Participants
Two researchers conducted 18 interviews representing 21 people: 11 people with dementia and 10 carers. Three of the interviews were conducted with dyads interviewed together and the members of one dyad (PD4 and C4) were interviewed separately. The other 13 interviews were with individuals not connected. Participant characteristics can be found in Table 2a and Table 2b.
Table 2
a Characteristics of participants with dementia
ID | Age in years | Gender | Dementia Type | Living arrangements |
PD1 | 67 | M | AD | living with partner |
PD2 | 84 | F | AD | living alone |
PD3 J | 88 | F | AD | living with spouse |
PD4 | 64 | M | VaD | living with partner |
PD5 | 77 | M | AD | living alone |
PD6 | 67 | M | FTD | living with partner |
PD7 | 50 | F | AD | living alone |
PD8 J | 75 | M | AD | living with spouse |
PD9 J | 71 | M | FTD | living with spouse |
PD10 | 65 | M | Mixed | Living alone |
PD11 | 70 | M | FTP | living with spouse |
PD12 | 61 | F | AD | living with spouse |
AD- Alzheimer’s disease |
VaD – Vascular dementia
FTD – Fronto-temporal dementia
Mixed – Mixed Alzheimer’s and vascular dementia
J – Joint interview with the carer of the same number
Themes
The topics raised by participants during the interviews are under three main themes. These comprise a) fear of decline - the concern about a loss of skills caused by social distancing measures and efforts to avert decline; b) frustration concerning the dilemma of returning to normal - not feeling able to return to normal even when restrictions are eased, and c) neglect - disappointment about the lack of concern or consideration from individuals, groups, and authorities.
Fear of decline
There were some people with dementia had few concerns and enjoyed the quiet, and time to appreciate their surroundings during the pandemic, but the overarching feeling was that there were negative impacts on dementia-related symptoms and mood, related to not feeling able to engage in usual social and other activities. This incentivised people with dementia to attempt to avert decline and maintain positive by being busy. For carers, the additional responsibility was difficult, especially when noticeable decline and increased vulnerability altered their relationship.
Many people with dementia understood the importance of social contact and the value of keeping busy to maintain social skills and self-confidence to interact with others. A deterioration in abilities was understood to create difficulties for re-engaging with society, even when restrictions were eased.
PD10 my belief is that it was the dementia was accelerated on the communication side because of lack of practice. I wasn’t doing things, I wasn’t seeing people, not just the vocal side and the hearing side, but because of not being with people my almost body language reading skills deteriorated as well.
Whilst people with dementia spoke of their concern about their progression of dementia symptoms, some carers reported sadness relating to the changes in the skills and behaviour of the person with dementia and a realisation of the impact of the changes had on the relationship. People with dementia did not mention this. Other carers spoke of the positives of doing more activities together and valued a strong relationship that had helped them cope with the pressures of the pandemic. Being alone with the person with dementia was harder for those carers who felt their relationship had changed.
C9 I think it’s just companionship, normal conversation and companionship, somebody just to… because [name’s] lost his empathy and his interest in things, just somebody for me, do you know what I mean?
A change in the relationship was linked to increased responsibility to manage new risks relating to COVID safety and keeping the person with dementia occupied, but it could be challenging making sure there was enough to do.
C10 Obviously, it meant a bit more thinking ahead. So it was trying to find things that she was interested in. …it was also keeping my wife engaged with it and not trying to do too much…
Although some enjoyed activities that they could do together, many carers felt lonely and bored, with limited opportunities to focus on their own well-being. As face-to-face support groups and services had stopped, both people with dementia and carers were isolated with no options for carer respite.
C4 he would go to the [redacted], which was the day centre; they’d come and pick up, which I paid for obviously, and they dropped him back, but it gave me six hours in which I could, um, do, you know! Without having to be watchful.
Averting decline and maintaining positive mental health
People with dementia experienced distress over expectations or experience of, decline, but wanted to ensure they spent time positively. People with dementia spoke about the importance of doing familiar activities that were interesting and pleasurable, but also new things. Several wanted to challenge themselves and practise skills they believed would be of benefit. This was purposeful and people with dementia found strength in realising they had been able to adapt and learn. For example joining online groups, doing mind training, learning names of people or objects when out, reading, and improving recognition of shape and colour.
P7 because of lockdown, I just got a 500-piece [jigsaw] but it was like… like brightly coloured and it… although it was hard to do I persevered with it.
P4 I realised that if I keep my brain active hopefully I can slow the process down of the disease
Being in contact with others was important to maintaining well-being. One element was altruism. One respondent (PD11) was determined to visit his friend in a care home and to continue to teach nursing students about dementia by using Zoom. This couple valued being NHS patient representatives:
C8 But of course, because we’ve both been at home, it’s… it’s just been a good thing for us. And it’s really, having the NHS meetings that’s… that’s helped us.
PD8 It’s helped us survive
For both people with dementia and carers with internet access, online social media was useful in the absence of face-to-face contact. This allowed meetings to continue, and in some cases increased contact with loved ones and support networks. However, those who did not have access to the internet may have missed out.
C1 so I’ve adapted that by ringing people what… when I need, well, ringing people on a regular basis really and so still maintaining contact but not as… not as much if I was on Skype maybe.
A commonly mentioned change during restrictions was increasing exercise levels. Three respondents with dementia talked extensively about their reasons for getting out for walks to manage their mental and physical well-being. One man enjoyed some chance social interaction whilst exploring his local woods:
PD6 I’ve met some very nice people, and it’s… we were able to sort of have a brief talk and jokes and things like that, but still keeping our two metres apart, that sort of thing.
Another (PD1) enjoyed practising learning new walking routes and memorising names of people he met on his walks and was also ‘quite proud’ of improving his diabetes control through increased exercise. Another man (P10) was determined to lose weight and improve his mobility but to maintain distance from people he walked laps around his communal garden at night.
Dilemma of returning to normal
People with dementia experienced a dilemma in wanting to return to social activities but worsened dementia symptoms and continuing barriers within society made that hard, even with easing of social restrictions. The promise of vaccinations did not instil confidence.
PD6 is it ever going to get rid of coronavirus?
They were wary about safety in the case of future easing of restrictions, and many struggled to remember or did not trust, the frequently-changing official information. Some had found it more comfortable to stay indoors.
PD4 I force myself to go out now. And I think this second lockdown is an excuse for me in a way that I can hide, that I don’t want to go out much…
A loss of confidence in memory and remembering the rules were concerns for both people with dementia and carers, and were complicated by a more generalised feeling of anxiety about returning to mixing with people, thus prolonging their social isolation.
PD1 I'm very nervous, and still am of going outside the house. It’s going into places where other people are. They creep up on you and accumulate round without even thinking. Because it is... it is very easy to... to not social distance when you’re out because you tend to forget.
SP10 …I’ll say, ‘Well it’s because of the virus?’ ‘What virus?’ But I just have to be very close to her all the time to make sure she’s not doing something that causes a problem.
People felt nervous about going into health care settings during the pandemic but felt reassured by appropriate COVID-19 safety precautions when attending hospital and dental appointments. In contrast, there was some displeasure about the shift to telephone or online appointments. People wanted choice about the delivery of appointments so they could be confident the practitioner understood their personal needs. Some people with dementia wanted the option of having the carer present and a choice of telephone, online or face-to-face appointments (PD10). A carer (C5) described a long wait for a dementia review over the phone, but the person with dementia was contacted at very short notice, which was unsatisfactory because the carer needed to be present.
A change in the usual medical professional seen for dementia-related appointments caused some upset. People with dementia felt that without knowledge of their personal experiences of dementia, the impact of any changes in their dementia-related needs would not be well understood. Also, people with dementia wanted more information about what they could do during COVID-19 to remain independent and engage in meaningful activities for ‘interaction and stimulation’ (C10) but this was not being offered.
PD10 …references I made to how I thought things had changed were dismissed in saying, “Well, you know, dementia does progress”…I wanted somebody to, kind of, give me coping strategies in a way, you know, almost like if… if it had been a physical thing, they’d give you exercises to do.
When talking about reduced social restrictions, some of the participants were uneasy because they thought members of the public would not understand their difficulties or vulnerability. One carer mentioned her support for a local initiative of wearing a lanyard to identify someone with dementia in health settings, but others had concerns about public perceptions of people with dementia:
C9 I think you’ve got to be careful because I think once you start putting a label on them, you know, that they’ve got dementia they’re open to abuse, aren’t they?
To help people with essential needs, some high street adaptations had been helpful, such as a library providing a pick-up and drop-off point and a pharmacy delivering medicines to the car (PD2).
Another barrier encountered was a lack of understanding of the needs of people with dementia and carers when in shared public places.
C10 all the seating that had been provided there, most of it disappeared. And then the small amount of seating that was, was clearly labelled, ‘Only for people with disabilities.’
This man summed up his feelings about the dilemma faced by people with dementia in getting back to normal:
P10 From a cosmetic point of view it was beneficial for the government to make us fearful so that we would stay in. Well, they’ve now got to spend millions undoing that…So that we feel like going out again.
Neglect
Not being contacted by individuals, groups, or authorities, not feeling included in official information provided, or in arrangements for easing restrictions, led to a feeling of neglect and exclusion. Two carers suggested that people with dementia were not given due consideration during lockdown in the same way as people with physical disabilities.
C10 It’s a bit like obviously if you turn up at the door with someone in a wheelchair, it’s obvious that they’re disabled… the general public don’t have much of an understanding of what difficulties you get with mental health problems, no matter what they are, but particularly with dementia.
Many felt surprised they had not been contacted. For example, two carers expressed disappointment that their church leader had not been in contact to offer emotional support. Others mentioned not being contacted by support services or medical professionals.
C2 I think there should have been some sort of communication to see if she was alright. And they used to come… so I’m a bit disappointed that they haven’t done that this time, like, you know?
People did not tend to be proactive in asking for assistance but wanted to be asked about their well-being. By this stage in the pandemic, people had found solutions to meet their essential needs, but some felt the typical type of support offered was not what they needed.
C10 It never occurred to me to actually talk to people about it. Because you’ve then got to specify exactly what you want. I don’t need physical support. I don’t need any domestic support. But it’s interaction and stimulation.
Government information was found to be as confusing and non-specific to dementia and so people were not sure which rules were relevant. Carers also worried the person they cared for would not be able to follow the distancing or mask-wearing rules (C10, C4 and C2).
C6 I don’t actually know which group we’re supposed to be in, and what we’re supposed to be doing and not doing.
Two people with dementia suggested there should be a central source for clear and trusted information, and somewhere to go in a time of crisis. Both people with dementia and carers thought that dementia networks were useful sources of information.
C4 [the] memory café is where, er, you tend to find out what’s available, who to go to, who to speak to...You know, and you get that sort of thing.
There was also some disappointment about the lack of consultation regarding re-opening groups. One man who was caring for his wife with advanced dementia, for whom internet contact was not possible, understood the group could not continue day trips by bus, but had ideas about possible alternatives (such as a socially distanced walk); however, the service had not been in contact about re-opening.
C5 Talking to fellow caregivers, I think we would have been far more bold, actually… Because of the benefit, both to me and to [redacted] I feel that she gets from the group, if they could have found some way of bringing them together…