Dementia data gaps and improvement activities
Specific data improvement activities are required to improve dementia data for Australia.
This section presents a summary of existing dementia data gaps for Australia and an overview of the type of data improvement activities to address each gap. How activities will be prioritised and who is responsible for undertaking each activity is outlined in Overview of data improvement activities.
The following pages discuss current data gaps and detail specific activities needed to improve key data on:
- Risk and protective factors for dementia
- Dementia awareness and stigma
- Dementia prevalence and incidence
- Timeliness of dementia diagnosis
- Dementia type
- Dementia severity and progression
- Dementia diagnosis and management
- Collection and reporting of dementia and other health conditions in aged care
- First Nations people-specific health care data on dementia
- Other care and support services used by people with dementia and their carers
- The workforce treating and caring for people with dementia
- Comorbidities in people with dementia
- Informal carers of people with dementia, including their needs and outcomes
- Direct and indirect costs of dementia to the Australian economy.
Many activities are dependent on investment in dementia data development and research, national data developments in aged care, palliative care, primary care and the disability sector, advancements in data linkage infrastructure, and collaboration across government, dementia education and service providers.
Implementing these activities are required to meet the following 10-year goals of this plan. The goals are for Australia to have:
- robust dementia prevalence and incidence data
- national dementia data available and reported regularly in key monitoring areas
- improved dementia data in priority population groups
- dementia data within wider national data linkages
- harmonised dementia data collected across sources.
Summary of existing dementia data gaps
Understanding existing dementia data gaps for Australia is the first step in establishing what data improvement activities are needed and the investment required. The magnitude of current data gaps and the extent to which this impacts the ability to improve the lives of people with dementia and their carers informs the key goals of this plan (see What are the aims and goals of the plan? for more detail).
Overall, there were 14 specific dementia data gaps identified through consultation with the department, the AIHW Dementia Expert Advisory Group, and data monitoring needs for theNational Dementia Action Plan (NDAP). See Enablers to support success of this plan for more information on the NDAP and how this influenced the development of this plan.
|Current data gap||Impact on dementia monitoring|
|Risk and protective factors for dementia||Incomplete national dementia risk factor data affects our understanding of the contribution of risk factors to dementia incidence and prevalence in Australia and how this impacts trends over time. Having robust and up-to-date information on risk and protective factors is needed to inform primary prevention policies.|
As there is currently no cure or effective treatment for dementia, reducing lifestyle risk factors in the population is the way to reduce, delay or prevent dementia (Alzheimer's Association 2018). In addition, knowledge in this area will continue to evolve with new research. Therefore, risk and protective factors for dementia is a key area to monitor.
|Dementia awareness and stigma||The lack of national data on the Australian community’s knowledge and awareness of dementia, as well as attitudes towards people with dementia, impacts data required to inform and evaluate plans and policies to reduce the risk of dementia and improve outcomes for people with dementia and their carers. National data on how people with dementia and their carers experience stigma are required to inform and evaluate strategies and policies targeted at reducing or eliminating stigma.|
Better dementia awareness, reduced stigma, and knowing the benefits of seeking early diagnosis, treatment and support can lead to people seeking earlier professional help and improved outcomes for people living with dementia.
|Dementia prevalence and incidence||Not knowing the exact number of Australians living with dementia and the number of new cases of dementia each year means we do not truly understand the impact of dementia in Australia. This impacts government and service providers’ ability to plan and evaluate existing services and supports, design and implement new policies, and adequately plan for the future.|
|Timeliness of dementia diagnosis||Data on timely diagnosis of dementia from onset of symptoms to obtaining a diagnosis in primary or secondary care are important as they may facilitate early intervention, action on modifiable risk factors, better management of symptoms, support for people living with dementia and their carers, maintenance of independence and postponement of entry into residential aged care (WHO 2022).|
|Dementia type||Data on the different types of dementia will provide information on which types are most prevalent in Australia and where we need more research, policy development or services. Further, understanding dementia types which can be prevented or delayed through lifestyle changes and how outcomes differ by dementia type may lead to different prevention, treatment and service recommendations and planning for those types.|
|Dementia severity and progression||At present there is a lack of data on people in the early stages of dementia or cognitive impairment, including the diagnosis and early disease management process. Current data sources tend to capture people with more severe dementia, when they engage with hospital and aged care services. This impacts our ability to understand the trajectory of dementia, what interventions lead to reduced severity and how best to plan services for those with increased care needs.|
Limited data on dementia severity and rate of progression also impacts selecting treatment options, selecting patients into clinical trials and/or assessing responses to treatment (O'Bryant et al. 2008).
|Dementia diagnosis and management||A lack of national data on the diagnosis and management of dementia by primary and secondary care providers (in particular, data from general practitioners (GPs) and specialists such as geriatricians) is the biggest single data gap affecting our understanding of dementia in Australia (AIHW 2020a).|
Existing data are currently unable to capture the complexity of care and support often required for people living with dementia. This includes how they transition between care settings, such as between home, respite, hospital, residential aged care systems and, potentially, palliative care services within community or aged care settings (AIHW 2020b). These transitions are important to understand to improve the quality of care provided to people with dementia.
|Collection and reporting of dementia and other health conditions in aged care data||Aged care services are important for supporting older Australians to remain living in their own home for as long as possible, and for providing consistent care and support when a person needs to enter residential aged care. However, there are limited data on dementia in current aged care data. This impacts government and service providers’ ability to plan and evaluate existing aged care services and adequately plan aged care for the future.|
|First Nations people-specific health care data on dementia||The lack of national data on people with dementia who access culturally appropriate health and aged care services designed for First Nations people is a large gap. This particularly impacts our understanding of the impact of dementia, health outcomes and the use of these services in remote areas where these may be the only accessible services for the local population (AIHW 2016). This impacts government and service providers’ ability to plan and evaluate existing services and adequately plan care for the future.|
|Other care and support services used by people with dementia and their carers||People with dementia and their carers may access a range of services in addition to primary and aged care, such as dementia-specific support services, disability support services, respite care, and palliative care. Better measures of the types and quality of care services provided is important to better understand support for people recently diagnosed, patient experiences with the health system (including access and barriers), and how variations in care impact health outcomes. Monitoring the patterns of service use by people with dementia and their carers can indicate demand and is essential for service planning. It can also help assess whether services are meeting needs and identify opportunities to improve outcomes for people with dementia and their carers.|
|The workforce treating and caring for people with dementia||Building a better understanding of the composition of the workforce treating, supporting and caring for people with dementia in and beyond aged care, and their education and training, would provide the necessary information to adequately plan care for the future. This would also help monitor workforce knowledge to provide high-quality, person-centred care for patients and clients with dementia and where greater education is required.|
|Comorbidities in people with dementia||Understanding the presence of existing health conditions (comorbidities) among people with dementia is important because the presence of comorbidities increases the complexity in managing their co-existing condition/s as well as their dementia. Comorbidities can also be risk factors that impact dementia progression.|
|Informal carers of people living with dementia, including their needs and outcomes||Information on carers of people with dementia is important for policy development and service planning because dementia not only affects individuals with the condition but also has a substantial impact on their families and carer/s as many of these informal carers help with activities of daily living for people with dementia. Therefore, it is important to measure how many informal carers there are for people with dementia; the characteristics of these carers; the type of assistance that they provide; the impact of their caring role; and areas of unmet support. This can inform the types of programs needed to support informal carers, and how to complement this with formal carers amid a shortage of disability and aged care workers.|
|Direct and indirect costs of dementia to the Australian economy||There is no single source of data to estimate total expenditure due to dementia. Australia’s response to dementia requires regular monitoring and reporting of both the direct costs and the substantial indirect costs, such as informal care, lost productivity, and income support provided to people with dementia and/or their carers.|
The lack of comprehensive data on how many Australians are living with dementia and how this differs across Australia is a significant gap. There is no single data source that can provide exactly how many people are living with dementia (prevalence) and the number of people newly diagnosed with dementia each year (incidence). Estimating dementia incidence is difficult because dementia is a gradual evolution of signs and symptoms and requires knowing the date of diagnosis (AIHW 2023). Robust data on dementia prevalence and incidence are essential for monitoring dementia in every aspect, and why improving these data in the next 10 years is a goal of this plan.
As we do not have a great understanding of dementia prevalence at a national level, there are limited data on dementia in people from diverse backgrounds and/or with specific characteristics. These include:
- data on First Nations people
- culturally and linguistically diverse (CALD) populations
- people with younger onset dementia
- lesbian, gay, bisexual, transgender, intersex, queer, asexual or sexually or gender diverse (LGBTIQ+) communities
- people living in regional and remote areas
- people with disability
- childhood dementia
- people who are homeless or at risk of homelessness
- people who develop dementia in prisons.
Data are also limited on people living with dementia without support networks or where the support networks are aged under 18, as may be the case in single-parent households where the parent has younger onset dementia. These groups have unique needs and may face barriers to equitable access to services and support. Data on dementia among priority population groups are essential to understand the impact of this condition and whether these groups are receiving the required services and support. This is why improving dementia data in priority population groups in the next 10 years is another key goal of this plan.
Direct improvements to the content and scope of available national data are only one component. There are broader system and policy-level barriers that need to be overcome, such as a lack of technological infrastructure and informatics mapping, and fragmented service navigation (Burkinshaw et al. 2022). See Enablers for the National Dementia Data Improvement Plan for more detail.
AIHW (Australian Institute of Health and Welfare) (2016) Australia's health 2016, AIHW, Australian Government, accessed 28 July 2023.
AIHW (2020a) Dementia data gaps and opportunities, AIHW, Australian Government, accessed 28 July 2023.
AIHW (2020b) Australia’s health 2020: data insights, AIHW, Australian Government, accessed 28 July 2023.
AIHW (2023) Dementia in Australia, AIHW, Australian Government, accessed 23 February 2023.
Alzheimer's Association (2018) ‘2018 Alzheimer's disease facts and figures’, Alzheimer's & Dementia, 14:367–429, doi:10.1016/j.jalz.2018.02.001.
Burkinshaw K, Tsourtos G and Cations M (2022) 'System and policy-level barriers and facilitators for timely and accurate diagnosis of young onset dementia', International Journal of Geriatric Psychiatry, e5859, doi:10.1002/gps.5859.
O'Bryant SE, Waring SC, Cullum CM, Hall J, Lacritz L, Massman PJ, et al. (2008) 'Staging dementia using Clinical Dementia Rating Scale Sum of Boxes scores: a Texas Alzheimer's research consortium study', Archives of Neurology, 65:1091–1095, doi:10.1001/archneur.65.8.1091.
WHO (World Health Organization) (2022) A blueprint for dementia research, Geneva: WHO, accessed 28 July 2023.