The central finding from this study is the continuing uncertainty within clinical, scientific and public understandings of dementia, associated conditions and diagnoses. Scientific uncertainties are highlighted by competing and contrasting biological theories used to explain the causes and development of dementia and disagreement and controversy between the proponents of these different theories. Clinical uncertainties are reflected in the diagnostic and prognostic criteria and treatment protocols used in different clinical settings within different health care systems by different clinical specialities. Public uncertainties remain about the relationship between dementia and normal cognitive ageing. These different understandings are not fixed, they are dynamic and interactive such that as scientific knowledge changes or different biological understandings are accepted within the scientific community so these understandings are translated into clinical practice and responded to by the wider public. Equally public understandings of dementia and cognitive impairment influence the way that science is conceived and clinical practice undertaken. The study found that this was particularly evident in the case of MCI (mild cognitive impairment). For biomedical scientists MCI is a puzzle requiring further research. For clinicians it represented a way to work with patients presenting with early memory complaints. While for patients’ advocacy groups it was a way to communicate the message that dementia is a progressive disease that starts earlier than clinical diagnoses.
A second key finding of the study was the influence of commercial interests in the generation of biomedical knowledge, clinical practice and patient behaviour. Our analysis shows how the official labeling of MCI as a condition that preceded dementia by the regulatory agencies was pivotal in opening a potential new market for pharmaceutical agents. A number of the experts interviewed in the study expressed concern about the role of pharmaceutical and biotechnology companies in sponsoring research and the influence this had on the fixing of MCI as a treatable condition. Internet marketing, direct advertisements to the public and increasing fears and concerns about memory impairment represent a considerable potential for anti-dementia drugs. For some respondents MCI highlighted a negative trend towards a consumer driven health care market, which would undermine the ‘collectivist’ so called European social model that pooled health risks and responded equitably to health care needs within the context of scarce resources.
A third important finding was the changing use of the diagnoses of MCI in clinical practice throughout the course of the study. For some clinicians MCI is a useful formal diagnosis for discussing with patients. Giving a diagnosis is felt to respond to the patient’s need for a label and it helps patients plan for the future. In some health care contexts the provision of a formal diagnosis is essential for patient reimbursement of health care costs. For other clinicians MCI is not used as a formal diagnosis and adds nothing to the clinical understanding of mild cognitive impairments and dementia. The study found that different uses of MCI reflect the organisation of health care systems, for example between the consumer and market oriented system found in the USA and the more collectivist systems in western Europe and Canada. The use of MCI in clinical practice was also found to reflect the evidence-based culture in some countries. For example in the UK the use of guidelines and protocols throughout the health care system is coupled with clinicians expecting a higher level of scientific validation before changing their clinical practice than colleagues in the USA.
A fourth significant finding concerns the ways that scientific knowledge about cognitive impairment influences and is influenced by lay knowledge and understandings of cognitive impairment and dementia. Important players in this process are not just the bioscience community of basic scientists and clinicians but the caregivers of people with dementia and their international advocacy organisations. Our study highlights the tension between the demand of younger generations to develop therapies that prevent the diseases associated with cognitive impairment and the needs of people who already have dementia and those close to developing it. We also found a different approach to risk with advocacy organisations arguing for greater risk taking than traditional regulatory authorities in the uptake of new therapies for cognitive impairment and dementia. Finally this study was innovative in attempting to involve different users of the research in the interpretation of the study findings. This was done through workshops with older people, advocates of older people, informal carers, clinicians, dementia researchers and social scientists. Our aim was to engage participants with some of the data from the study with the purpose of widening the potential interpretation of our results. The participants concluded that MCI was of limited utility for clinicians and older people and that there was an important role for existing carers in formulating research and policy on early diagnosis and prevention of cognitive impairment. Participants also highlighted the dangers of propagating ageist attitudes through awareness campaigns about the risks associated with dementia and memory loss.