DOI: 10.1111/ajag.12040
Policy and Practices Updates What do older Australians want?
Briony Dow National Ageing Research Institute; and Department of Psychiatry, University of Melbourne, Melbourne, Victoria, Australia
Patricia Sparrow Council on the Ageing, Melbourne, Victoria, Australia
Kirsten Moore National Ageing Research Institute, Melbourne, Victoria, Australia
Ellen Gaffy National Ageing Research Institute, Melbourne, Victoria, Australia
Ian Yates Council on the Ageing, Adelaide, South Australia, Australia
Objective: The objective of this study was to report older Australians’ views about what they want from aged care reforms expressed in submissions to the Productivity Commission’s ‘Inquiry into Caring for Older Australians’ and the ‘Conversations on Ageing’ (Conversations). Method: Consumer responses to the ‘Inquiry into Caring for Older Australians’ (n = 59) and findings from the Conversations (n = 31) conducted by the Honourable MarkButler with the Council on the Ageing were summarised. Results: Older people wanted to be included as full citizens in community life with their contributions acknowledged, including as carers. They wanted high quality, accessible and respectful services that supported their independence and over which they had control. They wanted fair and transparent funding arrangements and care that caters for diversity in Australia’s older people. They wanted reform to be soon and to have bipartisan support. Conclusion: This paper provides consumer perspectives to inform aged care policy, practice and research in Australia. Key words: consumer participation, old age assistance, old age homes, policy.
Background In the past 100 years, life expectancy in Australia has increased by 24–25 years [1], a considerable achievement for public health. Furthermore, society will be enriched by the contributions of a greater number of older people in future. However, there is increasing concern that the care requirements of this population will not be sustained by Australia’s Correspondence to: Dr Briony Dow, Health Promotion Division, National Ageing Research Institute. Email: [email protected] 236
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aged care system. These concerns led the Australian government to commission the Productivity Commission to undertake an Inquiry into Caring for Older Australians (Inquiry) in 2010. The Inquiry’s terms of reference were, in summary, to: examine social, clinical and institutional aspects of aged care in Australia; develop regulatory and funding options; examine how well the system was meeting the needs of specific needs groups; examine future workforce requirements; assess fiscal implications of any changes and recommend a transition from current arrangements to any new system. An extensive consultation process was undertaken with 925 written submissions and 13 public hearings. The Commission produced a draft report in January 2011 [2] and a final report in August 2011 [3]. The final report made a number of recommendations including: • Establishment of regional gateways to services where older people would have care needs assessed, ability to pay determined and assistance to navigate the system; • Older people to be entitled to care services and able to choose provider and location of care; • Older people to be expected to contribute to cost of care (with a maximum lifetime limit) and accommodation and living expenses where required; • A number of mechanisms for funding the cost of care and accommodation, including a proposed Australian Aged Care Home Credit Scheme; • Limits on numbers of aged care packages and residential care places phased out and distinctions between low and high care, and ordinary and extra service places removed; • Establishment of an Australian Aged Care Commission responsible for setting prices, quality and accreditation. There is very little literature on older Australians’ perceptions or expectations of aged care. Exploration of older service users’ perceptions of specific services, such as: retirement villages [4,5], residential care [6–9], home maintenance [10] and respite care [11] found that older people value meaningful and productive roles [7,8,10]; control over their lives and decision-making regarding services [6–8,10]; information to make decisions about care without ‘red tape’ [6,11], continuity of and good relationships with care staff [5,9,11]. Barriers to service access were: complexity of the system, including information provided [6,9,11]; previous bad experiences of respite [12,13]; and limited availability [4,12–14]. These Australasian Journal on Ageing, Vol 32 No 4 December 2013, 236–240 © 2013 National Ageing Research Institute Australasian Journal on Ageing © 2013 ACOTA
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studies give us some insight into older people’s views of the services they received, but not their wishes or expectations more broadly. There is also limited research into expectations of specific groups of older Australians. One Australian study involving interviews with six older Chinese people found that their expectations did not reflect traditional norms as they could not always rely on families for support [15]. A survey of 371 lesbian and gay people found that they expected to receive support in older age from a diverse source of informal supports [16]. However, there are many diverse groups within the older Australian population whose opinions have never been canvassed. In order to ensure views of older people were considered in the reform process, the Honourable Mark Butler, Federal Minister for Health and Ageing, conducted ‘Conversations on Ageing’ from August 2011 to February 2012 supported by COTA. This paper aimed to provide a summary of the issues identified in the Conversations and consumer responses to the Inquiry to more broadly disseminate the views of older Australians about what they want from aged care services. For the purposes of this paper, the term consumer includes older people, their family members, friends and supporters.
Conversations and Inquiry submissions Thirty-one Conversations were conducted with 3400 people attending. Conversations were held in every State and Territory, and participants invited through consumer (COTA, Returned Services League, Legacy, Alzheimer’s Australia, Carers Australia) and community organisations, including local governments. Although there was no formal collection of data about participant demographics, COTA staff who attended reported that participants were predominantly older people, with some service providers and people who worked in aged care. At the Conversations, Minister Butler provided a short introduction and then took questions and comments from the floor, recorded by COTA. Participants were invited to complete feedback sheets, and 241 were collected immediately after the sessions or forwarded to COTA later. These were analysed by COTA and the main themes and issues identified. The themes outlined later are based on issues discussed at all or almost all of the Conversations and illustrated with quotes taken from the feedback sheets. At the same time the Conversations were taking place, National Ageing and Research Institute undertook a review of consumer responses to the Inquiry. Of 925 submissions to the Inquiry, 85 (9.2%) were from consumers, including 43 (8.8%) during the initial consultation and 42 (9.6%) in response to the draft report. The pdf responses were downloaded into NVivo Version 8 for analysis. Not all pdf documents could be imported into NVivo and some were therefore excluded from analysis, including eight in the initial Australasian Journal on Ageing, Vol 32 No 4 December 2013, 236–240 © 2013 National Ageing Research Institute Australasian Journal on Ageing © 2013 ACOTA
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submission and 18 responses to the draft report, leaving 59 submissions (69.4% of all consumer submissions) for analysis. Of these, 40 (68%) were from service users, 12 (29%) from family members and seven (12%) from interested persons. Consumer responses were reviewed with the following questions in mind. What do consumers think about: • Services that should be provided by government? • Quality of services? • Accessibility of services? • Cost of services and who should pay? • Information and education for consumers and carers?
Themes and issues Conversations The Conversations and feedback sheets suggested that older Australians wanted: To be seen as valuable and active citizens Participants highlighted the contributions that older people make to the community and the benefits of a large population of older people. ‘There is a continuing need to recognise the value of the expertise that older people possess as well as their value as role models to younger generations. It is therefore important to encourage people to remain integrated in their local community and at the same time provide incentives/ resources to encourage intergenerational programs and educational/cultural change programs.’ They also noted their potential to advise on government policy, including aged care reform, ‘it is essential that consumers continue to have an independent voice with the capacity to advise government . . .’. To stay at home One of the strongest messages to come through was that older people wanted to be supported to stay at home as long as possible. There was some concern that this had not been adequately addressed in the Inquiry. ‘At present I am reasonably healthy and independent and want to remain that way as long as possible. For the future I want to stay in my own home as long as I can but have few family members nearby who could help. I live alone and am not able to retire with any superannuation as such a scheme did not exist in my working years. Therefore, it would be a comfort to know that help could be available to me if I became incapacitated.’ To be independent There was considerable discussion about the importance of staying fit and healthy in order to remain independent as long as possible. ‘I believe that keeping an active mind and being physically active (in line with my age) can defer the ageing process for a while.’ 237
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However there was concern that services focus too narrowly on physical well-being and that greater focus on mental well-being was needed. Participants said if they did require aged care they wanted a system they could understand and use, including: Easy access to services and an aged care system they can understand There was considerable support for the proposed Gateway as navigation of the service system was seen to be an issue. ‘ “Gateway” service a brilliant “must have” for family members trying to forward plan our family health issues for our elderly parents. Currently it’s a minefield – where do you go for good information?’ However, there was some concern that the Gateway should be locally based and questions raised as to how it would operate in practice. No service rationing Participants raised concerns about access to community services. They wanted assurance that they would be able to get the assistance they need to stay at home when and if they needed it. Comments about service availability included: ‘To keep the elderly at home until high care is required, a safe reliable package to help people stay longer (lawns, bins, shopping, cleaning etc) is needed.’ ‘Don’t forget our rural cousins, it’s harder in the country to provide similar services, especially if the carers live away or in the capital cities.’ Good information Older people wanted good information in order to make sense of their entitlements, find the services they need and make informed choices. They pointed out that decisions about aged care are often made at a time of crisis so they need the right information at the right time. ‘I have recently had to move my 90 year old mother into residential low aged care and even with a university education and a career in unionism, I found the process long, tortuous and complex. The bureaucracy was mind boggling and at one stage I had to resort to writing to my local MP.’ It was also noted that information needs may be different for different groups of older people, such as people from Culturally and Linguistically Diverse (CALD) backgrounds. Choice Conversations about choice included the choice between residential and community care, the choice of provider and the choice to have more control over management of care. ‘I have experienced the difficulties and indignities of aged care with both my parents and my in-laws and am concerned about the lack of choice available to us as we age.’ 238
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‘Like most of my friends, we have always been independent. We have worked all our lives, own a home and have bought up a family and would like to be able to continue to make our own decisions and live independently as part of the wider community and contribute to that community for as long as possible.’ A good death Participants wanted greater control over the circumstances of dying and death. This was passionately discussed in almost every conversation. Discussion ranged over voluntary euthanasia, end of life and palliative care, advance care directives, and place of death. ‘My friend who died last week did all the DYING WELL stuff –opted for no treatment – tried to stay at home-ended up in the hospice and ran into the 40 day rule (or something). She was beside herself about having to find other accommodation for a short period before she could be readmitted. Luckily she got too sick to be thrown out and died. Can we do something about this?’ Transparent and fair payment arrangements There was considerable discussion about payment for residential aged care. Participants wanted more information about what the proposed changes would mean in terms of the cost of care. In addition, some people were very concerned about the prospect of selling the principal home, in order to fund the cost of residential care accommodation, while others were happy to use their equity to fund aged care. While there were different views about how people should pay for aged care, there was agreement that any charges should be fair and reasonable and be the same for people of the same means regardless of where they live. Quality, including a skilled and respectful workforce Conversations about quality of care included stories of poor quality care, as well as many comments about the need for better pay, training and education, and sensitivity and skill in aged care workers. ‘Elderly people must be treated with respect and dignity and not just propped up in a chair all day and expected to feed themselves. Family members regularly take on this task for their loved ones.’ ‘I wish to reiterate my conviction that high-care residential aged care facilities need more than skeleton staff. Residents do not get enough “face-time’ with staff to help anchor them in the “here and now” and to lessen the feeling of loneliness many feel.’ Services that support and work in partnership with carers There was recognition among participants of the important role played by family carers in caring for older people and the need for services to work in partnership with and support carers. ‘I am a working carer with a family and just don’t have the time or “headspace” to manage the day to day care Australasian Journal on Ageing, Vol 32 No 4 December 2013, 236–240 © 2013 National Ageing Research Institute Australasian Journal on Ageing © 2013 ACOTA
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needs of my mother as well as everything else I need to do and my mother, who has a chronic illness and is frail, but lives happily independently, would not wish to manage her own care either.’ A system that caters for diversity and does not discriminate on the basis of race, cultural or sexual diversity or geographical location There were numerous questions to the Minister and recorded on feedback sheets about catering for diversity in the older people. Many of these questions related to sexual diversity: ‘Like many ageing I want to stay in my home as much as possible as I age. Will I get the choice of providers of services? I am keen to have GLBT [Gay, Lesbian, Bisexual, Transgender] friendly staff. I do not want to have to hide my sexuality and nor do my friends and worry about church based groups being funded to do this.’ The government to address service gaps In addition to the issues raised earlier, which were generally about how older people are regarded in society and the type and quality of services available, there were also some specific gaps identified. The need for public housing and community transport for older people was identified, dental services were identified as a need, especially in residential care, and better support for people with dementia, including younger onset dementia was also identified as needing greater government focus. More emphasis on prevention and research Finally, there were a number of comments and questions about the need for more research, including, ‘any research regarding factors that determine which individuals end up in residential care versus remaining in their home.’ At the Conversations, the importance of research into the causes and treatments dementia were regularly raised, often with a plea for greater investment in research. Reform to happen soon and to have bi-partisan support A number of questions asked of the Minister indicated that older people were keen to see reform in the aged care system, to see it soon and to ensure it will endure in the event of a change of government. They asked, ‘Would like to know how long this is going to take? – Are all services able to assist those in need? – i.e. Home care – Gardeners, Handymen, home nursing, transport all at this time is stretched past their limits.’ Consumer submissions The findings of the review of consumer responses to the Inquiry were broadly consistent with the Conversations. Consumers were calling for a simplified system with less bureaucracy, less duplication and a single entry point. There was also a call for more consumer and carer control over community care packages. Better recognition of the contribution of family carers was also raised. Australasian Journal on Ageing, Vol 32 No 4 December 2013, 236–240 © 2013 National Ageing Research Institute Australasian Journal on Ageing © 2013 ACOTA
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Consumers wanted greater clarity regarding payment for residential care, especially the bond requirements and transparency about how funds are used. They also identified contractual arrangements with retirement villages as requiring further clarification. They noted that being required to sell or borrow against their primary residence to pay for accommodation or care could cause problems, including financial difficulties for the marital partner left living in the primary residence, and reluctance on the part of the older person and/or their family to take up residential care as it could impact upon inheritance. In addition, the principal residence often has emotional and social significance, which should be acknowledged when an older person has to relinquish it. Consumers also called for better quality aged care staffing, and suggested that better pay, better education and a focus on holistic rather than technical or task focused care competencies would improve the quality of care. Consumers also identified the importance of support and advocacy during times of care transition, such as from hospital or home to residential care for the older person and their carers. The issue of older Australians having diverse care needs was also raised, specifically, the needs of older people from CALD Backgrounds, GLBT older people and Indigenous Australians. Some consumers also identified health promotion information and preventive health strategies as an important aspect of caring for older Australians. Finally, the issues of better engagement of older people in planning, decision-making, control and evaluation of services was raised.
Conclusion This report cannot claim to represent all older Australians as there were only a small number of consumer responses to the Inquiry and not all of them have been included here, there is limited literature that includes the opinions of older Australians, and not all groups of older Australians would have been equally represented at the Conversations. However, there is considerable consistency in the messages and themes identified in these three sources of information that should be taken into account by service providers, government policy makers, academics and advocates for older people and their carers. Older Australians want to be included as full citizens in community life and have their contributions acknowledged, including as contributors to the care system as carers. They want knowledge and services that support them to maintain their independence as long as possible. They want clear information and a sensible system of care services that is able to respond to their needs. They want funding arrangements, including their contributions, to be fair and transparent and they want care that caters for the diversity of Australia’s older people. Most of all they want reform, they want it soon and they want it to have bipartisan support. 239
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Key Points • This article gives a rare insight into what older Australians want from the aged care system. • Older Australians want to be included as full citizens in community life. • If support services are needed, older Australians want them to be easy to access, high quality and to cater for the diversity of the older population.
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References 1 2 3 4 5
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Australian Institute of Health and Welfare. Mortality over the Twentieth Century in Australia: Trends and Patterns in Major Causes of Death. Canberra: Australian Institute of Health and Welfare, 2006. Productivity Commission. Caring for Older Australians Draft Inquiry Report. Canberra: Australian Government Productivity Commission, 2011. Productivity Commission. Caring for Older Australians Final Inquiry Report. Canberra: Australian Government Productivity Commission, 2011. Cheek J, Ballantyne A, Byers L, Quan J. Improving the retirement village to residential aged care transition. Australian Health Review 2006; 30: 344–352. Cheek J, Ballantyne A, Byers L, Quan J. From retirement village to residential aged care: What older people and their families say. Health & Social Care in the Community 2007; 15: 8–17.
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Cheek J, Ballantyne A. Moving them on and in: The process of searching for and selecting an aged care facility. Qualitative Health Research 2001; 11: 221–237. Chou SC, Boldy D, Lee AH. Measuring resident satisfaction in residential aged care. The Gerontologist 2001; 41: 623–631. Marshall E, Mackenzie L. Adjustment to residential care: The experience of newly admitted residents to hostel accommodation in Australia. Australian Occupational Therapy Journal 2008; 55: 123–132. Pierce G, Morphett L. Still Largely on the outside: The Caring Experiences of Relatives and Friends of Older People Who Live in Aged Care Facilities in Victoria. Footscray: Carers Victoria, 2007. de Jonge DM, Jones A, Phillips R, Chung M. Understanding the essence of home: Older people's experience of home in Australia. Occupational Therapy International 2011; 18: 39–47. Stockwell-Smith G, Kellett U, Moyle W. Why carers of frail older people are not using available respite services: An Australian study. Journal of Clinical Nursing 2010; 19: 2057–2064. Brodaty H, Thomson C, Thompson C, Fine M. Why caregivers of people with dementia and memory loss don't use services. International Journal of Geriatric Psychiatry 2005; 20: 537–546. Holland KE, Blood RW. Carers' Perspectives on Caring: A Qualitative Analysis of Open-Ended Responses to the Carer Health and Wellbeing Index Survey 2007. Canberra: Faculty of Communication and International Studies, University of Canberra for Carers Australia, 2008. Bruce DG, Paterson A. Barriers to community support for the dementia carer: A qualitative study. International Journal of Geriatric Psychiatry 2000; 15: 451–457. Lo M, Russell C. Family care: An exploratory study of experience and expectations among older Chinese immigrants in Australia. Contemporary Nurse 2007; 25: 31–38. Hughes M. Expectations of later life support among lesbian and gay Queenslanders. Australasian Journal on Ageing 2010; 29: 161– 166.
Australasian Journal on Ageing, Vol 32 No 4 December 2013, 236–240 © 2013 National Ageing Research Institute Australasian Journal on Ageing © 2013 ACOTA
Policy and Practices Updates What do older Australians want?
Briony Dow National Ageing Research Institute; and Department of Psychiatry, University of Melbourne, Melbourne, Victoria, Australia
Patricia Sparrow Council on the Ageing, Melbourne, Victoria, Australia
Kirsten Moore National Ageing Research Institute, Melbourne, Victoria, Australia
Ellen Gaffy National Ageing Research Institute, Melbourne, Victoria, Australia
Ian Yates Council on the Ageing, Adelaide, South Australia, Australia
Objective: The objective of this study was to report older Australians’ views about what they want from aged care reforms expressed in submissions to the Productivity Commission’s ‘Inquiry into Caring for Older Australians’ and the ‘Conversations on Ageing’ (Conversations). Method: Consumer responses to the ‘Inquiry into Caring for Older Australians’ (n = 59) and findings from the Conversations (n = 31) conducted by the Honourable MarkButler with the Council on the Ageing were summarised. Results: Older people wanted to be included as full citizens in community life with their contributions acknowledged, including as carers. They wanted high quality, accessible and respectful services that supported their independence and over which they had control. They wanted fair and transparent funding arrangements and care that caters for diversity in Australia’s older people. They wanted reform to be soon and to have bipartisan support. Conclusion: This paper provides consumer perspectives to inform aged care policy, practice and research in Australia. Key words: consumer participation, old age assistance, old age homes, policy.
Background In the past 100 years, life expectancy in Australia has increased by 24–25 years [1], a considerable achievement for public health. Furthermore, society will be enriched by the contributions of a greater number of older people in future. However, there is increasing concern that the care requirements of this population will not be sustained by Australia’s Correspondence to: Dr Briony Dow, Health Promotion Division, National Ageing Research Institute. Email: [email protected] 236
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aged care system. These concerns led the Australian government to commission the Productivity Commission to undertake an Inquiry into Caring for Older Australians (Inquiry) in 2010. The Inquiry’s terms of reference were, in summary, to: examine social, clinical and institutional aspects of aged care in Australia; develop regulatory and funding options; examine how well the system was meeting the needs of specific needs groups; examine future workforce requirements; assess fiscal implications of any changes and recommend a transition from current arrangements to any new system. An extensive consultation process was undertaken with 925 written submissions and 13 public hearings. The Commission produced a draft report in January 2011 [2] and a final report in August 2011 [3]. The final report made a number of recommendations including: • Establishment of regional gateways to services where older people would have care needs assessed, ability to pay determined and assistance to navigate the system; • Older people to be entitled to care services and able to choose provider and location of care; • Older people to be expected to contribute to cost of care (with a maximum lifetime limit) and accommodation and living expenses where required; • A number of mechanisms for funding the cost of care and accommodation, including a proposed Australian Aged Care Home Credit Scheme; • Limits on numbers of aged care packages and residential care places phased out and distinctions between low and high care, and ordinary and extra service places removed; • Establishment of an Australian Aged Care Commission responsible for setting prices, quality and accreditation. There is very little literature on older Australians’ perceptions or expectations of aged care. Exploration of older service users’ perceptions of specific services, such as: retirement villages [4,5], residential care [6–9], home maintenance [10] and respite care [11] found that older people value meaningful and productive roles [7,8,10]; control over their lives and decision-making regarding services [6–8,10]; information to make decisions about care without ‘red tape’ [6,11], continuity of and good relationships with care staff [5,9,11]. Barriers to service access were: complexity of the system, including information provided [6,9,11]; previous bad experiences of respite [12,13]; and limited availability [4,12–14]. These Australasian Journal on Ageing, Vol 32 No 4 December 2013, 236–240 © 2013 National Ageing Research Institute Australasian Journal on Ageing © 2013 ACOTA
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studies give us some insight into older people’s views of the services they received, but not their wishes or expectations more broadly. There is also limited research into expectations of specific groups of older Australians. One Australian study involving interviews with six older Chinese people found that their expectations did not reflect traditional norms as they could not always rely on families for support [15]. A survey of 371 lesbian and gay people found that they expected to receive support in older age from a diverse source of informal supports [16]. However, there are many diverse groups within the older Australian population whose opinions have never been canvassed. In order to ensure views of older people were considered in the reform process, the Honourable Mark Butler, Federal Minister for Health and Ageing, conducted ‘Conversations on Ageing’ from August 2011 to February 2012 supported by COTA. This paper aimed to provide a summary of the issues identified in the Conversations and consumer responses to the Inquiry to more broadly disseminate the views of older Australians about what they want from aged care services. For the purposes of this paper, the term consumer includes older people, their family members, friends and supporters.
Conversations and Inquiry submissions Thirty-one Conversations were conducted with 3400 people attending. Conversations were held in every State and Territory, and participants invited through consumer (COTA, Returned Services League, Legacy, Alzheimer’s Australia, Carers Australia) and community organisations, including local governments. Although there was no formal collection of data about participant demographics, COTA staff who attended reported that participants were predominantly older people, with some service providers and people who worked in aged care. At the Conversations, Minister Butler provided a short introduction and then took questions and comments from the floor, recorded by COTA. Participants were invited to complete feedback sheets, and 241 were collected immediately after the sessions or forwarded to COTA later. These were analysed by COTA and the main themes and issues identified. The themes outlined later are based on issues discussed at all or almost all of the Conversations and illustrated with quotes taken from the feedback sheets. At the same time the Conversations were taking place, National Ageing and Research Institute undertook a review of consumer responses to the Inquiry. Of 925 submissions to the Inquiry, 85 (9.2%) were from consumers, including 43 (8.8%) during the initial consultation and 42 (9.6%) in response to the draft report. The pdf responses were downloaded into NVivo Version 8 for analysis. Not all pdf documents could be imported into NVivo and some were therefore excluded from analysis, including eight in the initial Australasian Journal on Ageing, Vol 32 No 4 December 2013, 236–240 © 2013 National Ageing Research Institute Australasian Journal on Ageing © 2013 ACOTA
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submission and 18 responses to the draft report, leaving 59 submissions (69.4% of all consumer submissions) for analysis. Of these, 40 (68%) were from service users, 12 (29%) from family members and seven (12%) from interested persons. Consumer responses were reviewed with the following questions in mind. What do consumers think about: • Services that should be provided by government? • Quality of services? • Accessibility of services? • Cost of services and who should pay? • Information and education for consumers and carers?
Themes and issues Conversations The Conversations and feedback sheets suggested that older Australians wanted: To be seen as valuable and active citizens Participants highlighted the contributions that older people make to the community and the benefits of a large population of older people. ‘There is a continuing need to recognise the value of the expertise that older people possess as well as their value as role models to younger generations. It is therefore important to encourage people to remain integrated in their local community and at the same time provide incentives/ resources to encourage intergenerational programs and educational/cultural change programs.’ They also noted their potential to advise on government policy, including aged care reform, ‘it is essential that consumers continue to have an independent voice with the capacity to advise government . . .’. To stay at home One of the strongest messages to come through was that older people wanted to be supported to stay at home as long as possible. There was some concern that this had not been adequately addressed in the Inquiry. ‘At present I am reasonably healthy and independent and want to remain that way as long as possible. For the future I want to stay in my own home as long as I can but have few family members nearby who could help. I live alone and am not able to retire with any superannuation as such a scheme did not exist in my working years. Therefore, it would be a comfort to know that help could be available to me if I became incapacitated.’ To be independent There was considerable discussion about the importance of staying fit and healthy in order to remain independent as long as possible. ‘I believe that keeping an active mind and being physically active (in line with my age) can defer the ageing process for a while.’ 237
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However there was concern that services focus too narrowly on physical well-being and that greater focus on mental well-being was needed. Participants said if they did require aged care they wanted a system they could understand and use, including: Easy access to services and an aged care system they can understand There was considerable support for the proposed Gateway as navigation of the service system was seen to be an issue. ‘ “Gateway” service a brilliant “must have” for family members trying to forward plan our family health issues for our elderly parents. Currently it’s a minefield – where do you go for good information?’ However, there was some concern that the Gateway should be locally based and questions raised as to how it would operate in practice. No service rationing Participants raised concerns about access to community services. They wanted assurance that they would be able to get the assistance they need to stay at home when and if they needed it. Comments about service availability included: ‘To keep the elderly at home until high care is required, a safe reliable package to help people stay longer (lawns, bins, shopping, cleaning etc) is needed.’ ‘Don’t forget our rural cousins, it’s harder in the country to provide similar services, especially if the carers live away or in the capital cities.’ Good information Older people wanted good information in order to make sense of their entitlements, find the services they need and make informed choices. They pointed out that decisions about aged care are often made at a time of crisis so they need the right information at the right time. ‘I have recently had to move my 90 year old mother into residential low aged care and even with a university education and a career in unionism, I found the process long, tortuous and complex. The bureaucracy was mind boggling and at one stage I had to resort to writing to my local MP.’ It was also noted that information needs may be different for different groups of older people, such as people from Culturally and Linguistically Diverse (CALD) backgrounds. Choice Conversations about choice included the choice between residential and community care, the choice of provider and the choice to have more control over management of care. ‘I have experienced the difficulties and indignities of aged care with both my parents and my in-laws and am concerned about the lack of choice available to us as we age.’ 238
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‘Like most of my friends, we have always been independent. We have worked all our lives, own a home and have bought up a family and would like to be able to continue to make our own decisions and live independently as part of the wider community and contribute to that community for as long as possible.’ A good death Participants wanted greater control over the circumstances of dying and death. This was passionately discussed in almost every conversation. Discussion ranged over voluntary euthanasia, end of life and palliative care, advance care directives, and place of death. ‘My friend who died last week did all the DYING WELL stuff –opted for no treatment – tried to stay at home-ended up in the hospice and ran into the 40 day rule (or something). She was beside herself about having to find other accommodation for a short period before she could be readmitted. Luckily she got too sick to be thrown out and died. Can we do something about this?’ Transparent and fair payment arrangements There was considerable discussion about payment for residential aged care. Participants wanted more information about what the proposed changes would mean in terms of the cost of care. In addition, some people were very concerned about the prospect of selling the principal home, in order to fund the cost of residential care accommodation, while others were happy to use their equity to fund aged care. While there were different views about how people should pay for aged care, there was agreement that any charges should be fair and reasonable and be the same for people of the same means regardless of where they live. Quality, including a skilled and respectful workforce Conversations about quality of care included stories of poor quality care, as well as many comments about the need for better pay, training and education, and sensitivity and skill in aged care workers. ‘Elderly people must be treated with respect and dignity and not just propped up in a chair all day and expected to feed themselves. Family members regularly take on this task for their loved ones.’ ‘I wish to reiterate my conviction that high-care residential aged care facilities need more than skeleton staff. Residents do not get enough “face-time’ with staff to help anchor them in the “here and now” and to lessen the feeling of loneliness many feel.’ Services that support and work in partnership with carers There was recognition among participants of the important role played by family carers in caring for older people and the need for services to work in partnership with and support carers. ‘I am a working carer with a family and just don’t have the time or “headspace” to manage the day to day care Australasian Journal on Ageing, Vol 32 No 4 December 2013, 236–240 © 2013 National Ageing Research Institute Australasian Journal on Ageing © 2013 ACOTA
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needs of my mother as well as everything else I need to do and my mother, who has a chronic illness and is frail, but lives happily independently, would not wish to manage her own care either.’ A system that caters for diversity and does not discriminate on the basis of race, cultural or sexual diversity or geographical location There were numerous questions to the Minister and recorded on feedback sheets about catering for diversity in the older people. Many of these questions related to sexual diversity: ‘Like many ageing I want to stay in my home as much as possible as I age. Will I get the choice of providers of services? I am keen to have GLBT [Gay, Lesbian, Bisexual, Transgender] friendly staff. I do not want to have to hide my sexuality and nor do my friends and worry about church based groups being funded to do this.’ The government to address service gaps In addition to the issues raised earlier, which were generally about how older people are regarded in society and the type and quality of services available, there were also some specific gaps identified. The need for public housing and community transport for older people was identified, dental services were identified as a need, especially in residential care, and better support for people with dementia, including younger onset dementia was also identified as needing greater government focus. More emphasis on prevention and research Finally, there were a number of comments and questions about the need for more research, including, ‘any research regarding factors that determine which individuals end up in residential care versus remaining in their home.’ At the Conversations, the importance of research into the causes and treatments dementia were regularly raised, often with a plea for greater investment in research. Reform to happen soon and to have bi-partisan support A number of questions asked of the Minister indicated that older people were keen to see reform in the aged care system, to see it soon and to ensure it will endure in the event of a change of government. They asked, ‘Would like to know how long this is going to take? – Are all services able to assist those in need? – i.e. Home care – Gardeners, Handymen, home nursing, transport all at this time is stretched past their limits.’ Consumer submissions The findings of the review of consumer responses to the Inquiry were broadly consistent with the Conversations. Consumers were calling for a simplified system with less bureaucracy, less duplication and a single entry point. There was also a call for more consumer and carer control over community care packages. Better recognition of the contribution of family carers was also raised. Australasian Journal on Ageing, Vol 32 No 4 December 2013, 236–240 © 2013 National Ageing Research Institute Australasian Journal on Ageing © 2013 ACOTA
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Consumers wanted greater clarity regarding payment for residential care, especially the bond requirements and transparency about how funds are used. They also identified contractual arrangements with retirement villages as requiring further clarification. They noted that being required to sell or borrow against their primary residence to pay for accommodation or care could cause problems, including financial difficulties for the marital partner left living in the primary residence, and reluctance on the part of the older person and/or their family to take up residential care as it could impact upon inheritance. In addition, the principal residence often has emotional and social significance, which should be acknowledged when an older person has to relinquish it. Consumers also called for better quality aged care staffing, and suggested that better pay, better education and a focus on holistic rather than technical or task focused care competencies would improve the quality of care. Consumers also identified the importance of support and advocacy during times of care transition, such as from hospital or home to residential care for the older person and their carers. The issue of older Australians having diverse care needs was also raised, specifically, the needs of older people from CALD Backgrounds, GLBT older people and Indigenous Australians. Some consumers also identified health promotion information and preventive health strategies as an important aspect of caring for older Australians. Finally, the issues of better engagement of older people in planning, decision-making, control and evaluation of services was raised.
Conclusion This report cannot claim to represent all older Australians as there were only a small number of consumer responses to the Inquiry and not all of them have been included here, there is limited literature that includes the opinions of older Australians, and not all groups of older Australians would have been equally represented at the Conversations. However, there is considerable consistency in the messages and themes identified in these three sources of information that should be taken into account by service providers, government policy makers, academics and advocates for older people and their carers. Older Australians want to be included as full citizens in community life and have their contributions acknowledged, including as contributors to the care system as carers. They want knowledge and services that support them to maintain their independence as long as possible. They want clear information and a sensible system of care services that is able to respond to their needs. They want funding arrangements, including their contributions, to be fair and transparent and they want care that caters for the diversity of Australia’s older people. Most of all they want reform, they want it soon and they want it to have bipartisan support. 239
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Key Points • This article gives a rare insight into what older Australians want from the aged care system. • Older Australians want to be included as full citizens in community life. • If support services are needed, older Australians want them to be easy to access, high quality and to cater for the diversity of the older population.
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Australasian Journal on Ageing, Vol 32 No 4 December 2013, 236–240 © 2013 National Ageing Research Institute Australasian Journal on Ageing © 2013 ACOTA
