Younger people with dementia registered to public mental health services in Victoria, Australia

Introduction

Young-onset dementia (YOD) refers to a dementia with symptom onset occurring before 65 years of age.¹ While there is differing nomenclature for this type of dementia depending on jurisdiction, age brackets and policy, in this report, the term ‘YOD’ is used to encompass dementias occurring at a younger age as per recent international consensus.² People living with YOD often fall through the gaps of adult and aged services due to service age cut-off criteria³ and lack of age-appropriate services,⁴ particularly in rural and regional areas.³ The non-cognitive symptoms of dementia include behavioural and psychological symptoms, and are common in people with YOD. These symptoms may be the initial presenting symptoms of the dementia.^5–7 Due to their younger age and the nature of these symptoms, people living with YOD may not access geriatric services and may contact mental health services instead. There is very little information regarding the actual services that younger people with dementia utilise, internationally and in Australia.

Given the lack of data and the importance of this question for service provision we sought to investigate the use of mental health services by younger people with a diagnosis of dementia. We first focused on the frequency of usage and demographic characteristics in the area-based services in rural and metropolitan Victoria, compared to the access of these services by people with dementia overall. Second, we used population statistics of local government areas to generate percentages to compare the frequency of people with YOD presenting to these services among these areas.

Methods

In Victoria, Australia, public-funded mental health services provide community and inpatient services for the assessment, diagnosis and management of mental health conditions for children and adolescents (aged 0–25 years), adults (aged 26–64 years) and older adults (aged ≥65 years).⁸ In Victoria, there are 17 adult services, 14 aged persons’ services and 13 child/adolescent services. Outside of metropolitan Melbourne, there are eight regional mental health services that provide support for people of all ages. These are ‘area-based’, meaning that the mental health service an individual can access depends on their place of residence. Contacting mental health triage is the first entry point for anyone seeking to access these mental health services. Each mental health service in Victoria provides a triage service, available 24 h a day, 7 days a week.

Once an individual has contact from a Victorian mental health service, they are registered and allocated a unique identification number, known as the Statewide Unit Record number via the Client Management Interface Operational Data Store (CMI/ODS). The CMI/ODS has information including the individual’s demographics, diagnosis, family and carer details and advance statement information. The use of any legislation to provide treatment, inpatient admissions, episodes of care and locality are also recorded. Thus, the CMI/ODS provides a snapshot of a person’s journey through the Victorian mental health service.⁹

We obtained administrative CMI/ODS data for the period of 1 January 2018 to 31 December 2021 from The Victorian Agency for Health Information (VAHI). Data points from the CMI/ODS included: (1) the entire triage data set where the consumer was later registered and had a diagnosis of dementia according to ICD.10 codes (Box 1) living in Victoria and (2) aggregated data for age, sex, preferred language, locality and Aboriginal and Torres Strait Islander peoples status. We defined ‘young-onset dementia’ as consumers with a dementia diagnosis who were aged less than 65 years at the time of contact. The dementia diagnosis was provided via self-report by the person contacting triage.

Victorian population data were obtained from the Australian Bureau of Statistics 2021 census data of local government areas of people who were aged less than 65 years.¹⁰ Percentages were generated using results from the triage data as the numerator and the census data as the denominator. Statistics used for analyses included descriptive statistics, frequencies and comparison tests such as χ². Graph Pad Prism (2023) was used for analyses. Ethical approval was provided by the University of Melbourne Human Research Ethics Committee (ID#22943).

Results

Dementia demographics – all ages

During the 3-year period, 6172 consumers with dementia diagnoses at any age were registered with CMI, with n = 3077 (49.9%) being men. The most frequent age brackets for dementia were 70–74 years (n = 890, 14%), 75–59 years (n = 1054, 17%), 80–84 years (n = 1167, 19%) and 85–89 years (n = 950, 15%). English was the predominant nominated language (n = 5072, 82%), with Southern and Eastern European languages being next frequent at n = 587 (10%) and n = 208 (3%), respectively. Eighty-eight people (1.4%) identified as Aboriginal or Torres Strait Islander peoples. Fig. 1 shows the age breakdown of individuals with a dementia diagnosis and Fig. 2 shows the gender breakdown of people with a dementia diagnosis.

Fig. 1.

Age breakdown of individuals with a dementia diagnosis.

Fig. 2.

Number of men and women with a dementia diagnosis registered to the CMI/ODS: all ages and aged less than 65 years.

Consumers aged less than 65 years with a dementia diagnosis (‘young-onset dementia’)

There were 1020 consumers aged less than 65 years (1020/6172 = 16.5%) registered with dementia diagnoses, with n = 627 (61.5%) being men. There were proportionally more men with YOD registered to mental health services compared to men with dementia overall, χ²(1) = 47.29, P < 0.0001.

The age brackets with the highest number of people with YOD were aged 60–64 years (n = 278, 27% of all YOD), 55–59 (n = 110, 11%) and 45–49 (n = 87, 8.5%). We identified 89 (9%) consumers who had a dementia diagnosis aged between 15 and 24 years. English was the most common language spoken (n = 951, 93%) followed by Asian languages (Eastern, Southern, Southeast and Southwest/Central Asian) (n = 39, 4%) and Eastern and Southern European languages (n = 9, 0.9%). There were significantly more people that spoke English in the YOD group (English speakers in dementia overall group 82%, and English speakers in YOD group 93%; χ²(1) = 78.63, P < 0.0001). Sixty-two people (6%) identified as Aboriginal or Torres Strait Islander peoples, which was significantly higher than in the dementia overall group (1.4%), χ²(1) = 249.08, P < 0.0001.

Fig. 3a, b show the numbers of people with YOD registered to metropolitan and rural Victorian services, respectively. For metropolitan services, of the 750 consumers, the adult mental health service with the highest frequency of consumers were from the Dandenong (n = 83) and Mid-west (n = 81) services (both 11%) and North-west (n = 66) and Outer-east (n = 66) services (both 9%). For rural services, of the 469 consumers, the mental health services with the highest frequency of consumers were from Goulburn (n = 158, 34%), Loddon (n = 112, 26%) and Gippsland (n = 54, 12%).

Fig. 3.

(a) Number of people aged less than 65 years contacting Victorian metropolitan triage services. See: http://www3.health.vic.gov.au/mentalhealthservices/. (b) Number of people aged less than 65 years, contacting rural mental health triage services in Victoria. See: http://www3.health.vic.gov.au/mentalhealthservices/.

Discussion

Between 2018 and 2021, 1020 individuals aged 65 years or less with a dementia diagnosis were registered with Victoria’s mental health services. Based on dementia prevalence data that there are 7300 people with YOD living in Victoria,¹¹ the CMI/ODS data show that 14% of people with YOD have registered with public mental health services. In comparison, of the estimated 104,622 people living with dementia in Victoria,¹¹ only 5% (6172 people) with dementia have attended a mental health service. This suggests that those who have YOD may be more inclined to reach out for support via public mental health services, compared to older adults with dementia, who access alternative services such as aged care services which operate outside the mental health system.

Two demographic differences from our study were found, compared to a recent Australian Institute of Health and Welfare (AIHW) report on YOD. The AIHW report obtained linked data of 2415 people with YOD, aged between 30 and 74 years who were dispensed dementia-specific medications, such as cholinesterase inhibitors and memantine.¹² First, our study contained proportionally more men with YOD (61.5%) registered with public mental health services, compared to men of all ages with dementia (50%) and more than the 48% reported in the AIHW YOD report. Men with YOD have behaviours and psychiatric symptoms such as disinhibition, impulsivity and aggression from comorbidities such as traumatic brain injury and substance abuse that might lead them to present earlier to services.¹³

Second, we found more people in the YOD group who spoke English (93%), with the other languages nominated to be Asian and Southern and Eastern European, compared to the dementia group overall (82%). The AIHW YOD report described a much higher percentage of non-English speakers; 29% spoke Southern and Eastern European languages (including Italian and Greek) and 12% of people spoke Chinese languages.¹² The differences are likely related to the source of data. Our study utilised registrations to mental health services so it is unsurprising that behavioural issues may be more likely to be a reason to contact these services. Conversely, people who are culturally and linguistically diverse (CALD) may be less likely to access public mental health services, due to poor information about access, communication difficulties and stigma.¹⁴

Rural mental health service registrations revealed interesting information. The Goulburn region had a very high frequency of younger consumers with dementia registered to CMI/ODS compared to other rural areas and metropolitan areas. Compared to the metropolitan services, there was about double the frequency of consumers registered to rural services. The AIHW YOD report stated that the majority of their cohort lived in major cities (72%),¹² and while our study could not analyse prevalence of YOD, our findings suggest that people with YOD living in rural areas are more frequently accessing mental health services compared to those that live in metropolitan areas. This could be due to lack of specialist availability in the assessment and diagnosis of YOD, as well as treatment of psychiatric and behavioural symptoms, outside of metropolitan areas.

There are several limitations of our study partly due to the data we obtained from VAHI. First, we are unable to identify the reasons for which people contacted triage. For this reason, we cannot explain some of the information we identified, such as the high frequency of younger people with dementia attending the Goulburn region and that almost 10% of people with YOD included a group of very young people with dementia (aged 15–24 years). Further research might involve a closer investigation of the reasons for attending mental health services for people with YOD. Second, within the specific reporting period, a consumer may have multiple addresses and attended a service more than once within the reporting period. A consumer may have thus been counted more than once and at more than one location. Third, the data was extracted using ICD codes for dementia which was dependent upon the staff member entering the code and may not be consistent across services and clinicians. We were unable to verify these dementia diagnoses so cannot confirm if these were accurate or incorrectly classified, nor does the dataset include people who are waiting for an assessment for diagnosis. This is important as people who are eventually diagnosed with a YOD may present with psychiatric symptoms and are misdiagnosed.⁵ We were not able to access data pertaining to people with YOD presenting to private specialists or public-funded or private memory clinics. Finally, the reporting dates included the period of the coronavirus disease 2019 (COVID-19) pandemic when Melbourne experienced several lockdowns. Given that we do not have access to pre-COVID-19 data we are unable to comment on the impact of COVID-19 on presentation rates.

Despite these limitations, this is the first study to investigate people with YOD who contact mental health services. Our main finding is that younger people with dementia are accessing mental health triage services relatively more commonly than older people with dementia. While those with older-onset dementia can easily access aged mental health or geriatric services, those with YOD, by virtue of their age, are often directed to adult mental health services. Whether adult or aged mental health services are better placed to provide care and support for people with YOD remains unclear and is probably dependent on individual services in different regions. In the United Kingdom, there has been a push for better integration of YOD within aged mental health services.¹⁵ In Australia, specialised services and pathways have been developed for people with YOD to address these service gaps.¹⁶

The majority of dementia services cater for older people, and younger people with dementia have different needs and preferences.⁴ There is a need to upskill mental health services, particularly in rural areas, for assessment of dementia and treatment of psychiatric and behavioural symptoms in the context of YOD. There is also a lack of availability of specialist assessment, diagnosis and care for dementia in younger people, especially for those living in rural areas and who are CALD. The effects of CALD, rurality and lack of specialist availability may contribute to more people with YOD presenting to mental health services with more moderate or advanced stages of dementia and with acute behavioural issues. Hence, it is necessary to reach out to CALD and non-English speaking people in how to access these services and how to make these services more culturally appropriate. Finally, there is still lack of knowledge and information about Aboriginal and Torres Strait Islander peoples with YOD and how and if they access public mental health services.

Conclusion

This study reported on younger people with dementia diagnoses registered to Victorian mental health services over 3 years. While only an estimate, our results suggest that people with YOD are more likely to access mental health services compared with people with older-onset dementia. We recommend that training and education in YOD for clinicians who work at mental health services is required, especially those located in rural areas, and consideration be provided as to how CALD and Aboriginal and Torres Strait Islander peoples can access these services. This will greatly assist and support people and family affected by YOD.

Supplementary material

Supplementary material is available online.