He was shocked when he was told Mrs Hynes' condition was incurable and degenerative.

"It left us completely bewildered as we had little prior knowledge of this dreadful disease," he said.

Her diagnoses came in 2010 and she continued to manage a reasonably normal life until around 2017.

The heartbreak and frustration that followed led to Mr Hynes putting in a submission into the Royal Commission in Violence Abuse Neglect and Exploitation - 'Health Care for People Living with Cognitive Disability - Issues Paper'.

His 33-page document is hard to read and the despair Mr Hynes is facing almost springs from its pages.

The 80-year-old Mollymook resident hopes in the future there will be more support for people suffering from dementia and their carers.

"We have found just how difficult it is for both the patient and their carer when they are of advanced years living in a regional area of Australia," the Mollymook resident said.

They have had to "attempt to confront the uncoordinated and impenetrable barriers to accessing the services they need".

As a carer, he would have liked more support.

"As Maureen's disease deteriorates it is constantly presenting situations that are completely foreign to me in my role as her carer," he said.

"I, like most carers, have no formal training either in medicine or geriatrics. I therefore need leadership, guidance and support from people who are trained to assist people in my position.

"Apart from daycare respite, there is no other regular or meaningful support provided in the Southern Shoalhaven District (Sussex Inlet to Durras Lakes).

"I know that carers living in the Southern Shoalhaven district face the same issues as do I."

He said dementia services are only available to them in Nowra, which is nearly an hour's drive and impossible to access by public transport.

Without infrastructure and support, Mr Hynes said he and many others feel they are on their own.

"Many of those carers are like me, older people. They no longer have the energy or the knowledge or ability to actively seek out the types of care, services and advice that they need to continue to provide the care that their loved ones require," he said.

Mr Hynes said as he tries to get help he cannot spend time with his wife, which causes them both much distress.

"From my own experience, I am totally occupied spending time and effort making phone calls and searching the internet trying to find out if there are particular things available that would help me add value to her life," he said.

"Carers who go through these frustrations every day should be able to bring their issues to someone who has the right knowledge of these matters and an understanding of how to access a coordinated response that will solve these issues.

"At the moment each individual carer is on their own in seeking solutions to the problems they face."

The concerned carer said ideally each person should have a case manager for the remainder of their life once a dementia diagnosis is made.

He added more support is needed in districts like Ulladulla.

"One strategy that would have an enormous and immediate impact for people suffering dementia and their carers in the Southern Shoalhaven district would be to have those who currently serve them from Nowra and beyond, permanently based as part of a local team, at an office within the Ulladulla area, under the control of a local team manager," he said.

"Such a point of contact would facilitate people seeking care, services or advice having direct face-to-face contact with those responsible for directing them to services or forms of advice and/or assistance."

He said locally based staff at Ulladulla would be more effective in identifying the services that people with cognitive disability need to access and obtaining these within the local community.

Mr Hynes said the front-line staff, who do their best, are not to blame for his situation which many others are facing.

He said failures occur because they operate in an archaic, incompetent system in an organisational structure that belongs to another era and that lacks adequate funding or recognition.

"I stress that without the dedication of the local respite manager and volunteers in the field who provide limited respite, encouragement and support and who are forced to work within a system that is broken; we would have absolutely nothing and would be completely isolated," he said.

Mr Hynes feels a long-overdue investment in services for people in the Milton/Ulladulla is needed.

"As well as having a higher than average incidence of dementia, the people suffering dementia, because of their advanced age are considerably less mobile than others," he said.

"They cannot easily jump in the car and drive to some distant centre to seek help and advice. They have a higher risk of an accident on the treacherous Pacific Highway if they do.

"There is no rail-link between the Milton-Ulladulla area and the major centres within the ISLHD."

Once again he pleaded for more services in areas like Ulladulla.

"Concentrating services in large population centres effectively denies access to those services in the less populated but high need areas," he said.

"It also creates an additional significant public health risk for those living away from those centres when having to travel to access services."

The Mollymook resident said there are 15 residential aged care facilities located In the Shoalhaven, but only one of these is located in the area bounded by Milton/North Durras.

"In Southern Shoalhaven when it is time for a person to enter a Residential Aged Care facility from the Milton/Ulladulla area there is a scarce opportunity," he said.

"They may be lucky enough to obtain a place at Sarah Claydon - if someone can pull some strings.

"If not then the options are to travel to Sussex Inlet if a place is available, but more than likely to Bay and Basin or to Bateman's Bay - a distance of about 60 kilometres on a treacherous road.

"This limits carers access to their life-long partners in their declining years to about twice per week."

He hopes people will listen and learn.

"I hope my submission will, in some way, help to ensure those who follow us do not feel the despair, frustration and resentment that I and many other carers currently feel," he said.

We have only given you a summary of Mr Hynes' document and we also hope someone listens and learns.

His submission also outlines some issues with the Home Care Service.

He made many recommendations, including that urgent action needs to be taken to approve three Residential Aged Care Facilities in the Southern Shoalhaven Zone, that dementia should be placed in a separate stream within the health care system and MyAgedCare.

"The situation in the field is total despair," was how he concluded his submission.