023). Work to increase nursing students and graduate nurse competencies in gerontological nursing, including dementia care, is also progressing (Traynor et al. 2024).

The current study has several limitations. Although this paper offers valuable insights into dementia services and the perspectives of service providers involved in dementia care in the region, it does not capture the views of people with dementia and care partners, as they were not included in the study design. A novel aspect of this study is that the majority of insights from service providers may not be recognised by people impacted by dementia. Interviews were conducted during the COVID-19 pandemic, which may have influenced some responses as services were in the process of rebuilding their capacity. The inclusion of both group and individual interview formats may have compromised data quality, as group dynamics can lead to skewed discussions and suppressed perspectives when multiple representatives participate simultaneously. While the sample encompassed most of the major health and aged care service providers for people with dementia in the ACT region, it is not exhaustive. In addition, the findings may not be generalisable to all services or other regions of Australia. However, the method used for this regional evaluation could be extended nationwide to provide a standard description of the supply side of unmet needs (Tabatabaei-Jafari et al. 2024). This study shows the usability of combining the qualitative analysis of gaps reported by providers and managers, together with the use of an international tool for a standard description of local service availability.

This key information could complement national data being collected as part of the multi-stakeholder AIHW National Dementia Data Improvement Plan 2023–2034 and the associated National Dementia Action Plan indicator dashboard (Australian Institute of Health and Welfare 2024c). It will be critical for the views of service providers, staff, and people with dementia and their care partners and families to be authentically included in the implementation of the National Dementia Action Plan 2024–2034 to identify and understand the gaps in current services. A coordinated and integrated effort across Australia will be required to develop and implement comprehensive dementia services that meet the needs of people with dementia, care partners, and the dementia care workforce.

Conclusions

Interviews with health and aged care service providers for people with dementia in the ACT revealed concerns about current dementia services. A coordinated, collaborative, and integrated approach between service providers was seen a priority to reduce service gaps, particularly for people experiencing changed behaviours. Lack of funding, workforce shortages, and training were an interrelated concern contributing to services often running at capacity. Increased respite services, community-based peer support, and timely diagnosis and referral, particularly by GPs, were viewed as priorities to improve outcomes for people with dementia and care partners. However, workforce and public understanding of dementia impacted on these aspects. Further work is needed in the ACT and nationally to assist people with dementia and their care partners in maintaining quality of life and remaining independent while living in the community.