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Table 4 Examples of supporting evidence from stakeholder interviews

From: What works for whom in the management of diabetes in people living with dementia: a realist review

CMO

Examples of supporting evidence from stakeholder interviews

1. Embedding positive attitudes towards PLWD

• “…you shouldn’t be sort of swayed one way or the other, just because someone has dementia… I think certainly when they first start on their journey I think it’s really important that we do everything we can…” [of cross-disciplinary training to facilitate appropriate care], Diab1

• “…an intervention should work at a level that people…particularly early stages of dementia…can be included…so it’s not decisions being made about them…”, Dem1

• “…the Getting To Know Me project here in XXX we trained over six hundred, or seven hundred, frontline practitioners about dementia, just a general aspects of dementia, what it is, how to communicate, what to look for, what people might be saying when they maybe can’t tell you through words…”, Dem7

2. Person-centred approaches to care planning

• “But actually at this stage (referring to when people have complex health needs) people are interested in autonomy, mobility you know, retaining as much function and independence as they can, being a burden on their families you know, so all the normal things and they’re often much, much more important than a lot of the medical stuff”, Diab12

• “It’s allowing a two-way exchange of information isn’t it about how different conditions might affect things.”, Res1

• “Where the client is fully able to contribute [to a care plan], that usually goes very well because we can then discuss the likes and dislikes, their routines, how they manage their diabetes themselves…”, Dem4

• “I think different targets for certain groups of people you know, and quality of life targets rather than all about number crunching…”, Diab13

3. Developing skills to provide tailored and flexible care

• “…we encourage people to set agreed targets with the patient…that may well be…higher than the general population target which is a key message we get across to the GPs because they’re so driven by QOF”, Diab9

• “I don’t think we’re supporting people with diabetes [and dementia] as well as we could, because of this training issue and where responsibility lies…”, Dem4

• “I’ve seen very very few examples where it’s done well, any of this, any of this sort of self-management, shared decision-making, anything. …..I think health professionals are possibly becoming themselves much more risk-averse and not wanting to suggest things that aren’t perceived as being healthy or might not be the right answer”, Res1

• “choosing wisely American stuff you know, I think we’re all warming up to this agenda but I don’t think anyone’s quite cracked you know, it’s not mainstream yet.”, Diab12

• “…for the general population, self-management…is not working particularly effectively…translate that to a much more delicate and fragile group…who have other comorbidities and have dementia…then those types of responses are likely to be even less effective …” [of SM support strategies], Diab2

• “…one of my profound frustrations is that you can have people talking about multiple long-term conditions and they’re excluding mental health diagnoses, and yet we know that you know, 30% to 40% of people with diabetes will have anxiety and depression you know, and often early unrecognised memory issues…”, Diab12

4. Planned regular contact

• “…if it’s set up on a regular basis, so the person knew, you know, like Tuesday afternoon’s when I speak to my diabetic nurse, that can be put in their diary.”, Dem4

• “since I’ve been in the care of the Diabetic Clinic everything else has gone out the window. When I was in the care of the specialist nurse at the GP’s, I would have a regular sort of every six month check on my feet…and the amount of protein in my urine, all those tests have now ceased, I’m now only looked at from a point of view of sugar levels.”, Person with type 2 diabetes mellitus

• “…if you have one healthcare person who you know is almost like your keyworker, your key contact, you build up a relationship, which is very important…”, Diab4

• “…I have a very good colleague…who is a specialist physical healthcare nurse and a mental health nurse, and that is a, I’ve often thought of this person as a really interesting model for the future…”, Dem7

5. Engaging with families

• “…I think we could probably do a lot more…supporting families and carers and to give them the confidence, I think they’re so worried, it can be so… frightening…to have both conditions…”, Diab13

• “… patients are educated one to one or through diabetes-structured education, again I’ve never heard of a patient education for carers and those with dementia to support them…”, Diab11

• “We need to sort of normalise the situation where it is completely normal and expected that close family members will be involved in any decisions and there will be partnership”, Researcher, self-management of long-term conditions

6. Usability of assistive technology

• “… there’s electronic dosette boxes…linked to telecare, so if the person doesn’t take the medication, telecare will come through the intercom and say, ‘Mr so and so, you need to take your tablets’, and then if they don’t …[it] locks anyway so they can’t overdose”, Dem2

• “I was familiar with the sort of dosette box, if that’s what you’re talking about, which is a great idea and does really help people”, Dem1

• “But, I mean some of the insulin pens are really fiddly as well, like they’ve got really tiny numbers and you have to dial it up and all that kind of thing, I don’t know how well they’re adapted for people with visual problems or cognitive problems.”, Dem6

• “In one local authority, we went to one recently, a dementia kind of carers group and sat with them and showed them a list from somewhere else and some of the devices on that weren’t on theirs, you know? It’s not equitable…”, Res2

• “…technologies are great but you need to think is it the right thing for the patient…is there enough support around it to implement it and respond to it …”, Res2