A multidisciplinary study conducted at the University of Eastern Finland has shown that people with dementia and their caregivers can participate in demanding research without experiencing a significant burden. Participants described their involvement as meaningful, important and even empowering.
For a long time, dementia research has been shaped by concerns that participation in research 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 in the study. Many described the experience as positive, interesting and even refreshing.
The study 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 realisation 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 healthcare, service systems and societal decision-making,” says Professor Eino 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 analysed 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 Professor Anna Mäki-Petäjä-Leinonen.