Dementia Australia is actively involved in advocating for change, for better care, treatments and supports for the 413,106 Australians currently living with dementia, their carers and families.
One way we achieve change is by ensuring the voices of those living with dementia are included in conversations about policy and legislative changes, which will affect them.
Below are some of the submissions we have made recently, to ensure that the voices of people living with dementia are heard and any changes made have a lasting and positive impact on the lives of people living with dementia.
Submission to the Australian Law Reform Commission’s (ALRC) Elder Abuse Discussion Paper - February 2017
The Attorney-General, Senator the Hon George Brandis QC, announced a new Inquiry for the ALRC on 'Protecting the Rights of Older Australians from Abuse' on 24 February 2016.
People living with dementia are particularly vulnerable to all forms of elder abuse, as such Dementia Australia has been following closely the progression of this vitally important area of legislative review and inquiry.
The ALRC released an Issues Paper on 15 June 2016 and called for submissions from the public, which closed on 18 August 2016. Dementia Australia made an initial submission which included examples from people who had experienced or witnessed elder abuse, involving a person living with dementia.
The ALRC released a Discussion Paper in December 2016, which included 43 proposals for law reform.
Key proposals were made concerning powers of investigation for public advocates and public guardians, enduring powers of attorney and enduring guardianship; family agreements, banking, aged care and social security, including:
- An online national register for enduring documents, and tighter witnessing and reporting requirements
- Expanding the role of public advocates and public guardians in responding to elder abuse
- Requiring banks to take reasonable steps to prevent financial abuse
- Allowing tribunals to hear disputes within families about assets-for-care arrangements—providing a low cost and less formal forum for dispute resolution
- For aged care, strengthening the compulsory reporting scheme by providing for independent oversight of complaints of abuse, enhancing employment screening processes, and the introduction of an official visitors scheme
- Support for a national plan with strategies to combat elder abuse beyond legal reforms
The proposal requiring banks to take reasonable steps to prevent financial abuse including training for banking staff, using software to identify suspicious transactions and, in appropriate cases, reporting suspected abuse to the relevant authorities is seen as a move in the right direction.
Improving the complaints process in aged care is also welcomed as this aims to strengthen the compulsory reporting scheme by providing independent oversight of complaints of abuse, enhancing employment screening processes, and the introduction of an official visitor’s scheme for aged care.
The final ALRC report will be presented to the Attorney-General in May 2017.
Submission to the Aged Care Financing Authority (ACFA) Discussion paper: Protection of Accommodation Bonds - February 2017
Dementia Australia reviewed the Aged Care Financing Authority’s paper (https://agedcare.health.gov.au/reform/public-discussion-paper-the-protection-of-residential-aged-care-lump-sum-payments) and identified Option 1a to maintain the status quo or 1b to retain the existing scheme and mandate retrospective cost-recovery levy would be preferred over Option 2, which would see a Guarantee Fund Pool and Annual Provider Levy introduced.
Option 2, seems to represent the greatest impost on providers as well as creating the most significant administrative burden for government – and therefore has the greatest potential for cost-shifting to consumers.
The delivery of some services and programs to people with dementia and their carers requires a high-level of specialised knowledge and a highly targeted approach, Dementia Australia is concerned about the current inability of many mainstream providers to deliver appropriate services to people living with dementia.
Specialist services such as dementia specific advocacy, information and support are critical. Such services require specialist staff and organisational experience, expertise, and commitment. A generic approach to the delivery of services and programs to people living with dementia, their families and carers and the indiscriminate introduction of competition and contestability would be likely to result in service failure and a lack of service access.
This is particularly true for priority population groups such as people with younger onset dementia, Aboriginal and Torres Strait Islander people, people from Culturally and Linguistically Diverse backgrounds, people living with dementia from LGBTI backgrounds, people living in rural or remote areas, or people with dementia who are homeless.
A common misconception is that people diagnosed with dementia are older and live in residential aged care. The reality is 70% of people with dementia are living in the community at the time of diagnosis.
Dementia is the single greatest cause of disability in older Australians (aged 65 years or older) and the fourth leading cause of disability burden overall. However, dementia is not just ‘an older person’s disease’. Younger onset dementia can develop before the age of 65.
While the total number of people with younger onset dementia in residential care is relatively small, in most cases it is not age appropriate and often care staff struggle to meet the needs of the person with dementia. This can lead to an exacerbation of symptoms and poor quality of life. It is therefore essential that other residential care options are developed for people with younger onset dementia.
A lack of awareness of dementia in the community can lead to discrimination, stigma and social isolation. An Australian National Population survey found that 44% of people believe that people diagnosed with dementia are discriminated against or treated unfairly, 22% indicated that they would feel uncomfortable spending time with someone who had dementia.
This often results in people living with dementia becoming disengaged from the workforce and community participation long before the condition requires them to.
A diagnosis of dementia should not lead to discrimination or deprive any Australian of being valued as an individual. The opportunities to contribute and pursue quality of life in the community through paid employment or volunteering opportunities are as important to people living with dementia as they are to all Australians.
Pre-Budget Submission 2017-18 - February 2017
Dementia Australia acknowledges that some headway has been made through existing programs as well as recent Federal funding announcements, but it is vital that specific priority areas are addressed more systematically and systemically through the 2017-18 Federal Budget.
Consumers have identified the following top priorities among the strategies identified in the National Framework for Action on Dementia, and Dementia Australia strongly recommends them for Federal Budget inclusion:
- Do more to reduce people’s risk of dementia so that onset of dementia in individuals is avoided or delayed, resulting in fewer people in the community having dementia.
- Ensure that people with dementia have access to quality aged care services.
- Improve access to quality respite care to support people with dementia living in the community, and their families and carers.
The funding sought for these priority areas is $19 million per annum for each of the three years from 1 July 2017, a total of $57 million over three years. We are urging the Federal Government to make these funds available in the upcoming Budget.
Submission to the Digital Health Strategy - January 2017
A well-functioning digital health system is an integral element of ongoing changes across the ageing and disability sectors, with large scale reforms aimed at implementing Consumer Directed Care (CDC).
These reforms aim to provide consumers with greater control over their own health and wellbeing, including who will deliver their services.
As such, the corresponding roll-out of a consumer controlled electronic health record system is important in supporting consumers to make informed choices, however a strategic focus on navigation, access and the appropriateness of digital technologies for people living with dementia, their families and carers is vital if a national digital health strategy is to be successful.
Submission to Integrated Carer Support Service Draft Model - December 2016
Dementia Australia is disappointed to note the proposed model has adhered to a generalist approach towards service delivery, which is unsuitable for the specialist needs of carers of people living with dementia.
We have noted in our previous submission to the consultation on designing the new integrated carer support service that it is critical the proposed Integrated Carer Support Service provides appropriate, high-quality support for carers of people living with dementia.
Carers of people with dementia need specialised support services that are specific to caring for a person with dementia. Mainstream approaches to education, counselling and other interventions will not meet the needs of many carers of people living with dementia.
The proposed model of Carer Support poses a real risk for people living with dementia and their carers by:
- Fragmenting the needs of people living with dementia and carers of people with dementia
- Impacting on access to timely services and support for people living with dementia (and their carers)
- Relying on digital dissemination of information
- Moving to a fee for service model and;
- Lack of dementia specialist knowledge (regional hub model that is staffed by people with basic qualifications)
If we are to achieve a care system that supports people to live in the community for as long as possible, then carers are an essential part of the equation. Most people living with dementia rely on informal carers to supplement formal care; often the hours available even at the highest level of home care package are simply not sufficient to support a person living with dementia to stay at home.
Submission to the Aged Care Legislated Review - December 2016
The submission contains 18 recommendations related to aged care and the review looks to where we need to take the aged care system in the future.
People with dementia will always need to be supported by mainstream services. However, it must be recognised that although dementia is a core part of aged care, it is not enough to rely on the provision of mainstream services to adequately provide for the needs of people with dementia.
Instead, there must be an approach that combines building capacity in mainstream services to provide quality care for people with dementia, along with the integration of specialist dementia services to support mainstream services where required.
The recommendations ask the review (among other things) to consider and include:
- Issues that relate to the safety and quality of care for people with dementia
- Standards and processes relating to quality and safety in aged care
- Support for carers
- Accessibility and useability of key consumer information sources such as My Aged Care
- Equitable and affordable access to appropriate care for people with dementia in the aged care system regulation of prices of aged care accommodation to address the variability in costs incurred by consumers
- The need for interpreters and appropriate cultural training for staff in aged care, mandated minimum ratios of staff to residents, and mandated minimum levels of qualified nursing staff in addition to a review of remuneration across aged care
- A residential aged care model that is as home-like as possible with a flexible approach to providing the best possible care for the individual resident (resident-centred care with measures in place to cater for people with dementia; culturally appropriate care; involvement of relatives and friends; effective pain management; minimal use of restraint; and use of specialist supports).
The recommendations to the Aged Care Legislated Review support Dementia Australia’s commitment to achieving a dementia-friendly Australia where people with dementia are respected, supported, empowered, and engaged in community life.
Submission to Community Visitors Scheme - November 2016
At 30 June 2014, 83% of people in permanent care needed a high level of care-compared with 76% in 2008. More than half (52%) of all people in permanent residential aged care had a diagnosis of dementia.
In addition to informed choice and person-centred care, quality aged care service delivery for people with dementia includes access by the person with dementia to meaningful social engagement.
This social engagement can be offered and supported through the Community Visitors Scheme and may assist people with dementia to be socially included in activities being held within residential aged care facilities. Volunteers participating in the Community Visitors Scheme must be provided with education and support to interact appropriately with people with dementia, and be provided with some suggestions on how to communicate and make the interaction meaningful for both the volunteer and the person with dementia.