As a person living with a diagnosis of a rare young onset dementia and a retired (?!) activist engaged repeatedly in research, policy, and advocacy spaces, I argue that research which fails to achieve its stated aims is not simply ineffective—it constitutes a breach of disability rights as articulated in the United Nations Convention on the Rights of Persons with Disabilities (CRPD). When research claims ethical intent but produces no meaningful change, it undermines the very rights it purports to support.

The really curious thing about research, is the way many researchers consider what I believe to be failed research, as groundbreaking research, and even more weirdly, how they often discuss their legacy… For goodness sake, surely the funding provided should dictate real change. It should not be about individual legacies and careers.

The CRPD establishes disabled people as rights holders, not passive subjects of care or research. Article 4(3) requires States Parties to closely consult with and actively involve persons with disabilities in decision-making processes that affect them. Yet in much dementia research, involvement remains superficial. Lived experience is invited, recorded, and displayed, but rarely allowed to reshape research agendas, redistribute power, or influence outcomes. When research objectives are not met—particularly those promising impact, inclusion, or improvement—participation becomes extractive rather than rights-affirming.

Article 19 affirms the right to live independently and be included in the community, while Articles 25 and 26 emphasise the right to appropriate support, habilitation, and rehabilitation. Despite decades of research documenting unmet needs following a dementia diagnosis, post-diagnostic support remains fragmented, inaccessible, or absent. Research that repeatedly identifies problems without contributing to structural change functions as a mechanism of delay. This is not benign failure; it is the systematic postponement of rights realisation.

Article 8 obliges States to combat stereotypes, stigma, and harmful practices. However, research that relies on deficit-based framings or biomedical dominance—while claiming person-centred or participatory aims—often reinforces stigma rather than dismantling it. When such research enters policy and practice spaces, it legitimises symbolic initiatives that prioritise appearance over access, reassurance over rights, and visibility over justice.

The CRPD also demands accountability. Article 31 emphasises the collection of appropriate information to enable the formulation and implementation of policies that give effect to the Convention. Research that fails its own aims undermines this obligation by producing knowledge that cannot support effective policy action. Worse, it crowds out rights-based, co-designed research led by disabled people themselves.

For activists and advocates with lived/living experience of a diagnosius of dementia, repeated engagement in such research produces moral injury. Being asked to contribute personal narratives to studies that do not lead to change erodes trust, fuels exhaustion and burnout, and ultimately silences voices through withdrawal rather than exclusion.

In this context, research failure is not neutral.

It represents a failure to respect participation, dignity, and equality. Aligning research with the CRPD requires more than inclusive language; it requires accountability for outcomes, genuine power-sharing, and a commitment to producing knowledge that advances rights rather than managing dissent.

Without this, research risks becoming an institutional exercise that speaks about disabled people while failing to act with or for them. Research, and conference presentations often appear to be a career pathway, rather than evidence of successful research resulting in tangible change.

When Research Fails Its Aims: Harm, Waste, and Moral Injury in Dementia and Disability Research

Research is ethically justified on the assumption that it will generate knowledge capable of improving lives, informing policy, or advancing social justice. When research fails to achieve its stated aims and objectives, it is not merely inefficient; it risks becoming ethically harmful, epistemically corrosive, and socially unjust. In dementia and disability research, where participants are frequently positioned as vulnerable, such failure carries heightened moral and political consequences.

At a fundamental level, research that does not achieve its aims violates the ethical principle of social value. People with dementia and other disabled people routinely contribute experiential knowledge, emotional labour, and time to research with the expectation that their participation will lead to tangible change in policy, services, or societal attitudes. They [we] are all promised this, and it is most often the reason we give up our time and expertise and sign up to participate in any way.

When findings do not translate into action, participation risks becoming extractive rather than collaborative, reinforcing long-standing patterns of tokenism and epistemic injustice. Lived experience is “included” but not allowed to meaningfully disrupt dominant biomedical or institutional frameworks.

Methodological misalignment is a common contributor to such failure. Studies may claim participatory or person-centred aims while employing methods that marginalise experiential knowledge, privilege professional perspectives, or measure outcomes that are disconnected from the priorities of people living with dementia. In these cases, research may technically meet academic benchmarks while substantively failing its own objectives. The result is not neutral knowledge, but the reproduction of deficit-based narratives that position dementia primarily as loss, burden, or decline, rather than as a social and political condition shaped by systems, attitudes, and power.

The epistemic harms of failed research extend beyond individual studies. Poorly designed or conceptually limited research can enter policy and practice arenas, legitimising ineffective or even harmful interventions. In dementia research, this has contributed to the persistence of “dementia-friendly” initiatives that prioritise visibility and reassurance over rights, access, and structural change. When research does not critically interrogate its assumptions, it risks stabilising the very conditions it claims to challenge.

There are also significant opportunity costs. Research funding is finite, and investment in studies that fail to achieve their aims diverts resources away from co-designed, rights-based, and action-oriented research. For people with dementia, whose post-diagnostic support remains consistently inadequate, this represents not only wasted funding but delayed justice. The repeated production of research that documents problems without enabling solutions can itself become a mechanism of inertia.

For activists and advocates with lived experience, repeated exposure to such research failure contributes to moral injury. Moral injury arises when individuals witness or participate in systems that claim ethical intent but repeatedly fail to act in ways consistent with their stated values. Being asked to share personal narratives in research that does not lead to change can exacerbate exhaustion, cynicism, and withdrawal from engagement. In this way, research failure does not simply reflect a lack of impact; it actively undermines the sustainability of lived-experience leadership.

In summary, research that does not achieve its stated aims is not harmless.

In dementia and disability contexts, it can reproduce stigma, waste scarce resources, erode trust, and contribute to moral injury among those it claims to serve. Ethical research practice therefore requires more than methodological competence; it demands accountability for impact, alignment between aims and methods, and a genuine willingness to redistribute power. Without these commitments, research risks becoming an exercise in institutional self-legitimation and career building, rather than a vehicle for change.

My next few blogs will focus on some examples of what I see as failed advocacy and failed research, and the moral injury caused to people with dementia by such repeated failures.

Someone’s gotta say it…

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Bibliography

Alzheimer’s Disease International. (2019). World Alzheimer Report 2019: Attitudes to dementia. Alzheimer’s Disease International.

Alzheimer’s Disease International. (2024). World Alzheimer Report 2024: Global changes and attitudes to dementia. Alzheimer’s Disease International.

Fricker, M. (2007). Epistemic injustice: Power and the ethics of knowing. Oxford University Press.

Ioannidis, J. P. A. (2005). Why most published research findings are false. PLoS Medicine, 2(8), e124. https://doi.org/10.1371/journal.pmed.0020124

Oliver, M. (1992). Changing the social relations of research production? Disability, Handicap & Society, 7(2), 101–114. https://doi.org/10.1080/02674649266780141

Tronto, J. C. (1993). Moral boundaries: A political argument for an ethic of care. Routledge.

Wynne, B. (1996). Misunderstood misunderstanding: Social identities and public uptake of science. Public Understanding of Science, 1(3), 281–304. https://doi.org/10.1088/0963-6625/1/3/004