Dementia key workers are helping people with younger onset dementia negotiate tailored services and supporting them to live meaningful lives, write Anita Westera and Dave Fildes.
Funded by the Australian Department of Social Services, the Alzheimer’s Australia Younger Onset Dementia Key Worker Program was established in 2013 in recognition that people with younger onset dementia fell through the gaps between disability and aged care services.
Forty key workers were employed nationally to support people with younger onset dementia, their carers and family members and link them to relevant health, aged care, disability and general community organisations.
Importantly, the role also included capacity building in those other services to better meet the needs of people living with younger onset dementia. The Centre for Health Service Development at the University of Wollongong conducted an evaluation of the program between late 2013 and 2016.
The evaluation was designed to determine how successfully the program had been implemented, whether the desired results had been achieved and what lessons were learnt that could lay the groundwork for future support for people with younger onset dementia and their carers. The evaluation was based on consultation with 120 individuals representing consumers, industry, government and staff involved in the key worker program and an analysis of data from the program.
In the three years of the evaluation, the program supported nearly 3,500 clients; this included over 1,500 people living with younger onset dementia, and nearly 2,000 carers and family members.
According to key workers, many clients arrived to the program in crisis due to the impact of delays in diagnosis and the availability of appropriate support services. This was confirmed in the consultations with clients who spoke of the disruptions they had experienced in terms of their relationships, employment situation, finances and social lives. However, many spoke of their lives being transformed due to the key workers walking alongside them, helping identify their strengths and interests and negotiating with a range of organisations and services to develop responsive, innovative and, ideally, sustainable solutions.
The key workers are a mix of highly qualified healthcare professionals and experienced care workers. Many had tertiary qualifications in psychology or counselling, social work, health sciences and nursing.
It was initially expected that their role would be to link individuals to appropriate services. However, the dearth of services was soon evident, requiring the key workers to be far more hands-on in supporting their clients and resourceful in developing tailored services to support their clients’ goals.
They became known as ‘system wranglers’ due to their capacity to navigate across health, community and residential care services; general community resources, such as transport, education, sport and cultural activities, and specialist financial, legal, accommodation and employment services.
One of the benefits of being co-located within the broader Alzheimer’s Australia network meant that clients were able to be readily linked in with the available range of dementia education and support services, including specialist counselling.
Alzheimer’s Australia, in turn, has benefited from the opportunity to better its understanding of issues facing people with younger onset dementia and advocating on their behalf, as well as having a range of resources and service models that can be used within their network and the service system.
As with all new programs, there were challenges. There were many unknowns at the outset, most fundamentally, the actual number of people living with younger onset dementia; there was also a distinct lack of knowledge amongst health and care service providers about this group and the collateral impacts this might have in terms of families, finances and living arrangements.
Consequently, initially there were many information and awareness-raising sessions amongst aged, disability and health services, and capacity building activities within those services around the goals of individual clients.
During this time, reforms to aged care and disability services were introduced which limited support options for people with younger onset dementia. Changes in aged care effectively meant people under 65 with dementia were no longer able to access aged care services that previously were available to them. And while the introduction of the National Disability Insurance Scheme has potential in terms of longer term individualised packages of support, the experience in the pilot regions has been mixed and there continues to be uncertainty about how the needs of carers and family members will be supported in the new system.
The ageing and disability sectors have also become more competitive which has impacted on the willingness of some organisations to work collaboratively to develop innovative solutions for people living with younger onset dementia and their families.
In regional and remote areas, a major challenge for key workers was the almost complete lack of infrastructure that they could draw on to support their clients. Initial expectations of the program were that clients could be supported over the longer term of their dementia journey but as caseloads increased and policy reforms were implemented, this goal became increasingly difficult to sustain.
People living with younger onset dementia are in their mid-life, many of them have jobs, families, mortgages and life plans. They often experience long delays before obtaining a formal diagnosis, by which time their ability to sustain these elements have been compromised or ceased altogether.
The strengths of the key worker program have been the expertise of staff and their enterprise in building capacity within communities to enable people with younger onset dementia to continue to have meaningful lives.
The consumer-directed philosophy that underpins the program not only enhances the life of the individual, but of society more generally. It will be important to ensure that these twin objectives – individual and societal – continue to be part of any future operations of the program.
Anita Westera and Dave Fildes are research fellows with the Australian Health Services Research Institute at the University of Wollongong.
This article currently appears in the Autumn edition of Community Care Review magazine.