Carers play an important role when it comes to supporting people living with dementia – but who is caring for the carers?
When a person is diagnosed with dementia, it’s natural that family members and friends often want to provide a helping hand for their loved one.
There are more than 353,800 Australians living with dementia, and an estimated 1.2 million people are involved in some way in their care, many of which are informal carers who are providing ongoing and unpaid care and support, which can help the person with dementia live safely and well at home for longer.
Carer support is a vital factor which enables 70% of people with dementia to live in the community, which is most people’s preference. In fact, more than nine in ten people living with dementia in the community do so with informal carer support.
However, the impact on the carer’s life can be substantial. While some carers experience positive impacts, many carers experience negative effects on their emotional, psychological, and physical health, social activities, ability to work and finances.
Dementia Australia National CEO Carol Bennett said “unless we as a society do more to care for the carers, we will undoubtedly face a looming shortage of carers for the growing number of people with dementia in our community.”
The Department of Social Services (DSS) has released a discussion paper on designing the new integrated carer support service. This discussion paper includes a draft service concept for a new comprehensive approach from government to delivering services and improving outcomes for carers.
“Dementia Australia has provided a submission in response to the discussion paper, and we start by applauding the Australian Government’s recognition of the critical role that carers play, and the focus on support for these important positions,” Ms Bennett said.
“To enable people with dementia to live at home for as long as possible – which meets their preferences, and is also cost-effective for the health and aged care systems – it is critical that their carers are well supported.
“Research to date suggests that structured interventions that combine information, education, skills training, and psychosocial therapies, led by qualified professionals, delivered over a period of time, and with active participation by carers, make the most difference to carer outcomes.”
“The needs of different groups of carers vary, and a “one size fits all” approach will not work,” Ms Bennett said.
“Carers of people with dementia need specialised support services, which 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 with dementia.”
Dementia Australia services are recognised as effective and highly valuable in supporting carers, and our organisation brings immense experience and expertise to the provision of these evidenced-based services. It is critical that the government’s new Integrated Carer Support Service takes a networked approach, linking carers to the specialised services offered by Dementia Australia and other providers, to ensure that the needs of carers are met, and the capacity developed within specialised service providers is not lost.
It is also critical that the voices of carers themselves are paramount in guiding the development of carer support services.
Dementia Australia supports evidence based services, but there are some elements of carer support which currently lack strong research evidence but which are highly valued by carers - such as respite care and informal support groups.
Dementia Australia recommends that these services should be delivered through the Government’s new Integrated Carer Support Service, and at the same time, further research should be undertaken to further establish the effectiveness of these approaches.
Dementia Australia argues strongly for the inclusion of respite care as a key element of the Integrated Carer Support Service - this should include a dementia supplement for all forms of respite care, in recognition of the higher costs of caring for a person with dementia.
We also need to see greater flexibility in the provision of respite care, to make respite care more responsive to consumer needs and preferences, including better funding to meet the high demand for centre-based day respite and in-home day respite. We need measures to reduce direct and indirect cost barriers to accessing respite care; and we need a co-ordinated approach that links respite with timely access for carers to counselling and support services.
Case management through a “key worker” approach should also be considered for consumers and carers from particularly vulnerable groups: for example, people with dementia and their carers from Aboriginal and Torres Strait Islander communities, Culturally and Linguistically Diverse backgrounds, and LGBTI consumers.
Dementia Australia looks forward to the further development of the Integrated Carer Support Service, and we are hopeful that this service will help deliver more and better support for carers of people with dementia.
View Dementia Australia’s submission.