Table 2 Theme 2: Perceptions and attitudes towards local dementia resources and services; CF = community forum participants

Resources

‘I think like diagnosis there are things like screening tools, MMSEs and GPcogs and those kind of things. In terms of like general management resources, I mean there are of course like the referral pathways that we have like geriatricians, for driving assessments there’s actually the RMS can do it, which is good. There’s the home – like there’s like the ACAT assessment and then the home care, like the HACC packages, like each, whatever each thing.’ – 4GP

2.1a

‘Yeah, so I think the thing with resources, I think it’s sort of more general and more generic resources. I think there are some good stuff that’s available already and I don’t really think we should sort of reinvent the wheel both internationally and in Australia. There’s some good sort of general resources.’ – 22GP

2.1b

Services

‘There’s lots of programs, lots of each programs and different programs which really cover a lot of things. There’s a centre of excellence at Hammondville. There’s Carrington and the other providers in the Whiddon Group. There’s Broughton House has got a really good dementia day care as well as Myrtle Cottage. The aged care assessments, there’s Alzheimer’s Australia, there’s speech therapists, podiatrists, physios, doctors and specialists. The people on the transport are really wonderful, on the train and the bus and the taxi. They’re excellent with wheelchairs and so kind. And there’s Meals on Wheels.’ – 14CF

2.1d

‘Look, I’m actually really happy with what we’ve got, which is a secondary service that we can refer to’ – 19GP

2.1e

‘Q. Are you familiar with any dementia specialised services in the local area? A. Not in the local area here, no.’ – 9GP

2.1f

‘In my case I don’t have the – I don’t have any qualms in referring someone if I think that they need to be referred [to a dementia-specialised service].’ – 10GP

2.1 g

‘Yes, there are a number, and often it’s the person themselves that doesn’t want referral. A lot of people are very independent or they don’t really want to know. If there’s anything happening they just want to soldier on, and so that often does stop us referring, or if we do refer they are not very keen to have any services involved.’ – 6GP

2.1 h

Resources

‘We would like accessible information in a format that all of us can use.’ – 14CF

2.2a

‘I think some resources to help people navigate their way into receiving services or through that, sort of follow that pathway and receiving services and getting some direction with that I think is useful. So some more resources along those lines to help people understand the website, how to use it and you know, how to access services.’ – 10GP

2.2b

‘I think if once a diagnosis is made, I think it would be useful for them to be given a list of various common things that they might face and who they might be able to contact to get more help with regards to that.’ – 9GP

2.2d

‘We don’t have enough resources now.’ – 15CF

2.2e

Services

‘Cost effective specialists, because specialists cost a lot of money and there’s a long waiting list within the actual health system.’ – 14CF

2.2f

‘A great need for all of those things, trying to navigate – yes, everything. So as you said, education, allied health, you mentioned psychology but yeah, allied health, legal. All of those things are really, really needed, and at the moment you can access them a bit but they’re fragmented all around the place and not easy for people who are trying to – you know, may not be able to drive either, not being able to get to. So in a single site would be wonderful.’ – 11GP

2.2 g

‘We find that with all of the hospital or area health service-based services, they may be there but we’re often not informed as GPs on how to actually access them, and then they often change the access process or the requirements. Nobody actually tells us.’ – 11GP

2.2 h

‘I think the issue with dementia-specific services is that when My Aged Care came in they decided not to make services dementia-specific, so whereas you had dementia monitoring services and those sorts of things, they’ve become just social support services.’ – 16CF

2.2i

‘I might include some of the past comments, but we’d like to see more skilled workers who have specific training in dementia.’ – 14CF

2.2j

Resources

‘I think education is very helpful for – to educate the carers as well as for patients about what’s going on.’ – 10GP

2.3a

‘There needs – I mean we’re going back to the putting things in newspapers, but we’ve got to do whatever we can to remove the stigma of the word ‘dementia.’ If it’s out there in the community and generally talked about then I don’t think there’s quite such an issue to get somebody diagnosed. I mean if it’s as well-known out there as cancer is or any of those other sorts of things then there might be a little bit more – or little bit less resistance from people.’ – 16CF

2.3c

‘Someone else comes in, either is not aware or doesn’t realise polypharmacy is bad and get yet another drug and another drug, and I’ve seen as many as five different antipsychotics, mood stabilisers and antidepressants for really the same behaviours.’ – 15CF

2.3d

Services

‘There’s not enough respite full stop in the area. And carers and also working carers support, there’s no support there for us because we work while support groups are on.’ – 14CF

2.3e

‘I suppose sort of at the more pointy end, so for people who are having fairly severe dementia, particularly with sort of behavioural challenges as well for the family, practical advice and support for family in managing those behaviours.’ – 22GP

2.3f