Public opinion on primary prevention of dementia, multiple sclerosis and Parkinson’s disease

Abstract

This is a policy briefing produced by the NIHR Dementia and Neurodegeneration Policy Research Unit at Queen Mary University of London (DeNPRU-QM). Summary Neurodegenerative diseases such as dementia, multiple sclerosis and Parkinson’s disease are amongst the conditions most feared by the public. This fear is often compounded by a sense of fatalism; that they are unpreventable and untreatable. The past decades have seen a growing interest in the prevention of mortality and harms associated with illnesses like cancers and heart disease by individuals modifying lifestyle factors: for example, stopping smoking, increasing exercise and improving diet. More recently, increasing attention has been paid to the possibility that some risk factors for neurodegenerative diseases may be modifiable and so behaviour change might decrease an individual’s risk of developing them (primary prevention). For neurodegenerative disease the evidence base for primary prevention is best developed for dementia. Initiatives such as the brain health check-in produced by Alzheimer’s Research UK (ARUK) — an online tool for people to check their risk factors for dementia and get advice about modification has been accessed by over340,000 people (1). There are also signals for the benefit of risk reduction in other neurodegenerative diseases. Behaviour change that reduces risk and which potentially prevents or delays the onset of disease can be empowering at an individual level. It also provides health systems and government with targets for public health interventions to improve population health and prevent disease (2,3). This paper presents findings from a public opinion survey of a representative sample of over 1,700 people in England, commissioned by DENPRU-QM, the National Institute of Health and Social Care Research’s Policy Research Unit for Dementia and Neurodegeneration at Queen Mary University of London. It describes their: (i) awareness of three of the most common neurodegenerative diseases: dementia, multiple sclerosis and Parkinson’s disease; (ii) opinions as to whether these diseases can be stopped before they start; (iii) awareness of primary preventive actions; and (iv) interest in taking part in primary prevention research. The results have the potential to inform health, care and wider policies encompassing primary prevention, and targeted communication strategies and interventions to raise awareness of preventive actions as part of public health campaigns.