Personal and Family Perspectives Regarding Neurodegenerative Disorder Risk

Participants’ NDD risk impacting their life

Significant age differences were observed across the five topical categories for the “About Me” Survey. Specifically, for the Finding Out category, the proportion of 50–59-year-olds who strongly or somewhat agreed “It would be important to know if I have a risk of developing an NDD” (Q1) was significantly greater than the 70-or-more year-old group (p<0.0005). The 50–59-year-olds also “preferred not to know if they were at risk of developing an NDD” (Q2) versus the 70-years-and-older group (p<0.05).

For The Future category, significant differences were found across the different age ranges on how the knowledge of NDD risk would affect their view of the future. The 50–59-year-old cohort strongly/somewhat agreed that “knowing NDD risk would change their priorities and how they planned on living their life” (Q4, p<0.005), “particularly in planning for the future” (Q5, p<0.025) compared to the 70 years and older group. A higher proportion of the youngest group would “change their future plans for health resources and support” (Q6) based on NDD risk compared to the oldest cohort (p<0.05). Despite more positive responses to those questions concerning NDD risk knowledge preference, the youngest cohort more frequently endorsed that they would “feel more pessimistic about their future based on NDD risk” (Q8) compared to the oldest group (p<0.05).

For the Family and Friends category, youngest age group expressed “greater worry in sharing their NDD risk information with friends and family” (Q10) compared to the oldest group (p<0.01).

For the Managing NDD Risk category, having a comfortable “understanding of lifestyle behaviors associated with NDD risk reduction” appeared to decrease with age (Q13) (p<0.0001). Conversely, the youngest group strongly/somewhat disagreed with this statement compared to 35% for the 60-69 years-old (p<0.01) and 39% for the 70-plus years-old (p<0.005).

Lastly, for the Physician Interaction category, the 50–59-year-olds more frequently agreed that “they would want their physician to ask about their preference for knowing about a potential NDD risk” (Q14) compared to the 70-plus year-old group (p<0.01). No significant sex and country differences were observed across the categories for the “About Me” Survey.

Parents’ NDD risk impacting Participants’ Life

In the questions related to Finding Out, participants from Japan had the fewest positive responses (i.e., strongly or somewhat agree) to the statement “It is important for me to know if my parent has a risk for developing a NDD condition” (Q1) relative to all countries except Germany. Fewer positive responses were reported from Germany compared to participants in Australia and France (all p<0.05). Japan, Germany, and the US participants responded that they would be less willing to pay for an NDD diagnostic procedure not provided by healthcare for their parent” (Q3) compared to those in Australia, Canada, France, and Italy (p<0.05).

For questions related to The Future for their parent or themselves, fewer Japanese participants felt “his/her priorities would change if their parent was at an increased NDD risk” (Q4) compared to all of the other represented countries except the US (p<0.025), while US had fewer affirmative responses compared to France (p<0.05). Japan had fewer positive responses to the statement “knowing about my parents’ NDD risk will help me plan for their future” (Q5) compared to Australia, Canada, France, and the US (p<0.05), while German participants had fewer positive responses relative to Australia and France (p<0.05).

Positive responses to “helping their parent plan with their health resource and support needs” (Q6) were fewer in Japan compared to Australia, Canada, France, Germany, Italy, UK, and the US (all p<0.025). Respondents from Japan and US appeared to be less “anxious in knowing when their parents cognitive problems might begin” (Q7) compared to the other countries(p<0.05).

Finally, when considering “if a parents’ NDD risk would impact the participant’s future” (Q9), respondents in Japan had fewer positive responses compared to Australia, Canada, France, Italy, UK, and the US (p<0.025), while German participants had fewer positive responses relative to Australia, France, and Italy (p<0.05).

For Family and Friends, the proportion of positive responses to “a parent with NDD risk worrying about the family being anxious” (Q10) were fewer in Germany, Japan, and the US relative to Australia (p<0.05), while Italian parents would be expected to worry more than those in Japan and Germany (p<0.05). The importance for “notifying friends and family of a parent’s NDD condition” (Q11) was greater in Australia, Canada, and France compared to Germany, Japan, and the US (p<0.05), while Canada’s positive responses were greater than in the UK (p<0.025).

As to Managing NDD Risk all countries had greater positive responses to “learning more about medications and adaptive therapies to delay NDD onset” (Q12) compared to Japan (all p<0.01).

Finally, when considering Physician Interaction, the proportion of participants who “wanted a physician to ask a parent about their preference for knowing about a potential NDD risk” (Q14) was greater in Australia relative to Japan and Germany (p<0.05), positive responses were greater in France relative to Germany and the US (p<0.05), and Italy was greater than Japan (p<0.05). Those who would “lose trust in the parent’s physician if they knew but did not discuss the parents increased NDD risk” (Q15) were proportionally less in Japan relative to the other seven countries (all p<0.001), while positive responses were less in Australia and Italy compared to France (p<0.05).

Differences between men and women were observed when considering the impact of a parent with NDD Risk. Women were more likely to express willingness to help their parent(s) with their future plans for health resources (Q6) (88% vs. 82%, p<0.025), a consistent pattern across all countries. Women agreed to the statement “I would want to learn more about medications and adaptive therapies that could delay my parent’s NDD onset” (Q12) more strongly than men (88% vs. 76%, p<0.0001), with agreements greater in Germany (89% vs. 71%, p<0.05) and in the UK (95% vs. 76%p<0.01). Finally, more women reported they would lose trust in their parent’s physician if they knew but did not discuss their parent’s NDD condition (Q15) compared to men (78% vs. 66%, p<0.0001), with women agreeing to this statement in greater numbers in Japan (63% vs. 34%) and in the UK (84% vs. 61%) (both p<0.01).

Discussion

Interest in NDD Risk Assessment

This study evaluated perspectives and preferences about the future risk of developing a NDD, evaluating the effect of age, gender and geography. The surveys targeted age groups when cognitive decline is likely to begin to emerge, and from those likely to become caregivers to their parents, while evaluating betweencountry differences, limited to those of similar socioeconomic conditions. These data provide evidence that suggests interest in pursuing an NDD risk assessment is age dependent and skewed toward older, middle-aged (ages 50-59) as compared to old-aged participants (70-years or older) across various income-resourced countries. Preferences for knowing about NDD risk may change across age groups as awareness grows about currently available and future disease-modifying interventions for NDD (Rose et al., 2004).

Interestingly, respondents’ preferences for wanting to know if a parent had increased NDD risk did not vary across countries as might be anticipated, given expectation for caregiving resources implicit in different healthcare systems. For example, the indirect costs contributed by the caregiver as a proportion of total dementia costs in France and Italy were substantially differ (i.e., 54% and 80% respectively), yet in our study participant interest in knowing their parent’s NDD risk in these two countries were similar (Jönsson, 2022). Conversely, the expected caregiver’s contributions in the UK and Germany were similar, yet in our study participant interest in assessing a parent’s NDD risk was 9% greater in the UK (Jönsson, 2022).

Our study confirmed that a clear majority of participants (64-72%) expressed preference for learning about their own NDD risk and an even higher proportion (81%) wanted to know if their parent was at increased risk of an NDD condition. This finding has clear implications for shared decision making in clinical practice settings and suggests that health care providers should ask their patients as well as their families about their individual values and preferences for receiving NDD risk counselling in clinically appropriate settings (Schaeffer et al., 2024; Stefani et al., 2023).

A participant’s apparent willingness to pay out-of-pocket (OOP) for a parent’s NDD risk assessment, interestingly, also did not seem to relate to the proportion of healthcare expenditures each participant would expect to pay in their country. The expected OOP payments as a proportion of total healthcare expenditures were similar in Canada, Germany, Japan, and the US (i.e., 1214%), yet participant willingness to pay for a parent’s NDD risk assessment ranged from 57–80% (Baird 2016). In Australia and Italy, greater willingness to pay for a parent’s NDD assessment was consistent with greater expected OOP payments (18-19%), however, in France the willingness to pay was near the top of all countries surveyed while expected OOP payments was the lowest (8%) (Baird 2016).

Education and Communication

In the absence of a cure or an NDD treatment that is globally accessible, risk reduction aiming to slow progression remains the most feasible and proactive way to combat dementia (e.g., diet, exercise, cognitive training and rehearsal, managing general and cardiovascular health, etc.). Our study highlighted across-country differences in awareness of disease mitigation interventions that may have important public health implications for future societal initiatives to improve community awareness of these low-cost yet potentially high-impact strategies. At least 40% of those in all countries except Canada were relatively unaware of lifestyle patterns that could help delay the start of a NDD condition. When available, the typical age for dementia screening and education target those 70-years and older. However, in this demographic group, only 30% were aware of lifestyle patterns that could delay the start of an NDD condition.

Physicians are expected to play a key role in helping to manage NDD risk. The degree to which primary care can serve as an effective channel for dementia education and screening is debatable. Survey results found 82% of primary care physicians believed they were gatekeepers for dementia care and over 50% fielded questions about dementia every few days (Sideman et al., 2023). A conflicting report suggests dementia screening is rarely performed at the primary care level and only half do a full workup even when there is a clear cognitive concern (Perales-Puchalt et al., 2023). Interestingly, 49% of those 50-59 years-of-age, were aware of lifestyle interventions that could delay dementia onset. We found younger adults placed a greater premium on transparency of physician communication regarding NDD risk, and there were important cultural differences impacting physician interaction expectations. It is possible that the relatively low rate of agreement and greater neutral responses in Japan concerning physician interaction resulted from greater institutional trust. Conversely, it’s been suggested that Asian healthcare providers do not proactively involve caregivers in the medical and longer-term decision-making process, despite the preferences of the patient and caregiver (Ng & Indran, 2021).

The influence of age on positive responses to having “awareness of lifestyle patterns that delay the start of an NDD condition” was consistent across the two surveys. We found the average positive response ranged from 59% for those 30 to 50 years, 50% for those 50 to 60 years, and 36% for those 60 years and older. Given that we did not detect interactions between age and country with the logistic regression analysis, age-related differences in NDD awareness as it relates to communication strategies should be investigated further.

Our findings are consistent with other studies that found that women were more likely than men to serve as caregivers for a person with dementia (Martínez-Santos et al., 2021). Interestingly, we confirmed previously reported gender disparities related to caregiver burden and well-being were consistent across countries (de Graaff et al., 2025; Bjørge et al., 2024). This study suggests resources for dementia education and care planning can be tailored towards women caregivers’ interests/needs, given women more than men would seek information to help delay the onset or mitigate a NDD. Of interest would also be the effect that knowledge of a parent’s NDD risk severity or changing severity has on the caregiver’s burden and/or mental health, given both contribute to increased parental mortality risk (Jiang et al., 2024; Lwi et al., 2017).

Who to communicate with and how best to communicate results from an NDD risk assessment revealed additional themes with group-differences across both surveys. Participants perceived that sharing personal or parental NDD status with family members may cause anxiety due to uncertainty around disease onset or progression. These findings suggest routine follow-up testing would be helpful in reducing stress and anxiety and improve patient and family member engagement by monitoring critical changes in NDD risk trajectory (Park et al., 2018).

Study limitations

This study included a multi-national and multicultural sample population that may not be generalizable to middle- and lowerincome economies. Future studies should include respondents from countries across all income levels is of particular importance since the presence, severity, and rate of progress for dementia appears to be higher in those with fewer years of education or from low/middle income countries (Hale et al., 2020; Gnanamanickam et al., 2018).

Another limitation of this study was the use of a new survey instrument that was administered but not validated across multiple languages. Additionally, the results were based on small samples for each country, an important limitation. While the 70 years of age and older group responded less positively than the 50-59 yearsold cohort in the About Me survey it’s possible that increased sampling from the US (26%), Australia (24%), and the UK (15%) in this older cohort contributed to group differences. We did not, however, detect interactions between age and country with the logistic regression analysis. It would be of great interest to see if the non-significant findings are consistent with a larger population sample representing a broader diversity of worldwide countries and a larger sample size.

Use of the SurveyMonkey platform to anonymously access privacy-protected survey responses without use of a consent form is another clear limitation, since only limited demographic, socioeconomic, and current health information concerning respondents could be ascertained, despite the platform being used for previous human subject studies (Carvalho et al., 2025; Ali et al., 2025; Hall et al., 2025). It’s unclear if a greater tendency for neutral responses to some questions from Japan might be attributed to a cultural tendency to provide more cautious or modest responses, or for perceived dementia stigma (Noguchi et al., 2025; Culpepper & Ballenger, 2022). It may also be more common in some Asian cultures for caregivers to perceive “losing face” and experience greater isolation and loneliness than in other cultures (Lwi et al., 2022). Future studies involving a larger and broader set of Asian countries should be performed, including further questions probing possible explanatory factors for different cross-cultural responses. Conclusions and Implications

Our findings have implications for clinical settings for health care providers as well as future public health informational and screening initiatives concerning NDD. Providers and public health communication strategies will need to consider and incorporate different degrees of emphasis for older adults, and in countries with lower awareness rates of lifestyle and activity choices and habits that might mitigate NDD disease risk. We also found that compared to men, more woman was motivated to seek information to help delay NDD onset. It’s possible that targeting parental dementia prevention education toward adults in midlife will have the greatest long-term impact on reducing NDD risk, but only after younger generations reach an older age. Further investigations aimed at tailoring health education awareness and lifestyle changes favoring NDD risk prevention can facilitate optimized approaches toward meeting the needs of patients, their families, and the broader community.

Declaration of Conflict of Interest

Mr. Levendowski and Ms. Berka are employed by a company with technologies that can assess neurodegenerative disorder risk. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. Dr. Boeve receives honoraria for SAB activities for the Tau Consortium; research support from Alector, Biogen, Transposon and GE Healthcare. Dr. Lewis is a consultant for Pharmaxis Ltd.

Sources of Funding: This survey was supported in part by the National Institute of Aging (NIA)-National Institute of Health (NIH) (R44AG050326 and R44AG054256) and Advanced Brain Monitoring, Inc. paid for Survey Monkey use.

Ethics Approval and Informed Consent Statement

Survey responses were obtained anonymously with no identifiers other than gender, 10-year age bracket and country, and as such this study was determined to be Institutional Review Board exempt.

Data Availability Statement

Survey responses by age and country will be made available upon request.

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