Abstract
Keywords
Introduction
Despite rapid advances in understanding dementia, healthcare systems remain ill-equipped to detect early cognitive decline in neurodegenerative diseases such as Alzheimer’s disease (AD). Early identification of individuals with cognitive decline in the general population is crucial for dementia prevention and for dissemination of future disease-modifying treatments to suitable individuals. While subjective cognitive decline (SCD) can indicate very early Alzheimer’s disease even when standard psychometric tests remain within the normal range, psychometric assessment still plays a key role. Objective testing provides a baseline against which subtle longitudinal changes can be detected, and it helps differentiate between normal variability and emerging impairment. When SCD is accompanied by an AD-typical biomarker profile, the likelihood of future cognitive decline increases substantially, underscoring the value of combining subjective reports, psychometric screening, and biomarker evidence in early detection efforts. Offering cognitive screening to persons with SCD may enable early intervention. Currently, no systematic, standardized approach for targeted cognitive screening exists in Germany (or worldwide). In many regions, the standard practice is to administer a brief screener such as the MoCA and refer individuals for a full neuropsychological evaluation if needed, which limits early detection of Alzheimer’s disease.1,2
Despite the recognized importance of early detection, few studies have examined older adults’ perspectives on cognitive screening or the acceptability of digital and biomarker-based assessments. Importantly, the COVID-19 pandemic accelerated the adoption of telehealth and digital screening tools, a trend that has continued in the post-pandemic period and underscores the need for scalable digital approaches to cognitive assessment in older adults. Recent work shows that mobile and remote cognitive assessments can achieve good reliability and feasibility compared with traditional in-person testing,3,4 although some studies highlight systematic differences between remote and face-to-face assessments that require careful implementation. 5
Growing interest in digital assessment methods may benefit many older adults—particularly those with mobility limitations—but also risks exacerbating inequalities through digital exclusion. Many older individuals lack access to suitable devices or internet, feel uncertain about using technology, or have concerns about data privacy. It remains essential to ensure that these approaches do not inadvertently exclude those unable or unwilling to engage digitally. 6
Understanding patient motivations and concerns is therefore essential for designing feasible, acceptable, and effective screening programs. Gaps in digital assessments highlight the need to better understand patient motivations and concerns regarding the use of digital assessments. 6 Evidence on community-based approaches that combine subjective reports, objective testing, and biomarkers remains limited, particularly in the German healthcare context, where no systematic, targeted screening exists. The current study addresses this gap by integrating quantitative and qualitative data to inform patient-centered, digitally feasible strategies for early detection and dementia prevention.
Methods
To explore participant perspectives on cognitive screening and participation in Alzheimer’s disease (AD) research, we conducted a qualitative sub-study nested within the CogScreen project. Structured qualitative interviews were carried out 6 months after study participation (August to October 2023). Of 446 CogScreen participants, 28 were randomly selected and invited by telephone to participate in 15-min interviews. All participants provided informed consent. After completing 28 interviews, data saturation was reached and no further sampling was considered necessary.
CogScreen Project
The CogScreen study (Community Geriatric Service-Based Cognitive Screening to Identify Early Decline in Seniors in Germany) enrolled 446 participants from February 2023 to February 2024. Supported by the Davos Alzheimer’s Collaborative Healthcare System Preparedness Program, it assessed the feasibility and effectiveness, and efficiency of a pragmatic, community-based approach to identify early cognitive decline in older adults attending outpatient clinics, senior centers, and social or cultural activities in the greater Munich area. Participants were randomly assigned to one of three groups, representing a unique combination of cognitive assessments to evaluate cost-effectiveness and diagnostic utility in the early AD detection: GROUP/ARM 1: Subjective Cognitive Decline Questionnaire (SCD-Q) only GROUP/ARM 2: SCD-Q and Cognigram digital cognitive test GROUP/ARM 3: SCD-Q, Cognigram test, and blood-based AD biomarker analysis
The SCD-Q (MyCog) is a 24-item self-report questionnaire assessing subjective cognitive changes over the past 2 years using dichotomous (yes/no) responses. 7 MyCog has been empirically validated: the original study demonstrated high internal consistency (Cronbach’s α ≈ .90) and significant discrimination between cognitively healthy individuals, subjective cognitive decline, mild cognitive impairment, and Alzheimer’s disease. 7 However, a recent COSMIN-based systematic review concluded that, although reliability is strong, evidence for content validity and structural validity of the SCD-Q remains limited.8,9
The Cognigram test, a tablet-based digital cognitive battery, measures psychomotor speed, attention, working memory, and learning through interactive tasks, enabling reliable detection of cognitive impairment. 10 GROUP/ARM 3 participants additionally underwent blood-based biomarker testing, with blood samples analyzed for amyloid-beta and phosphorylated tau (p-tau181) using Elecsys immunoassays (Roche). General Practicioners (GPs) received results of the SCD-Q and Cognigram test with interpretative guidance and independently decided on further medical procedures or specialist referrals to LMU Munich’s Alzheimer’s Therapy and Research Center.
Qualitative Sub-study of CogScreen
We conducted qualitative interviews with 28 participants to understand participant decision-making regarding involvement in AD trials and to explore reasoning for participation, concerns, and digital affinity. Informal, unstructured feedback from participants highlighted important aspects of the patient experience with AD digital and blood biomarkers. Prior literature suggests that patients and caregivers are often insufficiently consulted in AD research11-13 underscoring the need to explore their perspectives. This study adhered to the consolidated criteria for reporting qualitative studies. 14
Data Collection and Interview Methods
The interview guide was developed iteratively following Helfferich’s SPSS method, which consists of four structured steps: collect (Sammeln), check (Prüfen), sort (Sortieren), and subsume (Subsumieren).10,15 Interview questions covered the following topics: (a) motivations for participation in the CogScreen study, (b) fears and concerns about participating in Alzheimer’s research, and (c) experiences with digital cognitive assessments. The interview guide is provided in Appendix A.
Interviews were conducted on-site by a female psychologist, a female medical student, and a female psychology student, under research supervision of a female neurologist and psychiatrist. The interviews were recorded via telephone as audio recordings and lasted an average of 10.51 min (range = 4.41 to 21.27 min) using an encrypted audio recording device. The recordings were saved on a secure drive on a hospital computer (only accessible to research team), transcribed, verified, anonymized, and uploaded to the MAXQDA software. 16 Having had prior contact with the interviewers during CogScreen assessments helped build familiarity and trust. All participants underwent the informed consent process to ensure their understanding of the study’s aims and procedures.
Qualitative Data Analysis
Thematic content analysis, guided by deductive and inductive approaches, was employed by female psychologists to identify dominant trends across interviews.17,18 Categories covered motivation, reactions to a diagnosis, fears, digital affinity and feedback on study processes (SCD-Q, Cognigram, language analysis). To enhance the rigour and trustworthiness of the findings, 5% of the interviews were double-coded, and any discrepancies were resolved through team consensus. Coding consistency was maintained through systematic application of a predefined guide, adjusted iteratively to accommodate new insights.
Trustworthiness and Credibility
To ensure the trustworthiness of the data and to enhance credibility19,20 three researchers were involved in designing and conducting the interviews and performing the analysis. To enhance the rigour and trustworthiness of the findings, 7% of the interviews were double-coded, and any discrepancies were resolved through team consensus. Participants showed variation in demographic characteristics (eg, gender and age) as well as differing levels of prior experience with digital technologies, which together contributed to capturing a broader range of perspectives relevant to cognitive screening. The research team independently reviewed transcripts, discussed, reflected on the proposed themes and systematically applied the codes, sorted and organized them into a final thematic structure of themes and representative quotations reflecting participants’ experience.
Results
Participants Characteristics
The final sample size consisted of 28 participants. Six men and 22 women participated in the interview. The mean age was 72.21 years (SD = 6.10 years). The mean number of years of education was 12.81 years (SD = 3.96 years). 17 participants were recruited at the Johanniter advise center. 5 people took part in the survey at the LMU hospital, 2 people came from the sample that was visited at service centers for the elderly and 4 others are members of various community and interest-based organizations. Of the 28 participants, 3 completed only the SCD-Q (Group/Arm 1), 5 completed the SCD-Q and the Cognigram test (Group/Arm 2), and 20 completed the full assessment including the SCD-Q, Cognigram test, and blood draw for AD blood-based biomarkers (Group/Arm 3).
The following section outlines the key themes, which reflect the range of perspectives and meanings of participants’ involvement in the study.
Theme 1: Firstly My Mum
A prominent theme that emerged in participants’ accounts was a deeply personal motivation for study participation, often rooted in family experiences with dementia. Participants were predominantly driven by the desire for early detection of AD and the hope of taking preventive action. What motivated most participants was that the study offered an opportunity for early detection of AD, as earlier diagnosis is crucial for better treatment chances. In addition, many participants had noticed cognitive deterioration in themselves, like increased forgetfulness. The most frequently mentioned reasons were personal relevance and risk for developing dementia, such as older age or family history (n = 9).
Participants further described their reasons for participating in CogScreen as a means to detect memory difficulties (n = 7), the desire of early detection with options for treatment (n = 5).
One participant described her motivation to participate as follows: English translationa: ‘My motivation was firstly my mum. My mum also had a stroke, just like me. I had somehow thought I could get round it, but she had a stroke at exactly the same age as me - at 80. And then she started to develop dementia. Well, you realised that it was getting worse and worse. And [ehm] [...] the first stage was pretty cruel, I have to say. Because she sensed that something was wrong with her, but I think that's generally the case. She was so rebellious and aggressive and then I thought to myself, I don't want to become that for God's sake. So if at all possible, I want to know about it early on and maybe be able to take countermeasures ...’
Theme 2: If There’s Something – I Want to Know
The second theme that emerged was a strong desire to take action in preventing dementia. Regarding potential AD diagnosis, an initial shock followed by immediate action was described (n = 5), such as consulting a doctor or attempting to slow disease progression. Their motivation to participate stemmed largely from perceived cognitive decline, performance tracking, or preventive considerations. Despite descriptions of shock and grief following a potential diagnosis, mostparticipants emphasized the importance of engaging in preventive behaviours as early as possible. For the majority of participants, the reactions tended to encourage action and were again centered on the idea that an early diagnosis is better than a late diagnosis. Behavioral intentions post-diagnosis included seeking treatment for AD (n = 16), finding long-term accommodation and care (n = 6), and informing themselves about the disease and its consequences (n = 2). One participant expressed: English translation: ‘Shock! Yes, I would just make sure that I'm at the doctor's, that maybe something can still be done, that maybe it can be delayed a bit.’
Some were less action-oriented, anticipating feelings of shock and grief (n = 8), a need to identify the cause or trigger (n = 2), and gravely, declared a wish to end their life (n = 2).
Theme 3: I Trust the System
This theme reflected a general sense of trust in public institutions and research settings in Germany, and how this trust shaped participants’ perceptions of data protection.
Participants predominantly expressed confidence in the handling of their personal information, often without major concerns or detailed reflection. Most respondents declared their trust for the system (n = 11), for the LMU hospital (n = 4), and for research in general (n = 2). Some expressed a general apathy towards data collection (n = 2), that acknowledgment that data protection was ubiquitous in their environment (n = 5). For these participants, there was no reason to be overly concerned about data privacy. An exemplary statement would be the following: English translation: ‘As I said, I trust the system [laughs]. Maybe it's not good but [...], but I do trust it, yes, and if I did I wouldn't see anything bad in it. I'm no longer working and [um] I'm not in insurance companies and so on. If [um], the most they could do is kick me out of the household contents [insurance] or private liability [insurance].
Theme 4: I Trust the Digital Process
The final theme captured participants’ trust and comfort with digital tools in the study. Despite some initial scepticism towards tablet-based assessments, most participants reported feeling confident in using the digital tools, even without extensive prior experience (mean age = 72.21 years). This confidence was corroborated by observations from the investigators, who noted some technological doubts but overall smooth completion of the the assessments.
Participants generally expressed high satisfaction with the information provided about the study. The majority (n = 23) found the study information clear and easy to understand, and felt that their questions were adequately addressed. Only two participants reported difficulties with comprehension, and one could not recall the information provided to them.
Few concerns regarding data privacy and the potential negative consequences of a diagnosis were expressed. Three participants described worries about diagnosis or data sharing with third parties (n = 2) such as insurance companies. The majority (n = 20) was not worried about such consequences and expressed trust in healthcare policies managing data protection.
Discussion
This qualitative study highlights the importance of integrating participant perspectives to advance patient-centered approaches in the development and implementation of digital cognitive screening tools. The findings underscore that users’ motivations, concerns, and expectations shape how such tools are perceived and accepted. By capturing these experiential insights, the study provides a nuanced understanding of older adults’ attitudes toward cognitive symptoms, AD screening, and digital assessment procedures—dimensions that are often insufficiently explored in early detection research.
Participants emphasized the value of early identification of cognitive decline, frequently rooted in personal experiences with Alzheimer’s disease or concerns about their own cognitive changes. The possibility of early diagnosis was associated with access to potential interventions and opportunities for proactive health behaviors. Importantly, fears about data security and negative consequences were largely minimized by a strong trust in the structure of the study and in the German healthcare system, particularly the long-standing reputation of public and university hospitals. This culturally embedded trust likely shaped acceptance and perceived safety of the screening procedures, and similar levels of acceptance cannot be assumed in contexts where healthcare institutions are less trusted or more fragmented.
In terms of usability and feasibility, most participants reported comfort with digital tools, challenging common assumptions of low digital affinity among older adults. The study therefore demonstrates that digital cognitive screening can be well received when tools are intuitive, clearly explained, and embedded within trusted institutional frameworks. Several usability-related insights derived from participant feedback were subsequently integrated into the ongoing CogScreen II study and into the development of the digital cognitive test battery BraincheX (Medotrax GmbH, Munich, Germany), illustrating how qualitative findings can directly inform iterative improvement in patient-centered tool design.
Insights from other healthcare fields further contextualize these findings. In cancer research, physicians may misjudge patients’ preferences, informational needs, and level of understanding, and poor communication can lead to care decisions that do not align with patient priorities.21-23 Although these observations arise in oncology, they resonate strongly with dementia research, where communication challenges, evolving cognitive abilities, and family involvement complicate shared decision-making. Qualitative approaches help illuminate how individuals interpret information, articulate preferences, and navigate concerns about autonomy and future care in these complex contexts. Person-centered care extends beyond traditional patient-centered frameworks by prioritizing meaning in life over functional outcomes,24,25 and qualitative research is therefore essential to bridge the gap between standardized procedures and individualized support needs.
Beyond practical considerations, the findings of this study have important theoretical implications for models of digital engagement, cognitive assessment, and health decision-making in older adults. The higher-than-expected digital affinity observed challenges prevailing assumptions in aging and technology acceptance models, indicating that theories of digital literacy may need refinement to account for heterogeneity among older populations. Also, participants’ interest in biomarker-based assessments suggests that theoretical models of cognitive aging and early detection should increasingly integrate behavioral and biomedical dimensions.
Suggestions for Future Research
The findings of this study provide guidance for future research on digital cognitive screening by highlighting areas where participant experiences, engagement, and comprehension can inform more effective and acceptable interventions. Older adults in this study demonstrated higher digital affinity than often assumed in the literature, suggesting that future research should systematically assess digital competence and engagement using standardized measures, such as the Affinity for Technology Interaction Scale (ATI). Incorporating such measures would allow researchers to better tailor digital tools to users’ capabilities, challenge assumptions about low digital literacy in older populations, and optimize usability, participation rates, and overall engagement.
Similarly, structured assessment of participants’ comprehension and decision-making capacity, for example using a tool to assess competence of treatment decisions, such as the MacCAT-T, 26 could support a more precise understanding of how individuals interpret study information and make informed decisions in the context of early detection programs, providing information that may be applied to improve the significance of digital cognitive screenings.
Participants expressed interest in biomarker-based assessments, including blood collection, highlights the need for systematic investigation of attitudes toward biological testing, an area that is increasingly relevant in the context of personalized medicine and early detection of Alzheimer’s disease. Moreover, conducting assessments in participants’ everyday environments and prioritizing in-person interactions can improve ecological validity, ensuring that digital tools are usable, understandable, and responsive to real-world conditions. Future research should further investigate the influence of digital affinity on the usability of digital screenings in everyday enviornments, such as from home, to understand tools’ usefulness and allow for future developments and improvements.
Finally, co-design and participatory approaches should be integrated early in the development of digital cognitive screening tools to enhance usability, navigation, and clarity of instructions. Iterative piloting with real-time user feedback can further optimize interface design, language, and overall user experience. These recommendations are supported by prior research emphasizing the importance of patient-centered, contextually sensitive approaches in early detection studies and demonstrate how systematic engagement with participants can inform the development of interventions that are both acceptable and effective.
Limitations
There might be a selection bias in that primarily those participants who were in favour of the study chose to take part in the interview. Moreover, only patients who completed the full CogScreen program were invited to share their perspectives, potentially limiting insights from individuals who discontinued the program. This may have resulted in an overrepresentation of participants who are more confident using digital tools and more motivated to engage with cognitively demanding tasks, thereby influencing how digital technology and testing procedures were perceived.
Participants also showed a high level of education, frequent personal connections to family members affected by AD, and a clear understanding of the disease and the need for preventive measures. This well-informed and proactive sample likely shaped several themes — particularly those related to digital literacy, acceptance of technology-driven screening procedures, and the perceived value of preventive assessment. Individuals with lower educational backgrounds or fewer prior experiences with AD may have expressed more uncertainty, lower confidence in digital tools, or different informational needs.
In addition, the cultural context of the study must be acknowledged: the strong reputation and high public trust in German public and university hospitals likely contributed to participants’ confidence in the study procedures, data security, and early diagnostic pathways. These perceptions may not generalize to countries where healthcare systems have lower societal trust or more inconsistent care standards, potentially limiting transferability of the findings beyond this specific population.
Future research should therefore include minority groups and people with lower levels of education to broaden perspectives and capture a more diverse range of attitudes toward digital cognitive assessment and dementia prevention. 27
Conclusion
The present study systematically captured participant feedback during the COGSCREEN study, providing key insights for dementia research and digital tool development. Findings highlight older adults’ engagement with digital tools, the influence of institutional trust on data protection, and practical improvements of the SCD-Q17 questionnaire to enhance accessibility. Participants demonstrated strong interest in Alzheimer’s research, willingness to undergo biomarker assessments, and a proactive attitude toward brain health. These insights are being applied in the ongoing CogScreen II program to support early identification of cognitive decline and provide psychosocial support across the diagnostic pathway.
Supplemental Material
Supplemental material - Motivation, Worries and Digital Affinity in Cognitive Screening - Qualitative Findings From the CogScreen Study
Supplemental material for Motivation, Worries and Digital Affinity in Cognitive Screening - Qualitative Findings From the CogScreen Study by Paulina Tegethoff, Robert Perneczky, Marleen Taute, Amy Deckert, Michael Hornbecker, Sophia Rutt, Anna Hufnagel, Soeren Mattke, and Carolin Kurz in Journal of Geriatric Psychiatry and Neurology
Footnotes
Acknowledgements
The authors thank the study participants and their families for their participation and time.
Declaration of Conflicting Interests
The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: The authors report no conflicts of interest for the studies presented. R.P. competing interests are described in the acknowledgements. R.P. has received honoraria for advisory boards and speaker engagements from Roche, EISAI, Eli Lilly, Biogen, JanssenCilag, Astra Zeneca, Schwabe, Grifols, Novo Nordisk and Tabuk.
Funding
The study was funded by a grant from the Davos Alzheimer’s Collaborative. R.P., who is also supported by the German Center for Neurodegenerative Disorders (Deutsches Zentrum für Neurodegenerative Erkrankungen, DZNE), the Hirnliga e.V. (Manfred-Strohscheer Stiftung) and the Deutsche Forschungsgemeinschaft (DFG, 1007 German Research Foundation) under Germany’s Excellence Strategy within the framework of 1008 the Munich Cluster for Systems Neurology (EXC 2145 SyNergy– ID 390857198), the National Institute for Health and Care Research (NIHR) Sheffield Biomedical Research Center (NIHR203321), the University of Cambridge– Ludwig-Maximilians-University Munich Strategic Partnership within the framework of the German Excellence Initiative and Excellence Strategy and the European Commission under the Innovative Health Initiative program (project 101132356). CogScreen is funded by the Davos Alzheimer’s Collaborative (grant number 876D5741-AC34-4695-A0E6-8D220A66FDB4), whereas there is no funding for SCD-Q.
Ethical Considerations
Participants were recruited from the CogScreen study (project number 22-0786), a cohort study investigating the feasibility of screening for Alzheimer’s disease (AD) in the general population, which started in 02/23. The study was approved by the local ethics committee of the Ludwig-Maximilians-University Munich (project numbers 22-0786). Permission to reproduce material from other sources is not required as proprietary data is used for this manuscript. CogScreen has been retrospectively registered at clinical trials (NCT06191952).
Consent to Participate
All authors ensure that informed consent was appropriately obtained, that the research met ethical guidelines, including compliance with the legal requirements of the country of the study. Written informed consent was obtained from all participants in accordance with the 1964 Declaration of Helsinki.
Consent for Publication
Written informed consent for publication was obtained from all participants, and the original consent forms are held by the authors.
Data Availability Statement
The data can be made available upon request after verification.
Supplemental Material
Supplemental material is available online.
References
Supplementary Material
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