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The essential role of the dementia specialist

Early diagnosis and implementation of care strategies are among the benefits a specialist in dementia care can deliver, along with valuable support for clients, families and health professionals. 

"Having a dedicated person in this role who fully understands and is willing to listen and allow a client to develop trust and get to know her – that was really, really important."

The number of Australians with dementia is expected to rise by almost a third by 2020, hitting a projected 400,000, then more than double again to 900,000 by 2050, according to the Australia Institute of Health and Welfare (AIHW).

Dementia is difficult to diagnose and delays from the onset of symptoms to diagnosis can be a result of a lack of awareness of indicators and recognition on the part of GPs, a reluctance to seek help through fear of the loss of independence and insufficient access to specialists and multidisciplinary support.

“A lot of people know there’s something wrong but don’t want anything done about it because they’re frightened about what that diagnosis will say about them,” the director of the Royal District Nursing Service Institute in Victoria, Dr Susan Koch, says.

With many more people facing cognitive impairment, the role of clinical nurse consultant dementia specialist (CNCDS) has become increasingly important in achieving timely and efficient diagnosis.

Koch is one of four co-authors of a report on dementia care published recently in the journal, Dementia. Titled The role of a clinical nurse consultant dementia specialist: A qualitative evaluation, it says a CNCDS can help an individual manoeuvre through the healthcare system to get a speedy diagnosis as well as provide support through the journey.

She says the CNCDS approach is to ensure the individual knows that a variety of reasons could be contributing to their cognitive problems and also to establish the ways in which they can go about understanding those causes.

The sooner a diagnosis is established, the sooner support and education can begin and appropriate strategies be implemented.

In the report, researchers establish that the attributes and skills necessary to the role of dementia specialist are different to those required in any other area of nursing. This is because the diagnosis of dementia has a complex effect on personality and behaviour and on the individual needs of patients and their carers.

For the dementia specialist, being informed about available services is crucial, as is the ability to be able to truly listen to the patient and their families. Koch describes this as being similar to the active service model.

Dr Dianne Goeman, senior research fellow at the RDNS and another co-author of the report (the others are Fleur Duane and Dr Chris Beanland), says that tailoring the care is essential – “not just tailoring the care to the actual client, but delivering it when it’s required. So it’s being very intuitive.”

The CNCDS also helps families and clients adjust to the impact of a diagnosis of dementia. This is achieved through the development of a trusting relationship, built over time, which starts with the dementia specialist never pushing an individual to seek a diagnosis, but rather talking to them about the problems they’re facing.

“Having a dedicated person in this role who fully understands and is willing to listen and allow a client to develop trust and get to know her – that was really, really important,” Goeman says.

She says a surprise finding in the report is that staff and aged care assessment team members found working with a CNCDS beneficial as they could consult with the specialist about any difficulties they were facing regarding a patient. “[The CNCDS] was able to be a mentor to other staff and they really valued that,” was a typical comment.

In another report, Dementia care in hospitals: costs and strategies, published in March 2013, AIHW offers examples of the education a CNCDS provides at a regional hospital with a lack of aged care services. They developed two tools for use by staff on a general medical ward: the Cognitive Impairment Pathway tool, which includes examinations and tests, and a behaviour monitoring chart, which recorded a patient’s behaviour and showed when aggressive incidents occurred.

AIHW found dementia specialist nurses were often pivotal in facilitating communication between community sectors and hospitals through the establishment of interagency meetings for service providers.

Fieldwork revealed the tangible outcomes of having a CNCDS on site, including improved recognition of delirium and dementia by care staff, informants having a better understanding of the disease and a reduction in the need to use restraints on wards.

The CNCDS was seen to play a key role in service development and the identification of service gaps, as well as in sourcing funding, developing relevant policies and procedures, and building networks in the acute care and community sectors.

The publication also identified factors that compromised the effectiveness of the role, including workload pressures and the need to build visibility and credibility with other health professionals in numerous hospitals. 

Q&A with a clinical nurse consultant dementia specialist

Fleur Duane talks about the requirements, obstacles and joys involved in working in a specialised and challenging field.

Nursing Review: What is the importance of a CNCDS in the care of those with dementia or facing a possible diagnosis of dementia?

Fleur Duane: The importance of the CNCDS is highlighted most by clients and carers as they really value having a professional visit them regularly to discuss their concerns with them. It provides an opportunity for problem solving, information sharing and education that would otherwise not occur.

The role is even more vital given the increasing number of people with and predicted to develop dementia in the future.

The CNCDS is in a unique position to detect and act on dementia symptoms early as we see people at home, in their own environment. This creates a means for timely diagnosis and responsive management of this disease to occur as we can pick up the signs of cognitive decline earlier. Seeing a person in their own home allows a greater understanding of the person as well as their health and health goals. The role also supports other health professionals such as local GPs who may have limited amounts of time available to spend with clients.

Why did you decide to specialise in dementia care?

During my university study I worked as a personal carer in an aged facility. This was my first experience in aged and dementia care and I really enjoyed it. It was there that my interest began. The focus of my work in dementia care in the community developed shortly after this when I did a clinical placement at RDNS Altona where I now work.

I genuinely enjoy helping people to optimise their health, particularly the aged with dementia. I wanted to contribute to improving health and services to this group, and my position combines both these things. It’s really satisfying to use my experience and knowledge in making positive changes in a person’s life. There’s always scope to learn more, to improve outcomes in this area, and it’s particularly exciting to channel the energy and momentum in a relatively new role in Australia: a nurse practitioner based in the community, dedicated to aged and dementia care.

What does it take to be a CNCDS?

Specialist qualification is needed as well as passion and experience in this area of health care. I have a masters’ degree in nursing (specialising in gerontology and continence), and have extensive experience working in community care. I think an ongoing desire to learn about best practice in aged and dementia care and to implement these in practice is essential. I’m training to become a nurse practitioner in the field at the moment.

As well having the right training for the role, leadership, autonomy and ability to fully work with other members of the health team are vital given the fragmentation of care and service delivery that can occur. This role can optimise care delivery to the client by encouraging communication and collaboration within the team.

What are the key focuses of your role?

When I meet an individual I try to facilitate discussion about where they are on their health journey, and ascertain what it is that I may offer help with. Technically, my care often involves assessment of cognition, education about management strategies (of dementia-related concerns), along with referral to other services.

As well as helping clients, a big part of my role is assisting staff with complex care needs that stem from dementia. This can include handling medication mismanagement and incontinence and responding to challenging behaviour. It requires strategizing with staff about how to provide the care required. Another aspect of my role is being part of the clinical leadership group in which I meet with other aged care nurses in RDNS and discuss issues and practice pertaining to aged care and dementia. It allows sharing of information with other staff and learning from them, and then disseminating information to all staff as required.

What challenges come with the job?

Fragmentation of services can mean repetition of clinical assessments and, further, that information is not shared between services.

The cost of resources can be a barrier for many older people. Take for example an automated calendar clock – there’s no subsidy for these items so access is limited. People with dementia can benefit greatly from such an item as it assists with orientation to time which is essential in managing medication, getting to appointments and completing daily activities. Overcoming the barriers to provision of resources and services can be particularly tricky and time consuming. There are never enough hours in the day to do everything that I want to do!

What makes it all worth it at the end of the day?

It is truly satisfying to have an older person become really happy with the positive difference you’ve made to their lives. I couldn’t think of any other job where the effort you put in can have such a positive impact on an individual. To have the opportunity to do that is the greatest reward of all.


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