At, with and beyond risk: expectations of living with the possibility of future dementia

Abstract

Biomedical research aimed at the development of therapies for chronic and late-onset conditions increasingly concentrates on the early treatment of symptom-less disease. This broad trend is evidenced in prominent shifts in contemporary dementia research. Revised diagnostic criteria and new approaches to clinical trials propose a focus on earlier stages of disease and prompt concerns about the implications of communicating test results associated with the risk of developing dementia when no effective treatments are available. This article examines expectations of the implications of learning test results related to dementia risk, based on focus group research conducted in the UK and Spain. It points to the extended social and temporal aspects of the dementia risk experience. Three key dimensions of this risk experience are elaborated: living 'at risk', represented in efforts to reduce risk and plan for the future; 'with risk', through vigilance towards cognitive health and earlier or prolonged contact with healthcare services; and finally, 'beyond risk' through a cessation of the self in its current social, legal and financial form. A virtual abstract of this paper can be viewed at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA.

What matters to people with memory problems, healthy volunteers and health and social care professionals in the context of developing treatment to prevent Alzheimer's dementia? A qualitative study

“…Our results show that previous experiences of having known or cared for someone with dementia shaped views of the significance of living with the possibility of developing dementia in the future. This is in keeping with previous studies . Connected with this was the view that we are defined by our minds: dementia was seen as taking away the mind and, by implication, the person.…”

“…Insights from some of the people with memory problems show how they felt like “I'm not there” when family members denied them the opportunity to continue with everyday tasks such as doing the ironing. Milne et al (p. 982) describe this as being “corporeally present but cognitively absent” and it underlines how overlooking embodied aspects of selfhood leads to exclusion and suffering of people with dementia as they become seen as non‐persons. This may shape views of risk decisions about developing dementia in powerful ways.…”

Alzheimer’s disease and the development of a post-genomic science

“…This work recalls debates about the social, psychological and ethical implications of prediction and risk familiar from discussions of genetic testing (Arribas-Ayllon 2011), and are of growing importance given the increasing number of people in "asymptomatic" populations who are starting to learn information about Alzheimer's disease risk. However, in this context, they also intersect with the specific context of dementia, and the fears, anxiety and stigma associated with cognitive decline (Latimer 2018;Milne et al 2018).…”

Longitudinal analysis of risk factors for dementia based on Mild Cognitive Impairment Screen results and questionnaire responses from healthy Japanese individuals registered in an online database

“…In Europe, multiple pharmaceutical companies have launched initiatives for secondary prevention of AD through early detection and treatment, called the European Prevention of Alzheimer's Dementia Consortium [3] . Presently, biomedical studies aiming to develop therapeutic strategies for chronic and late-onset diseases focus on early stage interventions [4] . In preventive medicine, the disease course is divided into predisease, early disease, and late disease stages depending on the progression, and the measures taken at these stages are called primary, secondary, and tertiary prevention, respectively (Institute for Work and Health, 2018, https://www.iwh.on.ca/what-researchers-mean-by/primary-secondary-and-tertiary-prevention ).…”