Perceptions and potential benefits of dementia prevention programs:
This theme reflects a belief that dementia prevention programs such as APPLE-Tree could improve cognition and wellbeing, and that this capability addresses a gap in services for individuals with SCD or MCI.
Most participants (19/26) discussed issues that fit with the CFIR construct ‘evidence strength and quality’, describing APPLE-Tree and similar dementia prevention programs as capable of positively influencing cognition. When asked whether a lifestyle-based prevention program can influence cognition, one participant stated, “Definitely. They’re all evidence-based, and the exercise, eating well, everything that keeps us healthy physically also is good for your brain,” (third sector service manager, #3). Another stated:
Absolutely. And I think it’s information that is coming more and more to light now about especially physical activity and keeping your brain active and all those other things that I don’t think people really think about still … I think it will be an eye opener for people, I think they still don’t realize that all of these things can have this impact on cognitive decline (third sector service manager, #11).
A minority (5/26) of participants were uncertain about whether APPLE-Tree and similar dementia prevention programs could influence cognition. One participant stated that the topics in the APPLE-Tree program were, “stuff that can maybe not make the memory loss any better,” (third sector front-line worker, #9). However, these participants also expressed a desire for published evidence demonstrating the effects of APPLE-Tree: “I'm not convinced, but I’ll happily be convinced that it has an impact on cognition, and but I think absolutely it's something that is required and something that should be encouraged,” (NHS service manager, #16). Another participant stated, “If the evidence shows that there is benefit, then by all means, we should pursue that,” (NHS front-line worker #22).
While some participants were uncertain about whether dementia-prevention programs affected cognition, nearly all participants (25/26) spoke positively about the programs’ ability to improve wellbeing, quality of life, and general health (CFIR construct: ‘knowledge and beliefs’). One participant stated:
I just know it will have benefit to our clients, I just know it will have benefit to the population, I just know it will. Anything like this, because you’re talking about improving people’s health, not just mental health but emotional and physical health as well and that’s going to have a big positive impact (third sector service manager, #13).
Another participant described their positive belief about the programs’ ability to improve general health, including risk factors for dementia:
I think it will also help, not just with their memory, but will help with quite a lot of different aspects of their lives as well. It will probably help with their blood pressure and the cholesterol and all the other things that they’re going to be checked for anyway, through the GP. So it’s good for like just general health and wellbeing. (NHS frontline worker, #15)
Many participants also identified a gap in the services available for people with SCD or MCI but without a dementia diagnosis. Within the CFIR constructs ‘tension for change’ and ‘compatibility’, participants described APPLE-Tree as a program that could fill this gap. Only two sites (one NHS, one third sector) out of 19 involved in this study had services available specifically for people with MCI, and none had services specifically for people with SCD. One participant described the lack of services available to people with MCI: “I can certainly see that this group of people that are getting diagnosed with mild cognitive impairment, where they have nothing really tailored to their needs and their situation,” (third sector service manager, #23). Another stated:
People didn’t know what it [MCI] was … they didn’t get any information at all on it ... So they didn’t know what to expect. They were scared. They didn’t know whether it was going to mean they were going to get dementia or not, so there was just nothing, really, and no support (third sector service manager, #3).
Many of these participants subsequently described dementia prevention programs, including APPLE-Tree, as filling this gap in the services. One participant stated: “If it’s MCI generally they’re just, kind of, discharged back to the GP and nothing much happens to them at the moment so I’m hoping that’s where APPLE Tree will fit in.” (NHS commissioner, #20). Another participant said:
That group of people [with MCI] tend to get forgotten about, and I think it’s absolutely brilliant that there could be something that people could do, something practical that they could do that could, one, help facilitate them potentially not – their memory not declining, but also enabling them to meet other people and talk to other people in a similar situation (third sector service manager, #23).
Funding, priority, and sustainability:
This theme focuses on two related topics: the priority given by sites to dementia-prevention programs such as APPLE-Tree, and the challenges around resourcing the sustainable implementation of such programs.
Some participants were enthusiastic about the importance and likelihood of their site funding such a program through applications for additional funding from commissioners or local councils; others were not. Within the CFIR construct ‘relative priority’, this divide was discussed as due to a lack of staff capacity to deliver programs like APPLE-Tree or due to the focus of the organization (e.g., a focus on dementia only). Interviewees from eight out of 11 third sector sites supported finding funding. Interviewees from three third sector sites said their site would likely not support finding funding; two of those sites focus specifically on dementia and one on homelessness. In each case, participants said that the target population of APPLE-Tree was not part of their sites’ remit. Four out of eight NHS sites supported finding funding with the rest stating they were at capacity. One NHS service manager stated, “I just think that we need to think about how it's funded, and who manages it, and who provides it because it can't happen as an extra thing within the services that I provide because I just wouldn't be able to then do the 150, 160 dementia diagnoses every month, you know?” (NHS service manager, #16).
15 (out of 26) participants mentioned a lack of resources, specifically a lack of staff, available to deliver programs like APPLE-Tree (CFIR construct: ‘available resources’). This response was raised much more often at NHS rather than third-sector sites. One participant stated: “We’re all hugely stretched and understaffed,” (NHS commissioner, #20). Another described, “They’ve got 300 people on their caseload. They’re supposed to be doing one visit each month, all unrealistic because we’re human, we react to emotions and it’s not happening. So they’re kind of like really, really overworked,” (NHS frontline worker #18).
A minority of participants (7/26) considered dementia prevention programs to be a low priority within their services. Instead, they said funding and resources should be prioritized for services specifically targeting people already diagnosed with dementia. These responses tended to come from participants at dementia-focused third-sector sites and at NHS sites. For example, one participant described APPLE-Tree’s priority in their service in this way:
I think it’s [APPLE-Tree] fantastic and my only concern would be if we roll that out nationally what the cost is in a service that’s hugely over stretched. So, you know, you’re giving this gold-plated Rolls Royce service, which is wonderful, and yet I’ve got patients who have actually got a diagnosis of dementia who can’t even have a once-a-year hospital follow up (NHS commissioner, #20).
Another said, “We have to deliver an intervention to people with dementia first, and then we can deliver an intervention to people with MCI, or who don’t have a diagnosis,” (NHS front-line worker #22).
This perspective was evident as some participants (7/26) mistakenly presumed the target population of APPLE-Tree was people with dementia, despite the summary of the intervention at the start of the interview. One participant stated, “So providing goal settings, wellbeing support, activities tailored to supporting people with various diagnoses, specifically dementia, it’s really important because it helps with coming to terms with the diagnosis,” (third sector frontline worker, #6). Another stated, “your study is dominantly for the person with a dementia,” (NHS service manager, #19).
Participants who supported finding funding for APPLE-Tree and similar programs commonly discussed the need to apply for additional funding from commissioners or the local council. Within the CFIR construct ‘cost’, one participant described, “We get a lot through grants from the councils, but we can also apply for funding,” (third sector service manager, #8).
A minority of (5/26) participants, all from third sector sites, mentioned the possibility of funding dementia prevention programs by charging patients for each session: “I mean, we have goals for how to make it a sustainable group, for instance, we do have to charge so much money for people to come along each week, to help make the service sustainable for us and not depend on funding,” (third sector service manager, #12). Others thought it would be possible to find additional funding without charging patients. When asked about whether funding could be found, one commissioner responded, “Absolutely. And, of course, it should be the case that you receive the funding just because you’re improving people’s quality of life,” (NHS commissioner, #20).
Some participants were concerned about whether they would be able to find enough additional funding to deliver APPLE-Tree in its current form. One participant discussed the challenge of paying for a clinical psychologist to monitor the program: “I hadn’t realized you needed it to be supervised by clinical psychologists, because again, you’re adding a cost to all this, and I’m not clear why that’s necessary, because obviously that is a very expensive cost,” (third sector service manager, #3). Another participant described challenges with the program structure: “It’s funding and if I can deliver, I suppose if it means that we can deliver ten sessions, for example, with one facilitator but could only deliver five with two, I might opt for the ten so that people are getting the most out of it as possible,” (third sector service manager, #7).
While there were participants who thought they would be able to find at least partial funding for APPLE-Tree or similar programs, some thought this financial support was only likely to be temporary. One stated: “When you apply for funding, you know, you get that short period of time but then they won’t continue your funding; they’re always talking to you about what your exit strategy is or how you’re going to match funds and things go out of favor like that, they always want something new,” (third sector service manager, #1).
Participants proposed networking and collaboration with external organizations to improve sustainability. Nearly all (16/19) participating sites had a high degree of networking and collaboration and were already linked with other NHS or third sector sites (CFIR domain: ‘cosmopolitanism’). One participant described the possibilities for collaboration in this way:
If you were running it in that way, you’d look about who in the community would want to facilitate that because they’ve got a particular interest in doing that session and involve people, in that kind of way, to do it. It might be that a local café says, “I’ll run that for you because we could run the smoothie-making in our kitchen,” and do you see what I mean? And then it becomes more sustainable rather than it being funded. It’s thinking in different ways because when you rely on commissioners to fund you for something, it’s flavor of the month for a year and after a year they go “no.” (third sector service manager, #1).
Another participant outlined the advantages of collaborative approaches:
There’s no reason why APPLE-Tree couldn’t get a group of likeminded sector organizations and do a collaborative bid. So we don’t have to do these bids on our own, if there was a group of organizations. And to be honest, a lot of funders today like to see collaborative bids, particularly if they extend the reach (third sector service manager, #14).
Even participants who said their site had no capacity to deliver programs like APPLE-Tree discussed networking and collaboration with external organizations to refer individuals to sites that could provide such programs. One participant stated: “We would refer on. I don’t think there’s any capacity to do [APPLE-Tree],” (NHS frontline worker, #15) while another stated, “I think we could refer people to you. I don’t think we have the resources or capacity to actually deliver a group for you,” (third sector service manager, #24).
Dementia prevention program delivery and guidance:
This theme discusses adjustments needed to make dementia prevention programs like APPLE-Tree compatible with organizations and patients, including a hybrid or face-to-face delivery and cultural adjustments, and discusses guidance needed for facilitators and participants.
Within the CFIR construct ‘complexity’, nearly all (25/26) participants expressed concerns about delivering APPLE-Tree and similar programs online. Many suggested a hybrid or face-to-face approach instead:
I think that [Zoom] would make it less accessible for some people. I also think that it defeats the object a little bit, by having it online all the time. I’m not saying there’s no place for hybrid, because I absolutely think there is, but … I don’t know how people would effectively engage with each other over Zoom and socialize (third sector service manager, #4).
Another participant described a similar worry:
The only thing that I have a concern about is anything that’s online … it’s challenging delivering things online. Delivering face to face is a lot easier, and with our staff, they’d find delivering face to face a lot easier (third sector service manager, #11).
Most (22/26) participants discussed changes needed to be made to APPLE-Tree to fit their patients’ needs (CFIR constructs: ‘adaptability’ and ‘patient needs and resources’). One example was delivering APPLE-Tree in languages appropriate to their patients: “We’ve got a high proportion of people that are from Turkish origin and the language is a massive barrier … so immediately, I can think there’ll be an issue about translation,” (third sector service manager, #1). Another example related to the affordability of foods discussed in the program: “I worry about how people can afford that [the foods], and the affordability of doing that each week,” (NHS frontline worker, #17). Other participants mentioned a need to adjust the recipes to be culturally appropriate: “So we’ve got to make it culturally appropriate. We’ve got to make our dietary advice compatible with the person’s lifestyle and, as we were saying before, their financial resources,” (NHS commissioner, #20).
Many (11/26) participants discussed guidance from APPLE-Tree and similar dementia prevention programs that would be useful in the implementation process. Some participants asked for guidance for their facilitators in delivering APPLE-Tree:
I’d take the guidance from you really in terms of what skillset do you need and what would be the commitment, obviously how much would you want to pay the facilitators, although most people wouldn’t do that because of the money, you know, it’s mostly time and expense isn’t it. And how would they receive the training, would it involve them having to travel to London or would the training be done online, that kind of thing (third sector service manager, #8).
Another participant said that peer support and training for facilitators would be useful:
Yes, like a group of other facilitators who can bounce off each other as well, I think that would be helpful. Other than that, and making sure you’ve had all the right training to get up and start it, I can’t see that there would be any big issues in getting it going other than funding (third sector service manager, #12).
Other participants described the need for additional resources for participants to be able to refer to after the program: “I wonder if there is a need for something a little bit after, after care, yeah, even if it is just a website or something to ask questions,” (third sector service manager, #7).