Bridging Communication Gaps: Methodological Challenges and Insights in Interviewing People Living With Dementia

Introduction

As the global population ages, the number of people with dementia is rapidly increasing, with over 55 million people in the world currently living with the disease (World Health Organization [WHO], 2021). This means that people with dementia are a growing and increasingly significant population group whose views and experiences should be taken into account in different areas of society. First, without access to their authentic experiences, almost all of our knowledge about living with dementia is based on second-hand information. Secondly, by telling their stories, they narrate their own values and attitudes and thus maintain their identities regardless of the progressing and potentially stigmatizing disease. Thirdly, their knowledge is also important for family and formal carers as well as others involved in the lives of people with dementia, as it can provide crucial insights into their everyday needs, preferences, and values. This understanding is essential for ensuring good quality care and services that support the dignity of people with dementia. Without including their perspectives in research, we risk designing support systems that are misaligned with their lived realities, potentially overlooking what truly matters to them (Westius et al., 2010; Wilkinson, 2002). Hence, there is a growing recognition of the importance of incorporating the perspectives of individuals with dementia into all forms of shared knowledge formation, research included. In this study, we examine the experiences of a team of researchers in interviewing people with dementia, with a specific focus on navigating communication gaps and exploring the challenges of achieving a shared understanding in interview situations where cognitive differences create complex communicative barriers.

Dementia is an umbrella term for several different dementia-causing neurodegenerative diseases. While cognitive decline and memory problems -particularly in Alzheimer’s disease - are the most widely recognized symptoms, not all people with dementia present with these difficulties initially. Depending on the type of disease, people may instead show symptoms such as personality changes, hypersensitivity, or visuospatial and perceptual problems, as seen in frontotemporal dementia (FTD) (Torrente et al., 2014).

Problems with communication, and difficulties in producing or understanding language are also common across many dementia types. These may include difficulties such as finding the right word for objects, word comprehension, incomprehensible speech, worsened understanding of complex sentences, and loss of literacy skills such as reading and writing (Klimova & Semradova, 2016). Usually, the condition results also in changed reasoning and judgment, and worsened visuospatial skills (Klimova & Kuca, 2016).

However, these problems with language skills and communication mentioned above do not apply to everyone (Beuscher & Grando, 2009), and their degree of difficulty varies depending on the stage and type of illness (Ortiz et al., 2021). Dementia gradually impairs the cognitive functions necessary for executive control. Therefore, the dementia symptoms often affect cognitively and harms doing, like social interaction in many ways. These changes increase needs for practical help. However, skills of being, such as the ability to be present in the moment and express oneself emotionally in social relationships remain strong. People with dementia can thus express prevailing observations, desires, and emotions in habituated or embodied forms (Boyle, 2014; Hautsalo et al., 2025).

Other people’s negative perceptions of dementia and people with it can affect their interaction with these people, for example through dementia-related stereotypes and stigma (Farhana et al., 2023). People with dementia have often been excluded from research concerning them, and other people, usually their family members, have spoken on their behalf (Littlechild et al., 2014; Rivett, 2017). One of the primary reasons for the exclusion of individuals with dementia from research has been the concern regarding the reliability and validity of the data they provide (Digby et al., 2016). At times, people seem to think that difficulties in communicating thoughts equates with a lack of thoughts (Bottenberg, 2022). Involving people with dementia is still likely to be seen as complex and challenging due to the need for careful and critical consideration of ethical, methodological, and epistemological issues (e.g., Chandra et al., 2021; Halonen et al., 2024). Previous studies have also pointed out that cognitive assessments may not accurately reflect a person’s capacity to share their experiences (Bartlett & O’Connor, 2010; Hellström et al., 2007). People with dementia can still tell their own stories, even if the progress of the illness would result in losing the details and timeline of their narration by, for example, mixing up elements from the past and present. Telling about one’s own life includes talking about things that are meaningful in a person’s life, one’s core values, and related emotions. By telling others about themselves, their experiences and their conceptions of reality, people with dementia can express a sense of meaningfulness and continuity.

The narrations of people with dementia are rarely coherent and linear. Instead, they are multi-layered and sometimes contradictory due to various dementia-related changes in their lives (Hillman et al., 2018), especially as the disease progresses (Zwijsen et al., 2016). This opens up significant epistemological questions about the nature of knowledge. If the experiences or world of people with dementia differ from the so-called shared world, how can research capture and provide reliable insights into their experiences? What kind of interpretations of the shared world can be produced in research interviews? All interview accounts are, to some extent, constructed and shaped by social dynamics, including the desire to present oneself favorably (Bangerter, 2000; Goffman, 1959), and the quality of interview data is affected by numerous issues ranging from personal traits of the parties in interview situation to skills of the interviewer and the chosen interview method (Kuzmanić, 2009; Sparacino et al., 2025). Thus, there might actually be a risk that people with dementia are held to a higher standard regarding the validity of their answers than other interviewees. Their narratives can be more readily doubted, especially when fragmented or unexpected, whereas similar accounts by others might be seen as “incredible but true.” This risks reinforcing epistemic injustice (Fricker, 2007). Rather than questioning their credibility, researchers could focus on how meaning emerges in interaction and recognise the co-constructed nature of all interviews (Boyle, 2014; Hydén, 2011).

Since people with dementia are often eager to talk about their experiences (Halonen et al., 2024), it is essential to adopt interview methods that not only suit their needs (Cantley & Bowes, 2004; Groot et al., 2023) but also recognize their inherent communication capabilities. Conducting interviews with people living with dementia requires adaptability and sensitivity. The importance of the relationship created in an interview, the social setting, and practical strategies to make the situation easier are particularly crucial elements to consider (McKillop & Wilkinson, 2004). Researchers must navigate unpredictable thought processes, respond to signs of distress, and view the interview as a collaborative process. This involves co-constructing meaning with the participant, regardless of their cognitive limitations (Digby et al., 2016; Randall et al., 2006). Challenges such as digressions, memory lapses, and difficulties in staying on topic are inherent to these interviews, but they highlight the need for nuanced methodologies that honour the voices of individuals with dementia (Tarzia et al., 2013).

Recent scholarship has increasingly highlighted new ways to address these communication challenges in dementia research. These include methods that account for non-verbal communication, such as gestures and postures (Bottenberg, 2022; Groot et al., 2023; Spencer, 2023). Innovative approaches such as walking interviews have shown promise in facilitating more natural and empowering interactions, enabling people with dementia to express themselves more freely and maintain their sense of self (Brannelly & Bartlett, 2020; Odzakovic et al., 2020). Other qualitative methods, including ethnographic observation, photo elicitation, and various visual and sensory adaptations to interviews, have proven effective in generating rich insights while enhancing inclusion and supporting self-expression among people with dementia, aligning with participatory and emancipatory research approaches (Phillipson & Hammond, 2018). Comparable research outcomes, such as the generation of rich and self-expressive accounts, can also be achieved through interviews, provided that participants with dementia are treated as valued informants, engaged with respectfully and responsively, and that researchers adopt a flexible, person-centred approach while investing sufficient time in building rapport and trust (Beuscher & Grando, 2009; Hellström et al., 2007). Moreover, interviewing plays a central role in several emerging qualitative approaches, making it all the more important to advance research that explores its methodological potential in dementia studies.

This article focuses on research interviews, one of the most widely used methods in qualitative research. In dementia studies, there is a growing need for more nuanced uses of interviews; approaches that take into account the specific challenges related to cognitive impairment. Interviews are likely to remain central in involving people with dementia in research, not only due to their adaptability and practical advantages, such as ease of organisation and cost-effectiveness, but also because of their potential to support inclusive knowledge production. Recent scholarship emphasizes the importance of ethically attuned and epistemologically sensitive interview practices, highlighting how relational engagement and co-constructed meaning-making can enable access to first-person perspectives on the lived experience of dementia (e.g., Beard, 2004). Despite their promise, this remains an under-researched area, and further methodological development is essential, particularly as interviews also play a crucial role in many emerging approaches.

While previous research (e.g., Cridland et al., 2016; Digby et al., 2016; Hellström et al., 2007; McKillop & Wilkinson, 2004; Novek & Wilkinson, 2019; Samsi & Manthorpe, 2020) has provided valuable insights into the development of interview methodologies, this article addresses particularities of interviewing persons with dementia which have not been systematically explored. There is critical need for a more focused examination of communication and interpretation barriers that emerge during interviews with people with dementia. The focus is specifically on exploring how researchers navigate communication barriers and work to establish shared understanding with individuals at various stages of cognitive decline.

By reflecting on our interview experiences and analysing interview data collected across multiple projects, we aim to identify and elaborate the specific communication challenges that disrupt meaningful dialogue and develop strategies for bridging these gaps. The article ultimately seeks to demonstrate how researchers can more effectively listen to and interpret the fragmented yet valuable narratives of people living with dementia, ensuring that their authentic voices are heard.

We pose the following research questions:

(1) What kinds of communication challenges arise in interviews with people with dementia?

By addressing these questions, the article aims to advance methodological approaches for navigating communication gaps and establishing shared understanding when interviewing people with dementia, thereby enhancing the meaningful inclusion and authentic representation of individuals at various cognitive stages in research.

Data and Methods

The idea of this article is based on discussions in a series of workshops by ‘Listen to Me – Dementia as an Experience and a Phenomenon’ which brought together researchers from different Finnish organizations in 2023 to 2024. The author team comprises researchers from social and health sciences backgrounds who have studied aging, care, and dementia including both doctoral and postdoctoral scholars. Our different disciplinary perspectives and varying levels of experience in dementia research enriched the collaborative analysis. All the authors, except the second author, have interviewed people with dementia for their research in recent years. The work on this article began with discussions and sharing experiences of interviewing people with dementia in six Teams meetings. Notes were taken in each meeting, and these were followed up on at the next meeting. We found that it was particularly important to share our experiences and create a common understanding on the topics presented in this article.

The discussions were often related to questions of scientific theories on how knowledge is generated, how it is created in the interview situations and how interviews with people with dementia differed from other interview situations. According to Hulko (2004), there is a need to broaden the epistemological and ontological foundations of dementia research, incorporate insights from related knowledge traditions, and build theories that are rooted in the experiences and perspectives of those living with dementia.

This article is based on the authors’ experiences of interviewing persons with dementia as well as on selected interviews from datasets collected by the authors. The projects that the authors have conducted in recent years include (a) interviews of persons with mild to moderate dementia living at home (n = 19), (b) interviews of persons with severe dementia living in nursing homes (n = 8), (c) follow-up interviews of persons with young-onset dementia (n = 14) in the initial stage of their illness, (d) interviews with very old persons with dementia in the advanced stage of their illness (n = 8), and (e) interviews of persons with dementia together with their spousal carers (n = 17).

Each of the separate research projects have been granted ethical approvals by local ethical committees (University of Jyväskylä, Tampere University and University of Helsinki) and research ethical viewpoints (ALLEA, 2023) were closely considered during the projects. This article is based on previously approved research projects and does not contain any new data collection. Therefore, this article was prepared under these existing ethical approvals. All participants in the various studies have given their written or verbal consent to the study, either personally or through next of kin. Process consent, as outlined by Young et al. (2019), refers to an ongoing ethical approach that ensures continuous and informed participation through regular check-ins with individuals living with dementia, recognizing that their capacity and willingness to participate may fluctuate over time. This approach was used specifically in one study, while others utilized traditional consent procedures.

Results

Conclusion

In this article, we have explored experiences of interviewing people with dementia, focusing explicitly on the communication gaps that emerge during research interactions. We have reflected on how researchers can navigate these challenges in ethically and epistemologically informed ways and how they can bridge gaps and enhance mutual understanding in interview situations.

By building on our own experiences, we have shown how interviews with people with dementia are different from other interviews and have special features that the interviewer should be aware of and prepared for. The unique communicative dynamics require researchers to develop flexible and adaptive strategies. Our findings underscore the importance of viewing communication in dementia research as a collaborative process, where fragmented responses are not obstacles, but valuable insights into the participant’s inner world.

The stage of a participant’s dementia usually has a significant impact on the interview. In our experience, interviews with people in the early stages of dementia are almost identical to those with cognitively intact people. Difficulties increase as the disease progresses: the logical flow of conversation deteriorates, the ability to engage with abstract concepts diminishes, and responses become fragmented and illogical, making it harder for researchers to follow the participant’s line of thought. Similar changes have been observed in previous studies. The speech of people with memory loss is rarely coherent and linear, and sometimes contradictory, as the disease progresses (Hillman et al., 2018; Zwijsen et al., 2016). Our study extends this understanding by highlighting how such changes not only present challenges but also open up alternative ways of understanding lived experience through affective and moment-bound expressions.

Based on our experiences, common research practices, such as asking for specific background information, may no longer be relevant or accessible, underscoring the need to adopt techniques that respect the participant’s current abilities. We agree with previous research that unstructured and semi-structured interviews, alongside active listening, are preferred so that varying cognitive abilities can be accommodated (Cridland et al., 2016; Digby et al., 2012, 2014). We further argue that researchers must be ready to shift their expectations about coherence and linearity, and instead engage with the narrative in a supportive, exploratory manner. This invites researchers to rethink the types of questions posed. Instead of relying on memory-based prompts, questions can focus on feelings, preferences, or sensory and embodied experiences. Such questions support the participant’s ability to contribute from within their current cognitive and emotional frame, and encourage spontaneous expression. This approach reframes the interview not as a test of memory, but as an opportunity to share perspective, experience, and meaning in the moment. Also using pictures or photographs in interviews may encourage the person with dementia to initiate their story-telling (Hautsalo et al., 2025).

Language skills deteriorate as dementia progresses, creating a gap between the researcher’s structured questions and the participant’s ability to respond meaningfully. Interviewers can better adapt to these communication challenges if they have knowledge of dementia symptoms and experience in interacting with people living with the condition. Our interviews revealed how participants struggle to recall common words or recognize familiar places. In such cases, the interviewer can help the interviewee by guessing what the interviewee is trying to say or by asking for more information. In addition, someone who knows the person can help with the interviews. We discovered that there are many ways in which carers can fill in and interpret the speech of the person with dementia. However, a third person present can change the dynamic of the interview (Nygård, 2006). The third party can also take too dominant a role and complicate the interview process, as it raises questions about whose voice is truly being heard. Conducting interviews with only the person with dementia, despite the potential loss of logical coherence, may offer a more authentic representation of their voice. However, it is difficult to know in advance whether the presence of a third person is a threat or an opportunity. It may be a good idea to agree in advance, if possible, to interview the person with dementia alone.

In interview situations, there may be situations where it is difficult to find common understanding. Our article illustrates how people living with dementia and researchers often operate in different cognitive and experiential realms. For instance, participants may respond to questions in ways that reflect their lived experiences or memories rather than providing direct answers to the researcher’s queries. The fact that people with dementia may live in a different temporal or spatial reality than the interviewer makes the interview process complicated. Participants may talk about past events as if they are occurring in the present, mixing different time periods in their responses. While this can make it challenging for researchers to follow the narrative, it also highlights the importance of focusing on the participant’s meaningful experiences, as has been shown in previous studies (Beuscher & Grando, 2009). These narratives can reveal how individuals make sense of their changing world.

In our interviews, people with dementia sometimes described what they were capable of, even if other people knew it was not true. This raises important epistemological questions: must the interview account be “true” in the conventional sense to be meaningful? On the other hand, one might ask if everything is always true in an interview with a person who does not have dementia. Are we telling a similar interpretation of the reality when talking about something to a friend, to a researcher or to an occupational medical doctor? As in any interview, reality is partly co-constructed depending on the situation and the interlocutor. The meaning can also vary depending on what is being asked. Rather than trying to seek an objective truth, interviews should focus on meanings co-created between the participant and the interviewer – it is not the facts but the interviewees’ experiences that count (Westius et al., 2010). Understanding the intersubjective nature of the interview situation is crucial to obtain genuine knowledge of people with dementia.

While interview questions need to be formulated in an understandable and respectful way for people with dementia (Hulko, 2004), their responses may be unexpected, fragmented and irrelevant from a research perspective. Interviews with people with dementia may not always provide clear answers to research questions or results that are immediately applicable to the research at hand. Such variability emphasizes the importance of flexibility in interviews. Future research should also consider potential vicarious trauma for researchers working closely with people with dementia, as participants may share distressing experiences. Researchers must validate the responses of people with dementia, recognizing that fragmented or emotionally driven answers provide insight into their lived experiences. This approach maintains the dignity of people with dementia as active research participants. Hubbard et al. (2003) has emphasized how, in order to acknowledge the varied experiences of dementia, there is a need for diverse strategies tailored to individuals.

Cultural and social norms affect research aims and shape research practices, reflecting broader discourses and debates. To ensure that participants’ voices are included and heard meaningfully when interviewing people with dementia, even as their cognitive abilities decline, an interviewer must demonstrate sensitivity, respect, and flexibility (Digby et al., 2016). This approach enhances the ethical validity of research and strengthens the representation of people with dementia. Success in such interviews requires the researcher to be well-prepared, adaptable in framing questions, open-minded, and flexible in their approach.

Although this study benefits from the authors’ diverse backgrounds and direct experience of interviewing, it lacks the voices of racialized, ethnic, and sexual minority groups (Hulko, 2004), with participants primarily being drawn from the Finnish majority population. Addressing this gap remains an important direction for future research. Previous research has focused on the experiences and world of people with dementia in the early stages of the disease (Novek & Wilkinson, 2019; Zwijsen et al., 2016), but the data in this study also include people with middle- and late-stage disease, which is the strength of this study.

The number of people with dementia is already significant on a global level, but their voices have not been heard in societal issues as much as they should be. This article demonstrates that interviewing people with dementia is not only feasible at any stage of the disease, but can yield authentic insights when approached with appropriate methodological sensitivity. In our experience, as we have shown in this article, information obtained from interviews with people with dementia differs from that gathered from individuals without dementia. Because the person with dementia lives in the moment, responses are also bound up with the interview moment, the words used in it and the immediate, visible environment. We invite other researchers to consider epistemological and ontological questions about the knowledge that can be accessed in interviews with people with dementia.