What is it about?

Dementia poses important medical and societal challenges and of all health risks people face in life, dementia is one of the most feared. Recent research indicates that up to about 40% of all cases of dementia might be preventable. A series of environmental, social and medical risk-factors have been identified and that should be targeted from midlife onwards when people are still cognitively healthy. At first glance, this seems not merely advisable, but even imperative. However, these new developments trigger a series of new ethical questions and concerns which have hardly been addressed to date. Pro-active ethical reflection, however, is crucial to ensure that the interests and well-being of those affected, ultimately all of us, are adequately respected. This is the goal of the current contribution. Against the background of a concrete case in primary dementia prevention, it provides a systematic overview of the current ethical literature and sketches an ethical research agenda. First, possible benefits of increased well-being must be balanced with the burdens of being engaged in particularly long-term interventions for which it is unclear whether they will ever pay out on a personal level. Second, while knowledge about one’s options to maintain brain health might empower people, it might also undermine autonomy, put high social pressure on people, medicalize healthy adults, and stigmatize those who still develop dementia. Third, while synergistic effects might occur, the ideals of dementia prevention might also conflict with other health and non-health related values people hold in life

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Why is it important?

Important public and population health gains appear achievable if universal prevention of dementia is successful and early dementia prevention by means of lifestyle changes and medical risk management appears to be not merely advisable, but even imperative. However, regardless of the specific interventions invoked, such preventive measures are likely to have two central features: i) they will target large groups of the population rather than selected individuals such as patients or individuals at-risk; and ii) they will aim at relatively young populations such as people during midlife or even younger. These new foci trigger a series of new ethical questions and concerns that may have an impact on how we design such health initiatives. ... It is of great importance to identify ethical questions like these in order to ensure that the interests and well-being of those affected, ultimately all of us, are adequately respected. Now is the time to do so, as primary prevention interventions are upcoming, early pilots are being implemented and (inter)national roll-outs are on the research and public health agenda’s. Profound ethical reflection that accompanies these efforts can contribute to the further development of upcoming interventions in ways that are not only scientifically effective but also desirable from an ethical and social point of view.

Perspectives

While currently early dementia prevention is winning ground, it is of great importance to think through its ethical and social implications and ensure that research, campaigns and interventions are set up in a way that are also desirable from an ethical point of view as well as socially sustainable. We hope that our contribution will be the start of this debate on what it means to do ethically good primary dementia prevention and how to achieve that in real world settings.

Dorothee Horstkötter
Maastricht University School of Mental Health and Neuroscience

Read the Original

This page is a summary of: Primary Prevention of Dementia: An Ethical Review, Journal of Alzheimer s Disease, January 2021, IOS Press,
DOI: 10.3233/jad-201104.
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