The economic value of

informal mental health caring in Australia: summary report

Commissioned by Mind Australia

Summary report

March 2017 Sandra Diminic1,2, Emily Hielscher1,2, Yong Yi Lee1,2, Meredith Harris1,2, Jaclyn Schess1, Jan Kealton3, Harvey Whiteford1,2

1. Policy & Epidemiology Group, Queensland Centre for Mental Health Research.
2. School of Public Health, The University of Queensland.
3. Carer consultant.

Overview

Mental illness is common and is a leading cause Mind Australia commissioned the University of of disability burden in Australia [1] – in 2007 it Queensland (UQ) research team to: was estimated that mental illness affects 20% [2]. However, there are acknowledged gaps in
available services for people with mental illness
which result in them not always receiving timely support of the type and quantity needed [5].
Therefore informal carers, such as a family member or friend, play a significant role in the
care of people with mental illness in Australia, providing a substantial number of hours of
unpaid support. In the absence of this informal
care, the overall functioning and quality of life of
persons with mental illness who currently have a
carer would be poorer. Their care needs would
either go unmet or would need to be picked up by the formal health and social care systems, at additional cost to government.

Recent reports have estimated the overall value of caring in Australia for carers of individuals with all types of disorders or disabilities [6–8]. The replacement cost of this care was estimated to be $60.3 billion, which highlights the size of the informal care sector [8]. Until now, there has been no published attempt to establish the value of the care delivered by mental health carers each year, in terms of the unpaid hours of support provided to persons with mental illness.

Diminic S, Hielscher E, Lee YY, Harris M, Schess J, Kealton J & Whiteford H. The economic value of informal mental health caring in Australia: summary report. Brisbane: The University of Queensland; 2016.

Summary of Methods

Target Population

Note. The following conditions were considered out of scope for our definition of mental illness where they are the care recipient’s main condition: autism spectrum disorders, intellectual disability, substance use disorders or neurological disorders (including dementia, stroke and epilepsy).

For the purpose of this report, we focused our analyses as closely as possible on the following definition: A mental health carer is a person who provides regular and sustained informal care to a care recipient whose main health condition is a mental illness, where the care recipient is aged 16 years or over.

Data Sources

The research team conducted an economic modelling exercise and analyses using data from a range of sources (Box 1). These data sources provided estimates of the number of mental health carers in Australia, weekly hours of care provided, caring tasks typically performed and hourly costs of mental health support workers, which were direct inputs into the replacement cost model. Other sources provided data on the impact of carers on bed-based service use and expenditure on carer support services.

In-scope mental illness diagnoses included:

• major depression
• bipolar disorder
• anxiety disorders
• schizophrenia and other psychotic disorders
• personality disorders
• eating disorders
• behavioural disorders.

Page 4: Data Sources

Box 1 – Data sources

• Reviews of published literature on the characteristics of Australian mental health carers, length of hospital stay for people with carers and carers’ service use and unmet needs.

• Two national household surveys – the Survey of Disability, Ageing and Carers (SDAC) 2012 [9] and the National Survey of Mental Health and Wellbeing (NSMHWB) 2007 [10].

• A new online survey of carers – the UQ Carer Survey 2016 (see below).

• National award wage rates from the Social, Community, Home Care and Disability Services (SCHADS) award [11].

• A national survey of people with psychosis – the Survey of High Impact Psychosis 2010 [12].

• Key informant interviews with clinicians familiar with the operation of bed-based mental health services.

• Published data on funding of income support payments and support services for carers.

UQ Carer Survey 2016 Note. This is a hypothetical scenario. The

                                                    intention is never for government to completely   The UQ Carer Survey 2016 was a convenience

                                                replace the care provided by mental health   sample survey of Australian adults caring
                                                    carers. Rather, a replacement cost analysis    for someone aged 16 years or older whose
                                                                 is a method used to quantify the economic   main condition is mental illness. The survey
                                                 value of informal care, and in turn highlight the   was purpose designed by the research team
                                             importance of carers.    to fill gaps in previous national surveys, and
particularly to elicit additional detail on the                                                  To calculate the annual replacement cost for

mental health caring role (hours of care by mental health carers in Australia for the year caring task). The survey was administered 2015, we required estimates of: online to 107 carers in April 2016. Participants were recruited from state and territory carer 1. the total number of mental health carers in networks and organisations. Australia

                                                    2. the total hours of care provided by each   Replacement cost model
                                               mental health carer in a year

One of the main aims of the project was to estimate the replacement cost of informal 3. the cost per hour to replace this care with mental health care in Australia. formal services

                                                    4. cost offsets for the estimated current annual     The replacement cost approach to valuing
                                            government expenditure on mental health      informal caring assumes that, in the absence
                                                   carers that might not be required if all      of a carer, the care recipient would need
                                                     informal care was replaced with paid formal      to receive equivalent levels of support
                                                     care.     from formal mental health or other support
  services, paid for by the relevant level of                                               These inputs were obtained by combining data
 government. This approach therefore values                                                from the sources in Box 1.
  caring by estimating how much this informal
 care would cost if delivered by government-
 funded services instead of unpaid family and
  friends.

Key findings

• An estimated 240,000 Australians care

A primary carer is the person who provides the most informal assistance to the person with mental illness, whereas a secondary carer shares or assists with informal care duties. Primary carers are not limited by their age, their relationship to the care recipient or whether they live with or apart from that person. However, for this project ‘primary carers’ were restricted to the narrow definition used in the SDAC 2012, that being: required to be confirmed primary carers aged 15 years or more, to reside with their main recipient of care and for their main recipient of care to meet our definition of mental illness.

‘Other carers’ thus includes people who are secondary carers only, as well as all carers aged below 15 years, primary carers who do not live with their recipient of care and primary carers to a secondary care recipient with mental illness (where their main care recipient has a different condition). Thus our estimate of primary carers is conservative.

Figure 1. Estimated number of mental health carers, Australia 2015

Key findings | 4

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Box 2 describes some key characteristics of the caring role for mental health carers.

Box 2 – Caring role of mental health carers, SDAC 2012

• The majority (99%) of carers provided support to one person with mental illness but 21.7% also cared for at least one other person with another disability type.

• The care recipient was most commonly their spouse/partner (45.8%) or child (31.8%).

• 49.1% of primary carers had been caring for ten or more years.

Key characteristics of mental health carers and their care recipients are shown in Boxes 3 and 4.

Box 3 – Key mental health carer demographics, SDAC 2012

• The majority of mental health carers were female (54.4%), of working age (72.8%), married (53.5%) and living in a capital city (61.2%).

• 14.7% were young carers below 25 years of age.

• More than three-quarters (76.8%) were born in Australia, and the vast majority (92.5%) spoke English at home.

• A substantial proportion (38.4%) of carers were not in the labour force.

• Primary carers had lower levels of educational attainment and employment than the broader carer group.

Box 4 – Key care recipient demographics, SDAC 2012

• Just over half (51.6%) were female, 64.8% were of working age and 59.7% lived in a capital city.

• 25.3% were young people aged 15–24 years.

• Most (80.3%) were born in Australia and only 6.8% spoke a language other than English at home.

• The most frequently reported main disabling conditions were depression (37.4%) and anxiety disorders (18.8%).

• Most care recipients had comorbid conditions (85.3%); the most common were substance use* and physical health problems.

• Not collected in the SDAC 2012; data from the UQ Carer Survey 2016

Previous estimates of the number of mental

health carers in Australia have varied widely. Islander or culturally and linguistically diverse backgrounds. The survey methods are also likely to have produced a conservative estimate of the proportion of carers who identify as primary carers due to the way data were collected (see definition of ‘other carers’ on page 4).

Our profile of carers was drawn from multiple surveys, and in particular relied on the SDAC 2012, a nationally representative household survey. We were able to count and describe not just primary carers, but the wider population of people caring for someone with a mental illness. This profile of mental health carers therefore improves upon previous smaller studies, which focus only on primary carers or those accessing

• carer services.

2. Mental health carers provide large amounts of unpaid support, often on a fluctuating basis Primary carers generally provide more support than other carers, and this was reflected in our analysis. Almost 40% of primary mental health carers provided 40 or more hours of care per week on average, and a similar proportion fewer than 20 hours per week. When compared with a small sample of possible, but not confirmed, primary mental health carers, confirmed primary carers provided more weekly hours of care (Figure 2).

Figure 2. Average caring hours for confirmed (n=150) vs. other possible (n=87) primary mental health carers, SDAC 2012

Key findings | 6

The UQ Carer Survey 2016

The UQ Carer Survey 2016 provided more detailed estimates of hours of care and caring tasks for a similar population of mental health carers as the SDAC 2012.

Data on hours of care from the UQ Carer Survey 2016 were grouped into the same time categories as used in the SDAC 2012, and were used to calculate a weighted average hours of care.

On average, primary mental health carers provided 36.2 hours of support per week to their care recipients.

In addition to the time devoted to direct caring tasks each week, carers also reported being ‘on call’ or ‘on standby’ in close proximity to their care recipient so that they can be available quickly if needed (e.g., in a crisis). The majority of UQ Carer Survey 2016 carers reported providing this standby time, estimated at an additional 59.5 hours per carer per week. Since the carer is ‘on call’, they cannot make plans for other activities such as meeting friends, working, engaging in hobbies or travelling.

Using data from the NSMHWB 2007 sample, which covered a much wider array of mental health carers, we estimated that other carers provide on average 11.0 hours of support per week. The distribution of weekly hours of care was skewed, with most carers reporting very few hours of caring per week.

Interpretation and key considerations Our estimates of average weekly hours of care are smaller than those identified in previously published studies. This may be due to differences in our definition of a mental health carer, which excluded cognitive and behavioural conditions often included in other studies. Past samples recruited through carer organisations are also likely to have captured carers with higher needs who may have been caring for a longer duration, and for more hours per week.

Qualitative feedback provided in the UQ Carer Survey 2016 indicated that, due to the fluctuating and episodic nature of mental illness, many carers had trouble estimating average hours of weekly care. These hours tend to vary from week to week and month to month.

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month, depending on how well the person with All carers in the UQ Carer Survey 2016 provided mental illness is, with unexpected crisis periods assistance to their care recipient with emotional requiring more intensive support. Therefore our support and psychosocial care, and 98.1% data provide an indicative snapshot of caring assisted with practical tasks. Assistance with ADL was provided by 61.7% of mental health carers. On average, mental health carers spent most of their care time providing emotional support and psychosocial care (Figure 3). Assistance with ADL accounted for only a Mental health caring tasks were grouped into very small proportion of mental health carers’ three categories, consistent with previous support time. studies:

Figure 3. Proportion of total mental health carers’ caring time devoted to different types of caring tasks, UQ Carer Survey 2016

Emotional support and psychosocial care, including:

• emotional support and encouragement (emotional support and companionship, encouraging and motivating)

• supervising and monitoring (encouraging or prompting to do things, keeping the care recipient occupied, supervising to prevent wandering/damage)

• responding to behaviour (managing crises, managing inappropriate behaviours).

Assistance with practical tasks, including:

• household tasks (grocery shopping, preparing meals, housework, property A breakdown of tasks within each category maintenance) is provided in Figure 4. The most frequently reported caring tasks within the emotional support and psychosocial care category were emotional support and encouragement, supervising and monitoring and responding to behaviour; health care coordination was the most frequently reported caring task within the practical tasks category. Average caring time 3. literacy and communication (managing was split across multiple types of tasks, with the finances, other paperwork, reading and most hours devoted to emotional support and writing, communication) encouragement, supervising and monitoring, carers’ spent on emotional support household tasks and other emotional support time is spent on emotional support tasks.

Assistance with activities of daily living (ADL), including personal hygiene/grooming, bathing, dressing, eating and mobility.

Key findings | 8

Figure 4. Proportion of carers and care time for subtypes of care tasks, UQ Carer Survey

2016

4. Mental health caring differs from other Including all primary and other carers, mental health carers were significantly less likely than carers of people with other disability types to We compared the caring role reported by mental health carers with that of carers of adults with other types of disabilities. These were grouped into other cognitive/behavioural conditions (autism spectrum disorders, intellectual disability, other developmental orders, dementia and acquired brain injury) and physical conditions.

Primary mental health carers were significantly more likely than primary carers of people with other cognitive/behavioural conditions to provide episodic rather than continuous care.

9 | Key findings

Figure 5. Proportion of all carers of people aged 15+ years performing different types of

caring tasks, grouped by care recipient’s main condition, SDAC 2012

The distribution of average weekly hours of care hours caring per week (Figure 6). Note that was similar for primary mental health carers hours spent caring are likely to vary, depending on the availability of formal support services, and these may differ by the care recipient’s type of condition. Figure 6 does not include standby 时间, data for which were only available for mental health carers.

Figure 6. Average caring hours for primary carers of people aged 15+ years, grouped by care

recipient’s main condition, SDAC 2012

Key findings | 10

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5.

It would cost $13.2 billion to replace informal mental health care with formal support services. Care tasks not typically performed by PHaMs workers, including crisis support and assistance with activities of daily living (feeding, dressing and so on), were costed as a crisis accommodation worker or disability support worker, respectively.

As explained on page 3, one of the key aims of this project was estimating the economic value of informal mental health care via a replacement cost valuation. The main steps for calculating the annual replacement cost for mental health carers in Australia are outlined in Figure 7.

Detail on costing methods

A Personal Helpers and Mentors (PHaMs) or equivalent support worker was deemed to be the most closely related formal support service to informal caring, and therefore was used to determine the hourly formal service cost to ‘replace’ informal mental health.

Table 1. Workforce parameters for support workers

Salary on-costs	Organisational overheads	Working hours per week (A)	Working weeks per year (B)	Consumer-attributable service delivery time (C)	Annual hours of consumer time per FTE (A × B × C)
23%	20%	38 hours	45.14 weeks (52.14 – seven weeks leave)	70% of working hours	1,201 hours

The cost offset was the estimated government expenditure on Centrelink income support for mental health carers in 2015. This included:

• Carer Payment
• Carer Allowance
• Carer Supplement
• Rent Assistance for carers receiving Carer Payment.

This income support was subtracted from the final replacement cost model. Expenditure on other carer support services such as respite care and counselling was not included in the cost offset as many of these services would still be required for families, even under a total replacement scenario.

Key findings

Figure 7. Schematic overview of replacement cost model

Key findings | 12

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may not have any consistent effect one way or Overall, the total annual replacement cost for the other. The impact, if any, of a carer is likely all informal mental health carers in 2015 was to depend on how engaged the carer is with the $14.3 billion. After adjusting for $1.1 billion care recipient’s treatment, how well the carer is offset in Centrelink payments, this figure was coping and the carer-care recipient relationship. $13.2 billion. This is how much it would cost Therefore we did not model a difference in governments to replace all of the caring tasks hospital costs for people with and without a currently provided by mental health carers carer. with formal mental health support services, such as PHaMs or disability support workers.

In comparison with previous estimates of the replacement value of all informal care in Australia ($60.3 billion) [8], our estimated replacement cost for mental health informal To put this in context, the total replacement care is higher. Our modelling approach was able value of $13.2 billion is equivalent to 1.7 times to refine replacement cost methods for informal the current national expenditure on all mental mental health care in Australia to produce what health-related services in Australia, including we believe is a more reliable estimate.

Total national expenditure on these services was estimated to be $8.0 billion 6. Conservatively, $1.2 billion is currently in 2013–14 [14]. These figures highlight the spent on support for mental health carers significant value provided by carers, in terms of In contrast to the substantial economic providing support for people with mental illness. value of informal mental health care ($13.2 billion), estimated government expenditure Carers have previously reported their family on mental health carers is relatively modest. members being discharged early from hospital We conservatively estimated that government where there is a stable home and carer expenditure on mental health carer services available to support the person with mental was approximately $1.2 billion in 2015. This illness. If early discharge is associated with includes $1.1 billion in Commonwealth-funded having a carer, this would be a cost saving income support payments, $69 million in other to government from caring and should be Commonwealth-funded services and between considered in the replacement cost model. To $10 million and $46 million in state- and to explore this, we combined a literature review territory-funded services (Figure 8). These other with analysis of the SHIP 2010 survey and key Commonwealth- and state-funded support informant interviews. The data indicated that services include, e.g., respite care, information, having a carer does not reduce the length of counselling and practical assistance. stay in bed-based mental health services, and

Figure 8. Government expenditure on mental health carer services

Note. These estimates are conservative because we were unable to locate expenditure data for some programs, and excluded some broader consumer and carer programs that might benefit mental health carers because no specific expenditure data were available on the portion directly linked to mental health carers.

A concerning 35.0% of primary mental health carers did not know what services were available for carers. A small proportion had not heard of the Carer Payment and therefore had not explored their eligibility.

Around half of primary mental health carers reported unmet support needs.

The SDAC 2012 indicated that the majority of primary mental health carers were not receiving any support, with only 23.8% receiving Carer Payment and 34.4% receiving assistance to care for their main recipient of care. More detailed data from the UQ Carer Survey 2016 participants showed that 43.4% of mental health carers did not receive any form of Centrelink support.

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Box 5 – Key issues with mental health carer support services

• A lack of information about mental illness and carer support services.
• The need for more assistance, such as respite care and emotional support.
• Available services do not always meet the episodic caring needs of mental health carers.
• Gaps in mental health services for care recipients place additional burden on carers.
• Poor recognition of carers and exclusion by mental health professionals from treatment and discharge planning and discussions about recovery.
• Difficulties accessing sufficient financial support.

This report highlights a need for better disseminating information about support services to mental health carers. Carers report needing more appropriate and flexible support services to match their unique caring profile and

Another recurring theme from carers was that the episodic and unpredictable nature of mental illness. Services originally developed for carers of people with other types of disabilities may not be directly suitable or transferable to the needs of mental health carers.

Other carer needs

2016 expanded upon a number of the issues Prioritising provision of carer support services would do much to ensure that mental health carers can continue to perform their role without significant financial disadvantage and psychosocial distress. It would also do much to address some of their identified unmet needs.

Implications

This work provides the first known estimate of mental health system, and that improvements to services for people with mental illness and their carers are warranted. A summary of the key findings is shown in Box 6.

Box 6 – Key messages

• An estimated 240,000 Australians care for an adult with mental illness.

• Mental health carers provide large amounts of unpaid support, often on a fluctuating basis.

• Most mental health carers’ time is spent on emotional support.

• Mental health caring differs from other types of caring.

• It would cost $13.2 billion to replace informal mental health care with formal support services.

• Conservatively, $1.2 billion is currently spent on support for mental health carers.

• Not all mental health carers are accessing support services or feel their needs are being addressed.

This study also highlighted a number of areas where a lack of good-quality data led us to make necessary assumptions. These areas could be improved by further research and data collections (Box 7).

Box 7 – Areas for further research

• More detailed data collection on hours of care for a large and representative sample of mental health carers, such as an ABS Time Use Survey or diary methods study, considering the episodic nature of mental health caring.

• Routine recording of carer status in bed-based mental health service datasets to allow detailed analysis of large samples on the relationship between caring and service utilisation.

• More detailed profiling of young carers below 25 years of age, whose support needs and caring impact are likely to differ from older carers.

• Implementation of the Mental Health Non-Government Organisation Establishment National Minimum Dataset to improve available data on mental health carer support service expenditure and access.

• Exploration of the financial impact of caring on mental health carers and the opportunity costs, which were outside the scope of this study.

Box 8 – Summary of current and future reforms

• National Disability Insurance Scheme (NDIS)

  -– Carers are not participants of the NDIS and will not receive a separate assessment or an individually funded package of supports.

  -– One of the core aims of the NDIS is to better support the carer to continue their caring role, which may include training for carers, respite and group or family therapy.

  -– Preliminary results indicate some positive outcomes for carers: ability to return to work, reduced stress and less financial pressure.

  -– Key issues for mental health carers include uncertainty about the national roll out, anxiety about access to Tier 3 supports and uncertainty surrounding service accessibility if the care recipient is deemed ineligible.

• Carer Gateway and integrated carer support service

  -– Commonwealth Government has committed $33.7 million over the next four years to design and implement an integrated plan for a carer support service.

   -– Stage One: implementation of a national Carer Gateway or online resource hub. The Carer Gateway launched in December 2015; however, no evaluation data published to date.
  
   -– Stage Two: designing a new national service ('integrated carer support service') that provides better coordinated and more streamlined carer services. A draft concept model was published in May 2016 for public feedback. There is nothing in the draft service concept pertaining specifically to mental health carers.
  

• Review of Carer Payment and Allowance

  -– The Department of Social Services is currently undertaking a review of the assessment process for the Carer Payment and Allowance.

  -– The Royal Australian and New Zealand College of Psychiatrists (RANZCP) has been invited to provide input into this review process.

  -– Concerns have been raised about the current assessment process being too heavily geared towards carers of people with a physical disability.

References

[1] Whiteford HA, Degenhardt L, Rehm J, Baxter AJ, Ferrari AJ, Erskine HE, et al. 2013, ‘Global burden of disease attributable to mental and substance use disorders: findings from the Global Burden of Disease Study 2010’, The Lancet, 382(9904) p1575–86.

[2] Slade T, Johnston A, Oakley Browne MA, Andrews G, Whiteford H. 2007, ‘National Survey of Mental Health and Wellbeing: methods and key findings’, Australian and New Zealand Journal of Psychiatry, 43(7):594–605.

[3] National Health Workforce Planning & Research Collaboration. Mental Health Non-Government Organisation workforce project: final report. Adelaide: Health Workforce Australia, 2011, cited 26 June 2016 http://www.voced.edu.au/content/ngv%3A53788.

[4] Australian Institute of Health and Welfare. Community-managed mental health workforce. Canberra: AIHW, 2012, cited 10 May 2016 <www.mhsa.aihw.gov.au/Resources/Community-managed_workforce>.

[5] National Mental Health Commission 2014, Contributing lives, thriving communities: Report of the National Review of Mental Health Programmes and Services, NMHC, Sydney.

[6] Access Economics. The economic value of informal care in 2010, Report for Carers Australia, Canberra: Access Economics Pty Ltd; 2010, cited 1 December 2015, http://carersaustralia.com.au/storage/Economic-Value-Informal-Care-Oct-2010.pdf.

[7] Hill T, Thomson C, Cass B. The costs of caring and the living standards of carers, Canberra: Commonwealth of Australia, 2011, cited 1 December 2015 <www.dss.gov.au/sites/default/files/documents/05_2012/sprp_43.pdf>.

[8] Deloitte Access Economics. The economic value of informal care in Australia in 2015, Report for Carers Australia, Canberra: Deloitte Access Economics Pty Ltd; 2015, cited 1 December 2015 http://www.carersaustralia.com.au/storage/Access%20Economics%20Report.pdf.

[9] Australian Bureau of Statistics. National survey of mental health and wellbeing: Summary of results, 2007, 2008, ABS cat. no. 4326.0, cited 1 December 2008 http://www.abs.gov.au/ausstats/abs@.nsf/mf/4326.0.

[10] Fair Work Ombudsman. Pay Guide: Social, Community, Home Care and Disability Services Industry Award 2010 [MA000100], Canberra, Commonwealth of Australia, 2015, cited 16 March 2016 <www.fairwork.gov.au/ArticleDocuments/872/social-community-home-care-and-disability-services-industry-award-ma000100-pay-guide.docx.aspx>.

[11] Morgan VA, Waterreus A, Jablensky A, Mackinnon A, McGrath JJ, Carr V, et al. People living with psychotic illness 2010: report on the second Australian national survey, Canberra: Commonwealth of Australia 2011, cited 10 January 2016 <www.health.gov.au/internet/main/publishing.nsf/content/717137A2F9B9FCC2CA257BF0001C118F/$File/psych10.pdf>.

[12] NSW Ministry of Health. National Mental Health Service Planning Framework: technical manual May 2014. Sydney: NSW Ministry of Health, 2014.

[13] Australian Institute of Health and Welfare. Expenditure on mental health services, Canberra: AIHW, 2016, cited 16 June 2016 <www.mhsa.aihw.gov.au/resources/expenditure/>.

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