Health services used by people with younger onset dementia
The following sections present statistics and information on:
Services provided by health professionals, including primary health care providers (such as general practitioners, or GPs), other medical specialists (such as geriatricians and psychiatrists) and allied health professionals (such as physiotherapists and speech pathologists), as well as prescribed medications, play a crucial role in the diagnosis, treatment and/or management of dementia.
For more information on health service use by people with dementia of all ages, see Health services.
Primary health care services used by people with younger onset dementia
The following section presents data that are currently available on the use of primary health care services by people with dementia through services provided under the Medicare Benefits Schedule (MBS).
The NHDH dementia cohort includes everyone with at least one of the following in the NHDH between 1 July 2016 to 30 June 2022:
- A dementia-specific medication dispensed through the PBS/RPBS.
- A principal or additional diagnosis of dementia in an emergency department (ED) presentation or hospital admission.
- A supplementary chronic code of dementia in a hospital admission.
- A record of dementia in datasets from the National Aged Care Data Clearinghouse (NACDC) including the Aged Care Assessment Program (ACAP) and National Screening Assessment Form (NSAF).
People recorded as having dementia as their underlying or additional cause of death between 1 July 2021 and 31 December 2022 were also included.
For these analyses, the NHDH dementia cohort was also restricted to people who had at least one Medicare Benefits Schedule (MBS) record during the 2021–22 financial year and who did not have missing age information. Results in this section focus on those aged under 65.
Dementia diagnostic information is not available in the MBS, so it is not possible to distinguish between dementia-specific services and services for the management of other health issues. These data are sourced from linked health and aged care services data in the National Health Data Hub (AIHW NHDH 2021–22). Identification of people with dementia depends on their use of other health and aged care services (for example, through admission to hospital). This means that the NHDH dementia cohort will not include all younger people with dementia in Australia, and their MBS service use may not be representative of all people with younger onset dementia.
Results of this analysis should be interpreted with caution due to data limitations. For more information on data considerations of this analysis, refer to the Technical notes.
In 2021–22, there were just over 11,800 people aged 0–64 in the NHDH younger onset dementia cohort (meaning people aged 0–64) who were identified as having dementia in the linked data (Figure 14.3; Table S7.1). Of these, just over 1,400 (12%) lived in permanent residential aged care for all or part of the year. The NHDH younger onset dementia cohort will be different to AIHW prevalence estimates as people in the later stages of dementia are more likely to be identified in the linked data than people in the early to moderate stages.
In 2021–22, the NHDH younger onset dementia cohort living in the community used an average of 42 MBS services and those living in permanent residential aged care used an average of 52 MBS services (Table S7.2).
Health service attendances
A high proportion of the NHDH younger onset dementia cohort who lived in the community or in residential aged care had one or more GP attendances (99%), and over 1 in 5 attended a nurse and/or Aboriginal health care worker attendance (21% in the community and 22% in residential care). On average, the NHDH younger onset dementia cohort who were living in residential aged care had more attendances at the GP (26 per person) or with a nurse or Aboriginal health care worker (6.6 per person) compared with those living in the community (17 GP attendances and 2.3 nurse or Aboriginal health care worker attendances per person).
A high proportion of the NHDH younger onset dementia cohort living in the community used pathology services (86%), diagnostic imaging (60%) or attended a specialist appointment (60%), while 1 in 2 accessed an allied health service (51%) and fewer than 1 in 4 (23%) had an operation.
Compared with those living in the community, the NHDH younger onset dementia cohort living in residential aged care were more likely to access pathology services (93%) and allied health services (58%) and less likely to attend a specialist appointment (38%), have diagnostic imaging (34%) or to have an operation (7%).
Compared with the NHDH dementia cohort aged over 65, the NHDH younger onset dementia cohort were more likely to have a specialist attendance for neurology, psychiatry or a mental health care attendance. The NHDH younger onset dementia cohort were generally less likely than older people to have MBS attendances that may be associated with increasing age and comorbidities, such as specialist attendances for cardiology, dermatology or ophthalmology. But, for some services, such as podiatry, service use for the NHDH younger onset dementia cohort living in residential aged care was more like those of older people.
For more information on MBS services used by people with dementia see Primary health care services.
- Percentage of people who used a service: ‘Percentage’ is the proportion of people with at least one service recorded in the linked data in 2021–22. This is also referred to as a rate of service use.
- Average number of services per person: The average number of services per person was calculated by dividing the total number of attendances in Table S7.2 by the population counts in Table S7.1.
Figure 14.3: MBS service use by type of service, place of residence, sex and age, in 2021–22
Bar graph showing the percentage, mean service use, and total number of services for various MBS services in people with dementia comparing those living in the community and those living in residential aged care.
Medications dispensed to people with younger onset dementia
While there is currently no known cure for dementia, there are four medications available under the Pharmaceutical Benefits Scheme (PBS) and Repatriation Pharmaceutical Benefits Scheme (RPBS) that may assist in managing dementia symptoms and slow dementia progression. In Australia, these medications are currently only subsidised for people with a diagnosis of Alzheimer’s disease. This section focuses on dispensing patterns of dementia-specific medications supplied to people aged 30–64, under the PBS and RPBS.
It is important to note that information on medication intake and adherence to medication plans is not available. The data presented here relate only to prescriptions dispensed. In addition, the PBS and RPBS do not contain data on dispensing of privately prescribed medications (prescriptions that are not eligible for subsidy under the PBS or RPBS), medications to public hospital in-patients and over-the-counter medications.
For more information on dementia-specific medications see Prescriptions for dementia-specific medications. Refer to the Technical notes for further information on the Pharmaceutical Benefits Scheme and the codes used to identify dementia-specific medications.
Prescriptions for dementia-specific medications varied with age
In 2023–24, about 2,700 people aged 30–64 were dispensed around 23,900 dementia-specific medications (Table S8.1). The average number of scripts dispensed per person was lower for people aged 30–64 (8.7 per person) than for people aged 65 and over (over 9.3 per person). See Prescriptions for dementia-specific medications for more data.
Donepezil was the most dispensed dementia-specific medication in 2023–24 for people aged 30–64, accounting for about 15,500 prescriptions or 65% of all dementia-specific scripts dispensed (Table S8.3). Memantine, usually prescribed for moderately severe to severe Alzheimer’s disease, accounted for 15%.
As people with dementia often have other co-existing conditions, they are likely to be prescribed a range of other medications. For people who were dispensed scripts for dementia-specific medications in 2023–24, psychoanaleptics (medications used to treat depression and other neurological and mental disorders) were dispensed to a larger proportion of people aged 30–64 (63%) compared with people aged 85 and over (50%) (Table S8.9). However, most other medications were dispensed to a greater proportion of people aged 85 and over.
Antipsychotic dispensing to people living with younger onset dementia
People living with dementia may experience changed behaviours, such as aggression, agitation and delusions, commonly known as behavioural and psychological symptoms of dementia (BPSD). To manage these symptoms, non-pharmacological interventions are recommended, but medical professionals may prescribe antipsychotic medications to people with dementia with BPSD as a last resort.
In 2023–24, among people dispensed scripts for dementia-specific medication, people aged 30–64 were more likely to also be dispensed antipsychotic medications (which are part of the psycholeptics group): 24% of women and 24% of men aged 30–64, compared with 20% of men and 19% of women aged 85 and over (Table S8.10).
Hospitalisations of people with younger onset dementia
This section includes information on the number and characteristics of dementia-related episodes of admitted patient care (referred to as 'hospitalisations') from the National Hospital Morbidity Database, including hospitalisations due to dementia in 2023–24. Hospitalisations due to dementia refer to hospitalisations where dementia was the main reason for the admission to hospital.
Refer to Hospital care for a broader discussion on hospitalisations due to and with dementia, the limitations of the National Hospital Morbidity Database to report on hospitalisations among people with dementia, as well as what is being done to improve reporting on dementia hospitalisations.
Hospitalisations by age group
In 2023–24, people aged 30–64 had just over 1,200 hospitalisations (1 hospitalisation per 10,000 people) due to dementia (616 men and 613 women). While having fewer hospitalisations, people aged 30–64 had a longer average length of stay in hospital (23 days) than all other age groups (Figure 14.4, Table S14.4).
Figure 14.4: Overview of hospitalisation due to dementia by age in 2023–24
Bar graph showing hospitalisations and average length of stay for those aged 30–64. Those aged 50–54 tend to have a higher average length of stay while those aged 60–64 have a higher number of hospitalisations.
AIHW (2020–21), National Health Data Hub, aihw.gov.au, accessed 10 February 2024.
Draper B and Withall A (2016), Young onset dementia, Intern Med J, 46(7):779-786, doi:10.1111/imj.13099.