Background
Methods
Systematic review of literature
Evaluation of Australian key worker models
Participant selection
Sample
Model | State | Organisation Manager Interview | Key Worker Interview | Consumer Interview |
---|---|---|---|---|
One | Queensland | ✓ | ✓ | x |
Two | New South Wales | ✓ | ✓ | ✓ |
Three | New South Wales | ✓ | ✓ | ✓ |
Four | New South Wales | ✓ | ✓ | ✓ |
Five | New South Wales | ✓ | ✓ | ✓ |
Six | New South Wales | ✓ | ✓ | x |
Seven | Victoria | ✓ | ✓ | ✓ |
Eight | Victoria | ✓ | x | x |
Nine | Victoria | ✓ | x | x |
Ten | South Australia | ✓ | ✓ | x |
Eleven | South Australia | ✓ | ✓ | ✓ |
Twelve | Western Australia | ✓ | ✓ | x |
Thirteen | Western Australia | ✓ | ✓ | x |
Fourteen | National | ✓ | ✓ (8) | ✓ (10) |
TOTAL | 14 interviews | 19 interviews | 15 interviews |
Data collection
Data analysis
The expert working and reference group
Results
Overarching Philosophies | Key Components | Source | Quotes from Australian Evaluation of Dementia Key Worker Models |
---|---|---|---|
Relationship-centred | ● Relationship- centred care should be the foundation for the key worker role | Systematic Review, EWRG, Australian Evaluation |
“I think it’s all about relationship-building... that’s how you gain trust, you build that relationship, but if you say you’re going to do something, you need to do it” [Key Worker Seventeen]
“Once you have someone walking alongside you like that asI said it can be the difference between a carer actually crumbling in their health.” [Consumer Seven] |
Enablement | ● Retaining a sense of self and identity ● Focusing on strengths and building resilience ● Planning for the future to provide peace of mind ● Supporting the person to continue to live their life as they choose ● Protecting the rights of people to full citizenship regardless of their age, gender, cultural background | EWRG, Australian Evaluation |
“I’m looking at who they are as a person. I’m interested in their history, so that we can actually support that and validating who they’ve been, what their likes are what their dislikes are.” [Key Worker Five]
“I think there’s a degree of give and take in this. While I’m well enough to manage, then I will give and say no, I can manage this... her role is to guide me how to intervene for myself.” [Consumer Twelve] |
Holistic | ● Encompassing emotional, social, physical and spiritual dimensions of support ● Providing a whole of family/caring unit response to support ● Recognising support will need to be more frequent and intense at different times with different people ● Recognising the relationship that remains between the person with dementia and their caring unit ● Inter-professional and inter-sectoral collaboration | EWRG, Australian Evaluation |
“We take a pretty holistic approach to the whole situation. The person who is living with dementia, it’s very, very hard to separate that person out and provide them with support and not look at the family system that they live with.” [Key Worker Eighteen]
“I think it’s not just the physical help that you need, it is this emotional and supportive role that is so important. It’s definitely got us to where we are now. I truly believe that without the help from [key worker], I think that the only decision open to us would have been to put my uncle into permanent care.” [Consumer One] |
Accessibility | ● Diversity, access and equity awareness (rural, regional areas; diverse groups) ● Having access to support where there is diminished decision making capacity ● Retaining respect and advocating for the rights of all people ● Having access to palliation and end of life care in the setting of advanced or impaired decision making ● Working with the person and those who support them regardless of age | EWRG, Australian Evaluation |
“Adaptable, it’s flexible, it covers everything throughout the continuum of the journey... it’s one place for people to actually be given a clue as to what you might need in the future. Giving people what their options are and what times they should be looking into the next option before they need it. Somewhere they know that they’ll be respected and whoever is in this position will try their best to make their lives a little bit easier. An inclusive, holistic person centred approach.” [Key Worker Four]
“I’m really hopeful that I will be able to keep having [key worker] presence in my life, because I would say to you now, without her presence in my life - even as a case manager whose primary role at the moment is to act as an advocate and as to be a support person to me, to provide that emotional and psychological support that I need - without that...I would be overwhelmingly isolated, as somebody with younger onset dementia, living in the community on my own.” [Consumer Twelve] |
Organisational Context | Key Components | Source | Quotes from Australian Evaluation of Dementia Key Worker Models |
---|---|---|---|
Model Design | ● Clear model design with desired outcomes documented ● Continual support; not time-limited ● Support across the continuum ● Flexible entry and exit criteria ● Encouragement and promotion of early intervention ● Continuity of care ● Flexible mode of support and frequency of contact ● Multi-disciplinary dementia support teams with a range of professions | Systematic Review, EWRG, Australian Evaluation |
“For me I see it as an ongoing thing if something arises we would certainly have them as a client again we can absolutely justify it as we know working with people with dementia can be a long term thing.” [Key Worker One] “[Key worker] was available 24/7 basically. We felt sort of really comforted by the fact that we had that security... dementia is 24/7.” [Consumer Nine]
“You need to do things early and think about all the things ahead of time and I’m so glad that we did make that connection really before we desperately needed it. Because if you reach that desperation point and you’re highly anxious and stressed, then it’s harder to make that connection. I don’t know how people would be able to manage that situation if they left it until it was the crisis point.” [Consumer Four]
“In an ideal world you would have a multidisciplinary team because then it would be a really quality service: social worker, occupational therapist, psychologist, registered nurse” [Organisation Manager Three] |
Quality Assurance | ● Formal evaluation ● Consumer feedback: follow-up with all people receiving and withdrawing from the service ● Regular auditing | EWRG, Australian Evaluation | “[Evaluation] that is what we need to do. What we can provide is what we have in terms of feedback from carers, the referrals, assessments, case management of these patients that is all we have at this stage but I think it does need a more thorough evaluation to justify the funding.” [Organisation Manager Two] |
Inter-professional and Inter-Sectoral Collaboration | ● Strong links with other dementia, services and organisations ● Integrated approach to care; not working in silos or isolation ● Investments in a strong provider network | Systematic Review, EWRG, Australian Evaluation |
“The aspect is to have that good capacity for interagency communication and building working relationships with other organisations that are relevant to the client group.” [Organisation Manager Twelve]
“We’ve got our key result areas that are in- service sector collaboration and capacity building. An example of that would be, [key worker] and I went and did a two-and-a-half-hour training session at a disability service provider, because they had a person with younger onset dementia... they brought us in to help them build capacity amongst their staff” [Key Worker Eighteen] |
Infrastructure Support | ● Support for staff well-being, skill development and performance ● Monitoring caseloads and workloads closely and frequently | Australian Evaluation |
“I definitely, in the past, have not been burnt out but been close to it. Just due to the high number of clients that I do have. That’s 53 clients but that’s also their carer and their families as well. So you’re dealing with 53 families that have such complex relationships as well, it’s easy for a worker to burn out.” [Key Worker Fourteen]
“I mean I just don’t know how [key worker] juggles what they have to do in the time...I just think that when there’s so few it’s really hard to know how much you can expect from them because it’s unrealistic.” [Consumer Two] |
Resources | ● Physical resources: maps of services; vehicles (pool cars, reimbursement for travel); computers; phones; electronic databases ● Managerial support ● Professional development (case conferencing, mentoring, education, training, conferences, ongoing study opportunities, shadowing opportunities) ● Clinical support ● Access to technology (Skype; video conferencing) | Australian Evaluation |
“They have to have a case conferencing system; but you really need a multidisciplinary team.” [Organisation Manager One]
“Each team gets a consultation with the neuropsychology unit...we tease out the specifics of it, so we can come up with some strategies or make sure that what we’re doing we’re on the right track... and get somebody who’s external to us, look at us, tell us how are we doing here, and what do you know that we don’t that we might be able to work with.” [Key Worker Eighteen] |
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 there...it’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] |
Key Worker | Areas | Source | Quotes from Australian Evaluation of Dementia Key Worker Models |
---|---|---|---|
Knowledge | Consensus Areas: ● Dementia Other Areas: ● Clinical and Scientific (e.g. nursing background, allied health background) (10 models)
● Family and Carer Needs (e.g. utilising a whole of family approach to support) (eight models)
● Services and Resources (e.g. service availability, referral pathways, entry criteria, waitlists, education/training opportunities) (eight models)
● Sector (e.g. aged care, disability) (six models)
● Work Experience (five models)
● Life Experience (three models)
● Cultural Differences (two models)
| Australian Evaluation |
“You’ve got to have a spread of knowledge. I think the support worker needs to be embedded in a dementia specific knowledge base.” [Key Worker Sixteen]
“I believe that they need to have an understanding of or some type of training in aged care, especially with people with dementia. They need to really get to know that person” [Consumer Eight] |
Skills | Consensus Areas: ● Communication and interpersonal ● Ability to generate ideas and problem solve ● Ability to build and maintain relationships Other Areas: ● Ability to provide education (information provision) (11 models)
● Clinical (e.g. ability to judge and screen for medical issues, medication issues, physical changes) (six models)
● Counselling (five models)
● Advocacy (five models)
● Assessment (e.g. ability to screen and assess physical, social, mental, emotional health needs) (four models)
● Time Management (four models)
| Australian Evaluation |
“Definitely the people skills and being able to ask the questions that a lot of people wouldn’t normally consider. It’s not just as simple as asking a question. You actually can then offer some solutions for those questions that they have. You have to be I guess quite good at communicating with people in a variety of different contexts whether that’s phone or email or face to face.” [Key Worker Twenty]
“I mean it’s like going to a restaurant, you get given a menu. There’s no point saying well I want sort of scrambled deer antlers and they say, oh sorry we don’t have any and you’ll have to get something else... tell us what you do have and then we can go from there because most people aren’t going to want everything. They’re just going to say, well this would be helpful. I don’t want that or that or that but I wouldn’t mind that and perhaps down the track I’d like to have a bit of that. So just some suggestions so that you know what is on offer, what is available.” [Consumer Two] |
Attributes | Consensus Areas –Key Workers, Organisation Managers (top five):
1. Empathetic (ten models)
2. Good Listener (seven models)
3. Person-centred (six models)
4. Adaptable and Flexible (five models)
5. Genuine, Kind, Caring (five models)
Consensus Areas – Consumers (top five)
1. Good Listener (six consumers)
2. Empathetic (four consumers)
3. Caring (three consumers)
3a) Stable, Reliable, Committed (three consumers)
3b) Proactive (three consumers)
3c) Perceptive, Astute (three consumers)
3d) Practical, Realistic (three consumers)
4. Understanding (two consumers)
4a) Resilient (two consumers)
4b) Open (two consumers)
5. Encouraging (one consumer)
| Australian Evaluation |
“Empathy is really, really important, but also the ability to hold their hand and go, okay, I’m here, I’m listening to you. There are things we can do together and then let’s see how we can build your strength to be able to cope with this.” [Key Worker Five] “Just being able to listen I think is a key thing... it’s the first time they have been able to talk to someone that doesn’t have an emotional investment in making some decision or judging them.” [Key Worker Ten]
“They need to be empathetic, understanding, be prepared to listen, be practical. You know, there’s none of that airy fairy stuff. You really have to be practical and realistic about it” [Consumer Nine] “They need to be a good listener and they need to be able to almost read between the lines.” [Consumer Five] “I think the biggest thing for me was just having someone to sound off to that was actually not just sympathetic, empathetic. She was actually encouraging and she’d give me ideas of how she handled things. She encouraged me to be brave” [Consumer Three] |
Overarching philosophies
Relationship-Centred
Enablement
Holistic
Accessibility
Organisational context
Model design
Quality assurance
Inter-professional and inter-Sectoral collaboration
Infrastructure support
Resources
Role definition
Content analysis revealed that the most common aspects relating to the key worker role were: support (32 times), services (26), education (14), needs (12), care (10), information (10), counselling (8), strategies (8), diagnosis (7), history (6), linking (6), provision (6), services (6), planning (5), referrals (5), resources (5), assessment (4) and goals (4).“We are dealing with a broad range of issues they are not all just dementia related issues ... there are a lot of social issues, personal issues, or relation-based issues.” [Key Worker One]“Every day is very different and every client as well and every carer - their situations are all very unique... we do a lot.” [Key Worker Fourteen]
Key worker competencies
The knowledge, skills and attributes thought to be essential for the role are described further below and in Table 5.“I've had people who have been beautifully qualified but they haven't got an emphatic bone in their body, the clients know.” [Organisation Manager Four]“Everything I said was valid. It wasn't put in the too hard box sort of thing, you know. I was quite disappointed with the other two services...I thought well they obviously didn't listen but this [key worker] really was perceptive... she was a really good listener too” [Consumer Three]