Attitudes and preferences towards screening for dementia: a systematic review of the literature

Abstract

BackgroundPopulation screening might provide a mechanism to enable early detection of dementia. Yet the potential benefits, harms or acceptability of such a large-scale intervention are not well understood. This research aims to examine the attitudes and preferences of the general public, health care professionals, people with dementia and their carers towards population screening for dementia.MethodsA systematic review of the international literature was undertaken. A search of fifteen bibliographic databases was conducted (up to 12 July 2012; no language restriction) using terms related to dementia, screening, specific screening tools, case finding, and attitudes and preferences; genetic screening and biomarkers were excluded. All study designs were included except opinion-based papers. Included papers were doubly quality assessed and thematically analysed using NVivo.Results29,910 papers were identified of which 29 met the inclusion criteria. We identified seventeen themes relating to the 3 phases of the screening process (pre-, in- and post-screen) – none emerged as more of a facilitator than a barrier to the acceptance of dementia screening. Seven themes emerged in relation to the patient, carer and general population: existing health state; lifestyle and life view; awareness of dementia; role of clinician; communication; benefit; and role of the family. Ten themes emerged in relation to the clinician and healthcare professional: patient’s existing health and comorbidities; awareness of dementia; confidence; duration of patient contact; suitability of screening tool; cost; disclosure; time; treatment and prognosis; and stigma.ConclusionsAs for all screening programmes, 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. Overall, the level of evidence is low, few large scale studies have been undertaken and none were conducted in representative samples, all affecting the generalizability of identified themes across healthcare contexts. Nevertheless, our findings suggest that population screening for dementia may not be acceptable to either the general public or health care professionals, and highlight where focused efforts are needed to gain insights into dementia specific issues.Electronic supplementary materialThe online version of this article (doi:10.1186/s12877-015-0064-6) contains supplementary material, which is available to authorized users.

Is there an association between help‐seeking for early detection of Alzheimer's disease and illness representations of this disease among the lay public?

“…This might be because GPs are the health professionals with whom the vast majority of the elderly population has a regular and long‐term contact (Miele et al, ), and therefore they might be much more comfortable seeking help from them with the justification that they are doing so as part of the routine health examinations. Despite this preference, it should be noted that till today there is no evidence supporting population screening for dementia (Martin et al, ). Thus, cognitive function should continue to be assessed by GPs only when cognitive decline or impairment is suspected, reported by patient or others, or where directly observed by the clinician, and not as a routine practice when none of these apply.…”

Systematic Review Investigating Multi-disciplinary Team Approaches to Screening and Early Diagnosis of Dementia in Primary Care – What are the Positive and Negative Effects and Who Should Deliver It?

“…Nine studies were identified which specifically explored 'who' should deliver screening programmes for people with dementia [12,17,25,26,27,28,29,30,31].…”

“…Martin et al [31] uniquely, explored the issues around dementia screening with patients and the public. In their interviews patients largely felt that clinicians should be qualified to undertake the assessment and therefore training was critically important.…”

“…They suggested that this may make the acceptance of the result easier if there is trust and a strong rapport between the patient and GP. In contrast, others argued that this shouldn't be the GP as they have insufficient time to do such an important assessment and may not be adequately skilled [31].…”

“…Increased planning: Seven papers [13,31,35,36,37,38,39] describe the importance of planning health and social care provision before cognitive impairment has a significant impact on an individual's health, well-being and independence. It is proposed that this allows patients and families to be introduced early to agencies, which can improve quality of life and reduce risk of crises [37,38].…”