Blog – Finding values in research and dementia

Research is about collecting and analysing evidence in an unbiased way, isn’t it? Surely therefore it’s values’ free. But in reality, what evidence you aim to collect, and how you aim to collect and analyse it, is likely to be influenced by values that relate to your understanding of a condition like dementia. Research can also contribute to an evidence base indicating effective care and treatment interventions, but compared to other major health conditions, developing this evidence base for dementia has been challenging. What do frontline practitioners do when the evidence base is limited in this way, and what role do values play?

This blog reflects on the interaction between values and evidence, not only in research, but in the lives of people with dementia and those who support them. The blog also invites readers to think about contributing (and subscribing) to a Journal where they can disseminate their work to dementia practitioners, regardless of the question about values.

Dementia, values and research

Dementia can easily be placed in different models of disease and disability, including biomedical and biopsychosocial disease models, or the social model of disability. The models are not necessarily incompatible, but are based on quite different values. These values influence what one focuses research on, and to some extent, how one does the research as well. Crudely put, biomedical and biopsychosocial models locate dementia as a problem for the individual with the condition, and they are the focus for research and interventions, whether pharmacological or non-pharmacological. The social model of disability locates the problem of dementia primarily as a societal one. Rather than trying to ‘fix’ the individual, the social model emphasises how evidence and interventions should focus on changing attitudes, behaviours and barriers in wider society that exclude or discriminate against people with dementia.

Research methods involving things like brain scans or blood tests aren’t the main focus in the social model of disability (although that doesn’t mean research into cures and treatments shouldn’t continue). The evidence base for the social model of disability is also more limited. Research that might demonstrate ways of changing community or population-wide social behaviours is difficult to do in terms of methodology, resources and providing evidence of effect or causation.

Yet the social model of disability has been very influential, partly as a result of activism by disability rights campaigners, particularly against institutional forms of care such as the old asylums. Legislation such as the UK’s Equality Act 2010 are based on the social model of disability, and it has led to very practical changes such as wheelchair access. But it was political campaigning driven by values rather than research evidence which led to these changes in law and practice.

So, although good research should be impartial and free from bias, decisions about research questions and topics may well reflect the values of researchers and research teams. Qualitative research is sometimes unfavourably compared with quantitative research because systematic, impartial analysis of interviews and focus groups, for example, is seen to be harder to do than that involving numerical data sets collected through laboratory testing. The latter can also be seen to be more reliable because sample sizes tend to be much bigger than with the former.

Yet the publication of the book Doctored, in 2025, with the subtitle of Fraud, Arrogance and Tragedy in the Quest to Cure Alzheimer’s, is a reminder that ‘hard science’ dementia research isn’t necessarily immune to dubious, if not devious values motivating some people working in the field. Written by a well-respected, investigative journalist from Science magazine, Charles Piller, the book tells the story of a much-cited 2006 research paper identifying how a sub-type of amyloid led to memory impairments associated with Alzheimer’s disease. The paper was subsequently retracted, as have others based around the same findings, after it was suggested that key images on which the research was based might have been Photoshopped. However, the retraction took place after millions had already been spent on research based on the evidence the paper cited.

I’m a social researcher and profess no expertise in biomedical science, though somewhat ironically, in 2025 I successfully completed my PhD, based at the Geller Institute for Ageing and Memory which is part of the University of West London’s School of Medicine and Biosciences. Values and dementia were the focus of my PhD, although I’m confident that the values I based it on were not the same as those identified by Charles Piller.

Evidence-based frameworks and values-based frameworks

Biomedical and pharmacological research into dementia, which tends to use quantitative methods, absorbs a much bigger proportion of research funding than more psychosocial and qualitative research into the condition. This is partly because of the complexities around implementing and measuring the impact of psychosocial interventions on a large scale. As I’ve already said, it’s also because qualitative research isn’t always considered to have the same status, in terms of significance for evidence-based medicine / practice (EBM / EBP), as studies involving quantitative methods. For example, the term “robust” is usually twinned with the phrase “gold standard” to describe high quality research, but are usually applied to research involving large, double blind, quantitative, randomised controlled trials involving pharmacological treatments.

Dr Toby Williamson

Author

Dr Toby Williamson is Editor of the Journal of Dementia Care and an independent health and social care consultant. He has over 30 years’ experience in adult and older people’s mental health, dementia and mental capacity, with a particular interest in values, rights, lived experience and inclusion. He is a published author and co authored The Dementia Manifesto.

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