Thirty people with dementia and 31 carers participated in a total of 46 interviews (average duration: 27.5 minutes), of which 15 were dyadic interviews. One person with dementia declined to participate on the day of the interview but their carer was interviewed. The final sample (Table 1) was diverse with regards to age, carer relationship, ethnicity, types of dementia, and deprivation.
Findings
Interview data were analysed to derive themes related to experiences of remote healthcare encounters. The following three themes were identified:
proactive care at the onset of COVID-19 restrictions;
avoidance of healthcare settings and services; and
difficulties with remote healthcare encounters.
Participants discussed a range of primary and secondary healthcare services, reflecting the current situation where people living with dementia have varying engagement with different healthcare services. The focus was on primary care, but, where other services were specifically discussed, this was clarified.
Proactive care at the onset of COVID-19.
The most commonly described remote healthcare encounters by participants were telephone calls from a variety of healthcare professionals to enquire how the person living with dementia and their family were managing; these were appreciated by those who received them. Participants recalled that most of the calls were short, and did not have any particular content outside of briefly speaking to the person living with dementia or the carer:
‘ Well, I didn’t talk very long. She [GP] just wanted to know I was all right and everything was OK. You know, it’s only a short call.’
(Person living with dementia [P] 6)
Telephone calls from GPs were more often reported as occurring in the earlier months of national lockdown restrictions and were not regular calls. Instead, these calls corresponded to appointments cancelled as a result of COVID-19 restrictions.
Some people living with dementia and their carers received additional telephone calls from NHS Memory Services staff (part of secondary care services), which they had been attending. These were similarly described as mostly opportunities to ‘checkup’ on the person living with dementia:
‘The Memory Clinic [nurses] do ring my sister-in-law once a week just to check-up on how Dad’s going […] Just to see if there’s anything he needs or how he’s doing and stuff like that.’
(Carer [C] 12)
Carers and people living with dementia felt reassured that a healthcare professional was contacting them, particularly if they provided a contact number for future reference. In general, professionals would mostly talk to the carer, although in some calls they also spoke to the person living with dementia. Whether this was an individual conversation or not varied with regards to the carer dynamic of the dyad, but the people living with dementia that did not take part mentioned trusting their carer to manage these conversations.
Some participants who had not been contacted by any healthcare professionals during the lockdown period expressed dismay in their tone when reporting that they had not received any word from the professionals who would normally be engaging with them:
‘I can honestly say that nobody’s checked on Mum from a medical point of view.’
(C9)
The benefit for participants who did receive calls centred on feeling there was someone they could reach out to, which seemed to be partly owing to the content of the calls being described as not very specific.
None of the participants with dementia or a carer recalled being given any particular advice in these check-up calls, although some carers thought this could have been helpful:
‘It would have been useful to have some advice for our family what practically can we do instead to make sure that he [person living with dementia] had his exercise. And to give him as much social stimulation as possible, people who understand his condition and therefore what is possible and not possible for somebody with his condition. I think that would have been very valuable indeed. We’ve tried to do our best, but I don’t think it’s been good.’
(C21)
Avoidance of healthcare settings and services.
Owing to lockdown measures that mandated no unnecessary leaving of the home, social distancing, and shielding for vulnerable individuals, participants thought it was better to avoid physically visiting healthcare services.
Carers based decisions to stay away on the basis of risk of coronavirus transmission, which for them outweighed the possible benefits of the person living with dementia seeking immediate healthcare treatment, specifically in the early stages of restrictions:
‘They said […] your mother will have to come here, and I wasn’t prepared to do that because I just thought it was unsafe. She was shielding, she’s been quite frail.’
(C3)
Public Health England encouraged individuals with symptoms of COVID-19 to stay away from NHS services, self-isolate, and contact the emergency services only if needed so as to not spread the virus.30 This message was widely reported in the media, and demand for NHS contacts declined following the introduction of the first national lockdown measures.31 Participants recounted this message of patient avoidance:
‘I mean, let’s face it, if you rang the doctors, they just said don’t come anywhere near us.’
(C16)
‘They don’t want me to go there, not only me, everybody.’
(P25)
Not overburdening the NHS was another reason mentioned by some people living with dementia and their carers who did not feel they should contact or ‘trouble’ their doctor:
‘No, not at all. I don’t want to trouble them [GP]. I’ve been locked in for five months. I try not to trouble anybody. They’re all very busy and it’s not fair.’
(P27)
Some people living with dementia and their carers were managing existing problems by themselves (for example, dermatological, nutritional, or musculoskeletal problems). They had had no contact with healthcare professionals because they had not sought it out, or had no reason to:
‘So there’s been nothing really happened during this lockdown period that we’ve had cause to really miss out on seeing the doctor. Nothing’s really happened to make us miss out.’
(C8)
While not common, some did not seek contact because (primarily older) carers did not wish to engage with primary care by email or telephone, which was encouraged in most primary care practices (for example, e-consultations or online booking), owing to their impersonal nature and technological barriers:
‘During the coronavirus, I’m keeping well away from them because there’s no face-to-face, it’s a lot of technology fiddling.’
(C22)
For those who had no contact, and were not seeking any contact, carers reported providing increased care for their relative. This was owing to not only their avoidance of healthcare services as mentioned above, but also their general response to managing during the pandemic:
‘I’ve just managed the best I can on my own.’
(C26)
Difficulties with remote healthcare consultations.
During the period of lockdown and other social restrictions, healthcare provider consultations for the participants in this study were mostly by telephone. Barriers included having problems with hearing or memory problems, in which case the conversation would often be organised and handled by the carer. However, some people living with dementia who participated in remote healthcare consultations said they were content with the process and able to get what they wanted from the consultation:
‘It’s quite all right, you know. I don’t see anything wrong with it [telephone consultations]. ’
(P12)
Both people living with dementia and their carers described preferring face-to-face consultations to telephone calls, because it gave them more confidence to voice their thoughts more clearly. None of the sample had experienced video consultations, although it was unclear if this was offered and refused or not offered in the first instance. Carers felt that healthcare professionals would be able to notice changes better in person, especially for what otherwise might not be addressed, and also that face-to-face encounters would enable them to discuss matters in greater depth:
‘You don’t necessarily remember all the things you want to say over the phone whereas if you’re in the doctor’s somehow you feel more prompted to discuss things in more detail.’
(C6)
‘I suppose I did speak to the doctor and I was understood but you just don’t feel right by just talking to them on the phone.’
(P6)
Some of this reluctance for remote consultations seemed to specifically relate to emerging or increasing physical problems that were more difficult to convey in a telephone conversation. Despite these limitations, some people living with dementia expressed an understanding of why remote consultations were currently needed, although this was clearer in interviews with carers:
‘Obviously if you see somebody face-to-face, it’s much more satisfying and efficient than doing it by phone or by email or by photo. But I understand the situation why this has got to happen.’
(C7)
Carers discussed how planning telephone consultations could be difficult, as doctors did not always keep appointments, and either phoned at different times than agreed or did not call at all. This was disruptive, and it was often up to the carer to rearrange. Telephone appointments that were not kept by professionals proved to be especially inconvenient for carers who did not live with the person with dementia. This was the case mostly for carers who were caring for a parent with dementia, as they would often be making time to support the person living with dementia:
‘I wasn’t there for that, they [GP] were meant to ring up one day and I made myself available, but they didn’t ring up that day they rang up a day later.’
(C19)
While some people living with dementia managed these consultations on their own, those adult child carers who were most affected by this reported that it could delay satisfactory resolution of problems. This affected individuals with more moderate or severe memory problems, who would either not remember the specific problem to discuss with the professional or were unable to relay the consultation to their carer.
Digital barriers or exclusion from accessing health care remotely were most often reported by older people, whether they were older (often spousal) carers or people living with dementia. To overcome this digital barrier, whether making an appointment online or working through an automated telephone attendant, they would ask for help from their children, if these were available. This was reflected by adult child carers generally not describing similar technological difficulties, some of whom voiced a preference for online consultations:
‘I’m finding that better, because it gives you time. You can type what you want to say and then you can go back and tweak it. So, from my point of view, e-consults are easier.’
(C11)
Although they may not prefer it, one benefit people living with dementia and carers reported was shorter waiting times and quicker access, which was associated with telephone consultations:
P8 I don’t think it’s better, no, I’d prefer to see the doctor obviously, but having said that, it’s great to be able to get in the phone and talk to someone, that being the doctor.
C8 Without waiting a long time?
P8 Yes.
This study’s sample was diverse with regards to dementia diagnosis, ethnicity, and time since diagnosis, and no clear influences on the difficulties with remote consultations were noted with regards to these characteristics.
