Submissions contributing to change

Advocating for better care

Dementia Australia is actively involved in advocating for better care, treatments and supports for the 413,106 Australians currently living with dementia, their families and carers. 

One way we champion change is by ensuring the voices of those living with dementia are included in conversations about policy and legislative change.

The Australian Government recently announced an additional $649 million per year to create 9,911 aged care places. A number of those places give priority to people with dementia, special needs groups or respite.

Three quarters of these new residential places were provided to develop new aged care services, while the remainder will enable existing aged care providers to expand their current facilities.

People living in rural, regional and remote Australia will also benefit, with 2,719 residential places being offered for services outside metropolitan areas.

Dementia Australia welcomes the number of dementia-specific places and notes that the allocations acknowledge the prevalence of dementia in residential care.

However, this also raises concerns about the ability of the sector to appropriately meet the needs of people living with dementia when there is not a broader funded national strategy for dementia.

Such a strategy would not only address the rising numbers of Australians being diagnosed with dementia, but ensure there are a range of funded measures for appropriate, dementia specific care that are provided by highly-trained and specialist staff.

Dementia Australia has also made numerous other recommendations spanning strategies for diversity, Culturally and Linguistically Diverse (CALD) communities, people from Lesbian, Gay, Bisexual, Transgender, Intersex (LGBTI) backgrounds and other elements of aged care reform. 

With recent data projections demonstrating migrants are ageing at a significantly faster rate than the general population (by 2020 about 30% of the aged population 65 years and older will be from CALD backgrounds), it is clear that the aged care sector is under-resourced to meet the needs of older people with dementia from a CALD background.

Consumers often tell us of the difficulty in finding appropriate dementia care let alone services that can be highly-responsive to CALD needs – including appropriate language strategies for consumers who revert to their native language as their dementia progresses, or appropriate behaviour management strategies for consumers for whom culturally-specific experiences may trigger upsetting or distressing memories.

We are seeing the emergence of an increasingly consumer-driven, demand-driven marketplace, but there are indications are that vulnerable, resource-intensive consumers, including people from CALD backgrounds with dementia (and especially those with significant behavioural and psychological symptoms), continue to be under-serviced because of the complexity of their needs. 

While market forces have the potential to drive access and quality where there is competition, in many areas of Australia (especially in rural and remote areas) there is little or no choice of service providers or residential aged care facilities, let alone services that cater specifically to the needs of people from diverse ethnic backgrounds.

This shortfall has the added effect of creating an environment in which people living with dementia, their families and carers may be concerned about challenging service quality or exercising their choice to exit and transfer to another service.

From a provider perspective, while dementia – and a broad range of ‘special needs’ – are treated as ‘core business’ in an aged care policy context, the operational reality is providers are constantly trying to balance a broad range of specialist care needs with clinical efficiencies and financial sustainability.

Further investment – and support for such investment – is required to ensure aged care providers are better prepared to meet the needs of people from CALD backgrounds who are impacted by dementia. 

The framework should include interpreting services, translated resources, bilingual health professionals, specific training and education for all staff to deliver culturally competent services.

It is also important to consider how dementia care can be best delivered to CALD communities living in rural and regional areas. This is especially true for the increasing number of migrants on temporary working visas in these areas and small communities of refugees and other humanitarian entrants. 

Similar access challenges face people from a Lesbian, Gay, Bisexual, Transgender, Intersex (LGBTI) background.

By 2050, it is estimated that almost 1 million people in Australia will be living with dementia. As LGBTI people are estimated to make up 11% of the Australian general population, based on current rates there will be approximately 100,000 LGBTI people with dementia by that time. 

In addition to the challenges faced by many consumers when it comes to dementia services (lack of choice, access and information), people who identify as LGBTI may also face additional challenges, such as social isolation, relationship recognition and steering through a complicated legislative environment. 

Significantly, many LGBTI consumers who are now facing a dementia diagnosis became adults at a time when social and legal discrimination was prevalent. As a result, the invasion of privacy that community services and residential care may involve can create a fear of coming out to services providers and may lead to anxiety and depression.

Many LGBTI people have been rejected from their biological families. They may have experienced discrimination and stigma. Their access to service may be further hampered by cultural diversity within LGBTI communities: for instance, some groups historically have had more of a voice than others.

Within the LGBTI umbrella, some groups are less represented than others: for instance, bisexual people have spoken to Dementia Australia about feeling less represented than other LGBTI groups.

It is therefore important that aged care sector is able to consider more marginalised members of the community when developing strategies for inclusiveness.

Dementia Australia looks forward to progressing the Aged Care Diversity Framework consultation as its development continues. For more information about these submissions and others please visit the policy section of the website.