Shining a Light

RDNS Institute

Life is a rich patchwork of memories. Imagine how sad it must be to lose the memories that took a lifetime to create, to forget the faces and places that defined your life. Dementia is a different journey for every individual and there is no one-size-fits-all treatment and care program.

The RDNS (Royal District Nursing Service) Institute is the commercial arm of RDNS – Australia’s oldest home nursing and aged care provider. It is arguably the country’s most innovative and progressive with services across the continent and in New Zealand, a world-class health call centre and a suite of tailored education and consultancy services.

While the Institute is well known for its work in the areas of medicine management and wound care, it is also helping to fill in the blanks around dementia care. “Our main focus is trying to help people in the community who think they may have dementia or are showing signs of cognitive impairment,” says the Director of the RDNS Institute and Chair to the Minister’s Dementia Advisory Group, Dr Susan Koch. “A lot of what we’re doing with the Minister’s Advisory Group is to actually help inform the Minister and the Department Of Health and Ageing about the issues for people with dementia and their families.”

RDNS has clients that come from 159 different countries and speak 117 different languages. Trying to communicate with culturally and linguistically diverse patients, their carers and families about dementia, medicine management and wound care is challenging, particularly when the nurses rely heavily on family members to determine the cultural needs of the patient. “That is a huge challenge and really the language barrier is just one aspect of it,” comments Dr Koch. “For RDNS nurses, it’s initially through interpreters that they get their information but we also have nurses who speak more than one language.” The interpreters are very helpful when conducting assessments because they bring an objective ear to the discussion. Dr Koch credits the Diversity Manager at RDNS, Jaklina Michael, who has been successful in developing information sheets for clients in different languages. “She is a very active component within our organisation in ensuring the nurses are aware of the issues.”

Every year, RDNS nurses drive the equivalent of 31 trips from the earth to the moon on their rounds to see clients at home. That’s 12 million kilometres, and 1.7 million patient visits. Nurses are available 24 hours a day, 7 days a week as part of their mission to help people live the best life they can in their own homes.

A broadband telehealth project currently underway means that some clients requiring medication management have a special monitor at home which allows a nurse at the RDNS call centre in Melbourne to make “virtual visits”. These do not replace, but rather, supplement face-to-face consultations. Many of these clients have forms of dementia.

The year-long Graduate Nurse Program at the Institute prepares graduate nurses for life on the road as a community nurse, which is quite different from working in a hospital. “We have been taking nurses who have graduated from university into the graduate program and they’re offered education plus preceptorship with RDNS nurses to work in the community,” explains Dr Koch. The major issue for nurses working in the community is they do not have the immediate healthcare team support that is available in hospitals, so they have to learn very quickly about working with carers and families, doing assessments and thinking on their feet. The graduates learn from and are guided by a preceptor nurse in patients’ homes. “It starts off with just watching the nurse and then the preceptor will be watching them and providing them with support when they’re out together about decision making, the issues that arise and what strategies they can use.” The graduates gradually make the transition to going out on their own, knowing that they have computer and telephone support from other nurses within the organisation.

Besides having to work out in the community with people who speak varying degrees of English, wounds (particularly venous leg ulcers) are another commonly encountered challenge for RDNS community nurses. The Institute is involved in studies in relation to Wound Management Innovation CRC headed by Professor Helen Edwards at the University of Queensland. “We’re helping them look at skin awareness programs to keep people functional, and at leg ulcer improvement.” The Institute is also a part of a large national group headed by Associate Professor Susan Kurrle at the University of Sydney assisting people who have cognitive impairment.

The issue of assessment with regards to medicine management is another area currently under examination. “At the moment we’re doing projects with Austin Health and Monash University with pharmacists to look at what sort of assistance people need and who the best health workers are to actually undertake that. We’re also looking at the risk of people with dementia in relation to the medicines that they’re on and how to manage them better.”

One of the key issues for the Institute is raising public awareness about the number of people with dementia living in the community and in residential aged care. There is still a huge stigma surrounding dementia, as Dr Koch reports. “In some places, you just don’t talk about it and families don’t talk about it. They’ll try to hide it away and cover up for someone until it all gets too bad. That’s usually where the healthcare services come in too late.” With younger onsets of dementia now occurring, early diagnosis and intervention is critical to maintain quality of life and keep people in their own homes for longer. Supporting carers to navigate the health care system and get assistance when they need it is another critical area where community nurses play an invaluable role. The third major area is actually getting people diagnosed because the time lag from dementia symptoms arising to actually receiving a diagnosis is often extremely long.

Australia has an ageing population and there have been discussions about elder abuse and neglect recently. Perceptions about what is abusive and what is acceptable do vary. “That is huge,” exclaims Dr Koch. “Certainly, I’ve been involved in studies in the past about what constitutes elder abuse and quite often with family carers in relation to the physical care of older people, sometimes it’s just lack of knowledge and understanding about other ways to do things.” Take forcing someone to have a shower, for instance. “Some families feel it’s really important to keep clean so they may be a bit rougher and they don’t consider that abuse but again, they’ve never been taught the strategies of how to manage that better. For a lot of families, they don’t perceive that they’re being abusive. They feel that it’s the only way to deal with it. But then you’ve got the other group that has always been abusive and that will continue.”

Abuse of the elderly is more than just physical mistreatment. Older people, especially the mentally ill, sometimes fall victim to greedy family members. “I think one of the major issues coming out is financial abuse where a family is given power of attorney for financial aspects of care,” comments Dr Koch. “Sometimes we find that the individual is not getting the appropriate care and financial support that they should be; the family is holding back. As for staff, they are taught what to look for and in our case report back to their client services manager.” Sometimes family carers looking after a person with dementia are the ones complaining of abuse. “I’ve spoken to carers who feel like they’re being abused by the person with dementia and when you get right down to it, they don’t really understand what’s happening with dementia. They’re seeing the person that they know suddenly becoming aggressive or bullying them verbally with false accusations and they start taking all of that personally.”

Despite the challenges of looking after someone with a disease like dementia, many families would rather look after someone at home than put them into care. “Absolutely,” agrees Dr Koch, “and I think there’s still a strong tradition in that but it’s changing. And it’s changing because you’ve suddenly got third and fourth generation ethnic groups who have been born in Australia but the older people themselves still hold on to the traditional values. There’s now working families, perhaps with three or four generations living in the one house, and who’s the one that’s going to be doing the caring?”

Indeed, caring for a sick relative can be taxing. Family carers do not have to shoulder the burden alone and help is within reach, although they may not realise it. “Certainly from my experience, what we find is that people don’t know what facilities, resources and strategies are there to help them,” says Dr Koch. “They either think that they have to do it all or someone has to go into care. They don’t know that there are other things that can happen in between.” Putting a relative into an aged care facility is a huge decision even when there is no other option and Dr Koch does not believe that anyone makes it easily. “I think everyone finds it very hard but it comes to a point where there’s that realisation that it can’t go on.”

There are no concrete answers for what causes dementia and that is why funding for vital research is so important. Dr Koch says that while new evidence is coming through, the brain itself and dementia is just so complex. “It was a disease that was never looked at because for years people thought it was just old age and anyone who was old became senile. Now that we’re getting better at assessing, testing and diagnosing we need to push harder to say that there are actually steps that we can take. We need the money to do the research.”

Dr Koch predicts that dementia is going to be a major health issue in Australia’s future – like cancer and cardiac problems – and yet there is nowhere near the same amount of funding for research being provided. “Getting funding for research is probably the biggest challenge for all of us,” she says. Hopefully researchers will be another step closer to unlocking the mysteries of this puzzling disease soon. “We can’t cure it yet but we’re getting there.”

Making Sense of Management

Management is the art, or science, of getting things done through people. Sounds fairly straightforward – except for the fact that people are not robots waiting to do our bidding. People have their own minds, motivations, and goals. So how do managers keep operations – and the people behind them – running as planned?

January 18, 2019, 3:36 AM AEDT