With fewer than half of people living with dementia currently receiving a diagnosis, services still have a long way to go to ensure that as many people as possible receive a formal, speedy diagnosis, in order to involve them in treatment and support options.
Population screening on apparently healthy individuals has been suggested to be a possible mechanism whereby dementia can be detected early in those at risk. In January of this year, the UK National Screening Committee upheld its recommendation against screening everyone aged 65 and over for dementia (http://www.screening.nhs.uk/dementia). This is at least in part due to the complexity of the diagnosis and inaccurate screening tools leading to a high risk of both false positive and negative diagnoses. There was also discussion over whether there was enough evidence for the benefits of treatment over the potential risk of harm by screening.
The Committee noted that if screening was to be used widely, the tests would have to be ‘acceptable’ to the population. Therefore, in the current systematic review by Martin et al (2015), the primary outcome was to look at perceptions, views, attitudes and experiences of patients, the general public, carers and professionals to screening for dementia.
Martin and colleagues conducted an electronic search using terms related to dementia, screening, and attitudes and preferences. It covered all types of dementia, had no time or language limits, included all study designs, and was applied to 15 databases. Genetic screening papers were excluded.
Overall, 29 studies were included in the review. These were predominantly surveys (18) but included a number of intervention and focus groups.
Attitudes and preferences
7 themes were identified in relation to patients, carers and the general population:
- Existing health state: perhaps unsurprisingly, one paper indicated that being healthier was associated with less willingness for screening, and one that having some cognitive difficulty was associated with more willingness for screening.
- Lifestyle and life view: four papers noted evidence of ‘stigma’ attached to screening for memory problems. However, five suggested some respondents to be pleased to have their memory evaluated.
- Awareness of dementia: there were issues highlighted in three papers around a low level of awareness post-test regarding the screen and the reasons for, or outcomes of the screen.
- Role of clinician: in two studies, a theme emerged that highlighted that the relationship with the clinician is key to the acceptance of screening and any potential diagnoses.
- Communication: one paper indicated that participants struggle to recollect or understand the results they receive post-testing and feel stressed or confused.
- Benefit: six papers highlighted that caregivers and the general public believe there are benefits to diagnosis in terms of treatment or financial support.
- Role of family: one of the strongest findings was that the family play an important role in supporting access and prompting screening.
10 themes were identified in relation to healthcare professional (HCPs) attitudes
- Patient’s existing health and co-morbidities: four studies showed that professionals consider physical illness to be of high priority and report focusing on other more ‘treatable’ illnesses in individuals who they feel are too unwell to proceed with screening.
- Awareness of dementia: two studies highlighted that symptom recognition, attitude and professional constraints in practice tend to determine whether physicians conduct a full assessment.
- Acceptability: four studies found that HCPs are often undecided or negative when asked if cognitive screening would lead to better outcomes. Two studies found acceptability levels for screening to be high in staff members.
- Duration of patient contact: mixed findings indicated that some clinicians were apprehensive to screen those with whom they had a long relationship, but also about screening those they had no relationship with.
- Screening tool: three studies highlighted a lack of acceptable and accurate screening tools, one of which said screening inaccuracy is the most important reason for not undertaking routine screening.
- Cost: there are practical concerns and costs of integrating screening into practice.
- Disclosure: a lack of confidence in communicating the outcome and a need for ‘timely’ disclosure (when functional needs require) was highlighted, because of a lack of knowledge with regards to prognosis, poor treatment options, and lack of care pathways.
- Time: a lack of time to screen was highlighted in three studies.
- Treatment and prognosis: there appears to be a perception that nothing can be done to help the person (four studies) given limited effectiveness of current treatments.
- Stigma: clinicians in three studies recognised the stigma associated with dementia, due to lack of treatment to offer and lack of awareness in the general population.
Strengths and limitations
- The extensive search and inclusion of multiple data sources means that it is likely that the majority of published research will have been captured here
- However, there were a relatively small number of papers and a lack of large-scale mixed-methods studies available, creating limitations on the generalisability of the findings
- Interestingly, there were also no studies of the general population’s attitudes in the UK so it is harder to infer what this might mean locally where there has been a movement towards increasing public awareness via projects such as the Dementia Friends initiative.
The authors concluded:
Attitudes and preferences are complex and multi-factorial and our findings suggest that population screening for dementia may be acceptable neither to the general public nor to health care professionals.
They also noted:
Policy makers should be cautious about the adoption of population screening for dementia without evidence and careful evaluation of benefits or risks.
This systematic review highlights the challenges currently facing services: Everyone with dementia has the right to know about it, and to do something about it, but this must be balanced with sensitive clinical judgment and diagnostic processes.
Evidently there are areas where efforts need to be focused in order to improve timely detection of dementia. For patients, this review highlights the importance of awareness and communication, and the need for education and post-screening feedback. Working within a Memory Service, I have found the process of providing post-assessment feedback to be invaluable to patients, so that they not only feel ‘assessed’ but also listened to, well-informed and supported with regards to the outcome. The earlier in the dementia process this can be provided, the more beneficial it is likely to be to.
From a professional perspective, a lack of confidence in the system and the treatment options seems to be the challenge to overcome. Perhaps improving access to specialist Memory Services might bridge the gap and support primary HCPs to be proactive when it comes to diagnosis. As a clinician, I feel it is important to recognise not only ‘treatment’ options in terms of pharmacological management, but also in increasing access to psychological support and practical advice for both patient and carer. Additionally, regular screening may reduce the risk of escalating crisis situations which place extra pressure and cost back onto the same HCPs who have expressed feeling apprehensive with regards to screening, diagnosing and treating these very patients.
Martin S. et al (2015) Attitudes and preferences towards screening for dementia: a systematic review of the literature. BMC Geriatrics 2015, 15:66 doi:10.1186/s12877-015-0064-6