Geographical variation in health service use by people living with dementia

Dementia is an umbrella term for a group of conditions that cause progressive and irreversible impairment to brain function. In 2022, an estimated 401,300 Australians were living with dementia (see Dementia in Australia). Dementia is a leading cause of death and burden of disease in Australia, but there is variability in access to appropriate dementia care across Australia (Royal Commission 2021). 

Examining geographical variation is a common tool for looking at how people living in different areas are affected by a condition such as dementia, and whether there are any regional differences that could be improved at the community or national level.

This study used linked data in the National Integrated Health Services Information (NIHSI) to explore geographical variation in health service and residential respite care use among people living with dementia in the community and in permanent residential aged care in 2019 (AIHW NIHSI 2020–21).

• The dementia study cohort refers to 158,730 people aged 30 and over who were living in Australia in 2019 and had a dementia record in the linked data.
• Health and aged care services examined include general practitioner (GP), specialist, nursing and allied health attendances, medicines dispensed through the Pharmaceutical Benefits Scheme (PBS) and Repatriation PBS (RPBS), emergency department (ED) visits, hospital stays, and residential respite care.

Information is presented at 4 geographical levels:

• remoteness area
• socioeconomic area
• Statistical Area level 4 (SA4) region
• state/territory.

Data are also presented for socioeconomic areas within Major cities and Outside major cities.

Findings

In Australia, a person will usually first see a GP about dementia symptoms, and then be referred to a specialist to confirm a diagnosis and assess if they are eligible for treatment with dementia-specific medication. Access to specialists is affected by many factors, including availability, location, cost and cultural safety (AIHW 2020b; AIHW 2023b; Nolan-Isles et al. 2021).

The percentage of people living with dementia in the community who had one or more specialist attendances in 2019:

• decreased with increasing remoteness:
  • from 68% of people in Major cities to 62% of people in Inner regional areas and 45% in Remote and very remote areas
• decreased with increasing disadvantage:
  • from 73% of people living in the highest socioeconomic areas to 61% of people in the lowest socioeconomic areas.

At the SA4 level, specialist attendances ranged from 40% to 84% of people.

Of those who saw a specialist, people in the lowest socioeconomic areas and regional and remote areas had fewer specialist attendances per person, with rates decreasing from 4.8 attendances per person living in the highest socioeconomic areas of Major cities to 2.5 per person in Remote and very remote areas.

People living in Remote and very remote areas were also less likely to have a type of dementia (such as Alzheimer’s disease or vascular dementia) recorded in the linked data. This may be related to misclassification of dementia type in the administrative data but may also suggest poorer access to diagnostic facilities that allow more specialised management (Waller et al. 2021).

People living with dementia in residential aged care were less likely to have a specialist attendance than people living in the community (this is a common pattern for all people living in aged care (AIHW 2020a; Royal Commission 2021)), but the overall patterns of attendance by remoteness and socioeconomic area were similar.

While there is currently no known cure for dementia, there are 4 medications – donepezil, galantamine, rivastigmine and memantine – that may assist in managing dementia symptoms and slowing dementia progression (see Dementia-specific medications). In Australia, these medications are subsidised under the PBS and RPBS for people with a specialist-confirmed diagnosis of Alzheimer's disease (DUSC 2016). These medications are not subsidised for treating people with other types of dementia.

The percentage of people living with dementia in the community who were dispensed dementia-specific medications at least once in 2019:

• decreased with increasing remoteness
  • from 39% of people living with dementia living in Major cities to 23% of people in Remote and very remote areas
• decreased with increasing disadvantage
  • from 44% of people in the highest socioeconomic areas to 32% of people in the lowest socioeconomic areas
  • a similar pattern was observed within Major cities and Outside major cities.

At the SA4 level, dementia-specific medication dispensing ranged from 18% to 56% of people.

Women were more likely than men to have dementia-specific medication dispensed at most geographies.

People living with dementia in residential aged care were less likely to be dispensed dementia-specific medication than people living in the community, but the overall patterns of dispensing by remoteness and socioeconomic area were similar.

The observed variation in dispensing of dementia-specific medications may reflect broader issues, including that people in the lowest socioeconomic areas and regional and remote areas often have:

• reduced access to medical specialists who primarily diagnose the type of dementia and initially prescribe these medications
• symptoms for a longer period of time before seeking healthcare advice and/or receiving a diagnosis (Bryant et al. 2021; Greenway-Crombie et al. 2012). This delayed diagnosis may occur after the early stages of dementia, when the medications are most beneficial.

Strategies to improve access to dementia treatment should remain a priority, particularly as the use of current therapies may have additional clinical benefits (Xu et al. 2021). Variation in access to treatment will become more important to address as newer, more expensive, therapies are developed (Mintun et al. 2021; van Dyck et al. 2023).

GP chronic disease management attendances (also referred to as “CDM plans”) are provided by a patient’s usual medical practitioner to help coordinate care (Services Australia 2023).

The percentage of people living with dementia in the community who had a CDM plan in 2019:

• increased with increasing disadvantage in Major cities:
  • from 44% of people living in the highest socioeconomic areas to 53% of people in the lowest socioeconomic areas.

This may be related to patient factors, such as higher rates of comorbidities which require more time for appropriate management (for example, diabetes, respiratory or cardiovascular conditions), as well as health system factors such as using CDM plans to enable access to Medicare-subsidised allied health care.

Conversely, the percentage of people who had a CDM plan decreased with increasing remoteness:

• from 51% in Major cities and 53% in Inner regional areas to 43% in Remote and very remote areas

which may relate to the reduced availability of GPs and other health care professionals in more remote areas of Australia (AIHW 2023b), and the associated use of locum doctors who are less likely to have an ongoing relationship with patients.

At the SA4 level, the percentage of people who had a CDM plan ranged from 32% to 68%.

People living with dementia in residential aged care had similar overall patterns of CDM attendances by remoteness and socioeconomic area as people living in the community.

A hospital stay can be challenging for people living with dementia, as the environment may exacerbate symptoms of dementia, and there is a greater risk of adverse events and preventable complications (Fogg et al. 2018).

People living in disadvantaged areas often have higher rates of hospitalisation (AIHW 2022). In 2019, people living with dementia in the lowest socioeconomic areas had:

• higher rates of ED visits and public hospital stays when living in the community, both within Major cities and Outside major cities
• higher rates of ED visits and public hospital stays when living in residential aged care within Major cities

compared with people living in the highest socioeconomic areas.

People living with dementia in the community in Remote and very remote areas were:

• less likely to have an ED visit (28% of people) in 2019, but
• more likely to have a hospital stay (49%)

than people living in Major cities (41% and 37%, respectively).

Factors contributing to this variation may include different hospital admitting rights (where GPs in rural and remote areas can admit people directly to hospital instead of admission through the ED), and the use of hospitals for respite care if no other facilities are available, or to enable monitoring of a patient who would otherwise have to travel long distances between hospital and their home.

Residential respite care can provide a person with dementia and their carers with a break from their usual care arrangements, or it can be used during emergencies, or by people trying out or waiting for a permanent residential aged care placement (AIHW 2023a).

Previous studies have shown that people living with dementia often use residential respite care as part of a transition to permanent residential aged care (AIHW 2023a, 2023c). In this study, 70% of people living with dementia used residential respite care in the 12 months before entry to permanent residential aged care. At the SA4 level, the use of residential respite care in the 12 months before entry to permanent care ranged from 40% to 94% of people.

Respite care is most effective when accessed early and regularly, however, early uptake is generally low (Carers NSW 2021; Neville et al. 2015; Royal Commission 2021). An average of 5.4% of people who did not enter permanent care in the subsequent 12 months used residential respite care in 2019. Rates were lowest among people living in Remote and very remote areas (3.3%) and highest in Inner regional areas (6.2%). Although people may have used other forms of respite care (which could not be analysed in this study), these findings suggest that residential respite care is mostly used in the lead up to entry to permanent care.

Inappropriate prescribing of antipsychotics is a major problem among people living in residential aged care and a key issue raised in the Royal Commission into Aged Care Quality and Safety (Royal Commission 2021). Antipsychotics should only be prescribed to people living with dementia if the use of non-pharmacological treatments has been unsuccessful (Dementia Australia 2020; Guideline Adaptation Committee 2016).

Among people living with dementia in residential aged care in 2019:

• 33% were dispensed antipsychotics at least once
• 23% were dispensed antipsychotics 4 times or more.

There were no clear patterns of variation by remoteness or socioeconomic area for people living in residential aged care, but at the SA4 level:

• 25% to 41% of people were dispensed antipsychotics at least once
• 16% to 29% of people were dispensed antipsychotics 4 times or more.

Men living in residential aged care were more likely than women to be dispensed antipsychotics.

It should be noted that these 2019 data do not reflect changes made to the PBS in 2020 for prescribing of the antipsychotic, risperidone, for managing changed behaviours (see Box 8.2 under Dispensing of antipsychotics to people with dementia).