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

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

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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.


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