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A profile of Australian mental health carers, their caring role and service needs: results from the 2012 Survey of Disability, Ageing and Carers

  • S. Diminic (a1) (a2), E. Hielscher (a1) (a2) (a3), M. G. Harris (a1) (a2), Y. Y. Lee (a1) (a2), J. Kealton (a4) and H. A. Whiteford (a1) (a2)...

Abstract

Aims

Planning mental health carer services requires information about the number of carers, their characteristics, service use and unmet support needs. Available Australian estimates vary widely due to different definitions of mental illness and the types of carers included. This study aimed to provide a detailed profile of Australian mental health carers using a nationally representative household survey.

Methods

The number of mental health carers, characteristics of carers and their care recipients, caring hours and tasks provided, service use and unmet service needs were derived from the national 2012 Survey of Disability, Ageing and Carers. Co-resident carers of adults with a mental illness were compared with those caring for people with physical health and other cognitive/behavioural conditions (e.g., autism, intellectual disability, dementia) on measures of service use, service needs and aspects of their caring role.

Results

In 2012, there were 225 421 co-resident carers of adults with mental illness in Australia, representing 1.0% of the population, and an estimated further 103 813 mental health carers not living with their care recipient. The majority of co-resident carers supported one person with mental illness, usually their partner or adult child. Mental health carers were more likely than physical health carers to provide emotional support (68.1% v. 19.7% of carers) and less likely to assist with practical tasks (64.1% v. 86.6%) and activities of daily living (31.9% v. 48.9%). Of co-resident mental health carers, 22.5% or 50 828 people were confirmed primary carers – the person providing the most support to their care recipient. Many primary mental health carers (37.8%) provided more than 40 h of care per week. Only 23.8% of primary mental health carers received government income support for carers and only 34.4% received formal service assistance in their caring role, while 49.0% wanted more support. Significantly more primary mental health than primary physical health carers were dissatisfied with received services (20.0% v. 3.2%), and 35.0% did not know what services were available to them.

Conclusions

Results reveal a sizable number of mental health carers with unmet needs in the Australian community, particularly with respect to financial assistance and respite care, and that these carers are poorly informed about available supports. The prominence of emotional support and their greater dissatisfaction with services indicate a need to better tailor carer services. If implemented carefully, recent Australian reforms including the Carer Gateway and National Disability Insurance Scheme hold promise for improving mental health carer supports.

Copyright

Corresponding author

Author for correspondence: Sandra Diminic, E-mail: sandra_diminic@qcmhr.uq.edu.au

References

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AMR Research (2015) Carer service development research report. Canberra: Commonwealth of Australia.
Australian Bureau of Statistics (2008) A profile of carers in Australia, 2008 (ABS cat. no. 4448.0). Available at http://www.abs.gov.au/AUSSTATS/abs@.nsf/DetailsPage/4448.02008?OpenDocument (Accessed 1 December 2015).
Australian Bureau of Statistics (2012) Caring in the community, Australia, 2009 (ABS cat. no. 4436.0). Available at http://www.abs.gov.au/AUSSTATS/abs@.nsf/DetailsPage/4436.02009?OpenDocument (Accessed 1 December 2015).
Australian Bureau of Statistics (2013) Disability, ageing and carers, Australia: summary of findings, 2012 (ABS cat. no. 4430.0). Available at http://www.abs.gov.au/ausstats/abs@.nsf/mf/4430.0 (Accessed 15 December 2015).
Australian Bureau of Statistics (2014) Caring in the community, Australia, 2012 (ABS cat. no. 4436.0). Available at www.abs.gov.au/AUSSTATS/abs@.nsf/DetailsPage/4436.02012?OpenDocument (Accessed 1 December 2015).
Australian Government (2015) Carer Gateway. Available at https://www.carergateway.gov.au/ (Accessed 12 September 2017).
Carers Victoria (2013) Invisible Care: Access to Carer Payment and Carer Allowance by Victorian Carers of a Person with a Mental Illness. Melbourne: Carers Association Victoria.
Cass, B, Smyth, C, Hill, T, Blaxland, M and Hamilton, M (2009) Young Carers in Australia: Understanding the Advantages and Disadvantages of their Care Giving. Canberra: Department of Families, Housing, Community Services and Indigenous Affairs.
Cleary, M, Freeman, A, Hunt, GE and Walter, G (2005) What patients and carers want to know: an exploration of information and resource needs in adult mental health services. Australian and New Zealand Journal of Psychiatry 39, 507513.
Coker, F, Williams, A, Hayes, L, Hamann, J and Harvey, C (2016) Exploring the needs of diverse consumers experiencing mental illness and their families through family psychoeducation. Journal of Mental Health 25, 197203.
Cummins, RA, Hughes, J, Tomyn, A, Gibson, A, Woerner, J and Lai, L (2007) The Wellbeing of Australians – Carer Health and Wellbeing. Geelong, Australia: Deakin University.
Department of Human Services (2016) Payments for carers. Available at www.humanservices.gov.au/customer/subjects/payments-carers (Accessed 26 April 2016).
Department of Social Services (2014) National respite for carers programme: respite service providers’ programme manual. Available at https://www.dss.gov.au/sites/default/files/.../nrcp_program_manual_2014-15.docx (Accessed 6 June 2016).
Department of Social Services (2015) Mental health: programmes and services. Available at www.dss.gov.au/our-responsibilities/mental-health/programmes-services (Accessed 1 December 2015).
Edwards, B, Higgins, DJ, Gray, M, Zmijewski, N and Kingston, M (2008) The Nature and Impact of Caring for Family Members with a Disability in Australia. Canberra: Australian Institute of Family Studies.
Hammond, T, Weinberg, MK and Cummins, RA (2014) The dyadic interaction of relationships and disability type on informal carer subjective well-being. Quality of Life Research 23, 15351542.
Harmer, J (2008) Pension Review: Background Paper. Canberra: Department of Families, Housing, Community Services and Indigenous Affairs.
Harris, M, Diminic, S, Marshall, C, Stockings, E and Degenhardt, L (2015) Estimating service demand for respite care among informal carers of people with psychological disabilities in Australia. Australian and New Zealand Journal of Public Health 39, 284292.
Hielscher, E, Diminic, S, Kealton, J, Harris, M, Lee, YY and Whiteford, H (2018) Hours of care and caring tasks performed by Australian carers of adults with mental illness: results from an online survey. Community Mental Health Journal, published online 23 February 2018, doi: 10.1007/s10597–018–0244-x.
Hill, T, Smyth, C, Thomson, C and Cass, B (2009) Young carers: their characteristics and geographical distribution. Report to the National Youth Affairs Research Scheme (NYARS). Canberra: Commonwealth of Australia.
Hunter Institute of Mental Health (2013) Supporting Those Who Care: Partners in Depression National Program Outcomes. Newcastle, Australia: Hunter Institute of Mental Health.
Jardim, C and Pakenham, KI (2009) Pilot investigation of the effectiveness of respite care for carers of an adult with mental illness. Clinical Psychologist 13, 8793.
Jardim, C and Pakenham, KI (2010 a) Carers of adults with mental illness: comparison of respite care users and non-users. Australian Psychologist 45, 5058.
Jardim, C and Pakenham, KI (2010 b) Carers’ views on respite care for adults with mental disorders. Advances in Mental Health 9, 8497.
Jeon, YH, Chenoweth, L and McIntosh, H (2007) Factors influencing the use and provision of respite care services for older families of people with a severe mental illness. International Journal of Mental Health Nursing 16, 96107.
Joint Standing Committee on the National Disability Insurance Scheme (2017) Provision of Services under the NDIS for People with Psychosocial Disabilities Related to a Mental Health Condition. Canberra: Commonwealth of Australia.
Kokanovic, R, Petersen, A and Klimidis, S (2006) ‘Nobody can help me… I am living through it alone’: experiences of caring for people diagnosed with mental illness in ethno-cultural and linguistic minority communities. Journal of Immigrant and Minority Health 8, 125135.
Lawn, S and McMahon, J (2015) Experiences of family carers of people diagnosed with borderline personality disorder. Journal of Psychiatric and Mental Health Nursing 22, 234243.
Loi, SM, Dow, B, Moore, K, Hill, K, Russell, M, Cyarto, E, Malta, S, Ames, D and Lautenschlager, NT (2015) The adverse mental health of carers: does the patient diagnosis play a role? Maturitas 82, 134138.
Mackay, C and Pakenham, KI (2012) A stress and coping model of adjustment to caring for an adult with mental illness. Community Mental Health Journal 48, 450462.
McAullife, D, Andriske, L, Moller, E, O'Brien, M, Breslin, P and Hickey, P (2009) ‘Who cares?’ An exploratory study of carer needs in adult mental health. Australian e-Journal for the Advancement of Mental Health 8, 112.
McMahon, J, Hardy, J and Carson, R (2010) Identifying the carer project: final report and recommendations. Adelaide, Australia: Private Mental Health Consumer Carer Network.
Mental Health Carers Tasmania (2015) Position paper: caring in a world of government policies. Available at www.stors.tas.gov.au/store/exlibris6/storage/2015/06/.../1350765.pdf (Accessed 15 December 2015).
Mental Health Council of Australia (2010) Mental Health Carers Report 2010. Canberra: MHCA.
Mental Health Council of Australia (2011) Consumer and Carer Experiences of Stigma from Mental Health and Other Health Professionals. Canberra: MHCA.
Mental Health Council of Australia (2012) Recognition and respect: mental health carers report 2012. Canberra: MHCA.
Mental Health Council of Australia and Carers Association of Australia (2000) Carers of people with mental illness project: final report. Canberra: MHCA.
Merikangas, KR, Nakamura, EF and Kessler, RC (2009) Epidemiology of mental disorders in children and adolescents. Dialogues in Clinical Neuroscience 11, 720.
National Mental Health Commission (2014) Contributing lives, thriving communities: report of the national review of mental health programmes and services. Sydney: NMHC.
Pirkis, J, Burgess, P, Hardy, J, Harris, M, Slade, T and Johnston, A (2010) Who cares? A profile of people who care for relatives with a mental disorder. Australian and New Zealand Journal of Psychiatry 44, 929937.
Poon, AWC, Harvey, C, Mackinnon, A and Joubert, L (2017) A longitudinal population-based study of carers of people with psychosis. Epidemiology and Psychiatric Sciences 26, 265275.
Poon, AWC, Joubert, L and Harvey, C (2018) Perceived needs of carers of people with psychosis: an Australian longitudinal population-based study of caregivers of people with psychotic disorders. Health and Social Care in the Community 26(3), 412422, published online 15 December 2017, doi: 10.1111/hsc.12530.
Royal Australian and New Zealand College of Psychiatrists (2015) Re: Improved assessment process for carer payment and carer allowance. Available at https://www.ranzcp.org/Files/Resources/Submissions/4346-RANZCP-SUB-President-to-K-Paton-re-DSS-Carer.aspx (Accessed 26 May 2016).
Smith-Merry, J, Hancock, N, Bresnan, A, Yen, I, Gilroy, J and Llewellyn, G (2018) Mind the Gap: the national disability insurance scheme and psychosocial disability. Final Report: stakeholder identified gaps and solutions. Sydney: The University of Sydney.
StataCorp (2009) Stata statistical software: release 11. StataCorp LP: College Station, TX.
Vecchio, N, Stevens, S and Cybinski, P (2008) Caring for people with a mental disability at home: Australian carers’ perceptions of service provision. Community Mental Health Journal 44, 125134.
Vecchio, N, Cybinski, P and Stevens, S (2009) The effect of disability on the needs of caregivers. International Journal of Social Economics 36, 782796.
Yesufu-Udechuku, A, Harrison, B, Mayo-Wilson, E, Young, N, Woodhams, P, Shiers, D, Kuipers, E and Kendall, T (2015) Interventions to improve the experience of caring for people with severe mental illness: systematic review and meta-analysis. British Journal of Psychiatry 206, 268274.

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