Interviews with people with dementia

Interviews were conducted with 36 people with dementia, all of whom had participated in stage 1. Their key characteristics are listed in Table 39.

TABLE 39

Interviews with people with dementia

The majority of participants (n = 31) lived in their own homes. Participants were informed that they were welcome to have someone present at the interview and all but two of those living at home and two living in a care home had a relative or friend in attendance.

Stage 2 interviews were initiated in May 2013, within 6 months of the commencement of stage 1, and all of the interviewees were recruited from the four regions originally involved in the study. Purposive sampling was employed to ensure that the sample comprised participants living in all types of location: city, urban and rural.

The sample was evenly divided between males and females and encompassed the full age range for study participants, 60–89 years, with a mean age of 77.5 years for women and 75.6 years for men.

Family carer focus groups

A total of 33 family carers attended across the five focus groups. The demographics of the sample are listed in Table 40. As the table shows, 20 of these focus group participants were caring for a relative at home and 13 had relatives in care homes, so the focus groups provided insights into experiences in both care settings.

TABLE 40

Carer focus group participants

Optometrist focus groups

A total of 34 optometrists participated across five focus groups (Table 41). Four regionally organised groups each had five or six participants working in a range of optometric settings. A fifth focus group (focus group 2) was arranged with the optometrists who examined patients for the PrOVIDe study to capitalise on their experiences of working in domiciliary care.

TABLE 41

Optometrist focus group participants

Professional care workers

Professional care worker perspectives were explored through one focus group comprising representatives from a care home company in North Thames, and individual interviews with care workers and managers employed by a range of companies (Table 42).

TABLE 42

Professional care worker participants

Provision of the eye examination

In terms of who performed the eye examination, there were variations in responses among interviewees; some had tended to see the same optometrist or at least had visited the same practice over the years, while others moved around. None of the 31 interviewees living in their own homes had experienced a domiciliary eye examination prior to the study.

Conversely, in care homes, most eye examinations were conducted by a company specialising in the provision of domiciliary services. Care workers described how an optometrist from the company usually made several visits to the care home during the course of a year and carried out several examinations. The number of examinations conducted during one visit could be as many as 20 in 1 day, although it was unclear if these were all conducted by one optometrist. The company often sent two people but, from the care workers’ accounts, one of these appears to have been either a clinical assistant or a dispensing optician. Care workers reported that it was rare for a resident to continue to be seen by their previous optometrist following admission to the care home; two thought that ‘private’ optometrists were reluctant to carry out a domiciliary visit.

There was a view, expressed mainly by optometrists but also by some participants in all other categories, that it was desirable to see the same optometrist in order to provide continuity of care. For example:

It’s better and easier to go the same place because they know him, he knows them and that makes it easier.

Wife of interviewee 9

In my opinion it would be like going to a doctor’s, you’d like to see the same one, because he knows when he makes his notes, what he’s put down, and then you get to know that person. The continuity is better, and you feel better. But then even if you go to the opticians, you’ll see different people at different times, it’s not quite the same.

CFG 2.2

If you go to Mr X in Chiswick High Road, he’s been there a long time, and you go back again, he’s got your file on you and everything else. But you go to [name of optometrist chain], the young girl’s gone back to Poland, the other chap’s gone back to wherever and it’s all different again, at the end of the day.

CFG 2.3

I think something that’s quite important, there isn’t continuity in care these days, so many people dot around which practice they’ll go to. And as people get older, if they can be encouraged, that continuity of care I think is so important. And I don’t know perhaps how we could put that over to try and encourage that.

OFG 3.3

I think it’s kind of nicer for patients to be able to go back to where they’ve gone; you’ve got the history and the stuff that makes your life a lot easier, and makes the decision-making more straightforward.

OFG 4.1

Once they’ve found an optometrist they are happy with, stick with them, don’t be tempted by the latest special offer when they go shopping because continuity really helps everybody, patient and practitioner alike.

OFG 4.2

Frequency of eye examinations

Most interviewees stated that they had an eye examination annually or approximately every 2 years. The main reason stated by those who did not do this was that they thought that there was nothing wrong with their eyes or that they could see through their current spectacles and did not need to see an optometrist.

Reports from family carers were consistent with this; most of them said that their relative had regular (annual or 2-yearly) eye examinations both before and after the onset of dementia. Again, exceptions to this were linked with a perceived lack of need.

Nan had cataracts removed about 12 years ago and after that her eyesight improved dramatically, as you would expect. And so since then she hasn’t felt she needed to have her eyes tested again, because she was so happy with them.

CFG 4.3

There was just one case of someone not having an eye examination following difficulties with a previous examination:

Researcher:

Some of you have already said something about problems coping with certain aspects of the eye exam, is that right?

CFG 2.7:

Yes, that’s right. That was a number of years ago, and that was the reason, she hadn’t had an eye test for 4 or 5 years, I suppose.

When participants were asked for a view on how often people with dementia should have an examination, the most commonly expressed view was that annual examinations were necessary. Generally, family carers and optometrists thought that an annual eye exam was desirable and that 2 years between examinations would be too long for most people.

Specifically with dementia, it would be a great source of confusion annoyance, irritation, puzzlement to my wife if she were having problems with her eyes and she didn’t have them checked annually; to go 2 years would really be just too far in terms of the time involved.

CFG 4.6

However, some participants – particularly some care workers – thought that there was a need for more frequent testing, as often as 6-monthly, in the belief that as a person’s dementia progressed there was a need to check if their sight had also deteriorated. For example:

I would say for some of them, yearly, but if their dementia’s starting to go down that little bit, or they’re not finding their way around it could be their eyes, you know, so I would say that, I would say a little bit more often.

CH interviewee 2

Experiences of eye examinations

Participants were asked to share their experiences of eye examinations conducted on people with dementia. Interviewees generally were satisfied with their eye examinations and did not perceive any problems, but some family carers and care workers expressed doubts about how optometrists could conduct a full examination because of the cognitive impairment associated with dementia, particularly those elements of the examination which required a judgement or some type of recall response from the person being examined.

I have real concerns about what he can see and how you assess what he can see. With hallucinations, with lack of concentration, lack of ability to focus, all the things that go along with the dementia. When he was first tested he read the eye chart as a book, trying to make words out of the letters, but at least that showed that he could see the letters and the last time, which was a year later, he couldn’t identify the letters. And I honestly don’t know whether it’s vision, or whether there’s a fault between the eye and the brain.

CFG 3.2

I have doubts when they put things and say ‘is this better and is that better?’ because you don’t remember from one to the next. So I’m not confident that she gives the right response, and therefore she can’t get a proper diagnosis and a proper prescription.

CFG 3.3

I was identifying with what other people were saying, you know, how difficult it is to know to what extent they’re giving the right answers. She just doesn’t see things a lot of the time and there’ve been so many occasions where I’ve tried to point something out and she just will not see it. And if she can’t see it, I’m doubtful about the value of the eye test. There is the other side to it, the health part, which is obviously, as you were saying, objective, and worthwhile.

CFG 3.4

I think some parts of the eye examination though, are quite threatening for someone who doesn’t understand.

CFG 4.3

Well just from my own personal experience of having my eyes tested, they ask lots of questions ‘is this clearer with this lens or that lens’ and it’s quite a lengthy process when you’re having your eyes checked and to get the right spectacles for you. And if they can’t answer, those questions, I don’t understand sometimes how they’re getting the right glasses for them.

CH interviewee 10

Problems with the eye examination

Not all family carers had observed a relative having an eye examination. Very few reported going into the examination room in a practice. Carers of stage 1 participants living in their own homes had mostly been at home when the PrOVIDe examination was conducted, but few had been present if their relative had been examined in a care home. Of those who had been present at an examination in a practice (not a PrOVIDe examination), a small number identified problems they had encountered. The problems included difficulties with communication and understanding test instructions. Carers explained the effect of dementia on a person’s ability to understand and respond. For example:

You know the one where you have to count the dots or whatever, they move around, and he couldn’t, it was inconclusive. They wanted to do it again. And they weren’t really explaining why, he had to do it again, and he was getting a bit frustrated with that.

CFG 2.6

There were definitely a few instructions that my mum struggled to understand. There was one machine and she really struggled to sit in the seat and get the right placing for. My sister said there was something they said would take 10 minutes and took about 30 or something, so that seemed to be a bit of lack of confidence, a bit of not understanding the instructions, but as far as we know they muddled through.

CFG 1.2

Our first language is Aramaic, then obviously we came here, she worked on her English. Now, she’s forgotten all that, gone back to the Aramaic. So when we go, this is our problem, the letters, this is the thing. So obviously something to do with dementia, rather than the eyesight.

CFG 2.4

Care home staff also described examinations in which significant cognitive impairment led to communication problems and lack of co-operation.

The pressures test or ‘can you see out of this eye, can you see best out of this, can you read the numbers well’. If you’ve got the majority, say 20 residents, and 18 of those residents aren’t able to verbally communicate, or understand what you’re even asking them, how are you possibly going to conduct a reasonable eye test on that person?

CH interviewee 3

We did have one [person] that would not get her eyes tested whatsoever. She wouldn’t have nothing on her face, it used to distress her too much, so we just couldn’t do it.

CH interviewee 4

I had a lady, looked after her a long time, and she wouldn’t let anybody look at her eyes. I mean she didn’t like anyone very close up at anything, although we did try and try and try . . . so they could never get her eyes tested to see how bad she had got.

CH interviewee 2

Although family carers gave relatively few examples of difficulties with the ‘mechanics’ of the eye examination, some expressed concern about the way eye-care professionals – optometrists and hospital staff – interacted and their understanding of the impact of dementia. The first in the next group of quotations is from an optometrist who talked about taking her grandmother for an eye examination.

My nana had dementia. I accompanied her for an eye examination. The consulting room had all the state of art equipment but the optometrist had no experience in examining a patient with dementia. It was visible through the course of the eye examination.

OFG 2.6

It would be really good if opticians had dementia training. We got some bifocals for my husband, he’d never worn bifocals before, and I thought ‘well it’ll be easier for him than switching’. It was a complete disaster, he never wore them. And I feel that the optician ought to have warned me that that was a bad choice.

CFG 3.2

The optician just couldn’t grasp the concept she had dementia. When she wouldn’t do the peripheral test, he just couldn’t take that in and he got cross with her and then she got upset.

CFG 4.5

One of the worst ones, was the hospital department, and the girl there – I won’t even go into it ‘cause I could’ve hit her – when she did put something in wrong, she said ‘what did you do!’ and I said ‘she can’t remember’; ‘well how can I deal with her if she doesn’t know!’, I said ‘she doesn’t know what she did’, ‘well look, tell me, just tell me what you did’, I said ‘she doesn’t know’. I could’ve murdered her, this woman had no concept of dementia whatsoever and she was really aggressive this . . . optometrist, or whatever you want to call her. And another time they had to go in a little room, on their own to be tested, and I said ‘I’ll come in with her’, ‘no you can’t’, I said ‘she needs me with her’, ‘no, you stay out here’, I thought ‘you haven’t got a clue’ and that angered me.

CFG 5.3

There were several pleas from family carers for optometrists to understand the need to involve carers in the consultation. The main explanation for this was that a carer knew that communicating with the individual in certain ways would be more likely to elicit an appropriate response or to reduce the individual’s anxiety. For example:

You mention the word ‘dementia’ but the person I dealt with, did not seem to have the slightest clue of the implications that this would mean for mobility, for understanding, for me having to be there. Medically they might not want it but I said ‘you must accept this, I’m afraid, because you just won’t get anything to happen if I’m not there’.

CFG 4.6

Another thing, if the relative is there, they are going to be more at ease than if it’s just a stranger doing something to them. I think it will make it more successful.

CFG 5.1

For some family carers, the main area of concern was not the actual eye examination but the issue of accessibility to the practice (or to a hospital appointment); they explained the difficulties associated with getting ready for an appointment, travel, parking at the venue, etc.

I think it is a massive logistical exercise, taking somebody to get their eyes examined. It’s not straightforward to do.

CFG 3.1

What I have had a problem with, is mobility, because of her eyesight. Because I’ve got to take her in, that’s really where I’ve had the problems, because everyone’s supposed to be disablement friendly, but not everywhere is.

CFG 2.5

I had difficulties simply because I got to the point where to get my wife anywhere was such a problem, to get her into the car, that was a major achievement, and she might get in and then get out again, and that was the end of it.

CFG 4.6

Optometrists talked about the problems of the eye examination from their perspective. As the next set of quotations demonstrates, the problems included the range of tests, the patient’s reactions, and the patient’s emotional state and memory problems.

The other thing that I find is that quite a few of the dementia patients don’t seem to be able to cope with the mirror, so you’ve got to do a direct measurement of vision. So Kay’s pictures would solve that problem. I mean I often use a logMAR chart, if I’m just not getting any sensible visions.

OFG 1.3

I think the biggest problem for a young optometrist who is coming in to see a patient with dementia is they probably think ‘I should try and do everything’ and frankly, you just can’t. I mean, if you’ve got somebody on a slit lamp and you’re trying to see the peripheral fundus and they’re just always looking to one way, you’ve got to come to a point where that person, the young practitioner has to realise ‘I can do this, this and this’ and that’s the hard bit, working out what you can do and what you can’t, and what would be reasonable not to do.

OFG 1.2

It doesn’t matter what equipment you have, it comes back to the fear value. You start shining a light in somebody’s eye, whether it’s a direct or indirect ophthalmoscope; a direct ophthalmoscope I think is worse ‘cause you’re right in their face; indirect, you’re shining a light in their eyes, and they’re not happy, they don’t know why you’re doing it. So it’s not always what kit we’ve got, it’s what kit they will accept, and sometimes the simpler the better, but it can be so difficult.

OFG 3.3

The patients’ difficulty in doing certain tests, the fields test is probably the most obvious, maybe tonometry as well, where you can’t get all the pieces of the diagnostic jigsaw you need to enable you to make as robust a management decision as you might like to do. Which might have several consequences, it might lead to over-referrals, if for instance you can’t get an adequate view of the disc and you don’t have normal fields and pressures, you might feel your only option is to refer that patient. But it also might mean, conversely, that you might not refer that patient, when you should refer that patient.

OFG 4.2

Well they vary don’t they? And sometimes you can’t even get near them, and they’re aggressive, there are times when it’s exceedingly difficult and there’s sometimes you wouldn’t think there’s anything wrong. They co-operate, they answer the questions, may not be sensible answers, not the right answers, but they come up with answers, and you can often in the early stages get good acuities and you can do well. But then there comes a point when you can’t.

OFG 5.5

In the early stages of dementia, I manage to get to a position where they go through the whole routine, and they then make what appears quite a logical decision to make a purchase, and then once you’ve made the spectacles up, and I’ve had this before, ‘what glasses? I didn’t order any glasses’. And I think that there are barriers or challenges all the way through that we need to address.

OFG 1.1

However, as far as optometrists were concerned, two of the biggest problems when examining someone with dementia were related to communication. The first problem was not knowing that someone had dementia. This excerpt from one focus group demonstrates the consistency of experience.

OFG1.6:

Right. The biggest problem, I don’t know if you would class this as a barrier, the biggest problem is not knowing that the patient has dementia.

OFG1.2:

My biggest problem is the family saying nothing and I’ve had three patients in the last month where the family say nothing. And I’ve taken the patient in the room and you think there’s something funny going on here, you’re asking their medical history and they’re very vague, they insist that they’ve never been to an eye hospital and you can see the implant glinting in the light, and then eventually you work it out. But I think the biggest problem is not being told that the patient has dementia, and that’s three people in the last month, different practices.

OFG1.3:

I would agree with that, yes.

OFG1.4:

I would strongly agree with that as well.

OFG1.5:

There’s also the patients that haven’t been diagnosed as well.

OFG1.3:

Where you’re kind of talking to them and you’re thinking . . .

OFG1.5:

Well some of the members of the family just say they’re a bit eccentric.

OFG1.3:

But I mean that’s slightly harder because we’re not necessarily the person to diagnose that, but, definitely not being told about it makes it more difficult.

Optometrists from the second focus group, all of whom worked for TOC, had more experience of examining people with dementia and were able to describe being alert to ‘clues’ that might suggest that someone had dementia. For example, it was a clue ‘if the patients repeat things they have already told me earlier in the examination’ (OFG2.4). However, another explained that they could go through the full test but have no clue that the patient had been given a diagnosis (OFG2.2).

Informing the optometrist was something that was discussed in the interviews with people with dementia and their carers. About half of the interviewees had not told the optometrist but in many instances this was because the dementia had been diagnosed recently, since the person’s last eye examination. It was evident from responses that many of these interviewees had not considered telling their optometrist, but some thought that it was something they would discuss next time, as this sample conversation illustrates:

Researcher:

Do they know [at the optician’s] that you have problems with your memory?

Interviewee 12:

Probably not because I haven’t been to them for a long time. It was your team that last sorted my glasses out.

Wife:

I think the last time you saw them you were probably just waiting for diagnosis so they probably don’t. But I’m not 100% sure if we didn’t mention it. But we will next time because then they will know to be patient.

The second communication difficulty reported by optometrists occurred when they saw a patient accompanied by a carer or care worker who had insufficient knowledge about the patient or their eye-care history. They gave examples in which their impression was that the accompanying care worker was the newest or least experienced member of staff with no knowledge of the patient. The first of the following two quotations explains the problem, while the second is from an optometrist who explained the difference it can make when the accompanying care worker is someone who knows the resident.

Often, from care homes, there’s quite a lot of carers, a lot of patients, and some carers have no idea, they don’t have the information on the patient, so they don’t know if the patient is struggling with their distance vision or near vision, and then the patient doesn’t know, so often you have no history whatsoever to go from.

OFG 3.2

I think for me, one of the barriers, again particularly in secondary care, is how well you can liaise with other people around the person as well. So if you’ve got a care assistant who, who doesn’t know anything about the person and who’s just come with them in the taxi that day, then that makes life difficult whereas if you’ve got somebody who’s a key worker and can understand the person’s needs, and can perhaps give you some insight as to what the function is, so that you’re trying to gauge, like their coping for cataract and so on. I think that makes a big difference.

OFG 5.1

It was interesting to note that family carers had said that they wanted optometrists to take more notice of them and that, in their focus groups, the optometrists also stated how useful it was to have the involvement of the families. This quotation succinctly described the scenario.

Communication with carers is vital. It makes such a difference to have the communication two ways between all of them.

OFG 3.1

Some optometrists also talked about multidisciplinary communication, which they thought was inadequate in many cases. A very small number of optometrists gave examples of contacting an individual’s GP or other health-care professional to acquire more information or insight, but several other optometrists described how they would be unable to do the same because of time constraints related to the allotted time for an appointment.

The experience of domiciliary eye care

In stage 1 of the study all participants had a domiciliary eye examination. It was interesting to note during the stage 2 interviews that, before participating in the study, nearly all of the interviewees and family carers had been unaware that domiciliary eye care was available. Those who had known of domiciliary eye care did not realise that people with dementia would be eligible; they thought that it was for people who were ‘immobile’ or ‘very disabled’.

Some people with dementia and carers expressed surprise at how extensive the examination was and the amount of equipment used. Now that they knew about it, they thought it useful to know for future reference, and some said that they would like to have future examinations at home.

Patients and next of kin are surprised about the quality of eye examination given by the optometrists in a domiciliary setting. It could be because TOC optometrists have more time and this allows them to perform a thorough eye examination not a Cowboy eye test.

OFG 2.10

Researcher:

Did you know it’s possible to have a sight test done at home?

Husband of interviewee 3:

No, beforehand, I don’t think we did.

Interviewee 3:

No.

Husband of interviewee 3:

Well I thought maybe, obviously if people are housebound and can’t get out there must be some provision for them to have it but I thought maybe your own optician would be able to come out although I didn’t know to what extent they’d be able to do it because you’ve got to carry the equipment and stuff around.

Researcher:

Did you know it was possible to have your eyes tested at home before we arranged it this time?

Husband of interviewee 10:

We thought you had to be really disabled. My mother died when she was 97 and it wasn’t until she was 96 that she had her eyes done at home. We thought you had to be really old and disabled you know.

I think when you see all the complicated equipment at the opticians you don’t think that you can replicate that at home.

CFG 1.3

Although researchers did not expressly ask for views on the eye examination performed for the study, many of the stage 1 participants and their carers volunteered complimentary comments on the experience. When considered collectively, the following string of comments describes what can be perceived as the benefits and positive aspects of a domiciliary eye examination:

I thought he was great. A nice person. Very tranquil. Just great.

Interviewee 19

I can only compare with what I have at [my practice]. Personally I would say that the one he had with the people here was more thorough than what I have.

Wife of interviewee 34

She really liked someone coming to the house, there’s nothing like being treated a bit special. We like the fact that he came here and he took a bit more time, I suppose you’re not being rushed through. He was here like an hour and it wouldn’t have been like that at the opticians it would have been 10, maybe 15 minutes. I think that was the difference.

Daughter of interviewee 2

The biggest difference was, I think, dignity, if that’s the right word. He was fantastic, he just treated her not like a VIP [very important person] but, you know, he was just great, if there was anything that she didn’t understand, he almost didn’t let her know she didn’t understand ‘cause he explained it, he wasn’t talking to me he was talking to her.

CFG 1.2

I have to say, when Mum had her eyes done by whoever . . . you sent, no problem at all. He was charming, you know, he was . . . he obviously understood who he was dealing with and . . . was appropriate.

CFG 4.5

The care from the home visit was much better than the local one in the high street. Because they understand, well that’s how it seemed to me, the person who came was excellent, and cared about mum’s eyesight and things like that.

CFG 2.7

Wife of interviewee 12:

It was superb. Very very thorough. They were thorough, polite, they were kind, patient in their attitude. Excellent.

Researcher:

Were you aware of any difference between having your eye test at [local branch of optometrist chain] and the eye test this time?

Interviewee 12:

This one was far more thorough.

Wife:

I don’t tend to go in the booth with you, I take you to the optician but I don’t go in the booth with you. It probably was better. They were particularly caring and understood.

Interviewee 12:

And the extent of the equipment they had for making their diagnosis.

Researcher:

Did the eye examination take longer, having it done at home?

Interviewee 12:

Well I think the extent to which my eyes were tested was far greater.

Interviewee 12 and wife

Husband:

Oh [the domiciliary eye examination] was a lot more relaxed. We have to get all ready, get on the bus then you’ve got all the trouble of waiting for the buses to come home.

Interviewee 10:

This is so much nicer.

Husband:

That’s why we kept putting it off really. That’s why we missed one year and put it off to a second year because every time we went to go, one of us wasn’t well. When there’s two of you there’s always one of you got something. You think ‘I can’t do it this week I’ll make an appointment next week’ and then something else crops up. And it goes on and on. But when you’re having it done at home, if you’re not feeling quite up to it you can still have it done.

Interviewee 10 and husband

The optometrists from the four regionally based focus groups varied in the amount of experience each one had of conducting domiciliary visits. Those with little experience were sceptical about how much could be done, or whether or not an examination carried out at home was as good as those conducted in a practice. However, those who provided domiciliary eye examinations as part of their role extolled the virtues of testing at home, explaining how the patient was often more relaxed in their own environment and how the optometrist could also assess the impact of the environment on the patient’s sight. This exchange is an example of the comparative experiences:

OFG 4.3:

I used to do home visits. And I wouldn’t consider doing fields actually, in a home visit really, I’m not having a go at you, believe me. I just wouldn’t.

OFG 4.6:

I often find it sometimes easier to do a home visit on a dementia patient, I find that I get more useful results. I find stuff like ophthalmoscopy easier to do, because they’re in their home environment; stuff like pressures is always easier when they’re in their home environment as well. They’re more relaxed, their reading is better, they have access to things that they normally read, so you can always try to test out things in their home environment. So it’s often more of a useful, it’s a more functional eye test.

OFG 4.2:

It’s interesting you say you find ophthalmoscopy, I haven’t done domiciliary for years, but I’m surprised you say that ophthalmoscopy is easier. I would have thought quite the reverse, unless you’re dilating them, ‘cause you can’t make the room as dark.

OFG 4.6:

But they’re less distressed, so they’ll keep still.

As Table 41 showed, some of the optometrists had roles involving domiciliary care but many worked in community or hospital settings only. The availability of equipment was explored as a factor in community optometrists’ provision of domiciliary eye care and most of those who did not currently do domiciliary work thought that they did not have the right equipment to do so. This contrasted with TOC optometrists, all of whom thought that they were well equipped, as exemplified by this quotation from their focus group.

I feel very set up for a domiciliary eye examination with TOC. I am able to give a good test to provide the best possible eye care for a patient with dementia.

OFG 2.10

Provision of domiciliary care services

Not all optometrists are obliged to provide domiciliary care but under GOS regulations they should be able to advise a patient on how to access domiciliary care. The community optometrists who did not provide a domiciliary service were asked if they could identify a domiciliary services provider for a patient if required. Two optometrists said that they knew of individual practitioners; otherwise, responses indicated that their only knowledge related to specialist domiciliary care companies, and even then most had only a theoretical knowledge of their existence and limited experience of how they operated.

This area of questioning gave rise to discussions about the whole area of how domiciliary care is provided and funded. Although the comments about the domiciliary eye examinations conducted for the PrOVIDe study were complimentary, the comments from focus group participants and care home interviewees suggested some dissatisfaction with the system of domiciliary care provision.

Care workers described eye-care arrangements in the care home. Usually the care home had an arrangement with a domiciliary services provider who would send an optometrist to the care home several times a year. The optometrist usually had a list of who was scheduled for an examination, comprising new admissions and those for whom the annual examination was due. The optometrist was not usually the same person on each visit, suggesting consequent impact on continuity of care:

It was OK, but I noticed it’s somebody different that comes every time, so you know, I would think, you know, the continuity’s not there that, you would get probably possibly yourself if you were going to the optician.

CH interviewee 5

Not all care workers had first-hand experience of the eye examination. Of those who had observed or assisted a resident during an examination, some described perceived limitations in the thoroughness of the examination, albeit with the caveat that this was only their impression. Care workers explained that the optometrist would see several people in one session; in one home it was reported that as many as 20 people might be seen in one day. There were concerns that examinations sometimes felt ‘rushed’.

CH interviewee 5:

They whizz through.

Researcher:

They whizz through? OK, tell me about that . . .

CH interviewee 5:

Make of that what you will!

CH interviewee 5

I thought they did really well in the morning but when they came back in the afternoon, I did feel that they just had had enough and they were, they were a bit rushed and they just wanted to get finished and go because they’d got other people to see. I did feel that, I definitely noticed the difference in the afternoon.

CH interviewee 8

As much as possible we’re trying to encourage the optometrists, to come later in the afternoon when the residents are more settled and relaxed because sometimes they come in the morning or too late. We’ll tell them ‘come on this day then, because it’s less hectic’ because if everything is rush rush rush the residents feel that as well and that’s the time that they don’t co-operate.

CH interviewee 11

As described in Theme 1: eye examinations, care workers queried how much of the examination could be accomplished with someone with dementia, particularly with regard to people with advanced or end-stage dementia, but some suggested that limitations to the examination were at least in part linked to the optometrist. This care worker described this in some detail.

CH interviewee 3:

Some [optometrists] have a better understanding. And as I said before, some will say, ‘don’t worry, there’s other things I can check’ and have the patience, the understanding, the knowledge to work alongside a resident with those conditions at that stage. And I’ve also witnessed opticians who are like ‘well if they can’t do this, there’s no point, I can’t do it’ kind of thing. Which I understand because if that person doesn’t have an understanding of the dementia and the effect that dementia can have on that resident they’re thinking ‘well they’re not responding, I’m getting no response and there’s only so much I can do’ so, you know, I’ve witnessed both them things.

Researcher:

I don’t want to put words in your mouth, I just want to check, make sure what you’re saying. Do you ever think that they give up too quickly or . . .?

CH interviewee 3:

Yeah, like I said, I have worked where I’ve seen very patient people that have come to test these residents’ eyes, who sympathise, empathise and have the time and patience, and maybe it is have knowledge and understanding, I don’t know, but I’ve also witnessed where it’s just a case of, you know, ‘there’s no response and I’m getting nothing so can I have the next patient’ kinda thing, and that doesn’t help that resident who can’t speak or show any facial expression to respond to what you’re asking, but might have really bad eyes and might need them glasses, who would be able to wear them ‘cause wouldn’t take them off or whatever, but for them reasons don’t get that proper eye test.

CH interviewee 3

The potential for domiciliary examinations to be rushed or incomplete was also a concern for optometrists, as evidenced by comments about the purpose of the eye examination, limitations of the fee structure and the potential for exploitation of the system. There was no question that optometrists believed that people with advanced dementia should have some sort of eye examination but, cognisant of the perceived limitations already expressed, some thought that a comprehensive eye examination was not always possible and, if this was the case, wondered if a full examination fee should be paid. A ‘health check’ to identify conditions which it was in the interest of the patient to treat – for example, finding glaucoma that needed eye drops to prevent pain and/or further VI – should not incur a full fee. It was noted that an optometrist might not know in advance that an examination would be limited or even not possible, and if the optometrist was an independent practitioner attending a single patient, there would be an issue regarding how to compensate him or her for the time booked out of practice. However, focus group participants were wary of the ethical and financial considerations of domiciliary service provision in care homes when multiple examinations might be conducted and the majority of residents might not benefit from a full examination. These dilemmas are clear in the following extract from one focus group comprising mainly independent practitioners.

OFG1.4:

It’s a difficult one. On the very advanced dementia patients, I don’t like examining them because I don’t like claiming a fee. What are you going to do, 5 minutes and then claim a full fee, especially a domiciliary fee.

OFG1.6:

I don’t think the amount of time you spend, or what you can get done, should dictate how you claim something, it’s a matter of what is the good you can do for that patient surely.

OFG1.3:

You get the odd one where you think it’s really worthwhile of course, people who’ve been ignored or had a stroke and maybe got early dementia, but there’s so many people with advanced dementia and you think really this is a money exercise.

There was some overlap between this theme and theme 5 – improving services for people with dementia – so further detail is provided in Theme 5: improving the eye care of people with dementia. Similarly, the debate around the dilemma of providing eye examinations for people with advanced dementia is compounded by the additional factor of prescribing and dispensing new spectacles. There were suspicions that some dispensing is unnecessary as many people with dementia do not wear their spectacles. This is the focus of theme 3.

Not wearing spectacles

A phenomenon that first emerged during the interviews was of people with dementia not wearing their spectacles. It was also reported by some family carers during the focus groups but was particularly reinforced during the interviews with care workers.

Three interviewees, all with prescriptions for reading and distance lenses, stated that they did not wear spectacles because they felt that they did not need them; one person did not know where her spectacles were. The interviewer asked the other two people to put on their spectacles and then asked about changes in vision; both people reported improved vision with the spectacles on. One of them repeatedly stated that she did not wear spectacles because she ‘didn’t need them’ but she kept a magnifying glass to hand and stated that she used it ‘if I want to read something, you know. That’s when I use it, to look up something for the television’ (interviewee 1).

All three interviewees had two pairs of spectacles but did not appear to understand this or why they had two pairs. For example:

Researcher:

Right. Do you have two pairs of glasses?

Interviewee 16:

Yes.

Researcher:

So, what are they for?

Interviewee 16:

I don’t know. I’ve never used them. Those are the ones they left here with me. And then there are these. I didn’t want to throw them away, they are the ones that your optician gave me. [takes them out of a case] There they are. But I haven’t used them yet.

A fourth interviewee stated that he only wore his glasses ‘occasionally’ but, when making the appointment for the interview, his wife stated that she thought the money spent recently on new spectacles was ‘a waste of money because he refuses to wear them’ (interviewee 11).

Several family carers said that their relative would not wear spectacles and that they did not understand why, especially when the individual had worn spectacles for many years before the onset of dementia.

Mam’s thing is ‘I can see quite well without my glasses, I don’t need them, I can see what I need to see without me glasses’.

CFG 1.4

As far as I can remember from being a child, she’s always had glasses, always, and this last couple of years, she seems to get angry with them on her face, and she’ll take them off, and she’ll look at them as if ‘what am I doing with these’, and she’ll fling them on the floor.

CFG 5.2

She doesn’t wear them, I’ve never seen her wear them, she’s been prescribed glasses for reading, for watching television and she doesn’t wear them.

CFG 5.5

Those whose relatives lived in care homes often attributed the absence of spectacles to the failures of staff: staff not knowing the resident, high staff turnover, pressure of work and staff saw it as a low priority to ensure that spectacles were worn. However, care workers also reported residents’ refusal to wear spectacles as a major issue. The suggestion that failure to wear spectacles was attributable to staff turnover or to staff being unfamiliar with residents was refuted by care workers’ descriptions of how spectacle wearing was well documented in care plans. They were aware that relatives often blamed them, even though the care workers had tried, unsuccessfully, to persuade the resident to wear their spectacles. These care workers explained the problems they faced.

It does sound like I’m making an excuse of why they haven’t got their glasses, but that’s not the case. I can only speak for the residents that are in my care and the shifts that I’ve worked on, and I can honestly say we’ve got more than a good handful of residents in this home, who I know should wear glasses, have been given glasses, but will not wear them. Or we’ll put them on and not 2 minutes later they’ll take them off and you’ll put them on, then that resident will become agitated because you’re trying to put glasses on and they clearly don’t want them glasses on or they don’t understand that they need them glasses, and in which case you’re going to cause an incident or upset somebody.

CH interviewee 3

We’ve got a gentleman at our place and he’s mobile, you give him his glasses first thing in the morning, first thing he does is take them off, he doesn’t want to know, doesn’t, but, he can’t see enough to even feed himself, so now we have to assist him with feeding because he doesn’t want to wear his glasses. There’s nothing you can do to get him to want to wear his glasses, you try throughout the day and he just takes them off, throws them away, doesn’t want to know.

CHFG 2

The reasons why people refused to wear their spectacles were something that some carers speculated on but none really knew. One suggestion was that the persistence of long-term memory and loss of short-term memory meant that people with dementia remembered the time when they did not wear glasses and did not remember that they needed them now. Another hypothesis was that a dementia sufferer’s world ‘shrank’ and an adaptive response (unconsciously) was to go without anything that was no longer perceived to be necessary. A third theory concerning people who had different spectacles for distance and near vision was that confusion and fear of wearing the wrong ones resulted in neither pair being worn. But, in essence, the reasons why some people with dementia refuse to wear their spectacles were not answered by this study.

Missing and broken spectacles

A second problem was that of ‘missing spectacles’. Focus group participants caring for relatives at home reported incidences of spectacles going missing, but this was more commonly associated with people living in care homes.

My mother hides her glasses, hides everything. So that’s the problem with actually getting her to wear her glasses. She’ll put them in socks, anything, in drawer. One pair we don’t even know where in the world it might be, we’ve looked everywhere.

CFG 2.7

I think it’s about 2008 when she started having dementia. We actually noticed it because she wasn’t eating. Also she’d seem to lose her glasses very quickly. And the ones which she’s had most recently, they’ve gone, they’ve disappeared as well, even with her name on. And none of the staff, in the home she’s in now, have got a clue where they are.

CFG 3.8

Care workers identified missing spectacles as a major problem and again they felt that they were often unfairly blamed. Just as CFG2.7 explained how her mother hid her spectacles, care workers described how residents would hide spectacles or leave them lying around, or how a resident would pick up another resident’s spectacles (one care worker reported finding 30 pairs in one resident’s room). Several care workers explained that the company dispensing the spectacles marked them with the resident’s name and sometimes whether they were for distance or near vision; still, they went missing.

Another problem, particularly in care homes, was the frequency with which spectacles were broken. These two care workers summed up the difficulties they faced:

Oh, bane of our lives. If I could make a way for glasses not to go missing I’d be a rich person. It’s either they get broken because they have them in their hands, sitting on them, they’ve put them somewhere, or [they are removed by other residents]. You know they’ve got their names on and everything but they just go, it’s just like they vanish for good forever and it’s like ‘but you only had them on last night’. We’re not bad at it, but some glasses do go missing, I agree, and that’ll be in every home, any home that says that they don’t, they’re liars.

CH interviewee 2

You see that lady? You’d open her bag and she’d have maybe five six, seven pairs of glasses, and then you have other family members saying ‘where’s my mum’s glasses, she hasn’t had them on’ but you can’t get in, it’s an intrusion to open that lady’s bag, you’ve got to do it discreetly, which can cause a lot problems but yeah, it is a problem.

CH interviewee 10

Despite the difficulties of individuals refusing to wear spectacles and missing or broken spectacles, there was general agreement that it was important for people to wear their spectacles, if they could be persuaded to do so without causing distress.

The cost of spectacles

A considerable number of participants introduced the issue of the cost of spectacles. Although most of these avoided express statements that spectacles were too expensive or overpriced, they said things such as ‘the frames were £150 but you want nice frames’ (interviewee 2); ‘so by now, I’ve spent twelve hundred pounds on glasses in 15 months’ (CFG 4.2); ‘I wouldn’t go to [optician’s name] because I ended up with a pair of glasses which cost me £400 because they are experts at putting prices on’ (CFG 2.1); ‘to keep spending out money for glasses that are never gonna come out the bag’ (CFG 3.6). A small number of people overtly remarked on the deterrent effect of cost:

Researcher:

Can I ask, why did you leave it for five years before having your eyes tested?

Interviewee 22:

I never had the money. Fluctuating income.

Researcher:

Does the cost of spectacles make you reluctant to have your eyes tested, in case you need new spectacles?

Interviewee 22:

Depends on your pocket. If your pocket is a bit low it makes you reluctant to go and get your eyes tested.

Interviewee 22

It’s a big outlay, you know, if they’re paying three or four hundred pounds for a pair of glasses, it can actually put you off going.

CFG 5.4

Overall, the comments suggest that cost was not an explicit barrier to acquiring spectacles for most participants, but the references to cost raise a question about the extent to which the cost of spectacles is a concern for some people.

Spectacle dispensing

Two issues emerged in relation to spectacle dispensing: the factors that should be taken into consideration when prescribing or dispensing, and a concern about unnecessary dispensing, particularly in care homes.

Several optometrists made the point that, to avoid confusion, it was better to keep things as they were as far as possible and avoid unnecessary changes if new spectacles were required after an eye examination. This meant not changing the type of lenses, for example moving from single vision lenses to varifocals, or the style of frame. This view was echoed by family carers who illustrated the point with examples of unsuccessful changes:

My wife, a couple of years ago she went, and they gave the prescription for her glasses, she normally wears varifocals, and they gave her some reading glasses, they thought that would be better than trying to use the reading part of the lens. She’s never used them, never used them at all.

CFG 3.4

We got some bifocals for my husband, he’d never worn bifocals before, and I thought well it’ll be easier for him than switching. It was a complete disaster, he never wore them. And I feel that the optician ought to have warned me that that was a bad choice.

CFG 3.2

Beforehand, my mum did wear glasses for short sight, for close work, not all the time, occasionally when she really needed them, and then as she aged she obviously needed them more, and they got to a point where she needed two pairs of glasses. At this point she was a few years into the dementia, and that was hopeless, it was much worse than having one pair of glasses, because she could not cope with the ‘which glasses’, she just couldn’t cope with the concept of two pairs of glasses. I think it was because throughout her life it was ‘my glasses’, not ‘which glasses’.

CFG 5.1

Husband:

My wife needs both reading and distance glasses and they said would you like to try these varifocal things and we paid over £300 for a pair of those and you only used them for about a week and you couldn’t get used to them at all.

Interviewee 3:

Because the eyes aren’t the same and I couldn’t you know. It didn’t work, I couldn’t.

Husband:

So we had to go back and get separate glasses for distance and reading which cost again.

Returning to the subject of whether or not all new dispensing is necessary, and the association with theme 2 (domiciliary eye care), care workers were asked about the procedure for ordering spectacles for care home residents. If residents had capacity to make decisions and control their financial affairs, the decision was theirs. If they lacked capacity, the need for new spectacles was referred to the family. Care workers did say that there were instances, although rare, when families refused to make the purchase on the basis that the spectacles were a waste of money as they would not be worn, would go missing or did not improve the individual’s quality of life.

Despite this defined procedure for ordering spectacles, there were reports from some family carers of spectacles ‘appearing’ even though the carer had not been consulted. It would appear that this could happen only if the care home resident was eligible for free spectacles as this would remove the need for a relative to agree but, as the next quotation demonstrates, this was not always the case.

He went into a care home and his glasses disappeared for 5 weeks and that was because the optician had been and taken away everyone’s glasses in order to get them new ones. Goodness knows who consented to that exam. Then we took part in the study and he had his eyes tested. And then he moved to another home where – surprise, surprise – I walked in one day and there was an optician testing everyone’s eyes and getting people to sign the consent form for the exam. So I think some interesting things go on. Ah, this is a money spinner! They tested his eyes, when he wasn’t due a test, and provided two pairs of NHS glasses, reading and distance. And he wasn’t entitled to NHS glasses.

CFG 4.2

This was an isolated case but may be the sort of incident that a couple of optometrists had in mind when they expressed fears that dispensing in care homes was open to exploitation.

The thing is, something’s gone wrong when the actual prescribing rate is higher than the national average. And something has also gone wrong, because, if anything, I actually prescribe less. When people just go in and they change the glasses time after time after time, I am suspicious that there is something.

OFG 5.3

The companies I’m talking about, give glasses every year because they [can’t see the old ones] so they find something or they use the last time records, and they give new glasses, and they’re all sat in a pot in the office, because they’re not worn.

OFG 5.5

Optometrists’ skills and training needs

Theme 1 included problems associated with conducting an eye examination. This gave rise to discussions about the extent to which members of the optometry profession were confident and competent to provide eye care for people with dementia and how they could be helped to improve their skills and knowledge. Asked about how they felt about their personal clinical skills, optometrists said that they needed more information about dementia to improve their understanding of the patient’s experience and how to adapt their procedures, and provide them with insight into the ethical-legal aspects of consent and capacity, as the following examples demonstrate.

It’s not just the testing, I think maybe we do need to know more about how dementia affects patients so it’s not specifically to do with their vision. I was reading last night about peripheral awareness and to do with visual hallucinations similar to Charles Bonnet Syndrome but connected to the dementia. Now, to be honest, that’s not something I really would ever have considered until I was reading it last night.

OFG 1.1

I think a lot more information about dementia and what patients with dementia are going through would be useful. A way of adapting your routine, or ways of thinking, processes involved, would be very useful. It would not only open the optometrist’s mind to what the patient is experiencing, but also give us avenues to experience to empathise better with the patient. I think that’s very important.

OFG 3.1

I think the issue of consent is a big thing really, understanding. I think from a training point of view from optometrists we don’t really have training on what consent is, and valid consent, and informed consent and power of attorney.

OFG1.4

They discussed the different ways in which training could be provided, and their preferences were for interactive methods such as peer review, workshops and talks from people involved in dementia care rather than distance learning materials. However, the general feeling was that skills and confidence were best developed through experience: exposure to people with dementia but with access to peers and mentors who could guide and advise.

Maybe that’s where our peer review training comes into it, dementia cases as part of the case scenarios. And maybe for young practitioners, encouraged to ask more experienced practitioners ‘I had this really difficult patient the other day, what do I do when they won’t press the button on the visual field machine’, feeling the courage to say, to admit, that ‘we didn’t know what to do in that circumstance, what does everyone else do?’. And I think that’s where the peer review, or maybe mentoring, over and above the pre-registration year, would be really useful, to have someone pick up the phone and say ‘oh gosh, what did I do’. And our young practitioners don’t have that. They don’t have anyone to go to.

OFG 4.5

It all comes down to exposure to these patients and experience. And, the more you do, you know, the more you learn. So you can’t, you can’t get away from the fact that you need to constantly be honing your skills, with this group of patients, if you want to get better.

OFG 3.4

The Outside Clinic’s optometrists explained how their confidence and competence quickly built up through experience, but they had more exposure to people with dementia than did the average high-street optometrist. The clinical governance procedures and supervision for new optometrists operated by the company also meant that, when they first started work, they had opportunities to ‘shadow’ more experienced optometrists. The importance of such opportunities was discussed by optometrists in other groups who talked about the need for supervision and some form of mentorship.

Development of the specialist practitioner

A second suggestion to improve services was to explore the potential for developing a specialist practitioner role, someone not necessarily limited to working with people with dementia but who would specialise in older people. This could accommodate eye care for many people with dementia because the prevalence of both dementia and the major eye conditions causing VI increases with age. They acknowledged that work was needed to explore the feasibility of this role, including assessing how many practitioners would be needed, what training would be required and if sufficient professionals would be interested in this type of role.

An alternative suggestion was to develop a community eye health service in the NHS, rather like community dental services, with salaried optometrists. This linked into the next area that optometrists thought needed attention: the service structure around examination fees.

Revision of the fees structure

The need to allow more time when examining people with dementia was identified by all participant groups. In the interviews with people with dementia, perceptions about what constituted good practice were often associated with the optometrist taking time. Family carers raised the need for the optometrist to allow time to involve them and care workers commented on the number of appointments that were completed in a session, and wondered if sufficient time was allowed for each examination:

You feel as if, it’s rushed because there’s so many, or even when there’s that few, if you know what I mean, they probably don’t get the time that’s needed, in all fairness.

CH interviewee 3

Researcher:

So they get through 20 [residents in a session]?

CH interviewee 5:

Yes, they whizz through, yeah.

Researcher:

They whizz through? OK, tell me about that . . .

CH interviewee 5:

Make of that what you will.

CH interviewee 5

There was broad agreement from optometrists that examining a patient with dementia can take more time than examining most other patients, and that appointment scheduling, particularly in large or busy practices or multiples, does not allow for this.

I think they have special needs. And quite often, they need more time than any other patients that we see. And somehow with the present system of one size fits all, it doesn’t really work . . . there’s more to think about before we have a final solution there but it’s quite obvious that to give the proper level of care, we need to give them the proper level of our time.

OFG 3.4

Despite the time constraints of ‘the system’, optometrists discussed ways to overcome the lack of time. ‘Over-running’ – taking longer than the scheduled time – can have a knock-on effect for the rest of the schedule, affecting patients and staff, and the only alternative is to prepare for this. One suggested approach was to book a longer or double appointment. Some optometrists said that they did this, but others identified two difficulties. The first was anticipating the need if the patient was not previously known to the practice as someone with dementia. The second difficulty concerned funding. Although some optometrists said that they or their practices were prepared to absorb the cost of a longer appointment, this was not the case everywhere, hence the necessity to review the fees structure to meet patient needs:

Something needs to be done about that at a higher level, at an NHS level, where we can get proper remuneration for looking after these people properly, because it’s completely unfair on the patient that they have to be whacked through when they’re going, the majority of them will probably be going, to the big opticians because the majority of patients are being seen by them and 20 minutes, if they’re lucky 30 minutes, that’s no way enough. No way.

OFG 4.3

Another suggestion was that, on some occasions, it may be desirable to bring the patient back for a second appointment to complete the examination and prescribing. The next quotation summarised this well:

Taking your time with [the examination] is a double-edged sword, because sometimes if you take too long, you lose their concentration. There is a delicate balance of making the patient comfortable, but also getting through what you need to do. I’ve often found that sometimes it’s easier to do it in chunks and get them to come back, for little visits, rather than doing it all in one sitting. Having a couple of visits, tends to make them a little bit more familiar with the environment that you’re in, and more approachable. So the fear factor tends to reduce, the second or third visit, and then you find you can do more, with them, at that point.

OFG 3.1

Again, the issue of funding was raised as a consideration when scheduling multiple appointments, but optometrists described this as something that should be overcome rather than remaining an insurmountable barrier.

There must be somewhere in the system, that allows, in special cases, to get those patients back again if you haven’t got the right . . . level of information to make a decision.

OFG 3.4