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Research participants as collaborators: Background, experience and policies from the PREVENT Dementia and EPAD programmes

Sarah Gregory, Katie Wells, Kate Forysth, Cate Latto, Helen Szyra, Stina Saunders, Craig W Ritchie, Richard Milne
Dementia Journal. 2018
10.1177/1471301218789307

Perspectives on Communicating Biomarker-Based Assessments of Alzheimer’s Disease to Cognitively Healthy Individuals.

Milne R, Bunnik E, Diaz A, Richard E, Badger S, Gove D, Georges J, Fauria K, Molinuevo JL, Wells K, Ritchie C.
Journal of Alzheimer’s Disease. 2018
10.3233/JAD-170813

PREVENT participants took part in organised group discussions around the benefits, harms and rights of an individual finding out information from biological measurements that may inform their personal risk of Alzheimer’s disease.

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Research into Alzheimer’s disease is increasingly focusing on measuring biological markers in the blood, brain and spinal fluid that may reflect early underlying changes in brain health, so called biomarkers. With the discovery and development of biomarkers that may inform an individual’s level of risk for Alzheimer’s disease comes important new ethical considerations. Whilst the accuracy of these biomarkers still need much refinement, weighing up the harms, benefits and rights of risk disclosure to healthy adults will also require much careful consideration before implementing guidelines into care. With the increasing use of such biomarkers in research however, discussions of how best to communicate the value of these results have come to the fore. Central to the decisions of how to manage these discussions has to be the view of patients and research participants.

Focus groups featuring PREVENT participants as well as people living with dementia were held to establish the attitudes and desires of those individuals for who disclosure of such risk information is most pertinent. This publication summarises the opinions voiced in those group discussions around areas such as how best to clearly disclose information and the type of support that should be made available after learning personalised results.[/read]

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

Milne R, Diaz A, Badger S, Bunnik E, Fauria K, Wells K.
Sociology of health & illness. 2017.
10.1111/1467-9566.12731

Focus groups were held with PREVENT participants to develop discussions around disclosure of dementia risk.

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As research into novel treatments for dementia shifts towards earlier intervention and greater understanding of risk factors in a younger population, this generates important new issues of how best to manage risk disclosure. What are the implications of an individual learning their dementia risk? How should this best be communicated? And how might this impact on future life decisions?

To explore these types of questions researchers held focus groups with PREVENT participants to gather opinion on the consequences of these new topics. The discussions centred around the groups expectations on discovering test results that may have implications for risk of future dementia. The three key areas under discussion were; ‘Living At Risk’ – taking proactive steps to reduce risk, ‘Living With Risk’ – maximising cognitive health and accessing healthcare services and ‘Living Beyond Risk’ – planning for later life and adjustment to symptoms.[/read]

The PREVENT research programme–a novel research programme to identify and manage midlife risk for dementia: the conceptual framework.

Ritchie CW, Wells K, Ritchie K.
International Review of Psychiatry. 2013
10.3109/09540261.2013.869195

This article outlines the vision of the PREVENT study and how, through in depth study of people in their mid-life, PREVENT can generate novel evidence to inform future interventional trials and improve future care.

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Advances in research have helped form our current understanding that the earliest brain changes relating to Alzheimer’s disease occur many years before the emergence of any symptoms. This paper highlights the unmet need for measurable markers that can inform us of an individual’s risk profile for later life dementia.

The authors provide a detailed breakdown of the main aims of the PREVENT programme and introduce the methods used to collect the wide range of information from volunteers. They speculate how knowledge gained from PREVENT and other similar studies can shape future prevention strategies to delay or halt the progression of Alzheimer’s disease.[/read]

The PREVENT study: a prospective cohort study to identify mid-life biomarkers of late-onset Alzheimer’s disease.

Ritchie CW, Ritchie K.

BMJ open. 2012

10.1136/bmjopen-2012-001893

This publication describes the importance of developing a study to investigate markers present in midlife that could identify people at increased risk for later life dementia.

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As research aiming to intervene in the onset or progression of Alzheimer’s disease shifts ever earlier in the life-course of the disease this brings new challenges. Firstly, how to identify those at highest risk who may benefit most from interventions to prevent Alzheimer’s. Secondly, as studies begin to test drugs or other interventions in individuals who do not show any observable symptoms, what changes in the body or brain can be measured to indicate whether or not an intervention is working.
Identifying accurate markers that correlate with brain health can help tackle these key issues. Here the authors outline the rationale and design of the PREVENT dementia research programme. They describe how, through using detailed biological and psychological measures, this study aims to identify these very earliest markers of changes in brain health.[/read]