A total of 18 dementia care professionals participated in this study. Care professionals came from a variety of backgrounds, including clinical psychologists, assistant psychologists, home care workers, care home managers, and home care organisation managers. The majority of professionals were female (89%).
Thematic analysis generated six themes: (1) Complex needs unsupported; (2) Reluctance to approach services; (3) Lack of service adaptation to both people living with dementia and carers; (4) Lack of communication between service providers; (5) Environment of service provision; and (6) Funding issues.
Theme 1: Complex needs unsupported
Professionals highlighted the fact that most services and activities were mostly designed for people with dementia in the early stages of the condition, and with the most common form of dementia, Alzheimer’s disease dementia. Staff often only has knowledge of Alzheimer’s disease dementia and not of the needs of rarer forms, and how to support people adequately in the more advanced stages with more complex needs. This can often be a substantial barrier for people wanting to attend the services in the first place, as they themselves or their family carers do not feel as if their relative is being adequately supported.
‘you're looking at people with rarer types of dementia who then may not be socially acceptable to accept the help from dementia cafes. I personally care for two residents with Korsakoff’s dementia and one that also has Lewy Body dementia and they are not socially acceptable to go to cafes, they can’t go to days out and bingo nights and things because they can’t but where do they get help to find somewhere to meet other people. Because they can’t be with people with vascular dementia and things like that because their behaviours are unacceptable to people with different, with different needs’
Focus Group 1
‘We did have a gentleman with frontal temporal that was struggling to be in the group and so wasn’t able to access so his carer was able to come but he just struggled to be there’
Focus Group 1
‘there's a lot of people that are reluctant to go to these groups and not necessarily because they don't want to, but because they can’t because of how advanced their dementia is and some dementias where people might be hallucinating or things like that, do we think that there is a gap’
Focus Group 2
This is also reflected in a lack of general trust in the services by unpaid carers, due to the overarching lack of knowledge about specific complex needs of people living with Lewy Body dementia, fronto-temporal dementia, or vascular dementia, for example.
“the carer has to have peace of mind because that is often their loved one or somebody very close to them, so my experience is, you’ve got to have the trust of the person you're supporting, living with the dementia and also the carer as well, so that they feel confident, that there's no point in them having respite if they're completely not relaxed when they go out.”
Focus Group 2
Theme 2: Reluctance to approach services
Service providers pointed out that they encountered many family and unpaid carers who were reluctant to approach services in the first place. This was in some ways due to the fact that they felt they should provide the care to their loved one with dementia, as opposed to handing over care to someone else. This was also considered a generational perception for some, as well as potentially linked with people’s socio-economic background. Transport for example was raised as a concern, as public transport can often be limited, and not everyone has access to a car. As a result, some carers only approached service providers when they hit crisis point.
“I think as well is building up that rapport with the carers as well and getting them on board first of all, because they're the ones up caring for these people and we only get them really when they hit crisis and if we can get in there early on when its first diagnosed then maybe we can put some more support in rather than dealing with something that needs to go into respite”
Focus Group 2
“I think it’s also, it’s the communities you live in as well. Especially working class areas as well. It’s the norm isn’t it, you’ve got an extended family you look after mum and dad.”
Focus Group 2
“there's a fear when somebody gets diagnosed that ‘oh they might have to go to a day centre, I don't know what a day centre’s like’. But if you're already there, doing your talks and things like that and people are going in, they can also see what actually a day centre’s like without actually going looking round and so they have an awareness of what's going on and also perhaps maybe if you did it in the residential homes as well, if you had a spare room in there.”
Focus Group 2
Participants also highlighted that unpaid carers do not always have someone to look after their loved one with dementia, and are left with no option but to not attend services. This can also be underpinned by financial issues, as carers cannot afford to pay for a paid carer or sitting service coming into the home and support the person living with dementia.
“quite often the carer may not have anybody to support which we all realise is a gap so we were asked if we could actually support the cared for if needed to be to allow the person to attend that course, but again it’s how you facilitate that with the skills and everything else but we agreed to it as yet we haven’t had anybody that’s had to bring the person that they support with them.”
Focus Group 1
Theme 3: Lack of service adaptation to both people living with dementia and carers
Some unpaid carers were suggested to feel reluctant in using existing services because they do not offer separate activities for people with dementia and carers. It was felt important to provide services where people with dementia can enjoy a supervised activity, with unpaid carers feeling comfortable and reassured that their loved one is safe and looked after, to then be able to enjoy some time with peers.
“say the men went off to play indoor bowls who might just want to volunteer for the club and so say the men went off to play indoor bowls, say 50/50 split of people with or without dementia so the carers know that they're fine and so if we did an activity for the carers then they'd be quite happy to take part in that 'cause they know that their loved ones are ok”
Focus Group 2
“it’s getting people in because they don't necessarily want to come in because like you said before they would have to bring along the mum or dad, the husband or wife.”
Focus Group 2
Theme 4: Lack of communication between service providers
Service providers across the focus groups were highlighting the lack of communication across service provider organisations. This led to a lack of knowledge of what types of services might be going on in one postcode area, and result in a duplication of effort. Care staff highlighted that limited funding could be merged instead to ensure that services are delivered to meet the needs of those with rare dementias, without duplicating efforts and wasting limited resources.
“but have a website which is Wigan and Leigh carer’s centre. But again we do have the contract with Wigan Council, but one of the things, I've been in post a couple of months is that it’s amazing across the patch that we’re still unfamiliar with what each other’s doing and how we can support each other and sometimes the duplication and it’s also when you're accessing funding to provide better services is a joint bid’s likely to be more successful and it’s like you were saying, which was a brilliant idea”
Focus Group 2
“we access funding differently as well. So again we can cover the cost and fund events and everything which again, it’s just working tougher so you support both parties and also as well it’s like when you're talking about you get to crisis point and people end up in residential care, if we really support both parties along that pathway, perhaps the need when you get to crisis point you might be able to sort of like take that further down the line.”
Focus Group 2
Theme 5: Environment of service provision
Given the complex needs of people living with rarer dementias, care professionals raised the point that going to services outside the home might not be the most suitable form of accessing post-diagnostic support. Instead, people with dementia might be better supported at home in their familiar environment, on a one-on-one basis. This would allow people with dementia to be more supported, particularly if they have complex behavioural or motor functioning needs as is the case with behavioural variant fronto-temporal dementia or Lewy Body dementia.
“I personally think people going into people’s homes because that’s the environment that they're used to, going out into the community where people are disorientated to time and place it might make them worse, but in their own homes, they may not be familiar with it but they may be, family members might be there as well to support them”
Focus Group 2
“one to one support which I think many people with specifically difficult to understand or support dementias need much more one to one interventions, much more one to one time and it comes down to the old thing of money”
Focus Group 1
“There is no such thing as suitable there is no such thing as one size fits all you could have something that’s entirely suitable for one individual but then the next door neighbour it would not be suitable for them. So it should all be person centred and it should all be on the individual.”
Focus Group 1
Theme 6: Funding issues
This one-on-one support can however be very costly, if it is available in the first place, and people with dementia or carers have to pay themselves if they earn above a certain threshold. This limits the types of services that people can access, even if they are in great need to access support, and results in inequalities in access to care.
“there seems to be a lot available socially for people so if they like singing they like dancing going to group events but we are finding more and more that people who maybe aren’t quite as social who are not comfortable in that environment are just completely left without that option and of course it will be down to funding but often they would be quite happy to fund that themselves if it’s available for them and we do get quite frustrated with the lack of signposting initially after diagnosis.”
Focus Group 1
“She does need the respite all this lady had was half an hour a day just to support him to get washed and dressed, he goes to the day centre twice a week but that’s all her respite. He's up during the night trying to drag her out of bed because he doesn’t want to be in bed. And she doesn’t know where to go. We are suggesting things for her and it all comes down to funding.”
Focus Group 1