Dementia research must include voices of those with lived experience

New Canadian study highlights barriers, best practices, and strategies for inclusion

University of Toronto

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A new Canadian study has found that people living with dementia (PLWD) are often excluded from research due to assumptions of incapacity and variations in institutional processes. The authors argue that with rights-based, supported approaches, PLWD can participate meaningfully in decisions that affect their lives.

“To ignore the PLWD from research is to exclude a critical piece of information that may affect research outcomes,” says Jim Mann, an advocate living with dementia and co-researcher in the study.

The study, based on interviews with dementia researchers across Canada, reveals how a range of research processes such as funding, ethics approval, participant recruitment and forms of involvement often err on the side of protectionism, inadvertently silencing the voices of those most affected. The study’s authors call for standardized, rights-based guidance across Canadian institutions to support the meaningful inclusion of PLWD.

“Our findings show that exclusion is rarely inevitable; it is designed into systems and thus, can also be redesigned through intentional, inclusive and rights-based approaches,” says Dr. Amanda Grenier of the Institute for Life Course Studies at the University of Toronto. “Inclusion is not just ethical; it is a legal and human rights imperative under frameworks like the UN Convention on the Rights of Persons with Disabilities.”

The team offers six actionable recommendations for Canadian research institutions, including:

• studying the effects of excluding PLWD on research quality and participant wellbeing;
• revising research processes to reflect supported decision-making and ongoing consent;
• developing guidelines to facilitate participation compliant with Canadian laws;
• offering a range of research roles that recognize and include PLWD;
• applying equity, diversity, and inclusion frameworks to achieve comprehensive inclusion; and
• educating ethics boards, institutions, and emerging researchers on dementia, consent, and human rights to ensure full and meaningful participation of PLWD.

Strategies for inclusion identified by the study’s authors include involvement in capacities such as co-design, advisory committees, flexible and supportive consent procedures, and relationship-building with participants and care providers. By adopting flexible and creative research practices, and treating consent as a supported ongoing conversation, investigators can ensure that the insights gathered reflect the knowledge and insights of PLWD as well as needs that fluctuate over time.

The study’s authors argue that by implementing the recommendations Canadian research institutions can ensure that people living with dementia are recognized as meaningful contributors, while also reducing institutional risk and enhancing the relevance and quality of dementia research. This is best summed up by one of the researchers interviewed for the study, who said: “There's a huge practice gap that needs to change”.

 

Select quotes from Canadian dementia researchers who participated in the study

“I realized…staff were always wanting to put the most able residents into the program. So, there was that auto exclusion […] this idea that people who had more advanced symptoms…wouldn't enjoy it or wouldn't be able to participate.”

“Ethics boards and ethics reviewers are wanting to be very protective. They run under a risk model. Minimize, risk, protect, protect, protect…. [In] community driven research, we respect the fact that people live at risk. People can choose to have risk. That's their right, that’s their choice.”

“It's really important that research is grounded in [lived] experience…and the troubling issues for them [PLWD]. That should feed into decision-making about what we're going to do and what type of outcomes we're going to look at in a study”, noted another researcher.

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DOI

10.1017/S0714980825100470 

Article Title

Consent and meaningful inclusion of people living with dementia: Insights from Canadian dementia researchers

Article Publication Date

5-Feb-2026

 

Natto your average food

A comprehensive analysis of supersulfide production in fermented soybeans

Osaka Metropolitan University

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image: 

Supersulfide content was assessed in dried and fermented soybeans to analyze changes before and during fermentation using Bacillus subtilis var. natto.

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Credit: Osaka Metropolitan University

Supersulfide molecules, metabolites from plants that are important in cellular metabolism, are attracting attention in the medical and nutritional fields for their potential in supporting health and disease prevention. Natto, a Japanese food made from soybeans fermented with the Bacillus subtilis var. natto microorganism, is rich in these molecules. However, the mechanism by which they are produced during fermentation has remained unclear. 

To better understand this complex process, a research group led by Professor Hideshi Ihara at Osaka Metropolitan University’s Graduate School of Science extensively analyzed supersulfide content in natto fermentation using various methods. The researchers first compared supersulfides in dried soybeans from three different suppliers and four commercial natto brands. The supersulfides in the soybean variants did not have significant differences. Comparatively, the natto samples showed higher supersulfide content and varying levels between brands. The team then observed supersulfides during the fermentation process using Bacillus subtilis var. natto in homemade natto from two dried bean samples.  

Results revealed an increase in soybean supersulfides, indicating that natto bacteria actively convert other sulfur molecules into supersulfide molecules by breaking down soybean proteins and other substances. Further, it was found that soybeans that underwent heat treatment had an increase in supersulfides before fermentation. 

“This achievement is the world's first demonstration that microbial fermentation dramatically alters the supersulfide molecule profile of plants,” said Professor Ihara, “Advances in understanding the mechanisms behind natto's health benefits could contribute to maintaining and improving people's health, such as reducing the risk of cardiovascular disease.” 

The study was published in Nitric Oxide.

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About OMU  

Established in Osaka as one of the largest public universities in Japan, Osaka Metropolitan University is committed to shaping the future of society through the “Convergence of Knowledge” and the promotion of world-class research. For more research news, visit https://www.omu.ac.jp/en/ and follow us on social media: X, Facebook, Instagram, LinkedIn. 

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Journal

Nitric Oxide

DOI

10.1016/j.niox.2025.11.001 

Method of Research

Experimental study

Subject of Research

Not applicable

Article Title

Dynamic Transformation of the Sulfur Metabolome during Natto Fermentation: Supersulfide Omics Study

 

Family dinners may reduce substance-use risk for many adolescents

Regular bonding over meals may help prevent kids from using alcohol, cannabis, and e-cigarettes, but those with significant stress or trauma need additional support

Tufts University

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A new study from researchers at Tufts University School of Medicine finds that regular family dinners may help prevent substance use for a majority of U.S. adolescents, but suggests that the strategy is not effective for youth who have experienced significant childhood adversity. 

The findings provide important insights for practitioners looking to help families prevent substance use, as well as for researchers aiming to develop interventions that better account for adolescents’ unique experiences. 

For the study, published February 5 in the Journal of Aggression, Maltreatment & Trauma, researchers analyzed online survey data from 2,090 U.S. adolescents ages 12 to 17 and their parents. Participants from around the country were asked about the quality of their family meals—including communication, enjoyment, digital distractions, and logistics—as well as adolescents’ alcohol, e-cigarette, and cannabis use in the previous six months. 

The researchers then examined how these patterns differed based on adolescents’ experiences of household stressors and exposure to violence, as reported by both the children and parents. Instead of counting each adverse experience equally, the researchers created a weighted score based on how strongly the different experiences are linked to substance use in prior research and this national sample. 

Higher family dinner quality was associated with a 22 to 34 percent lower prevalence of substance use among adolescents who had either no or low to moderate levels of adverse childhood experiences. 

“These findings build on what we already knew about the value of family meals as a practical and widely accessible way to reduce the risk of adolescent substance use,” said Margie Skeer, the study’s lead author, professor and chair of the Department of Public Health and Community Medicine at the School of Medicine.  

“Routinely connecting over meals—which can be as simple as a caregiver and child standing at a counter having a snack together—can help establish open and routine parent-child communication and parental monitoring to support more positive long-term outcomes for the majority of children,” added Skeer. “It’s not about the food, timing, or setting; it's the parent-child relationship and interactions it helps cultivate that matter.” 

Adverse childhood experiences reported by participants in the study included parents being divorced; a family member being diagnosed with a substance-use disorder; someone in the family having a mental-health disorder; the adolescent witnessing violence; the adolescent often being teased about their weight; a parent using non-prescribed drugs daily; or the adolescent experiencing sexual or physical dating violence.  

The study found that family meals offered little protection for adolescents whose adversity score reached the equivalent of four or more experiences—a population that encompasses nearly one in five U.S. high school students younger than 18, according to a study of the most recent Youth Risk Behavior Survey data.  

“While our research suggests that adolescents who have experienced more severe stressors may not see the same benefits from family meals, they may benefit from more targeted and trauma-informed approaches, such as mental health support and alternative forms of family engagement,” said Skeer.  

She added that future research should explore whether other supportive routines—beyond shared meals or outside the family environment—can help protect adolescents exposed to highly stressful or traumatic childhood experiences. 

Citation and Disclaimer 

Citation: Additional authors are Grace Hajinazarian, Rachael A. Sabelli, and Misha Eliasziw from Tufts University School of Medicine. Research reported in this article was partially supported by the National Institutes of Health’s National Institute on Drug Abuse under award number 1R01DA045073-01A1. Complete information on, methodology, limitations, and conflicts of interest is available in the published paper. 

Disclaimer: The content is solely the responsibility of the authors and does not necessarily represent the official views of the funders.  

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Journal

Journal of Aggression Maltreatment & Trauma

DOI

10.1080/10926771.2025.2611862 

Subject of Research

People

Article Title

Family Dinners May Reduce Substance-Use Risk for Many Adolescents

Article Publication Date

5-Feb-2026

 

No association between COVID-vaccine and decrease in childbirth

Linköping University

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Toomas Timpka, professor of social medicine at Linköping University.

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Credit: Charlotte Perhammar/Linköping University

COVID-19 vaccination is not the cause behind a decrease in childbirth, according to a study from Linköping University, Sweden. The results speak against rumours about vaccination and reduced fertility. The findings have been published in the journal Communications Medicine.

“Our conclusion is that it’s highly unlikely that the mRNA vaccine against COVID-19 was behind the decrease in childbirth during the pandemic,” says Toomas Timpka, professor of social medicine at Linköping University.

The researchers investigated the issue because, since the beginning of the COVID-19 pandemic, unfounded rumours have circulated, especially on social media, alleging that vaccination impairs chances of becoming pregnant. In the later stages of the pandemic, there was a decrease in the number of children born in some countries, including Sweden. This raised the question whether this could be due to the new vaccines.

In the study, the researchers analysed all women aged 18 to 45 years in Region Jönköping County, a total of almost 60,000 women (of the region's total population of 369,000 people). Of these women, 75 per cent were vaccinated once or more against COVID-19 from 2021 to 2024. The researchers used data on childbirths, vaccination, miscarriages and deaths from healthcare records.

When the researchers compared childbirths and miscarriages between vaccinated and unvaccinated women, they found no statistically significant difference between the groups. This is in line with several previous studies that have not found any association between COVID vaccine and fertility.

“We see no difference in childbirth rates between those who have taken the vaccine and those who haven’t. We’ve also looked at all registered miscarriages among those who became pregnant, and we see no difference between the groups there either,” says Toomas Timpka.

The researchers believe that the decrease in childbirth has other, more likely explanations. Those who are now in their 30s, an age when it is most common to have children, were born in the second half of the 1990s. This was a time of financial difficulties and declining childbirth rates in Sweden. In other words, the group of current potential parents has become smaller due to declining birthrates 30 years earlier. Also, factors linked to the pandemic may have reduced childbirth, such as health and economic concerns and changed behaviour during lockdown.

One of the strengths of the study is that it examines pregnancy outcomes in a large group that is representative of the country’s population. The researchers have taken into account that the woman’s age is a possible factor that could hide a possible effect of vaccines on childbirth, and they have therefore compensated for age in their analysis.

The study received financial support from, among others, the Swedish Research Council.

Article: COVID-19 vaccination carries no association with childbirth rates in Sweden, Dennis Nordvall, Thomas Schön, Jorma Hinkula, Olle Eriksson, Armin Spreco, Örjan Dahlström, Johan Lyth, Daniel Axelsson, Elin Gursky, Marie Blomberg and Toomas Timpka, (2026), Communications Medicine, published online 21 January 2026, doi: https://www.nature.com/articles/s43856-026-01396-x

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Journal

Communications Medicine

DOI

10.1038/s43856-026-01396-x 

Article Title

COVID-19 vaccination carries no association with childbirth rates in Sweden