Search results
The database searches generated 20,678 titles (Fig. 1), which were then screened for inclusion. Given the broad use of the terms screening and diagnostic, we carefully assessed 720 abstracts and the full text of 185 papers. In addition, three additional papers were identified from hand and grey literature searches. We included 29 studies looking at attitudes and/or preferences towards screening for dementia. The reasons for exclusion, at full paper, were: not about screening (n = 146), including 15 reviews that did not examine dementia screening, not primary research (n = 11); unobtainable (n = 2). Three non-English language papers were translated but excluded at full paper sift [18–20].
Sample characteristics
Nine papers involved patients or people with dementia in their research. A total of 2,575 patients or people with dementia were included in this review. Two studies involved a total of 331 carers in their research. Study sizes ranged from 81 to 250. A number of studies reported unclear sample sizes. There were no studies based on samples representative of the general population; however, five studies were based in the community and had participants recruited from the general public. In total 1,977 people from the general public were included in this review (study sizes ranged from 125 to 1,039 people).
Health care professionals constituted the largest group of participants in the identified studies. Fifteen studies included a total of 5,132 clinicians or health care practitioners. One paper did not provide a clear description of the study sample. Number of participants ranged from four to 1,473. General practice, including both general practitioners and practice nurses was the most frequent research setting (11 studies). Settings for the remaining studies with healthcare professionals included: community nursing, geriatric specialists, community mental health, emergency department, outpatient clinic and university – one in each.
Study characteristics
Studies took place in Australia (n = 3), Belgium (n = 1), Canada (n = 1), Ireland (n = 1), Norway (n = 1), UK (n = 5) and USA (n = 15). One study had both UK and USA sites and two studies were based across five European countries (France, Germany, Italy, Spain and the UK). The oldest included study was published in 1994, the most recent published in 2012. In most cases the ‘test’ was hypothetical, or described in very general terms (i.e. a screening test). No studies were included which examined the attitudes and preferences, or acceptability of a specific existing tool. There were a range of quality ratings; 18 studies were rated as medium quality and 11 were rated as high (Table 1). Full quality assessment scores are presented online in the supplementary evidence (Additional file 7).
Risk of bias
Due to the heterogeneity of included studies the pooling of results is inappropriate for this review. Given that qualitative data were extracted no test to assess homogeneity (e.g. chi-squared test for homogeneity, I2, random effects model, Egger regression test, Hedges-Olken) is appropriate. Sources of financial support for included studies can be found on line in supplementary material (Additional file 7).
Attitudes and preferences
Three stages of the screening process were identified: a) the pre-screen period, b) the in-screen, and c) the post-screen period. At each stage of the screening process a number of factors impact on an individuals’ decision to screen or be screened, and are relevant to the acceptability of population-level screening for dementia (Fig. 2). Seven key themes emerged from studies with the patient, carer and general population: 1) existing health state; 2) lifestyle and life view; 3) awareness of dementia; 4) role of clinician; 5) communication; 6) benefit. Ten key themes emerged in relation to the clinician and healthcare professional: 1) patient’s existing health and comorbidities; 2) awareness of dementia; 3) acceptability; 4) duration of patient contact; 5) screening tool; 6) cost; 7) disclosure; 8) time; 9) treatment and prognosis; 10) stigma. These themes emerged repeatedly in the peer-reviewed literature and are discussed below.
Themes in relation to the patient, carer and general population:
Existing health state
Survey data [21] found that being healthier (as indicated by taking fewer than three medications) was associated with less willingness to accept dementia screening and that having some type of cognitive difficulty was associated with more willingness to be screened for dementia. A qualitative study [22] also showed that a person’s existing health state and perceived susceptibility to illness may impact on the acceptability of screening for dementia and on ability to undergo screening tests, as exemplified in the following quote:
“It wasn’t that it couldn’t be done, but at my age… I got tired – this is a weariness I carry with me everywhere (and it kicks in every time) I’m exposed to something complicated.” [22]
Lifestyle and life view
The data on lifestyle and views of patients are predominantly derived from survey responses. Surveys consisted of validated scales and items designed by the research teams. No studies contained substantial qualitative components. While some data [23–27] suggest that some respondents have no concerns and are pleased to have their memory evaluated, other results [21] suggest that few people would agree to routine screening for memory problems for reasons such as stigma [28–30]. It is important to take note that no patient or carer mentioned the word stigma; this word was adopted by researchers in their attitudinal scales.
Awareness of dementia
There are issues around awareness and public education [31]. The quotations below illustrate that some individuals have a low level of awareness regarding the screening test. In these cases there have been some misunderstandings around both the reasons for a screen and the implications of test results [22, 31, 32]. While we are unable to say what proportion of individuals have not fully understood or poorly interpreted the screening test, it is the responsibility of health care professionals to raise the issue and ensure consent is given.
“It [the screening test] is probably to do a little bit of research on what we remember, and… if our heads are where they are supposed to be…” [22]
“…she tested my head, that’s what she did.” [22]
“I got the impression that I passed the test. Yes. Or you could say it was examination questions, right?” [22]
Role of clinician
This theme emerged from two studies, and as the quote below shows, a person’s acceptance of dementia may be influenced by the role of the clinician [32]; “It’s okay to be screened’cause then [the occupational therapist] gets to see what I really need help to do” [22]. A clinician needs to engage with the individual to outline what their role is, how they will conduct the test and what the outcome may be, essential preparatory work in order to manage patient experience and expectations.
Communication
In one study [22] a number of patients reported uncertainties around the test and some of these individuals were unable to recollect the screening was explained to them beforehand, or how the results were presented afterwards. While we cannot substantiate that poor communication on behalf of clinicians is responsible for levels of confusion, the patients’ were still reliant on their own interpretation of the screening test, its purpose and the potential outcome. The patients also reported screening to be strenuous or stressful, mostly due to a perceived pressure to perform well on the test.
“No, I wasn’t told. I don’t know.” [22]
“[I]f I was to guess (…) it has something to do with memory?” [22]
Benefit
Where data is available [22, 26, 28, 30, 33, 34] it seemed that caregivers and the general public believe there are a number of benefits to screening for dementia, including treatment and financial benefits. However, in one study [35] nearly half of the patients who screened positive for cognitive impairment refused a diagnostic evaluation.
“I’m over 50 with no children. I need to know how to be prepared.” [34]
“[they can] catch it before it’s too late.” [34]
Studies that reported the ability of families to plan and make arrangements are often cited but, little qualitative evidence was found to support this claim. Most evidence is derived from questionnaire responses.
Role of family
There was good evidence to suggest that the family plays an important role in decisions whether or not to undergo screening [24, 31, 32, 34, 36–39]. The influence of the family is dynamic and can include influencing decisions to consult health care professionals in primary or secondary care. The family may also act as a prompt, recognising that an individual may have issues related to the onset of the disease. The quote below is from the perspective of a primary care physician, discussing how important the family is to the patient when deciding whether or not to consult or undergo screening.
“I’d say in 90 % of the cases it’s the family [that brings the dementia to my attention].” [36]
Themes in relation to healthcare professionals:
Patient’s existing health and comorbidities
Four studies [30, 34, 36, 40] showed that in most cases the doctors felt that the individual was too ill to proceed with a full assessment or to use screening instruments. The clinicians tend to address other more easily treatable issues first rather than the dementia because they report making more impact.
“When we do see people for dementia, it is common that they have ten other medical problems. There’s usually something else going on - dementia or memory problems is right at the bottom of the list, in terms of things to address.” [34]
Awareness of dementia
Lack of awareness of dementia on the part of healthcare professionals was reported to be a barrier to recognising symptoms. Studies [36, 39] found that the primary barriers were symptom recognition, physician attitudes, and constraints in contemporary medical practice. It appears that whilst the presentation and recognition of symptoms do not impact on decisions to screen (individuals are asymptomatic at point of test) it is the attitudes, rather than knowledge, which may determine whether physicians conduct a full assessment.
Acceptability
Two studies [35, 41] found that acceptability levels for screening was high in staff members, conversely a number of studies [33, 39, 42, 43] asked clinicians and other HCPs and found that clinicians were undecided or negative when asked if cognitive screening in primary care would lead to better outcomes. In one study, female clinicians were more likely to have a positive attitude towards screening [44].
Duration of patient contact
Our findings suggest that clinicians may not feel confident about screening people with whom they have little or no relationship [36, 45]; conversely they also feel some apprehension towards screening patients with whom they have had a long relationship [34, 45]. The finer detail of why this may be the case was not presented in the literature, but there could be a number of possibilities including issues around lack of understanding of prognosis, poor treatment options, lack of transparent care pathways etc. The quotes below illustrate these points well:
“I know I’m guilty of it, and suspect the rest of us are too . . . which is that, with someone who’s been your patient for a while and, you haven’t done a Mini-Mental State Exam on them…” [45]
“Very often you know these patients very, very well and have seen them over many years … and maybe you don’t notice, because of your lack of memory … their lack of memory and then it’s really only when a crisis occurs… something happens that sort of makes everybody stand back and say ‘Oh my God, it’s really obvious’ and made it difficult for most to administer the MMSE (Mini Mental State Examination).” [45]
The screening tool
The lack of acceptable and accurate screening tools also provides a barrier to population screening for dementia for the general population [45–48]. In one study [48] both generalists and specialists reported that screening inaccuracy was the most important reason for not undertaking routine screening at age 65. When clinicians and health care professionals were asked about their preferences regarding tools, tests such as clock drawing [46] and the short Blessed [47] were identified.
“The MMSE is quite distressing… to do with a patient you know, I think it’s quite an invasive test… I think part of the problem is that the minute you start doing it, it’s…very direct.” [45]
Cost
There were a number of practicalities that made screening for dementia problematic, including the cost [38]. Cost concerns from clinicians were related to implementation, disruption to current working practices as well as costs of additional staff and/or infrastructure [38]. Costs concerns from patients included rising health and travel insurance and other benefits. Costs of direct care and financial implications of indirect care were also discussed.
Disclosure
Screening involves communicating the outcome to the patient so issues of diagnosis disclosure inevitably arise. The difficulties were perceived as closely connected with a clinician’s duration of contact with their patient, with particularly problematic implications around lack of prognosis, poor treatment options, a lack of transparent care pathways and the patient’s existing state of health [30, 43, 46]. Evidence suggests that clinicians believe interventions are “timely” when required in response to a patient’s functioning or cognition prompting them to present to medical attention, rather than an approach that encourages disclosure to all regardless of their existing needs [36, 37, 49]. Importantly, the identification of dementia was perceived as potentially harmful to some patients [37]. The following quotes illustrate the point:
“I’ve walked out of the room lots of times going ‘I think something’s going on here but not pushed it, because what am I going to do? What am I going to tell the family?’ Well, they’re functioning okay in the home, I think they’ve probably got early dementia, but is it going to change anything? No. Can I do anything about it? No. So, why get everybody all excited when we’ll just keep a close eye on it.” [36]
“The family doesn’t want to hear, the patient doesn't want to hear. The ‘gradual decline of forgetfulness’ is a much better description to the patient and the family.” [36]
Time
Lack of time to screen was a common theme that emerged in the literature [36, 41, 45]; however, in the single study [35] that examined the impact of a screening intervention on practice, none of the staff reported significant disruption to existing working practices.
Treatment and prognosis
Attitudinal barriers included the perception that nothing could be done for patients with dementia [34, 41, 49, 50] given the limited effectiveness of currently available treatments. It appears that for many clinicians, until there are effective treatments, there is little reason to assess patients for cognitive problems. A major finding [23] was the reluctance of clinicians to follow-up on a positive dementia screen. Clinicians often determined that the symptoms did not warrant a dementia work-up.
“Sounds like there’s some message coming from somewhere [that doctors should be more] aggressive with early diagnosis… If that’s the case that needs to be communicated with some really good reasons. To offset the ‘I don’t want to know, the family doesn’t want to know…’ There [needs to be] something that changes the prognosis.” [36]
Stigma
Some clinicians recognised the stigma associated with dementia and with Alzheimer’s Disease specifically. This finding may reflect the lack of effective available treatment options and the level of disease awareness in the population [30,36.38].
“I have the most trouble discussing with the patients and families. I have no problem about cancer or other fatal diseases, but Alzheimer’s disease has a huge stigma associated with it.” [36]
Differences between patients, public and clinician views
For patients, the key factors that impact on the acceptability of screening for dementia relate to the individual’s context such as their current health, lifestyle, life view and their knowledge of dementia. Where evidence does exist, patients have not been shown to consistently recollect either the screening test or the result, which raises ethical issues around consent and disclosure. Three themes – awareness, role of the clinician and communication – may potentially empower the patient to make informed choices which impact on their long-term health outcomes. For clinicians, a number of contextual issues (including current practice, poor prognosis, lack of treatment options, stigma and the duration of contact with the patient) and mechanisms (including the practicalities, awareness, confidence, accuracy of tools, cost, time, a patient’s existing state of health and issues around disclosure) appear to impact on acceptability and decisions to screen. Whilst the public are more concerned about what use a screening test will be to them immediately and in the short-term, clinicians have some paternalistic/protective concerns over the long-term impact of dementia screening. Awareness of dementia is important to patients, carers and health care practitioners.
