People with dementia want to participate in research, according to study

by University of Eastern Finland

edited by Lisa Lock, reviewed by Andrew Zinin

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For a long time, dementia research has been shaped by concerns that participation may be too burdensome for people with cognitive impairment. However, a recent study led by professors Eino Solje and Anna Mäki-Petäjä-Leinonen found the opposite: 90% of participants reported no burden from participating. Many described the experience as positive, interesting and even refreshing.

The study, published in the Journal of Alzheimer's Disease, examined the feasibility and acceptability of a novel research approach known as the Law Clinic Study. The model brings together medical, neuropsychological and legal perspectives in dementia research. Its aim is to improve understanding of how dementia affects an individual's legal status, legal capacity, decision-making abilities and the realization of their rights.

"The pilot study included 20 people diagnosed with Alzheimer's disease or another progressive neurocognitive disorder, together with their spouses. During a single study visit, participants completed an extensive legal interview as well as neuropsychological assessments. At the end of the study day, they were asked to evaluate their experiences of participation," explains postdoctoral researcher Kaisa Näkki, who conducted the research interviews.

"It is essential that issues related to dementia, including legal capacity, are examined through genuinely multidisciplinary research. To the best of our knowledge, research of this kind has not previously been conducted either in Finland or internationally. The findings are highly encouraging and demonstrate that multidisciplinary research can generate knowledge that is also valuable in health care, service systems and societal decision-making," says Solje.

The results showed that participants particularly valued the opportunity for people with dementia to be heard in research concerning their own lives. Many felt that participation enabled them to contribute to improving the situation of people who develop dementia in the future and their families, while also increasing societal understanding of dementia.

The study also found that interviewing people with dementia and their caregivers separately was a crucial element of the research design. Separate interviews facilitated open discussion and ensured that both parties' perspectives could be heard. Caregivers, in particular, felt that being interviewed separately made it easier to discuss sensitive issues.

"The findings challenge persistent stereotypes suggesting that people with dementia are unable to participate in research or evaluate their own experiences. On the contrary, our study demonstrates that carefully designed research that takes participants' needs into account can provide people with dementia with opportunities to be heard and to contribute to knowledge that is relevant to society," says postdoctoral researcher Henna Nikumaa, who analyzed the interview data.

The Law Clinic Study represents an internationally distinctive initiative, combining legal and medical research in the field of dementia. According to the researchers, this multidisciplinary approach is capable of generating new insights into questions that might be difficult to address from the perspective of a single discipline.

"Following this successful pilot phase, our goal is to expand the study to a larger patient population. In particular, we aim to develop methods for assessing the legal capacity of people with dementia, as no established practices or uniform assessment criteria currently exist," says Mäki-Petäjä-Leinonen.

Publication details

Henna Nikumaa et al, Empowered by participation: Patients' and caregivers' experiences in the law clinic. Multidisciplinary dementia research at the intersection of law and medicine, Journal of Alzheimer's Disease (2026). DOI: 10.1177/13872877261487378

Journal information: Journal of Alzheimer's Disease

Key medical concepts

DementiaNeuropsychological Tests

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NeurologyPsychology & Mental healthHealthy aging Provided by University of Eastern Finland Who's behind this story?

Lisa Lock

BA art history, MA material culture. Former museum editor, paramedic, and transplant coordinator. Editing for Science X since 2021. Full profile →

Andrew Zinin

Master's in physics with research experience. Long-time science news enthusiast. Plays key role in Science X's editorial success. Full profile →

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