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Table 4 Themes identified in studies

From: Exploring attitudes and preferences for dementia screening in Britain: contributions from carers and the general public

Theme Evidence
  Accuracy of the test “I’d want to know how effective it is… I’d want to be given some figures”; “Yeah, the accuracy of the test is everything. At the moment it’s our considered opinion that the test is in its infancy”.
“But what are you going to screen for? In bowel screening and in breast screening it’s quite clearly known what you’re searching for and it’s quite clearly known what you’re going to do if you find it. My first question is what are you going to screen for?”
  Existing care “A lot of the staff members… treated them (patients) like animals”.
“I mean if you are in the system already you’re much more likely to see the publicity about do you want to join… you know, sign up in the thing, you know, you’re more… or you’re in the hospital you see a sign and think oh yes… perhaps I should be doing that!”
  Existing health state “You’ve already been diagnosed with something and they’re helping, and you’re being treated, so there is a cause and an answer which would create more confidence”.
“Worry more”.
  Experience with disease There was no consensus between those with experience of the disease and those without. Some, with experience, argued, “I have a few acquaintances who have dementia, and it makes it much more real”. These were more likely to accept screening. However, some had family members with the disease and were dissuaded from undertaking the screen because of this experience: “Having someone in the family or close with a condition does not make you any more likely to seek answers for it”.
Some argued that previous experience had no bearing on what is perceived as an individual choice: “Having someone in the family, I wouldn’t say affects you at all, affects your likelihood of going for screening at all”.
  Financial motive “Somebody could make money”;
“I would have suspicions if it was being done by a drug company”.
  Lifestyle and life view “It’s the balance… of what you have to go through for the screening… what the benefits are, you get a return, or carers get a return, it’s that sort of balance”.
“Yeah, exactly, it’s a personal choice, and I think if you know that your lifestyle could lead to dementia you’d probably be more comfortable with your lifestyle and not want to worry about dementia.”
  Other screening experience “Is very invasive of your body”.
“That’s completely different, the way you think about it and anticipate it”.
  Role of clinician “My daughter (is) qualified (as doctor), she was treating people… going to discharge them and saying has their dementia been managed… and consultants were saying to her ‘Well, they’re not diagnosed with dementia’… She’s always trying to get them care plans and fighting for their support, but you know, while it’s not even known widely at that level amongst the professionals, then I think there’s a lot of work to be done, and not just in the community”.
  Role of culture “My wife is Chilean, and when we go over there it is a family concern over there, they really do look after each other”.
“I live in the Philippines most of the year and I have a big extended family, and they look after me… and it is one advantage you have in third world countries, they have extended families… there is no suffering”.
  Role of family “A lot of people tend to keep it in the family, than let outsiders know that it is happening, don’t they? That is the problem.”
“It sounds dreadful but in fact, it is true isn’t it, for a family to have to learn that some member of the family is going to come down… be felled by this disease is just awful. You’re living on a knife edge and borrowed time”.
  Who to target? “School”.
“You should target everyone rather than a certain group of people like based on age or ethnicity or experience or whatever”.
  Theme   Evidence
  How to test “Would brain scans be appropriate for a screening”.
“The form of screening that I would opt for, if there was a choice, would be to go and have the head scan because it shows whether you’ve got Parkinson’s or Alzheimer’s. I mean, I do know that because that’s how we found out my mother had got it, and my uncle, and what they’d got, because green, I think it’s green, or was it blue, is the Alzheimer’s, red is the Parkinson’s”.
  Learning of test “Yeah, the woman actually went in there and she did a test, a memory test with my mother, and my mother already previously knew that this woman was coming because they have to tell them, and I went, and I was sitting there and I’m thinking… well, you’re asking her questions that she’s already logged in her head and she knows, and she’s going to reel them off, as she was doing”.
  Organisational pressures “The doctor doesn’t have time, you know, you rush in, you’ve got five minutes, and away you go, so if you have two ailments and you have two questions you have to get another appointment, so you know, why is this doctor doing the screening?”
“It would put more pressure on the GPs because they would have to have training, which means more closed surgery days, and they will have to have special times to do that, you can’t do it on a normal ten minute appointment. So yeah, that would put pressure on them to be honest”.
  Relationship to doctor and health “I think if you’ve got a good rapport with your doctor, you feel comfortable, and probably with a doctor you’re familiar with, they spend a bit more time with you than a doctor you don’t know, so I think that probably… well, in my case it would make it easier”.
“Even if you just visit regularly for different things, and if you have the same GP you see all the time, if they come and suggest this screening… you might be more inclined to accept it. Because otherwise, if you see a different GP every time and one of them offers it to you, you say no, I’ll pass. I think that, yeah”.
  Training needs for staff “Well they need to be trained, it’s got to be someone who’s trained… and it’s not going to be achieved”.
“It’s got to be somebody trained to do that and not anything else”.
“Yes, we’re looking for the good test that a trained person can administer”.
  Who should conduct the screen? “I think as a general practitioner they get five minutes with you, and to make decisions you know… so maybe you’re better off with a more specialist… somebody who deals with this”.
“A carer that does a test”.
“Family, carers, nurses”.
  Theme Evidence
  Planning “Rather know to be prepared, you know, set things in place before you are in a state where you can’t remember anything”.
“Don’t know whether I’m going to end up in a wheelchair or not”.
  Role of support “Getting them involved in providing a good support network for each other, to be there for each other as well as the person affected, and I think it probably just wakens people up to just sort of try and have a better quality of life rather than dwell on problems and depression and bad weather”.
“Screening cannot interfere with my life. As a woman I have many different roles in my home, looking at my family and husband and depending on what is happening, I might not have time to go for screening”.
  Social impact “One of the things that would put me off I think is like… maybe you test positive… what if that (information) gets into the wrong hands, like employers or like… that can affect you too, like ‘Oh well we won’t employ that group because…’ Someone’s got information somewhere about you which is possibly… that’s what would put me off, that would be a negative”.
“But if you’re going to risk losing your job, if you’re going to risk losing whatever in your current lifestyle, then you’ll probably back off until there is a precise treatment”.
  The screen result “I am not sure knowing actually benefits me”.
“If you’re the kind of person who hides from the truth and reality, you’re not going to be any more likely to go”.
“I’d definitely want to know. I’ve seen it with my father, and my mother trying to hide it from everybody, she was frightened to death of what people would say, and even neighbours she tried to hide it from them, and you know it was ridiculous really, but she just wouldn’t get advice or help: ‘I can cope, I can cope’”.
  Themes which cut across the pre-, in-, and post-screen process
Acceptance of test
“I wouldn’t want to be screened… if there was any side effects or if the test got too intrusive”.
“If you said a simple written test, it’s not a simple written test for anyone who can’t write… so a simple written test will eliminate quite a fair number of people”.
Awareness of disease
“Alzheimer’s is one of these nebulous, I am not really sure what it is”.
“Alzheimer’s… there is somewhere around 100 different forms of Alzheimer’s”.
Costs “If there is no positive implications (no cure), is it worth spending the money”; “That’s an awful lot of money in terms of paying the doctors and time taken off their work”; “It would probably be very expensive”; “It could be better spent”; “Well it’s a waste of money”; “There is no funding for this”; “I mean unless they’re going to put money into the system it’s actually fairly pointless”.
  “There’s more and more money being taken out of the NHS, and this system, screening, is requiring more money not fewer doctors and nurses and care workers. So why… forget it, put the money into research. Forget the screening”.
Lack of ability to change prognosis “I’d still rather be in my house where I’ve got a familiar environment to me, and I know where… especially if I know my brain is deteriorating, the last thing I’d want is to be surrounded by strangers in a completely different environment and everything’s in a set regime and all that sort of stuff. So I think yeah, a care home is probably the last place I’d want to be”.
  “I’d probably change my opinion on it if I knew for certain there was actually a treatment for it that worked. But at the moment I just think there’s so much research, but there’s no treatment for it”; “I think you’re better not knowing nothing about it at all, personally speaking I’d rather not know at all, but I… I could be influenced”.
Patient Benefit “Dementia, it’s one of those ones where if you get it there’s not much you can do about it, so unless I had specific reasons to do it I don’t think I’d have it”
  “(They) see it as quite positive really, I think I am lucky to live in a country where there is this sort of screen for this disease”.
Stigma “I think there’s a sort of stigma attached to going for screening, and people will be ducking and diving, you know, so I think it’s important”; “If you are not careful you are going to be labelled”; “Because of the stigma”; “Rightly or wrongly, it has a stigma”.
  “People (would be) judging you for an illness (and this) shouldn’t really be right”; “Too many of the population have a stigma, you know, and… just because they don’t know how to handle it in my view”.