CLAHRC East of England study of population screening for dementia
Our findings suggest that screening for dementia raises complex issues around preference and choice for clinicians and the public; it is unclear what specific factors promote or reduce screening acceptance the most.
Evidence suggests that population screening for dementia may not be acceptable to either the general public or health care professionals, and highlights where focused efforts are needed to gain insights into specific screening issues. However, the published literature on attitudes towards population screening for dementia is diverse and fragmented and therefore it is difficult to draw clear conclusions. The quality of evidence is also low, and there are few large-scale studies that have been undertaken.
The conclusion of the study was to recommend that policy makers be cautious about the adoption of population screening for dementia without evidence and careful evaluation of benefits and risks.
In 2014 the UK National Screening Committee put out a report on dementia screening for consultation. The research team provided comments on the acceptability of such a programme based on the findings of the systematic review. In January 2015 the NSC maintained its position that systematic population screening programme for dementia was not recommended.
Publications:
- Martin et al. 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
- Martin S. et al. Exploring attitudes and preferences for dementia screening in Britain: contributions from carers and the general public. BMC Geriatrics. 2015; 15:110. DOI 10.1186/s12877-015-0100-6
- Download the CLAHRC bite of this piece of work.
Study background:
As the UK population becomes older the risk of developing dementia increases; evidence suggests that the prevalence of dementia in the UK is around 670,000 (6•5%). The Department of Health estimates that 45% of patients who might meet the criteria for dementia do not receive a formal diagnosis or receive it too late to be clinically useful. Systematic population-level screening (a process of identifying a condition amongst a population of apparently healthy individuals) has been suggested as a possible process to enable early detection of dementia in people who may be at increased risk. Population screening differs from clinical recognition of symptoms in that it offers routine testing, even when the patients, their caregivers or clinicians, have reported no symptoms or signs. Yet the potential benefits, harms or acceptability of such a large-scale intervention are not well understood. The systematic review of the scientific literature we conducted is the first to examine the attitudes and preferences of the general public, health care professionals, people with dementia and their carers towards population screening for dementia.
The approach used in this study is seen as the gold standard and best practice for comprehensively searching the international literature and then combining evidence from a number of different sources. A search of fifteen academic and health service bibliographic databases was conducted (up to 12 July 2012; with no language restriction) using terms related to dementia, screening, and attitudes and preferences; genetic screening and biomarkers were excluded. All study designs were included except opinion-based papers.
Our findings suggest that screening for dementia raises complex issues around preference and choice for clinicians and the public, and it is unclear what specific factors promote or reduce screening acceptance the most. Evidence suggests that population screening for dementia may not be acceptable to either the general public or health care professionals, and highlights where focused efforts are needed to gain insights into specific screening issues. However, the published literature on attitudes towards population screening for dementia is diverse and fragmented and therefore it is difficult to draw clear conclusions from the data. The quality of evidence is also low, and there are few large-scale studies that have been undertaken. It was therefore recommended that policy makers be cautious about the adoption of population screening for dementia without evidence and careful evaluation of benefits and risks.
In 2014 the UK National Screening Committee (NSC) put out a report on dementia screening for consultation. The research team provided comments on the acceptability of such a programme based on the findings of the systematic review. In January 2015 the NSC maintained its position that systematic population screening programme for dementia was not recommended. As the NSC is committed to the three-year policy review cycle it is expected that our published systematic review will also be incorporated into the next draft guidelines in 2017 thereby impacting on clinical guidance and service delivery. The NCS wrote “The responses confirmed the conclusions of the review. The Cambridge Institute of Public Health made a number of suggestions regarding amendments to the detail of the review. These have been considered by the reviewer and accommodated where the evidence allows”.
As an extension of this work the local CCG requested that we examine the suitability of the GPCog in clinical practice. The research team gathered evidence and a short report was prepared. Findings were then used in discussions, which subsequently informed commissioning decisions with our CCG colleagues. Through this engagement we impacted on clinical practice in the local area.
By providing reliable and user-focused evidence to inform practice, policy and research with regard to the effects, acceptability and added-value of dementia screening, this project contributed to concrete improvements in dementia care and furthered our understanding of how to improve early detection of dementia in the community, irrespective of the extent to which the benefits of dementia screening are established.
