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

Context

Findings from a systematic review of attitudes and preferences towards screening for dementia [7] were largely drawn from studies undertaken in non-UK healthcare contexts. Both the research team and the funders, a major UK dementia charity, felt it important that the review be contextualised to better understand the finding’s relevance to the UK and enhance the review’s impact.

Themes

From the discussions at the event 23 key themes emerged. A framework was developed that divided the screening process into 3 stages: (1) pre-screening, (2) in-screening and (3) post-screening periods (Fig. 1). Pre-screen: existing care, existing health status and other screening experience. In-screen: the screening tool, role of clinician, how to test, learning the test, who to conduct the screen, relationship to doctor and awareness of the disease. Post-screen: social impact, the screen result, prognosis and stigma. Many of the themes were influenced by the individual’s social context such as; lifestyle and life view, role of family, role of support. Also the wider health and social care organisational context such as financial motives, costs, on whom to target the screening test, organisational pressures, and planning.

Model of themes identified

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Themes only raised by the ASRN group included the relationship to the doctor, organisational pressures and the social impact of dementia screening. Themes exclusive to the general public group were training for staff, and the role of the family (Table 3). A summary of themes can be found in Table 4; a comprehensive table is provided as Additional file 1: Table S1.

Pre-screen

1. Existing care

Delegates with existing care needs mentioned that their current health was an important factor when deciding if they would attend for a screening test: “I mean if you are in the system […] or you’re in the hospital, you see a sign and think ‘Oh yes […] perhaps I should be doing that!” Conversely, experience of poor quality care makes individuals less likely to attend screening. Attendees who had witnessed poor care also indicated that this was an additional factor that would make them less likely to attend.

2. Existing health status

There was no consensus on the impact of an individual’s existing health status towards a decision to screen. While most thought that an awareness of conditions would result in improved care “You’ve already been diagnosed with something and they’re helping […] which would create more confidence”. Others argued that knowing would make individuals “worry more”. There was a high level of variation between responses.

3. Other screening experience

Experiences of other screening tests and programmes were discussed, most commonly breast and cervical cancer screening. Screening for dementia however; “that’s completely different, the way you think about it and anticipate it”. Previous screening experience was seen as relevant but how far such experience or lack of experience might affect individual decision-making was unclear.

In-screen

1. The screening tool

Attendees had a number of concerns regarding test accuracy. Many wanted to have evidence that the test works effectively before undertaking a screen; “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”. Concerns were also raised around pen and paper tests, which may not be understood by everyone, given language and cultural differences. Where partners had experience of being tested for dementia they noted the Mini-Mental State Examination as being a particularly “stressful” tool.

2. Role of the clinician

Some delegates argued that there is insufficient agreement on screening within the health profession to make it a viable programme “(My) daughter (is) qualified (as a doctor) and she was treating people […] 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 […] I think there’s a lot of work to be done, and not just in the community”.

3. How to test

There was no consensus on how a screen should be undertaken. The idea of computerised or web-based screening was popular, as was brain imaging and genetic testing; “Would brain scans be appropriate for a screening?”; “The form of screening that I would opt for [..] would be to go and have the head scan”. Delegates were reminded that pen and paper tests were the focus of the review [7], but conversations repeatedly returned to brain scans and genetic testing, so there is insufficient evidence to draw any robust conclusions on the attitudes and preferences towards simpler screening tests.

4. Learning the test (repeated test exposure)

For those delegates who did discuss the use of pen and paper based screening tests, there were some concerns that the test itself may become less effective over time “Yeah, the woman actually went in there and she did a test […] 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”.

5. Who should conduct the screening test?

There was no strong preference for a particular healthcare professional to administer the screen; however delegates agreed that it should be a trained individual. The most frequently cited examples were the patient’s owns doctor, nurse, or a memory specialist: “I would prefer a doctor, my own GP”; “It could be a memory clinic […] it could be a department of the hospital”; “Well, have mobile vans coming round!”; “Social Services”; “Family, carers, nurses”.

6. Relationship to doctor & health care system

The relationship to the doctor was seen as central to the decision to screen “I think if you’ve got a good rapport with your doctor […] it would make it easier”; “Even if you just visit regularly for different things, […] you might be more inclined to accept it”. For some attendees the relationship was correlated with the existence of comorbidities; “I mean if you have two illnesses you’re much more likely to have a rapport with your clinician aren’t you?”.

7. Awareness of the disease

Awareness of dementia could both increase and decrease the likelihood of attending dementia screening. Some delegates with experience of caring argued that those with “acquaintances who have dementia” were more likely to accept screening because it “makes it much more real”; however, some carers were unenthusiastic: “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 your likelihood of going for screening at all”.

There was some uncertainty over the syndrome, how it would impact on their life and on their family, friends and social contacts “Alzheimer's is one of these nebulous […] I am not really sure what it is”; “how far (has) science or knowledge has gone with regards to understanding Alzheimer’s or dementia. Are they two words for the same thing?” There were also some uncertainty over the cause of illness: “Maybe it could be down to stress […] I don’t know […] fertilizer they put on food”; “Some say it’s the scrapings off the pot, when you’re cooking using a grey aluminium pot”.

Post-screen

1. Social impact

There were a number of concerns about the societal impact of screening “I think all that might do is just engender tremendous anxiety in the population at large”; “I think we think it could be detrimental and it also […] it’s unnecessary”. There were confidentiality concerns that the screen result would be disseminated wider than healthcare professionals: “One of the things that would put me off I think is […] What if that (information) gets into the wrong hands, like employers […] that would be a negative”.

2. The screen result

There was wide-ranging discussion of potential reactions to receiving the screening result. Whilst some delegates would want to know their results “You should find out for the sake of it”; “(if I knew) I wouldn’t have the stress of worrying about it”, others preferred not to know. For some it was like being “given a death sentence”; “It’s you slowly drown into pretty much a vegetable”. Another responded “I mean, excuse my bluntness, but if someone finds out […] that you will be completely forgetful and a drooling mess […] and we don’t want to be that”. Some comments were more neutral “from what we know right now … I am not sure knowing actually benefits me”. One delegate said “If I discover I have dementia then Jesus! My whole life and perception will change and try and shape things the other way around.”

3. Lack of effective treatment and prognosis

The unavailability of a cure was a concern for a large number of delegates and appears to have an impact on screening decisions. One noted: “You’re still facing the possibility of being told that you might have a disease for which there is no cure”; “dementia, it’s one of those ones where if you get it there’s not much you can do about it”. For some they would only attend a screen if the disease could be cured: “If there was a cure or they could head off that disease that would be something to encourage you for it, for a test”. While the lack of an available cure is a significant concern, there were also fears that existing treatments are inadequate. Importantly, some people expressed the view that their attitudes may be subject to change: “I’d probably change my opinion on it if I knew for certain there was actually a treatment for it that worked.”

Few people in the ASRN group saw a benefit to screening in the current context. The overall mood was characterised by a form of fatalism “You can’t change what’s going to happen and what’s not going to happen”. One delegate felt these views were not necessarily an argument against offering screening: “it is my choice, so I would be informed about it beforehand and then I would make my choice, so I don't see a problem there”.

4. Stigma

For some attendees the perceived stigma of undertaking a screen test had a negative impact on their willingness to be screened: “I think there’s a sort of stigma attached to going for screening”; “If you are not careful you are going to be labelled”; “…because of the stigma”; “Rightly or wrongly it has a stigma”. There was a belief that “people (would be) judging you for an illness (and this) shouldn’t really be right”; “Too many of the population have a stigma […] just because they don’t know how to handle it”. One delegate got particularly emotional on this issue “I’ve been a carer, and you have 10 min with that patient, they’re a human being for God’s sake”; however, it was also argued that the level of stigma encountered by those with dementia is reducing across the society: “mental health and everything […] now it’s not so much stigmatised, you know”.

Cross-cutting themes

1. Lifestyle and life view

Lifestyle and life view were also important determinants, both the perception that certain lifestyles might affect dementia risk and the anticipation of lifestyle changes: “If you’re going to risk losing your job […] losing whatever […] then you’ll probably back off until there is a precise treatment”; “I think if you know that your lifestyle could lead to dementia you’d probably […] not want to worry about dementia”. Personal circumstances, such as having children or other dependents could affect decision-making. Mostly those with young children felt a responsibility to be screened, but others said it was more important for them to “get on with family life”.

2. Role of family

The family plays a complex role in determining an individual’s decision to attend a screen for dementia. Families may disregard someone’s own concerns; one delegate mentioned a friend whose “husband refused to take her” to the doctors. Adding that the experience “was upsetting and worrying for her […] it was terribly distressing”. Families may also keep a dementia diagnosis to themselves “A lot of people tend to keep it in the family, [rather] than let outsiders know that it is happening, don't they”. Some delegates spoke about a shared experience “It sounds dreadful, but in fact it is true, isn’t it, for a family […] You’re living on a knife edge and borrowed time”. Issues around having a family and being female were also raised “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”.

Delegates from black and minority ethnic communities spoke about their cultural differences, in particular the role of the extended family which was seen as beneficial “it is not a problem, because you have people around”; “one advantage you have in third world countries, they have extended families […]. There is no suffering”. They spoke about the divisions of labour, the delegation of jobs and caring responsibilities within the family and home environment “when we go over there it is a family concern over there, they really do look after each other”.

3. Role of support

Availability of support was one of the main themes emerging from all groups; “You can’t cure it, but if there’d have been some help”; “I would want to live my life and not to worry, but if I was diagnosed with dementia and I had the right support around me, fair enough, I’d like to do things”; “getting them involved in providing a good support network for each other, to be there for each other as well as the person affected”. It was also recognised that the provision of support was not related to the provision of screening “you can get all of that without screening”.

4. Financial motive

A financial motive for screening was discussed in seven of the eight groups. There was a large degree of scepticism about the reasons screening was being discussed: “somebody could make money”. A number of attendees believed that the adoption of dementia screening was to improve their GPs’ “pay scale”. Pharmaceutical companies in particular were believed to be behind the drive for screening aiming for a further “push on drugs”. Many delegates mentioned that they “would have suspicions if it (the screening) was being done by a drug company”. Some delegates argued that “the media [are] selling it (dementia) as a fear tactic”. There was also a fear that insurance companies would also abuse the screen results, mentioning concerns that, if screened, people “risked” being “clobbered for higher insurance”. There was general agreed scepticism over the profit motive in provision of other care services, that seemed to colour views on postulated economic drivers for screening, “now it is done on a commercial basis, on commercial terms, which are getting a profit out of it”.

5. Who to target

There was no agreement on who should be invited for dementia screening, and little awareness of the factors that might determine why a screening programme might target certain groups. No discussion groups raised relevant questions such as "When does dementia become more common?" or "Is there any evidence that can show how well these tests identify dementia at different ages?" One person noted that “You should target everyone rather than a certain group of people”. The youngest group which was recommended as a target was “school age” children, others suggested “40 and upwards”. While older age is a risk factor for dementia very few delegates identified this population as the target for any screening intervention. The exceptions were some of the ASRN delegates who were happy with the age specifications set in quality standards such as the Commissioning for Quality and Innovation targets set by the UK Department of Health [1].

6. Organisational pressures

There were a number of concerns from delegates regarding the logistics of offering screening through general practice, mostly from an organisational and training perspective: “The doctor doesn’t have time. You know, you rush in, you’ve got 5 min, and away you go”. Another delegate noted “It would put more pressure on the GPs because they would have to have training […] you can’t do it on a normal 10 min appointment”.

7. Training needs

There was a concern that with any new programme there are new skill requirements “which means more closed surgery days”. The groups did reach a consensus and indicated that the individuals administering the screen needed the adequate training to do so; no one was willing to be screened by untrained individuals. There was a significant concern that unqualified and untrained individuals may make unacceptable errors resulting in additional concern for the patients “It’s got to be somebody trained to do that and not anything else”.

8. Planning

The need for planning after the test was raised in a number of groups. Some would “set things in place before you are in a state where you can’t remember anything.” For these participants the opportunity to make legal arrangements, such as a lasting power of attorney, was very important; this was raised in 3 of the 8 groups. Time to make other preparations, not necessarily dementia-specific, came up too; one delegate said that they had already started changing furniture and preparing their home for old age “I don’t know whether I’m going to end up in a wheelchair or not”. Conversely, some would not attempt to plan for the future; “for me [it’s] not to do with jobs or insurance…just lifestyle “. And some would not want to try to change their lifestyle, “You can't be cured anyway, my guess is. Yes, have another glass and forget it all”.

9. Costs

For most delegates cost was a major factor; “If there is no positive implications, 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 could be better spent”; “Well, it’s a waste of money”; “There is no funding for this”. “There’s more and more money being taken out of the NHS […] forget it, put the money into research. Forget the screening”. Delegates from the ASRN had very strong preferences not to spend money on screening but on "research".

Questionnaire results

Responses to the pre-post questionnaire demonstrated that a number of delegates changed their minds regarding their attitudes towards screening, many also changing their opinion on the benefits of population screening. From changes in questionnaire responses we can see that by the end of the event:

• Fewer delegates said they would like to know if they had a problem with their memory

• Fewer delegates said they would like to know they had greater risk of dementia

• Fewer delegates said they would like to know if they had a problem with dementia

• Fewer delegates said people should be tested for dementia

• Fewer delegates said they thought screening was harmless

Thirty delegates responded to the question “How often do you think individuals should be screened for dementia?” and answers varied widely; some partners responded that screening should be conducted on a yearly basis; others argued that it could be once a decade or never. Eleven people made no response to this question, four people said they didn’t know and six people said never.

Process

There are a number of factors which impact on findings. Firstly, by only recruiting partners from the East of England and London regions we were unable to capture a diverse range of attitudes from across the country, meaning any variation at regional or national (Wales and England) level may be missed. Secondly, as some attendees volunteered via the ASRN, there is a potential source of bias as those with the strongest opinions and/or experiences may have attended the event thereby skewing the feedback.

Impacts and outcomes

Findings from this public event provide some evidence that issues related to test accuracy, existing care, lifestyle and life view, organisational pressures, planning and the role of support that were identified in our international review are transferrable to UK health care. However, the magnitude these factors determine an individual’s willingness to be screened remains unknown due to cross-cultural sensitivities.

Economic appraisal

As discussed the total cost of this PPI event was £6,055.80. For this amount we were able to contextualise findings from international research to a UK healthcare setting and inform a sample of 50 members of the public and carers about what a screening programme for dementia might involve; its benefits and drawbacks. While there were a number of positive outcomes from the event, there are also a number of difficulties that may impact on the ability to undertake PPI events in the future. The main issues include the use of resources, in particular staff time and costs. Timing was also an issue; it is important to ensure that both location and date is suitable for members of the general public. Recruitment was also a lengthy process as we were unsure how representative the group would be, which groups were required and how many delegates there needed to be. In the future researchers and funders need to make appropriate allowance for the considerable costs of PPI; larger budgets for supportive care costs may be allocated in order to improve the response rate from people with dementia themselves. There also needs to be better information about the availability of re-imbursement for costs of alternative care provision.