PUBLIC ENGAGEMENT

This project is deeply personal to us and our community. Many of us have seen relatives or community members struggle with Alzheimer’s, and we believe that addressing this problem is not just a scientific challenge but also a moral responsibility. We conducted an online survey aimed at members of Alzheimer local support groups, in order to better understand their views.

Because we experienced many situations in which people were reluctant to discuss Alzheimer’s disease, due to preconceived notions that this is just “getting old”, or “shameful”, we chose to prepare informative materials with two aims: (1) offer basic information about Alzheimer’s disease; and (2) share latest available information concerning risk factors and the fact that addressing them might lead to successful prevention or delay of the illness onset. Through these activities, we reached hundreds of people and gained new perspectives on how our work connects with the public.

To strengthen the impact of our project and build a broader understanding within our team, we designed a questionnaire to collect public perspectives on Alzheimer’s disease. The insights gained were essential for deciding on our strategies and ensuring that our work responds to community needs, leading to more effective outcomes. We conducted a survey across all age groups of the general public, sample size: 250 respondents, to assess people’s knowledge and understanding of the disease. The survey was intended to help us evaluate how much the public knows about the disease, how they perceive the disease, and the actions they would take to address it. This approach provides a clear picture of the relevance and importance of our project in our country and geographical region. Results show knowledge gaps about the disease and treatments, but positive attitudes towards potential new treatments.

Survey Results

1.Do you believe current treatments for Alzheimer’s are effective?

The answers reveal that a relatively limited proportion of population (55%) is informed and considers that treatments currently available can help Alzheimer’s patients. A significant portion (45%) are skeptical about Alzheimer treatments, indicating they might choose to forego medication. This highlights the importance of not only developing innovative biotechnological solutions, but also ensuring that they are communicated effectively and address public concerns.

2.How do you feel about the costs paid for Alzheimer treatments in Romania

Almost 70% of respondents considered the treatment costs high or very high, with a very low 15% who consider them affordable. The cost of Alzheimer treatments as a proportion of households’ income varies wildly, because of chronic underfunding of specialised healthcare units, shortage of healthcare professionals, lack of comprehensive long-term care structures for dementia patients.

3.Should patients with memory problems (like Alzheimer’s) be allowed to try experimental treatments with help from their families or doctors?

The majority of respondents (150) supported allowing patients with memory problems to access experimental treatments with the support of families or doctors, while 75 were uncertain and only 25 opposed. This indicates strong public openness toward innovative medical approaches, likely driven by the lack of effective current treatments. However, the significant “maybe” group highlights underlying concerns about safety, ethical implications, and patient consent. For our project, this emphasizes the importance of transparent communication of risks and benefits, as well as the development of ethical frameworks where families and medical professionals play a central role in decision-making.

4.Have you heard of synthetic biology?

Almost 70% of respondents considered the treatment costs high or very high, with a very low 15% who consider them affordable. The cost of Alzheimer treatments as a proportion of households’ income varies wildly, because of chronic underfunding of specialised healthcare units, shortage of healthcare professionals, lack of comprehensive long-term care structures for dementia patients.

5.Would you be comfortable with this kind of treatment being used on a loved one in the future, if proven safe and effective?

The results show strong public support, with 170 respondents saying “yes,” 50 responding “maybe,” and only 25 saying “no.” This suggests that once safety and effectiveness are demonstrated, the vast majority of people would be comfortable with innovative treatments being used for their loved ones. The “maybe” responses indicate lingering caution, likely tied to the need for long-term testing, regulation, and transparency. The small proportion of opposition shows that outright rejection is limited, but ethical reassurance and clear communication remain essential. For our project, this reinforces that public acceptance hinges not on opposition to synthetic biology itself, but on ensuring rigorous proof of safety, trust in regulatory processes, and open dialogue with communities.

As part of our commitment to bringing synthetic biology closer to the public, our team organized several outreach activities across Bucharest. We focused on making our project accessible and engaging to people outside of the scientific community by starting simple, direct conversations.

Flyers distribution. Our aim was to reach as many people as possible. We designed and distributed flyers that explained our project in clear, approachable language, as well as basic facts about neurodegenerative diseases. Team members handed these out at some of the city’s busiest metro stations, and in parks. These interactions allowed us not only to raise awareness about the disease, but also to gather valuable feedback and questions from people with different backgrounds.

World Alzheimer’s Day wanted to support the yearly global awareness campaign during World Alzheimer’s Day, in September. For this, we prepared materials about the problems facing the people suffering from the disease and their families and how simple tools such as the Mini Mental State Examination questionnaire can help make a decision to seek professional help. We also included the findings from the 2024 Lancet’s Commission Report on Dementia, listing the risk factors and how addressing them can prevent the onset of dementia. With help from local artists, we printed and distributed illustrated postcards, as a memento of Alzheimer’s Day. We visited Global Worth, one of the largest office buildings in our city, where we talked with professionals from different areas of activity.