Dementia services inadequate in country NSW

People with dementia and carers living in regional, rural and remote New South Wales deserve services that are flexible, locally appropriate and culturally safe to meet their individual needs, according to a discussion paper released by Alzheimer’s Australia NSW this week.

Living with Dementia in Regional NSW  highlights that while dementia brings challenges for all people with a diagnosis, those challenges are compounded in country areas by geographical isolation, travel distances, and limited services.

The paper was launched at Parliament House in Sydney on Wednesday at an event hosted by the NSW Parliamentary Friends of Dementia.

Speaking at the event, Alzheimer’s Australia NSW CEO John Watkins said it could take people living west of the Blue Mountains months to initially get access to a specialist then a confirmation of diagnosis, let alone access to services.

“It is not tolerable and should not be accepted,” Mr Watkins said. “Living with dementia brings challenges due to geographical isolation, travel distances and a lack of geriatricians, specialists and limited services.”

While governments have attempted to address these issues with a range of policy initiatives, the challenges still remain, he said. “We need services that are flexible, innovative, locally appropriate and culturally safe.”

Rather than seeking to “bash governments state and federal”, Mr Watkins said this report says dementia’s time has come.

“There have been things in front of us in the queue ­- paid maternity leave, disability care and child care – that’s acknowledged. Society can’t do everything at the same time but the time for good dementia care and aged care is now, and we need to raise our voices right across the state but particularly for regional communities,” Mr Watkins said.

Report recommendations

The discussion paper made 10 recommendations directed at federal, state and local governments and service providers. Among the recommendations are calls for:

• the NSW Government to fund services, programs and initiatives in the Dementia Services Framework Implementation Plan;
• the NSW Government to implement quality of care standards for its regional and rural Multipurpose Services that provide dementia services;
• any government funding dementia-specific services to have flexible guidelines to encourage innovation;
• communities across regional NSW to look at strategies to develop dementia-friendly communities; and
• service providers to build an evidence base of best practice dementia care by evaluating innovative service delivery models and engaging in knowledge translation.

Great services do exist

Mr Watkins said that despite the need for wide-ranging improvements to meet the needs of people living outside of NSW’s major cities, there were some great examples of quality care and service provision happening in the state, such as the Mobile Respite Team. Operating out of the Alzheimer’s Australia NSW’s Bega centre, the service travels to people’s homes in more remote areas.

Alzheimer Australia NSW regional manager Barbara Williams said an independent evaluation is underway but their evaluation of the Mobile Respite Service found its flexibility was the main reason for its success.

Another appreciated feature is that the service is inclusive and considers a couple’s needs when looking at the best services to suit the person with dementia and their carer, she said.

Mr Watkins also congratulated the discussion paper’s sponsor, The Whiddon Group, for its implementation of the humour-based therapy Play Up Program for people with dementia in all 19 of its care homes across the state.

The Whiddon Group’s chief operating officer Jo Caughtry said finding experienced and culturally relevant staff and providing specialist training and programs was a particular challenge in small rural communities.

“We work very hard to overcome these challenges and have found that agility, flexibility and proactive collaboration and partnerships with innovative organisations, local health services and community groups is often the only way to go,” Ms Caughtry said.

Those partnerships allow them to access specialist training on dementia; share their respite and dementia services; organise and participate in joint social events; and get local businesses to contribute to client enjoyment and relaxation, she said.

Download the paper (pdf): Living with Dementia in Regional NSW

Love, Loss and Laughter

At the conclusion of the event, the final leg of The Love, Loss and Laughter: Seeing Dementia Differently tour was launched by NSW MP and convenor of the NSW Parliamentary Friends of Dementia Leslie Williams.

The exhibition of nearly 100 photographs is on display in the Fountain Court at NSW Parliament House until 27 November.

Related AAA coverage: Capturing dementia