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Table 4 Essential Component: Role Definition

From: Development of an optimised key worker framework for people with dementia, their family and caring unit living in the community

Key Worker Role Key Components Source Quotes from Australian Evaluation of Dementia Key Worker Models
Referral and Linkage to Services Building relationships, linking with and collaborating with other services
Referring to other services and professionals as appropriate
Enabling the person to assist with referral processes
EWRG, Australian Evaluation “It can be putting them in touch and referring them onto services, whether that is respite, day respite, packages, homecare. I help ascertain what their needs might be and point them in the right direction I can make the referrals myself whichever’s appropriate.” [Key Worker Four]
“The approach was primarily to facilitate the provision of services that we were looking to have... She took care of getting me a mental health plan and getting that working. She was very useful as a coordinator in the services.” [Consumer Eleven]
Navigating the Service System Connecting and coordinating with appropriate services in partnership with the person being supported
Ensuring continuity
EWRG, Australian Evaluation “The first area is supporting to navigate and negotiate the service maze. So to really not just know what’s available and what they can access but actually how to describe their situation, how they can be creative around those services and support so that they really work for their situation and what they need most” [Organisation Manager Eleven]
“Well for me it was wonderful that [key worker] was the one to ring the Cottage to see if there was room for a day respite and she got that person to ring me to say, these days are available or these times, when would you like to come in and have a look at the place. So she arranged all of that, she did all of that phone work” [Consumer Two]
Responding to Individual Needs Holistic discussion and assessment of physical, emotional, social needs
Determining what is important to each person and working with them to achieve their goals
Building relationships with the person being supported
Utilising an enabling approach: promoting and facilitating choice, independence, wellbeing and quality of life
Working in partnership with all parties to refine care process
Providing practical, emotional, spiritual and social support
Systematic Review, EWRG, Australian Evaluation “We talk about what sort of things a person is doing so what sort of work or interests they’ve had in their lives and that helps to guide me to where I might be placing them or helping them out with things” [Key Worker Ten]
“Over time we’ve probably met each and every one of the workers, and there were a couple there that just weren’t really dementia people, or they just concentrated on the carers and the dementia person was just a side event. Whereas the ones we’ve got now really do concentrate on the dementia person and the carer and gives feedback and support.” [Consumer Five]
Education and Information Provision Providing timely, informed and current knowledge about dementia and services Providing appropriate resources
Mentoring role, educating and raising awareness to the broader community
Systematic Review, EWRG, Australian Evaluation “Sometimes it’s a bit of education about the disease, often it’s about communication and behavioural issues, giving them strategies and tips and hints language to use, body language.” [Key Worker Four]
“A big part of what we do too is education and delivering training to communities... raise awareness and de-stigmatise dementia in the community too as well even more so in those rural areas.” [Key Worker One]
This is what they reinforce all the time: you don’t look at what they can’t do; you’re looking at what they can do. So you’re focusing on the positives rather than the negatives. But if you don’t have that support, I imagine it would be very easy to focus on the negative. So from a mental and emotional point of view, having that support and that education, it helps tremendously. It just gives you that bit more strength.” [Consumer Nine]
Listening Listening and providing support, comfort and options/ suggestions EWRG, Australian Evaluation “A lot of the time is, they just want to blurt it out and then they’re right. They don’t need any more, because they don’t want to share it with their family, because they don’t want their family to think they’re not coping.” [Key Worker Five]
“They need to be a good listener and they need to be able to almost read between the lines. If you phone up and say [name] is bored and I don’t know what to do with him, instead of saying well, have a cup of tea, it’s a matter of okay what has he been doing and what can we do.” [Consumer Five]
Emotional Support Referring to counselling services if needed
Connecting those living alone to communities
EWRG, Australian Evaluation We do a lot of counselling and therapy for the individuals, their families and their carer system and then we also link with appropriate resources” [Key Worker Twelve]
“As the journey progresses and your partner just is deteriorating, falling apart before your eyes really, that emotional support is really important... So I just had a session with her and that was more really a counselling session that went for an hour and a half and it was terrific. I really needed it at that stage to get back on track” [Consumer Four]
Practical Support Ongoing monitoring of outcomes
Assist with problem solving skills, communication techniques and strategies for person with dementia
Clarification of risk factors and parameters set by each person
Rehabilitation: enabling people to achieve their optimum physical, emotional, spiritual and social wellbeing
EWRG, Australian Evaluation “Recently they’ve come up with - and made personally - a much more practical daily diary for [person with dementia]. I just Velcro what we’re doing that day onto it instead of having to write it out. She’s waiting for photographs of what’s inside our cupboard so she can print and Velcro photos to help in the kitchen a bit more.” [Consumer Five]
Point of Contact Being a central point of contact
Continual support as required Recognition of when to step in and out triggered by the person identifying a need for support and proactive follow-up
Systematic Review, EWRG, Australian Evaluation “We try and encourage a sense of this is a resource or centre that you can always ring back and link with if any difficulties occur and it does seem to work...they don’t have to run around to a hundred different places this is the kind of the centre where the support is localised.” [Organisation Manager Twelve]
“For me it’s the underlying security. A key worker is almost like a safety net. If there are any problems, then that’s my first port of call. So far they’ve helped I think in every situation I’ve taken to them. I can’t think of one where it hasn’t” [Consumer Five]
Advocacy Individual advocacy; seeking solution with and for people with dementia to their particular problems or needs
Linking with and advocating for appropriate services and ensuring that referrals are followed through
EWRG, Australian Evaluation “So I am able to empower her and her family in what is dementia so that when they go to a GP they can actually have more of an accurate conversation with them about the changes that they have noticed... we are just there to have a chat to and say you know make sure you talk about this aspect of her behaviour changes... I guess that advocacy is also part of our skill set as well” [Key Worker Nineteen]
“If I need to go to my accountant and I need a second set of ears, to listen to what’s being said, she will come with me. Where I request her to come to something, she will come along and just be’s just a reminder to the other party, hey, there’s somebody interested in what’s going on here. So just tread carefully. The fact that you say, I’m here as her advocate if she needs something - just silently alerts them to the fact that there is a responsibility that they have towards my wellbeing and interests.” [Consumer Twelve]