Abstract
Background
Deaf individuals continue to face complex challenges in both accessing healthcare and obtaining information about dementia. Despite this, research into their perceptions of dementia and the need of tailored awareness programs remains limited. In response, a dementia awareness program specially designed for Deaf communities is being developed as part of the Erasmus+ project “DeSign”.
Objective
This study provides the groundwork for that initiative by exploring (a) what Deaf individuals in Austria, Germany, and Greece know and how they perceive dementia, (b) the current challenges in accessing information and healthcare, and (c) their preferences for the design of specialized, accessible dementia awareness courses.
Methods
Six semi-structured focus groups (two per country) were held in the respective national sign languages with 4–14 Deaf participants, including dementia experts, family caregivers, and general community members. Data were analyzed using inductive content analysis.
Results
Deaf participants from the general population demonstrated significant gaps in dementia knowledge, including misconceptions about early signs, causes, and risk factors. Dementia-related information in sign language was described as nearly non-existent. Participants highlighted the need for tailored awareness courses, covering dementia basics, as well as information on available specialized healthcare services and resources in their country. The preferred format for such a course should be delivered in sign language and incorporate culturally appropriate methods of information sharing.
Conclusions
Tailored awareness courses in sign language are crucial to address knowledge gaps and improve access to information for Deaf communities. This study provides the groundwork for developing such courses within the Erasmus+ project.
*DeSign: Raising Awareness for Dementia in Deaf Older Adults in Europe
Keywords
Introduction
Dementia and the need of inclusive awareness
The World Health Organization (WHO) has recognized Alzheimer’s disease and other related dementias as the “global public health crisis of the twenty-first century”. Approximately 57 million people were living with dementia worldwide in 2021, and this figure is projected to increase to 78 million by 2030 and to 139 million by 2050. 1 The importance of prioritizing dementia and dementia awareness, as well as promoting early diagnosis, treatment, and care of people living with dementia has been highlighted in the “Global action plan on the public health response to dementia 2017–2025”. 2 The 2022 World Alzheimer Report declares that obtaining access to dementia diagnosis, treatment, and care should be considered a human right. 3 Timely diagnosis offers not only the opportunity to reach out for services that can support a better quality of life for the people living with dementia but also the possibility of delaying the detrimental effects of dementia in everyday life by receiving the appropriate treatment and care. 4 Globally, strategies have been developed to fight against under-detection and under-reporting of dementia, while the notion of living well with dementia has been supported.
The role of friends and relatives in detecting the early signs of dementia has been highlighted. 2 Being able to recognize the early stages of dementia of a friend, relative, or community member can contribute to its timely identification. To promote this scope, public programs of raising awareness about dementia have been developed in 50 European countries. 5 Such programs and campaigns have been designed based on the needs of the general population. 6 However, not all individuals have equal access to information about dementia and opportunities to attend public programs for raising awareness. Studies have shown that people who belong to minority groups very often face obstacles in their attempt to gain information about dementia and timely access to care and support.7–9
The Deaf community and dementia-related challenges
Some of the minority communities that often face the above challenges in different countries worldwide are Deaf communities. The Deaf communities around the world constitute a group with a rare characteristic: They are groups of people with a disability, but they also belong to linguistic and cultural minorities. In particular, Deaf people are often perceived only from an audiocentric, medical perspective as suffering from hearing impairment or being people with a disability. Even though in audiological terms Deaf people are hearing impaired, such a perspective does not allow us to fully understand the specific characteristics, strengths, and needs of this population. 10 Nowadays, it is well documented that Deaf communities constitute cultural and linguistic minorities who use signed languages as their preferred means of communication and share common norms, values, history, and traditions. 11 The capitalized “D” is used to differentiate among the people who have lost their hearing and do not use sign language, and the people who use a sign language as a preferred means of communication and consider themselves members of the Deaf community, sharing the same cultural characteristics with other Deaf people.11–13
According to the United Nations, there are 70 million Deaf people who use one of the over 300 sign languages as theirnative language worldwide. 14 In Greece, the exact number of Deaf people who use sign language as their primary language is unknown. The Hellenic Federation of the Deaf (OMKE), Greece’s national Deaf organization, reports approximately 5,000 registered Greek Sign Language (GSL) users. 13 However, this number is significantly lower than the real number of Deaf people living in Greece, as it does not include either Deaf minors who attend school or those Deaf persons who, for various reasons, are not registered in any Deaf club (personal communication). Thus, it is assumed that around 10,000 Deaf people reside in Greece. 15 In Austria, approximately 10,000 people use Austrian Sign Language (ÖGS) as their primary language. 16 It is estimated that German Sign Language (DGS) is utilized by 80,000 people in Germany, a calculation based on the rule of thumb that one person per thousand is born congenitally deaf.17,18 That said, literature suggests that the number of Deaf individuals may be higher than assumed, as prevalence increases with age. While approximately 1.33 per 1,000 people are born deaf or hard of hearing, this figure rises to 3.5 per 1,000 by adolescence. 19
According to a recent review, the overall physical and mental health of the Deaf community is poorer than that of the general population. Deaf people face complex challenges in accessing healthcare services as well as health-related information, and they report that late diagnosis, misdiagnosis, and underdiagnosis are quite common among members of the community. 20 For instance, it is twice as likely for a Deaf person to live with depression compared to the general population, while higher rates of hypertension, obesity, and diabetes have also been reported.21,22 Due to the heightened prevalence of such conditions among Deaf people, they are at higher risk of developing dementia.20,23
However, there are no official reports on how many Deaf people live with dementia in Germany, Austria, and Greece. This lack of data is likely linked to persistent gaps in awareness, diagnosis, and access to linguistically and culturally appropriate tools. All three countries have begun to follow the footsteps of British initiatives, which have long emphasized culturally and linguistically adapted dementia diagnostics and awareness tools for the Deaf community.10,24 In Germany, researchers have recently completed the adaptation of the British Sign Language Cognitive Screening Test into DGS.24,25 The Erasmus+ project “DeSign” is now working toward similar goals in Austria and Greece by developing awareness material and adapting psychometric tools for the respective national sign languages (https://de-sign-project.eu/index.php/en/). However, these efforts are still in their early stages and have not yet been implemented at scale. Taking all of the above into account and considering the findings from other countries, it is likely that Deaf people across Germany, Austria, and Greece face barriers in accessing timely diagnosis, dementia education, and appropriate care. These structural gaps may contribute to lower awareness, under-detection, and unmet support needs within Deaf communities.
Human rights and the need to promote dementia awareness within Deaf communities
The right to the highest attainable standard of health is recognized as a fundamental human right by the United Nations Committee on Economic, Social and Cultural Rights. 26 Furthermore, the Convention on the Rights of Persons with Disabilities (adopted 2006) states in Article 8.1 that: “States Parties undertake to adopt immediate, effective and appropriate measures: To raise awareness throughout society, including at the family level, regarding persons with disabilities, and to foster respect for the rights and dignity of persons with disabilities.” 27 However, until today, there seems to be a lack of programs to raise awareness for dementia in the Deaf communities.
Designing inclusive dementia awareness courses for Deaf individuals in Germany, Austria, and Greece
This study was conducted within the framework of the project
Raising awareness of dementia in minority communities that use a different language from the majority population and/or share different cultural characteristics can be particularly challenging. Research findings suggest that information needs to be not only linguistically accessible through translation but also culturally adapted to the specific communities in order to be meaningful.7,30 Thus, when designing programs to raise awareness in the Deaf community, it is of vital importance to ensure that the information is adapted both linguistically and culturally.6,8,24,31 For instance, it has been observed that the use of storytelling, examples, role-plays, and visual aids is a culturally preferred way for conveying information to the Deaf community of the United Kingdom. 6 Such findings could be helpful when designing awareness programs that address the needs of a Deaf community. Recent initiatives in the United Kingdom, such as Dementia Information in British Sign Language, demonstrate how dementia awareness can be effectively promoted for Deaf sign language users. 32 However, comparable approaches remain limited in other European contexts.
Even though Deaf communities around the world share similar cultural characteristics and use visual languages, each Deaf community may differ in its relationship with the country’s majority. The availability of health-related information in sign language is not the same in every country, while the social policies employed by each country to facilitate (or not) Deaf people’s access to healthcare and health-related information may differ.33,34 Developing effective programs to raise awareness within the Deaf community should involve Deaf communities and Deaf researchers in the process, 35 thereby initiating a dialogue between hearing service organizations focused on dementia and the specific needs of Deaf communities in each country. These programs should be not only designed for the Deaf but must be co-created with the local Deaf communities themselves. 10 We therefore need to gain a deeper understanding of the perceptions of the Deaf population regarding dementia in each country, what may hinder a clear understanding of the disease, and which policies seem to facilitate it. We also need to combine the limited but existing research knowledge on dementia for other Deaf communities around the world with the experiential and professional knowledge of Deaf communities in Greece, Germany, and Austria, as well as the expertise of professionals working in the field of dementia.
Therefore, the present study aims to collect data from the Deaf communities in Greece, Germany, and Austria by conducting focus group interviews with Deaf individuals living in these countries. These interviews will provide participants with the opportunity to describe their understanding of dementia, explain why this understanding is clear or not, and suggest the best ways to disseminate information within each Deaf community.
The present study explores the above using the following three main research questions:
How do Deaf individuals in Austria, Germany, and Greece understand and perceive dementia? How do they describe their access to dementia-related information and the healthcare services in their respective countries? What do they expect from a culturally and linguistically accessible dementia awareness course, tailored to the Deaf community?
Methods
Design
This study employed a qualitative, exploratory design using focus group interviews with Deaf participants in Austria, Germany, and Greece. An inductive approach was chosen to allow key themes to emerge directly from participant experiences, without imposing predefined categories.
Data collection
Understanding and acquiring knowledge about dementia is not only a matter of using the appropriate language, but also of ensuring cultural equivalence for each Deaf community. 6 This study, therefore, paid close attention to exploring the Deaf lived experience of dementia while remaining culturally grounded and attuned to the Deaf norms of communication. We chose focus group interviews as the method of data collection due to their alignment with the collective communication norms of Deaf communities and their ability to support co-constructed dialogue around complex topics.6,36 This method fosters a culturally familiar and comfortable setting, encouraging deeper engagement and interaction among participants. 37
To guide the discussions, a semi-structured interview format was chosen. The development of the interview guide followed Helfferich’s guidelines, which involve collecting and then reflecting, deleting, and clustering open-ended questions into thematic blocks. 38 This allowed the research team to address the study's aims and research questions while ensuring the use of open-ended questions to provide room for the lived experiences of Deaf participants. Each country adapted and translated the guide into its national sign language, allowing culturally coherent interaction while preserving the thematic structure.
The focus groups were facilitated by Deaf researchers from each country’s team. The use of sign-fluent facilitators enabled close attunement to participants’ intended meanings, not only in linguistic terms but also through emotional nuance, facial expression, body language, and other visual-spatial features central to sign language interaction. 12 In Greece, the interviews were conducted by a bilingual hearing researcher fluent in GSL, in collaboration with a Deaf researcher who guided the conversation and supported participant engagement throughout the sessions. In Germany, each session was lead by a Deaf researcher with simultaneous interpretation in German spoken language, to ensure accessibility for the two hearing members of the research team. In both Germany and Greece, interviews were conducted online via Zoom, which allowed all participants to remain visually present and enabled simultaneous video recordings of signed interaction and audio recordings of the interpreter-mediated spoken language. In Austria, focus groups took place in person at a Deaf club in Vienna, without interpreters, as all interviewers were fluent in sign language; these sessions were video-recorded in sign language only.
Participants received information sheets and informed consent forms in plain written language (German/Austrian and Greek), accompanied by rewatchable sign language videos produced by Deaf researchers. In Austria, informed consent was also supported through a face-to-face interactive explanation. In all countries, participants were given the opportunity and time to ask questions in sign language before providing informed consent, in line with culturally and ethically appropriate practices. 6 Each focus group lasted approximately 1.5 to 2 h and followed the semi-structured interview guide to ensure consistent thematic coverage. All participants took part in one focus group session; there was no participant attrition.
Participants and recruitment
We recruited the participants between April and September 2023. For this purpose, the researchers contacted strategically relevant organizations and associations of the Deaf communities, as well as Deaf individuals who hold significant roles within the Deaf communities (community gatekeepers). 39 A purposive criterion sampling approach was employed across all three countries, where the eligibility criteria required participants to be at least 18 years old, identify themselves as members of the national Deaf community, use the national sign language as their primary mode of communication, and have either personal or professional experience with dementia.40–42
In line with Flower and colleagues, 20 we categorized Deaf participants as experts by profession (EbP), including healthcare professionals and service providers working with people living with dementia, or as experts by experience (EbE), such as family members or informal caregivers. However, due to the lack of Deaf dementia experts in Greece and limited availability in Austria, our sampling strategy evolved to include a third category: participants without prior dementia experience or non-experts (nE). Although this change introduced some variation in group composition, it followed the principles of maximum variation and adaptive sampling, enabling us to gather a wider range of lived experiences within Deaf communities.41,43 Individuals who were interested in participating and who came forward as a result of this approach continued to communicate with the researchers to make an appointment. In accordance with the prevailing best practices for qualitative research, the participants in the focus groups were organized such that participants with no dementia experience and those with dementia experience were not mixed. This approach was adopted to mitigate potential disparities in power relations, which could have otherwise led to impediments in the free flow of discussion and group interactions. 44
Sample composition and focus group interviews
Between May and September 2023, six focus group interviews were conducted in Austria, Germany, and Greece, with two groups in each country, each consisting of 4–13 Deaf participants. The total sample consisted of 43 participants.
The sample composition is depicted in Table 1. In Germany, two focus groups were conducted with Deaf dementia experts: Interview 1 included five experts by profession (5 EbP), while Interview 2 comprized three experts by profession and two experts by experience (3 EbP, 2 EbE). In Greece, one group consisted of community members with no experience in dementia care (5 nE), and another comprised of informal caregivers with close contact to Deaf people living with dementia who also served as gatekeepers to the Greek Deaf community (4 EbE). In Austria, one group included general community members (11 nE), and another brought together Deaf caregivers and individuals with close contact to dementia (13 EbE).
Sample composition of the focus group interviews.
N = 43. EbP: experts by profession; EbE: experts by experience; nE: non-experts.
Data transcription and analysis
The intercultural nature of the research team, consisting of both Deaf and hearing members, shaped not only data generation but also the way data were transcribed, analyzed, and interpreted. The signed language interactions constituted the primary data for this study. Depending on the available resources, teams worked either with direct video footage of sign language interactions and/or with simultaneous audio-recorded translations for transcription. These recordings were transcribed into written German or Greek. To address the risks of semantic and cultural loss when translating across modalities,11,45 a cross-checking process was implemented. Deaf and sign-language-proficient researchers reviewed the transcripts alongside the original videos to ensure that intended meanings and essential non-verbal elements, such as facial expressions and visual-spatial grammar, were preserved. 46 We utilized anonymized participant identifiers throughout the transcription process, and all video and audio files were permanently deleted after finalizing the transcripts, as a response to the visual anonymity challenges inherent to sign language research.12,35
Inductive qualitative content analysis was selected as the most appropriate approach for this study. 47 One key strength of this inductive approach lies in its openness: categories were developed directly from the signed narratives of Deaf participants, allowing for a more open and unbiased interpretation of the data.10,48 At the same time, the stepwise, rule-governed structure of Mayring’s approach enabled findings to be compared and ensured transparency and intersubjective verifiability across the multilingual, cross-national research team. 47 Analyses were carried out in the program MAXQDA 24. In each country, two researchers first analyzed their national data independently. They then met to reach a joint interpretation through discussion and comparison. Finally, all teams came together to agree upon a shared category system, which allowed for both local specificity and cross-country synthesis. Divergent perspectives were documented and retained for later discussion. 10
Ethical considerations
The study received ethical approval from the Ethics Committee of the Faculty of Behavioral and Empirical Cultural Sciences at Heidelberg University, Germany (AZ Teich 2023 1/1) as well as from the Scientific and Ethics Committee of the GAADRD (Approved Meeting Number: 88/05/04/2023) and the Ethics Committee of the Hospital of the Brothers of St. John of God, Vienna (Ethikkommission der Barmherzigen Brüder Wien), 2019. All participants were fully informed about the study's purpose and procedures and provided written informed consent prior to participation. Confidentiality and anonymity were safeguarded in accordance with the General Data Protection Regulation (GDPR) for research contexts.
Results
The results section presents the findings from the focus group interviews conducted in all three countries, organized according to the participants’ responses to each question in the common interview guide. For the first and second research questions, four main thematic categories were identified, while three categories emerged for the third research question. A summary of the main categories, their respective subcategories, and illustrative quotes for each research question is provided in the Supplemental Material.
Perceptions and understanding about dementia
To address the first research question, each focus group began with the opening prompt from the interview guide: “What does dementia mean to you, and how would you describe it?” Participants engaged in discussion, and the following categories emerged during the analysis (Supplemental Table 1).
Accurate knowledge about characteristics and manifestation of dementia
Perceptions and understanding of dementia varied among participants, especially among experts and non-experts. Regardless of profession and experience, all participants from all countries held a general understanding that dementia is a disease connected to forgetfulness and poor memory. Additionally, most participants underscored the role of cognitive stimulation in preventing dementia and the importance of keeping a socially and physically active lifestyle by maintaining social contacts, exercising regularly, and spending time outdoors. The understanding of the nE was mainly based on firsthand experiences, while some participants used unique visual metaphors as a means to describe dementia. For instance, a Greek participant utilized the metaphor of a puzzle: “I know that dementia is a disease where the brain is like a puzzle. When each piece of the puzzle is in place, the brain functions correctly, the person thinks clearly, and interacts properly with their environment” (Deaf participant, nE, Greece).
A more accurate understanding of dementia was reported by all EbP and some EbE, particularly regarding its causes of dementia, its symptoms, and progression. They also discussed strategies to prevent dementia, how to deal with the condition, and how to communicate with people living with dementia.
Inaccurate knowledge: lack of information, uncertainties and misunderstandings about dementia
On the other hand, uncertainties, misconceptions, and misunderstandings about dementia emerged during the group discussions. Many of the nE participants were unsure or puzzled regarding basic knowledge about dementia such as the warning signs, causes, and risk factors of dementia. Moreover, they often posed questions about the above, the cognitive abilities of people living with dementia, how dementia can be prevented, and what is the difference between dementia and Alzheimer’s disease. In some cases, participants reported being uncertain whether they misinterpreted the information they encountered, since it was not provided in sign language. Additionally, some interviewees held false assumptions and preconceptions about dementia. For instance, most nE participants believed that dementia is a normal part of aging, while others held misconceptions about what constitutes a risk factor for developing dementia and what the causes of dementia are: “Some people get dementia after a traumatic event, and they practice getting their memory back. This is post-traumatic dementia due to psychological reasons” (Deaf participant, nE, Greece).
Distinct characteristics of Deaf people living with dementia
In the course of the interviews, we could observe that participants from all countries highlighted unique traits of Deaf people living with dementia. Although some dementia symptoms are the same across both Deaf and hearing individuals, Deaf adults living with dementia face additional challenges compared to their hearing counterparts. Participants from all groups pointed out the greater risk of social isolation for Deaf people living with dementia, which can lead to language and communication deprivation: “There are so many obstacles! For the Deaf with dementia, these obstacles double. They live alone and they cannot communicate. There is no one to help them with communication, and nurses and doctors do not know sign language” (Deaf participant, ΕbE, Greece).
The interviewees also noted changes in language and EbPs from Germany described language symptoms specific to sign language users. All mentioned a continuous linguistic degradation of sign language, e.g., a reduced vocabulary and increasing sign-finding difficulties leading to odd choices of signs or repetitions. Para-verbal aspects such as gestures and facial expressions also often showed reduced intensity or clarity. A German expert described this as more “blurred” signing (Deaf expert, EbP, Germany). EbPs also noted a pattern of language reversion, often known as code-switching, in which individuals revert to the first language they acquired in childhood. 49 Deaf experts reported that various Deaf seniors began using only spoken German or Sign Supported German. They elaborated on this by explaining that Deaf seniors in Germany grew up with oral education, where sign language was forbidden and discouraged in schools (Deaf Expert, EbP, Germany). Concerning more advanced stages of dementia, participants shared their experiences with the loss of speech and communication, where the use of body language becomes increasingly important.
Additionally, the interviewees emphasized the impact of aging on mobility, which results in fewer opportunities to engage in communication with their peers in sign language. One participant explained how her father-in-law, once active, suffered greatly from being confined to his home after losing his driver’s license due to dementia. Deaf individuals often live scattered among predominantly hearing neighborhoods and communities, where language barriers limit their opportunities for communication.
This issue is also prevalent in regular nursing homes, where Deaf residents live among hearing individuals and experience a significant lack of communication. As a result, Deaf interviewees from Austria expressed their reluctance to move to such facilities later in life (Deaf participant, EbE, Austria). Additionally, interviewees describe the challenges in forming connections as being more pronounced for Deaf individuals than for their hearing peers. Participants observed that the ease of communication available to hearing individuals makes it less likely for them to experience the same level of isolation: “It is perhaps easier for hearing people because they have contact with others more quickly. I think it's more difficult with Deaf people” (Deaf participant, nE Austria).
On top of the above, dementia seems to be a taboo topic within the Deaf communities. As an EbP from Germany noted, “Dementia and deafness are taboo. And people who are affected by it are quickly ostracized” (Deaf Expert, EbP, Germany). Another EbP highlighted the importance of raising awareness among Deaf people and helping them to understand that experiencing dementia should not cause feelings of shame or embarrassment.
Emotions associated with dementia
Participants frequently expressed emotions about dementia, attributing their feelings not only to the challenges of living or caring for someone with the condition itself but also to the limited or non-existent services available for Deaf individuals. Carers often felt overwhelmed and helpless, remembering their experiences of caring for a person with dementia, while fear and worry were the most common emotions that emerged from the data, followed by sadness and feeling ashamed. An EbE from Greece explains: Now I am really scared about my future. I’m afraid that something will happen to me, and no one will be there to help. There is no system. I wish there were an organization which could help the Deaf with issues like this. (Deaf participant, EbE, Greece)
Access to information and healthcare services
All categories and subcategories are depicted on Supplemental Table 2 with illustrative quotes.
Experiences regarding the access to dementia-related information
Access to information
German Deaf experts who work with people living with dementia referred to their foundational education, such as nursing or hospice training, where dementia care was integrated into the curriculum. Additionally, interviewees noted that using sign language interpreters during training sessions and lectures is essential for ensuring full accessibility to the information presented. Furthermore, some experts mentioned specific training initiatives, such as those organized by the University of Cologne, which provided specialized education on dementia and related topics. Another significant source of information was their involvement in specialized committees or expert groups focused on dementia, where some were already acquainted with one another. In these groups, they engaged in discussions, attended meetings, and collaborated with other experts. These interactions provided them with up-to-date information and enabled them to build a network of contacts with whom they could consult when needed.
The accessible information about dementia for EbE and nE varied significantly by country, with most participants reporting limited resources. German and Austrian interviewees mentioned a few available resources accessible to the Deaf such as reading materials, websites featuring sign language films, and content in easy-to-understand language. German experts have played a key role in developing resources, including care courses. These efforts have led to the creation of some support services, but overall, the availability of information remains limited.
Challenges in accessing information
Greek participants highlighted the lack of information sources in GSL, while firsthand experiences were frequently mentioned as their primary source of information about dementia. They also relied heavily on informal sources of information about dementia, such as media sources, movies, documentaries, and the internet, all of which were in oral or written Greek. The Greek participants reported a complete lack of linguistically accessible information and explained the challenges Deaf individuals face with reading comprehension of written material: Because most Deaf people lack information about medical issues … much more than hearing people do. Most of the information online is in the form of complex written text which for most of us is hard to understand and then, when we ask each other for clarifications we all have a different understanding of what the text says. There is no source of understandable information (for us). (Deaf participant, nE, Greece)
Experiences regarding the access to health-care services
Availability of accessible healthcare services for Deaf individuals with dementia also varies by country and is marked by the uneven geographical distribution of specialized services. Participants from all countries mentioned several challenges regarding their access to healthcare, which involved cultural and linguistic challenges, structural barriers, interpreter problems, and personal barriers.
Access to healthcare
Austrian participants reported that in Vienna, there are specialized healthcare services available for the Deaf community. These include a central retirement home that offers care specifically for Deaf individuals, an outpatient clinic serving as a central contact point for the Deaf community, and a clinic that provides diagnostic services.
In Germany, there are still few, but established services such as the family caregiver support groups and nursing homes in larger cities, e.g., Essen and Hamburg, that specialize in the care of Deaf older adults, including those with dementia. Additionally, there are two clinics, located in Lengerich and Erlangen, that offer diagnostic services in sign language. However, the tests used are still primarily normed for hearing individuals. Participants reffered to efforts at the University of Cologne to validate a dementia screening test in DGS.
In Greece, there are no specialized healthcare services for Deaf individuals with dementia, and medical professionals do not use GSL. The Greek interviewees noted that they sometimes use professional interpreters to facilitate communication when they visit healthcare services. However, in many instances, they have to rely on their relatives and/or friends for support, or they visit their doctor on their own, trying to communicate via lip-reading, writing, and the use of body language.
Challenges to accessing healthcare services
German and Greek participants described linguistic barriers and communication difficulties, such as the lack of or limited accessible services for the Deaf, problems with timely and reliable diagnosis, and additional communication challenges that Deaf people living with dementia face. They reported that most healthcare professionals are unfamiliar with adjusting to the communicational needs of Deaf people, while Greek interviewees explained that most healthcare professionals are unfamiliar with sign language, Deaf culture, and/or how to effectively communicate with a Deaf person. Across all countries, participants reported negative healthcare experiences, often feeling dismissed or underestimated: There was, for example, a person who was in the hospital and had seriously deteriorated but needed treatment. The doctor came to run some tests, and I asked him to wait until an interpreter was present. But he kept talking directly to the person the entire time, who then became frightened—I could see it in their face. The person completely withdrew, only nodded, and didn’t respond at all anymore. Then the doctor said, ‘There seems to be a psychological disorder,’ and immediately pulled out a prescription for psychiatric medication. I stepped in right away and said, ‘Wait a minute! This person has dementia.’ (Deaf expert, EbP, Germany)
Despite the differences in organizational levels, participants from all three countries mentioned a genuine lack of services and resources specific to the Deaf communities, which may hinder equal access to healthcare services. Austria and Germany provide services for the Deaf. However, they are limited and insufficient to meet the needs of the Deaf population in both countries. Moreover, the uneven geographical distribution of accessible services in these countries was repeatedly highlighted by the German and Austrian interviewees. Also, regional differences and poorer service provision in the rural areas were frequently mentioned as challenges faced by Deaf individuals. Especially Greece lacks services tailored to the needs of Deaf people, and there is no formal organization they can turn to in case they develop dementia. The statement by an Austrian participant illustrates this unsatisfactory situation: “It would be nice if there was a retirement home for Deaf people from all over Austria. It's bad that everyone lives so isolated” (Deaf participant, nE, Austria).
Participants from all countries stressed the need for additional training of interpreters to deliver high-quality services to Deaf people living with dementia. The Greek participants referred to a number of problems linked to the use of interpreters, such as the barriers regarding the organization of hiring an interpreter and the challenge of booking an appointment when all parties (patient, doctor, and interpreter) would be available. Additionally, they raised concerns about the quality of interpreter services and past confidentiality breaches, which discouraged them from using interpreters for sensitive personal issues, such as doctor visits. Moreover, Austrian participants mainly referred to the personal barriers that some Deaf with dementia face such as the denial of symptoms and the refusal to visit a doctor to be examined or to move to a nursing home.
Impact
Isolation and marginalization
Participants from all three countries reported that one of the main consequences of poor access to information and healthcare services is the isolation and further marginalization of Deaf people who live with dementia. Some Deaf adults never reach the system and remain undiagnosed for many years or even until they die, while others live in nursing homes isolated from other Deaf people and deprived of communication, which leads to a faster deterioration of their condition.
Active role of the local Deaf community and emotional distress
In all three countries, the local Deaf communities were recognized as playing a vital role in supporting older Deaf adults living with dementia. This role was especially emphasized by Greek interviewees, who pointed out the severe lack of formal healthcare structures in Greece. Interviewees expressed their concern that they will not receive proper treatment and care in case they themselves or a loved one develops dementia. The Greek participants explained that older Deaf adults have nowhere to turn for support that meets their needs. Because of this, they offer support to older members of the Deaf community. This support includes keeping an eye on them, providing companionship, assisting with daily tasks, and organizing social activities. A Deaf Greek volunteer at the annual trip to a nearby island described her experience supporting the Deaf older adults who participated in the event: I went with them to the beach and walked around the island with them. I stayed to keep them company, chatting in sign language about different things. For them, signing is really important, and they were happy I was there to talk. Everything felt okay, but I was also worried—they kept forgetting things. I had to look after them and always be very careful so nothing bad happened. (Deaf participant, nE, Greece)
Deterioration of physical and mental health condition
Another consequence mentioned by German EbPs is the fast deterioration not only of dementia, but also of the general mental state of Deaf individuals. Participants expressed their belief that they face discrimination from hearing individuals and received inferior treatment compared to their hearing counterparts. Some interviewees also noted that the lack of dementia knowledge within the Deaf community results in difficulty in recognizing the warning signs of dementia in their friends.
Proposed solutions
Participants across the interviews proposed several solutions to address current challenges in the care for Deaf individuals with dementia. A key suggestion was to raise awareness among care staff about the specific needs of Deaf people in order to improve access to the existing health care system. This includes incorporating courses about Deaf culture and sign language into the curriculum of healthcare studies to ensure better communication and care as well as optimizing the regulation and funding for sign language interpreters. On a structural level, participants called for the expansion of healthcare structures and nursing staff specialized in Deaf care, like personal assistants for Deaf people living with dementia. There was also a strong desire to establish care homes where Deaf adults could live and communicate in their preferred language, similar to successful models in other countries, such as the Netherlands. Participants emphasized that this should also be established in Germany and explicitly called for a legal right to access Deaf-specific care homes. Another proposal was to strengthen the engagement of the Deaf community by building support networks and organizing community initiatives, rather than relying exclusively on legislative changes or institutional improvements.
What is important for a dementia course for Deaf people?
All categories and subcategories are depicted in Supplemental Table 3 with illustrative quotes.
Information needs
Respondents from all three countries listed the topics related to dementia that they would be more interested in being informed about. Apart from the general need to broaden their theoretical knowledge about dementia, including risk factors, causes, symptoms, types of dementia, and difference between dementia and Alzheimer's, they also expressed a desire to learn more about practical issues. Specifically, they wish to understand how to prevent dementia, recognize its warning signs, and discover appropriate ways to interact with or care for people with dementia.
A key element of dementia awareness programs should include bridging the gap between Deaf communities and the few existing dementia services in Germany and Austria by increasing awareness of their availability, such as Deaf-led counseling by Deaf EbPs or information in sign language online, which currently remain partially unknown by Deaf people. In Greece, where such tailored services and Deaf EbPs are not yet available, raising awareness involves highlighting the urgent need for culturally and linguistically accessible support structures that provide counseling, assessment, treatment, and care for dementia, ensuring accessible pathways to support when needed.
Cultural and linguistic adaptation, barriers and facilitators of access
Participants emphasized the importance of delivering information directly in sign language to ensure the training and information materials are linguistically accessible to Deaf people. They also explained that interactive formats of information delivery, which incorporate examples, case studies, and visual materials, are culturally appropriate and effective ways to disseminate information within Deaf communities. They also preferred courses organized into smaller groups that allow for more individualized discussions and one-on-one meetings with Deaf individuals: I would like to add that when there is available information in sign language it is much more interesting than reading plain texts written by hearing people. This can be a bit boring. When information is presented in sign language it is much more interesting and the exchange of information within a group is much more interactive and pleasant. (Deaf participant, nE, Greece)
In addition to formal courses, participants from all countries emphasized the value of short videos and images with key information about dementia. This visual material created in sign language could be disseminated through social media platforms, television, and the internet. Respondents highlighted that these brief and engaging videos would be a culturally effective and linguistically appropriate way to help raise awareness among Deaf individuals of all ages, given the widespread use of social media within the community, including the older Deaf people. Participants also emphasized the need to create a safe, stigma-free environment where individuals feel comfortable seeking help without fear of judgment, because the close-knit nature of Deaf communities can lead to challenges such as the spread of rumors and the stigma associated with dementia.
Discussion
This study explored the experiences and needs of Deaf individuals residing in three European countries—Austria, Germany, and Greece—in relation to dementia awareness and access to healthcare systems. The overarching aim was to contribute evidence toward the development of culturally meaningful dementia awareness seminars for the Deaf communities. Although country-specific differences emerged, particularly regarding the structure of healthcare systems and the availability of accessible information, a shared experience across all three contexts was the presence of persistent inequalities in accessing healthcare services and the lack of comprehensible information about dementia.
Our study identified several challenges faced by Deaf individuals including communication difficulties, misunderstandings within healthcare settings, undertreatment, and social isolation of Deaf individuals with dementia. These issues appear to reflect broader patterns found in other relevant research studies regarding the engagement of Deaf people with healthcare services. 50 Current research in the field consistently demonstrates that Deaf people worldwide face significant disparities in their access to the healthcare system and health-related information and that they have poorer physical and mental health outcomes.6,20,51 Our participants provided explanations for why this is happening as well as their views on how it could be changed.
The use of sign language and a basic understanding of the Deaf culture were consistently emphasized by participants across all three countries as essential for enabling effective communication with healthcare professionals and gaining access to information. In Austria, participants reported more inclusive healthcare services in Vienna, where a retirement home for the Deaf exists, and a hospital has established a specialized ward in which both Deaf and hearing staff collaborate and communicate in ÖGS. In addition, outpatient wards for Deaf patients are available in other major cities such as Linz, Graz, and Salzburg. However, Deaf interviewees stressed that in the southern parts of Austria as well as in rural regions more generally, such infrastructures are still missing, which leads to uneven access across the country. Broader Erasmus+-funded initiatives have sought to improve awareness of sign languages within education, but comparable programs in healthcare or public administration are still lacking.
A comparable picture emerged in Germany, where the Deaf community is described as a geographically dispersed linguistic minority, 18 with specialized healthcare services concentrated in urban areas such as Hamburg and Essen, leaving rural regions underserved. While legal recognition of DGS since 2002 has guaranteed interpreter rights,52,53 access to and organization of an interpreter is often hindered by administrative hurdles, while interpreter availability varies regionally. Complementary efforts to raise awareness among medical professionals for the specific needs of Deaf people have been limited; one notable example is the Deaf awareness workshop named “Breaking the Silence”, implemented at Leipzig University in 2020 and evaluated in 2021, which significantly improved medical students’ skills and confidence in communicating with Deaf patients. 54
In Greece, by contrast, no comparable infrastructures or specialized services exist. Deaf participants from Greece reported numerous communication and cultural barriers when using healthcare services, as there are currently no healthcare facilities that address their specific needs. There are no services provided in sign language, and they noted a general lack of Deaf awareness among medical professionals. As a result of this situation, respondents expressed elevated feelings of anxiety, lack of confidence in future support in case they develop dementia, and they felt underserved and discriminated against. During 2022 and 2023, the National Center for Public Administration and Local Government (EKDDA) in collaboration with the Hellenic Federation of the Deaf and Deaf trainers, undertook initiatives to enhance communication between public sector employees and Deaf or hard-of-hearing individuals through the implementation of training seminars entitled “Greek Sign Language for Public Servants—Level 1”. 55 This initiative, led by the Hellenic Federation of the Deaf, represents a significant effort to promote social inclusion and strengthen communication competencies within frontline public services, and its results remain to be seen.
Access to information about dementia was generally considered problematic by most of our focus group participants, as they reported having limited or no information sources tailored to their linguistic and cultural needs. Our findings indicate that Deaf individuals express a strong desire for increased access to information about dementia in sign language and prefer awareness seminars to be conducted in sign language, either face-to-face in local Deaf clubs or online, emphasizing the need for both community-based and remote formats depending on the geographical context. For example, in Greece, Deaf individuals tend to be concentrated in urban centers such as Athens, Thessaloniki, and Larissa, making in-person seminars in Deaf associations highly strategic. In contrast, Germany's Deaf population is more geographically dispersed, making a hybrid model (online and in-person) essential for equitable access. 56
Crucially, the content must go beyond general awareness. As in other studies 10 Deaf participants emphasized the need for practical, sign language-based information on what dementia is, how it manifests, and where to turn for help. They wanted clear, actionable guidance on where to find sign language resources and how to access specialized diagnosis, care, and counseling services. Participants also stressed that such information should be delivered in culturally appropriate ways—for example, through short, visually engaging, and interactive sign language videos that ensure clarity and ease of understanding. This finding aligns with the results of the first research question, which investigated how Deaf individuals in Austria, Germany, and Greece perceive and understand dementia. Deaf participants often gave visual metaphors to explain dementia, for example, comparing the brain to a puzzle that gradually loses its pieces or to metal that slowly rusts. Visualizations such as these are likely enriched by the visual modality of sign language and the cultural experience of Deaf people, reflecting a distinctly visual way of perceiving and understanding the world.11,57 This highlights the importance of integrating more visual content and sign language-based materials into dementia awareness courses, ensuring they reflect the communicative preferences of Deaf communities.
These preferences have direct implications for the development of dementia awareness seminars, including those in the “DeSign" project. Our findings align with previous studies on dementia knowledge within Deaf communities,6,8,58 and reflect broader best practices for minority health interventions, which emphasize incorporating culturally appropriate strategies in study designs when the interventions target a minority group as the end beneficiary of the interventions. 7 Together, these insights will directly inform the design and implementation of the dementia awareness seminars developed within the “DeSign" project. Awareness raising is not simply about providing information—it must be culturally embedded, visually accessible, and linked to tangible services that are relevant to the target audience. In this way, it can spark both individual empowerment and collective systemic change.
A key consideration in ensuring such accessibility is the medium through which information is delivered. Despite the tendency among hearing individuals to overestimate Deaf people's access to written and spoken language, 18 participants in our study explained that understanding information presented in written form, especially when it involves medical terms, can be problematic and is often misinterpreted. At best, this leaves Deaf individuals uncertain about whether they have correctly understood the content. Our findings are consistent with previous research on literacy skills of Deaf people, which indicates that a high percentage of d/Deaf individuals exhibit limited reading and writing skills, particularly in reading comprehension.59–62 These literacy barriers also affect health information: In one Australian study, only 9 out of 72 Deaf adults felt confident in understanding written preventive and ongoing healthcare information. 63 Therefore, written information alone should not be assumed to be an accessible means of communication for the Deaf community; this must be considered when developing awareness seminars, campaigns, and when engaging with Deaf people in general.
The current experiences of Deaf individuals, characterized by limited access to tailored health information and unequal access to healthcare services, mirror the experiences of other historically underserved minority groups and are best understood as the outcome of complex and historically rooted dynamics. 7 The above findings should be interpreted in light of the long-standing relationship between Deaf communities and the medical community, in order to better understand the persistent disparities Deaf people face and to inform strategies for change. Historically, the medicalization of deafness, alongside practices such as oralism and the systematic prohibition and stigmatization of sign language, has contributed to the pathologization of Deaf identity and the undermining of cultural and linguistic affirmation. 11 This legacy has fostered a sense of disempowerment and mistrust toward medical professionals. The prevailing medical epistemology, which often conceptualizes Deaf individuals as merely hearing-impaired persons with a deficit to be corrected, has narrowed the perspective through which Deaf people’s needs are understood and addressed. This framing has, in turn, contributed to the systemic marginalization of Deaf individuals within healthcare systems.
Recent studies on Deaf and dementia further demonstrate that Deaf people continue to encounter significant communication barriers, cultural invalidation, and a lack of accessible information, all of which heighten their disappointment and avoidance to use healthcare services as well as their sense of isolation and vulnerability.8,21,50,64 These patterns suggest that beyond individual challenges, there exists a collective psychological imprint within the Deaf community, shaped by repeated experiences of exclusion and systemic neglect, which in most cases continue until the present day. This phenomenon may be understood as a form of collective trauma associated with the community's long-standing interaction with healthcare systems. Recognizing this legacy is essential in reshaping healthcare policies and practices to be linguistically and culturally inclusive.
The Deaf communities in our study appear to be caught in a vicious, self-reinforcing cycle: healthcare systems that lack linguistic and cultural competence generate negative experiences for Deaf individuals, which in turn lead to a certain mistrust among Deaf individuals and avoidance of medical care. This lack of engagement, in turn, further perpetuates healthcare providers’ limited awareness of the actual demand for Deaf-accessible services and their insufficient understanding of the Deaf community's cultural and linguistic needs. As a result, services remain underdeveloped and ill-equipped to offer Deaf-friendly care, thereby further reinforcing disengagement among Deaf individuals. Our findings closely mirror those of previous studies in the United Kingdom, which similarly describe how systemic exclusion leads to disengagement, which in turn reinforces invisibility, inaccessibility, and continued marginalization within the healthcare system.8,10
Breaking this self-reinforcing cycle requires a structural shift of the healthcare system toward Deaf-inclusive policy and practice. First, information must be developed with and by Deaf community members, ensuring accessibility and cultural relevance, while incorporating visual and interactive methods that align with the community’s strengths and values, as proposed by the participants in this study and prior research.6,10 Raising dementia awareness among Deaf communities can enable individuals to take preventive measures and recognize warning signs, thereby supporting early detection in line with national dementia strategies.65,66 Awareness about how to deal with persons living with dementia also reduces the misconceptions and stigma around dementia, making it easier for individuals and families to seek help, talk openly about the condition, and access support without fear of judgment or shame.
However, while raising dementia awareness within the Deaf community through culturally and linguistically tailored strategies is vital, this alone is not enough to address the wider inequalities in healthcare access. A meaningful approach must be multidirectional. Therefore, it is vital that healthcare professionals are trained to understand Deaf culture, communication norms, and the specific healthcare barriers that Deaf people face, in order to understand their specific needs and experiences within the healthcare system. This builds cultural competence among healthcare professionals, fostering positive relationships with Deaf patients and developing a culture of inclusivity. 22 Existing mainstream dementia services in all three countries should be reviewed and enhanced for accessibility. 58
At the same time, structural barriers within healthcare systems must openly be acknowledged and addressed. In Greece, there is still a lack of both centralized and community-level Deaf-specific services. In Germany and Austria, regional responsibility for healthcare has led to uneven service provision. To address such disparities, specialized service centers for Deaf seniors with dementia have been proposed in Germany, supplemented by online platforms to reach geographically dispersed communities. 56 Tailored diagnostic, care, and counseling services should not be confined to urban centers but extended to where Deaf people actually live. Digital tools can help bridge infrastructural gaps in underserved areas. Participants in our study also highlighted that long-term improvements require collective engagement and network building. As one German participant put it: “It’s the same situation here. You need to bring in the regional Deaf association or the national Federation of the Deaf. You can’t fight this alone—you have to build a network” (Deaf expert, Germany).
Finally, without greater public awareness of the cultural and linguistic barriers faced by Deaf individuals, these systemic gaps will remain invisible—and unaddressed. Yet even small-scale interventions can trigger deeper perceptual change. This multidimensional, systemic shift could probably disrupt the cycle and establish healthcare systems that genuinely serve marginalized communities.
Strengths and limitations
Our research had several strengths that should be highlighted. First, both Deaf and hearing researchers collaborated throughout the entire research process. This Deaf-led, mixed-team approach informed all phases of the study, from conceptualization and data collection to analysis and interpretation, ensuring linguistic and cultural relevance at every stage and following participatory principles of inclusion and collaboration.35,67 Second, we employed a data collection method aligned with cultural preferences in the Deaf community: focus group interviews conducted in national sign languages and moderated by Deaf or sign-fluent facilitators. 6 Third, by collecting in-depth qualitative data from three different European countries, the study provides valuable insights into how national policy contexts and health systems shape the experiences of Deaf people when accessing dementia-related information and services.
Nonetheless, we acknowledge that this research study also has a number of limitations. Originally, purposive criterion sampling was applied across all countries, where only Deaf participants with personal or professional experience of dementia (EbEs, and EbPs) were sought. However, due to the absence of Deaf dementia experts in Greece and limited availability in Austria, the study design required adaptive sampling in response to contextual constraints, and nE, general community members were also included. This led to uneven group compositions, with Germany including only expert participants, while Austria and Greece included a broader mix. Although this uneven composition partially limits cross-country comparability, it reflects a responsive and context-sensitive sampling strategy.41,42 Such flexibility is often necessary in culturally embedded research with minoritized linguistic communities, ensuring feasibility and relevance.10,48 Including Deaf community members without prior dementia experience also broadened the range of lived experiences and perspectives and helped align the “DeSign” project's aims with the real needs of Deaf communities. Given the small size of the national Deaf community and the high visibility of individuals within the expert group, demographic data of the participants were not reported in order to minimize the risk of participant identification. 35
Another methodological limitation lies in the different interview formats across countries: while focus groups in Germany and Greece were conducted remotely via Zoom, those in Austria took place in person. The differences may have influenced group dynamics, depth of discussion, and the naturalness of respondents’ answers. In-person settings can support more fluid interaction, while the Zoom format allowed for high-quality visual recordings with clear views of facial expressions and signing space, which are crucial for sign language analysis. These contextual differences should be considered when comparing findings across settings.
Additionally, the translation process posed a significant challenge
A further limitation concerns the dissemination of this research. Although it was conducted with and by Deaf researchers and participants, its publication in written English still relies on a format that many Deaf readers cannot easily access. This paradox reflects the same communication barriers discussed throughout this study and shows how language barriers also affect the way research is shared. Research about Deaf people is often published in written form and therefore not easily accessible to Deaf community members. 35 While sign-language-based dissemination would be a fairer approach, current academic and funding systems rarely make this possible.
Conclusion
This qualitative study is the first to conduct focus group discussions with Deaf participants from Greece, Austria, and Germany, including Deaf dementia experts such as healthcare professionals, informal caregivers, and community members without prior experience with dementia. The aim was to explore perceptions of dementia, access to information and healthcare, and to contribute evidence to the design of culturally appropriate dementia awareness seminars. This research was carried out within a collaborative, intercultural framework that involved both Deaf and hearing researchers across all three countries.
This study makes several new scientific contributions to the literature on dementia and Deaf communities. Firstly, this is the first study to systematically examine the perspectives of Deaf people on dementia awareness and access to healthcare in three national contexts: Germany, Austria, and Greece. For the latter two countries in particular, the study provides new empirical data for which no comparable research results were previously available. Secondly, it identifies both common and country-specific patterns and shows how health care systems, access to interpreters, and community structures shape access to information and care differently in each country. Thirdly, while the preference for sign language-based, visually accessible information has been documented previously, this study shows that the preferred formats and delivery channels are locally specific and depend on the dispersion of the community and the infrastructure. Finally, the findings interpret current inequalities as part of a historically rooted, nationally specific cycle of marginalization and alienation. This cycle is shaped by each country's legacy of oralist education, systemic neglect, and underdeveloped deaf-specific services, and it points to the need for culturally competent educational programs and country-specific structural reforms in healthcare.
The findings of this study underscore the clear need for culturally and linguistically appropriate dementia-related seminars, which are both necessary and positively received by Deaf communities across all three countries. Simultaneously, it is crucial for the medical community to shift its perspective on Deaf individuals—from viewing them merely as people with hearing impairment to recognizing them as members of a linguistic and cultural minority. The combination of language barriers and cultural invalidation—however unintentional—contributes to the ongoing marginalization of Deaf patients and Deaf people living with dementia. Broadening our perspective to view Deaf people not only as people with a hearing impairment but also as members of a linguistic and cultural minority is vital to promote equitable access to healthcare services and health-related information.
Supplemental Material
sj-docx-1-alz-10.1177_13872877261427464 - Supplemental material for Exploring the perceptions and needs of Deaf communities in Austria, Germany, and Greece for developing culturally and linguistically appropriate dementia training courses
Supplemental material, sj-docx-1-alz-10.1177_13872877261427464 for Exploring the perceptions and needs of Deaf communities in Austria, Germany, and Greece for developing culturally and linguistically appropriate dementia training courses by Ioanna Antigoni Angelidou, Tarsitsa Ntova, Marianna Tsatali, Ege Karar, Doris Hoffmann-Lamplmair, Romeo Seifert, Lukas Nerat, Kyriaki Chatziavanidou, Patrick Martinetz and Birgit Teichmann in Journal of Alzheimer's Disease
Footnotes
Acknowledgements
We are deeply grateful to the members of the Austrian, German, and Greek Deaf communities who took part in the focus group interviews. Their contributions were essential in generating the insights reported here. We would like to thank Taisiya Baysalova for proofreading the manuscript in English and Florian Melchior for taking part in the formal analysis of the German interviews. This research study is independent, and the views expressed in this publication are those of the authors.
ORCID iDs
Ethical considerations
The study received ethical approval from the Ethics Committee of the Faculty of Behavioral and Empirical Cultural Sciences at Heidelberg University, Germany (AZ Teich 2023 1/1), as well as from the Scientific and Ethics Committee of the GAADRD (Approved Meeting Number: 88/05/04/2023) and the Ethics Committee of the Hospital of the Brothers of St. John of God, Vienna (Ethikkommission der Barmherzigen Brüder Wien), 2019. All participants were fully informed about the study's purpose and procedures and provided written informed consent prior to participation. Confidentiality and anonymity were safeguarded in accordance with the General Data Protection Regulation (GDPR) for research contexts.
Consent to participate
The consent process was designed to accommodate different communication needs. Plain-language information sheets and consent forms were distributed in German and Greek, and supplemented by sign language video explanations developed by Deaf researchers. Participants in all three countries were able to clarify questions in sign language with a Deaf team member prior to giving written consent; in Austria, this was further supported by an in-person interactive discussion.
Consent for publication
Not applicable
Author contribution(s)
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research paper was supported by the Erasmus+ project “DeSign—Raising Awareness for Dementia in Deaf Older Adults in Europe” (Grant/Award No. KA220-ADU-5821C986), funded by the European Commission (
) and by a doctoral scholarship of theHans Böckler Foundation, Germany, awarded to I.A.A.
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: B.T. and M.T. are Editorial Board Members of this journal but were not involved, or had access to any information regarding the peer review of this paper. The remaining authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data availability statement
Anonymized illustrative excerpts from the focus group transcripts are provided in the Supplemental Material. The full datasets associated with this article are not publicly archived due to confidentiality considerations, but may be accessed by contacting the first authors T.N. and I.A.A.
Supplemental material
Supplemental material for this article is available online.