Alzheimer Disease and Related Dementias in the Deaf Community: A Scoping Review

Abstract

Despite Alzheimer disease and related dementias/disorders (ADRD) being a substantial public health concern, the Deaf community remains underrepresented in ADRD research. We examined the extent and nature of existing literature on ADRD in the Deaf community. We conducted a scoping review following Arksey and O’Malley’s framework, adhering to the guidelines of the Preferred Reporting Items for Systematic Reviews and Meta-analyses. We searched 7 databases for peer-reviewed studies published in English, with no restrictions on publication date or study design. Inclusion studies addressed ADRD within the Deaf community and examined aspects such as diagnosis, care, and communication. Our search identified 435 articles, of which 16 met the inclusion criteria. Studies primarily originated from the United Kingdom and Finland, followed by the United States. Most used qualitative methodologies and explored lived experiences and communication barriers. Common themes included limited access to culturally competent care and caregiving challenges. Few studies highlighted diagnostic interventions but noted a general scarcity of resources tailored to Deaf populations. Notable gaps emerged in geographic focus, the range of studied variables, and the lack of validated sign language–based diagnostic instruments and interventions. We recommend expanding research beyond the Global North (ie, higher-income industrialized countries with greater access to resources), incorporating more longitudinal and intersectional approaches, and tailoring resources for Deaf communities. The review underscores the need for culturally competent care, improved diagnostic tools, and policy reforms to address ADRD-related disparities in the Deaf community. Future research should prioritize inclusive methodologies and community-driven interventions to enhance health outcomes and equity for Deaf individuals affected by ADRD.

Alzheimer disease and related dementias/disorders (ADRD) are debilitating terminal conditions that impair one’s memory, thought processes, and functioning. ¹ Worldwide, ADRD affect >55 million people, but that number is expected to rise. ² Because of their widespread impact and prevalence, ADRD are viewed as a substantial public health issue.^3,4 Yet, within ADRD research, a continuing problem stems from homogenous sampling, resulting in threats to external validity and generalizability.^5-8 As a result, racially, ethnically, and linguistically diverse groups are underrepresented because of barriers such as limited access to diagnosis, exclusionary inclusion criteria, and medical mistrust.^9-12 Thus, existing research reflects a narrow segment of the population, limiting our understanding of groups at high risk of ADRD, such as the Deaf community. Here, the term Deaf is used in an inclusive manner to refer to a population of people who identify as Deaf culturally. ¹³ Deafness, from a cultural perspective, is not merely defined by hearing loss but also by membership in a linguistic and cultural community, in contrast with a medical view of deafness as an audiologic deficit.^14,15 This culturally grounded understanding situates Deaf individuals as a distinct sociolinguistic community that remains largely unexplored in existing ADRD research.^16,17 Despite the growing need for accessible care^16,17 and the increased risks for developing ADRD,^18-20 the Deaf community is understudied.

We conducted a scoping review of ADRD research within the context of the Deaf community. We assessed the size, scope, and nature of available research,^21,22 with 3 overarching goals: (1) comprehensively examine existing literature related to ADRD in the Deaf community, (2) identify existing interventions targeting this population, and (3) address the issue of underrepresentation in ADRD research. We asked the question, “What is the extent and nature of existing literature on ADRD in the Deaf community?”

Materials and Methods

We followed guidelines outlined by the Preferred Reporting Items for Systematic Reviews and Meta-analyses^23,24 and Arksey and O’Malley ²⁵ (Figure 1). This project did not involve human data or participants; therefore, institutional review board assessment from our university, The University at Buffalo, State University of New York, was not necessary per the policy of the Office of Science and Medicine at the US Department of Health and Human Services, Office of the Assistant Secretary for Health.

Figure 1.

Preferred Reporting Items for Systematic Reviews and Meta-analyses flow diagram of study selection in a scoping review of research on Alzheimer disease and related dementias/disorders among Deaf populations, 2010-2023.

Study Selection

Included studies were peer reviewed and available in English, and they evaluated some aspect of ADRD in the context of the Deaf community. We excluded studies on general hearing loss unless participants were explicitly situated within the Deaf community, to maintain focus on the distinct sociolinguistic and cultural experiences of Deaf individuals. We set no limitations on publication year, location, or study design. We conducted literature searches in January 2025. The method to obtain relevant articles for analysis was 2-fold. First, we consulted with research experts in the health and hearing sciences and communication sciences to develop string searches, identify databases, and refine research questions. We conducted searches in the following databases: MEDLINE, PubMed Central, and NCBI Bookshelf via PubMed; PsycINFO via PsycNet; CINAHL Plus via EBSCOHost; Web of Science Core Collection; ABI/INFORM via ProQuest; and Academic Search Premier via EBSCOHost. Next, we collected, downloaded, and screened articles for analysis.

We determined search terms by using an extensive literature search, including key terms rooted in Deaf studies,^16,17,26 ADRD and aging,^16,17,27 and health equity.^28-30 Examples of search terms included combinations of Alzheimer disease, dementia, aging, caregiving, Deaf, and sign language. We then downloaded and screened articles for eligibility; the lead author (T.A.L.) reviewed the title and abstract of each study and then read the full-text article for analysis. All duplicates were removed prior to analysis.

Data Charting

We charted data to include meta-data, including study characteristics (author, year, location), participant demographic characteristics (sample size, age, sex, race and ethnicity, participant language), ADRD characteristics (disease type studied), study-specific information (recruitment method, research setting, measures, outcomes), key findings presented, and limitations.

Synthesis of Results

We reported descriptive statistics for study characteristics, participant demographic characteristics, and study design. In the narrative summary of findings, we grouped studies by the thematic categories observed across articles. The lead author (T.A.L.) and a secondary coder with experience and training in public health completed thematic analysis. Coders engaged in a systematic and iterative process to identify themes, and any disagreements were reviewed by a third independent coder. We first assessed the extent of the literature, examining the geographic context of studies, publication timeline, methodological approaches, participant language, disease type/stage of ADRD studied, and funding information.

Results

Study Characteristics

A total of 435 articles met our inclusion criteria (Table 1). Upon further review and after removing duplicates, we included 16 articles for final analysis (Figure 1).

Table 1.

Overview of studies included in a scoping review on ADRD research among Deaf populations, 2010-2023

Study	Design	Method	Population	Disease	Language	Objective
Parker et al (2010), UK 31	Qualitative	Ethnography	1 Deaf adult	Dementia	Sign language, BSL	Provide a first-person account of being Deaf and living with dementia
Ferguson-Coleman et al (2014), UK 32	Qualitative	Focus groups	26 Deaf adults	Dementia	Sign language, BSL	Explore the understanding of attitudes toward dementia in the Deaf community as these relate to identification, familial/community support, and service access
Young et al (2014), UK 33	Qualitative	Focus groups	4 Deaf people with dementia, 5 care partners	Dementia	Sign language, BSL	Explore how to enable effective information access and promote awareness and understanding of dementia from a culturally Deaf perspective
Atkinson et al (2015), UK 34	Quantitative	Survey	226 Deaf adults	Dementia	Sign language, FiSL	Develop the first screening test for the detection of cognitive impairment and dementia in Deaf signers
Rantapää and Pekkala (2016), Finland 35	Qualitative	Interviews	8 Family members of a Deaf person with dementia	Dementia	Sign language, BSL	Understand changes in communication with Deaf people with dementia to improve services and support patients and their families
Denmark et al (2016), UK 36	Quantitative	Diagnostic	223 Deaf signers aged 50 to 89 years	ADRD	Sign language, BSL	Develop a testing tool for memory and verbal learning specifically for BSL users
Young et al (2016), UK 37	Qualitative	Focus groups	26 Deaf adults aged 18 to 60 years	Dementia	Sign language, BSL	Explore how to enable effective information access and promote awareness and understanding of dementia from a culturally Deaf perspective
Young et al (2018), UK 38	Qualitative	Descriptive—guidelines	NA	Dementia	Sign language, BSL	Best practice recommendations: provide public and patient practices with Deaf people who are sign language users
Ferguson-Coleman et al (2020), UK 39	Qualitative	Interviews	3 Deaf caregivers	Dementia	Sign language, BSL	Explore the lived experiences of Deaf caregivers of someone with dementia and identify service and support needs
Young et al (2020), UK 40	Qualitative	Literature review	NA	Dementia	Sign language, BSL	Provide a literature review of Deaf life-story work and its connection to dementia work in the Deaf community
Ammons et al (2020), USA 16	Mixed methods	Survey, interview	42 Deaf adults (survey), 22 Deaf adults (interview)	ADRD	Bilingual English and sign language, ASL	Examine the experiences and needs of informal caregivers who are Deaf, use ASL, and care for someone with ADRD
Rantapää et al (2021), Finland 41	Qualitative	Content analysis	Dyads of 9 caregivers	ADRD	Sign language, FiSL	Identify supportive strategies used by formal caregivers when interacting with Deaf people with dementia
Harris et al (2021), UK 42	Quantitative	Computational	36 Deaf patients with memory difficulties	Memory difficulties	Sign language, BSL	Retrospectively analyze electronic patient records to evaluate a specialist cognitive clinic for the Deaf community
Kushalnagar et al (2023), UK 17	Qualitative	Descriptive: guidelines	NA	ADRD	Sign language, ASL	Provide guidelines and recommendations to increase accessibility of ADRD-based training and educational materials for the Deaf community
Ferguson-Coleman and Young (2023), UK 43	Qualitative	Interviews	7 Deaf caregivers	Dementia	Sign language, BSL	Explore the experiences of Deaf caregivers supporting people with dementia, in an unpaid role, during the COVID-19 pandemic to understand more about their potential support preferences
Rantapää et al (2023), UK 44	Qualitative	Interviews	13 Formal Deaf caregivers	Dementia	Sign language, FiSL	Perceptions of formal caregivers and the challenges they face and solve to improve interactions with Deaf residents

Abbreviations: ADRD, Alzheimer disease and related dementias/disorders; ASL, American Sign Language; BSL, British Sign Language; FiSL, Finnish Sign Language; NA, not applicable or data not provided.

Extent of Literature: Descriptive Findings

All studies were based in the Global North (ie, higher-income industrialized countries with greater access to resources). Eleven studies were conducted in the United Kingdom,^{31-34,36-40,42-44} 3 studies in Finland,^35,41,44 and 2 in the United States.^16,17 No research came from the Global South (ie, lower-income, less industrialized countries) or developing countries.

The earliest study was published in 2010, followed by sporadic work in the first half of the decade. From 2014 on, we found a small but notable increase in studies, with multiple publications released in 2020 and 2023 (Figure 2).

Figure 2.

Volume of publications on Alzheimer disease and related dementias/disorders among Deaf populations, by year, 2010-2023.

Demographic reporting was inconsistent (Table 2). Ages ranged widely, with older adults (aged 50-89 y) most common. Sex was inconsistently reported; when data on sex were available, caregivers were more often female. Race and ethnicity data were largely absent, with the few reported cases identifying most participants as White and British.

Table 2.

Sociodemographic characteristics of participants in a scoping review on ADRD research among Deaf populations, 2010-2023 ^a

Study	Country	Sample size	Age, y, mean (SD)	Sex, no. (%)
Parker et al (2010) 31	UK	1 Deaf adult		Female, 1 (100)
Ferguson-Coleman et al (2014) 32	UK	26 Deaf adults
Young et al (2014) 33	UK	4 Deaf people with dementia, 5 care partners
Atkinson et al (2015) 34	UK	226 Deaf adults	78 (5.7)	Male, 82 (36.3); female, 144 (63.7)
Rantapää and Pekkala (2016) 35	Finland	8 Family members of a Deaf person with dementia
Denmark et al (2016) 36	UK	223 Deaf signers aged 50 to 89 years	68.1 (10.1)	Male, 80 (35.9); female, 143 (64.1)
Young et al (2016) 37	UK	26 Deaf adults	18-60 b
Young et al (2018) 38	UK
Ferguson-Coleman et al (2020) 39	UK	3 Deaf caregivers
Young et al (2020) 40	UK
Ammons et al (2020) 16	USA	42 Deaf adults (survey), 22 Deaf adults (interview)	66 (12)	Male, 9 (21.4); female, 33 (78.6)
Rantapää et al (2021) 41	Finland	Dyads of 9 caregivers and 5 Deaf participants
Harris et al (2021) 42	UK	36 Deaf patients with memory difficulties	71.5	Male, 15 (41.7); female, 21 (58.3)
Kushalnagar et al (2023) 17	UK
Ferguson-Coleman and Young (2023) 43	UK	7 Deaf caregivers		Female, 7 (100)
Rantapää et al (2023) 44	Finland	13 Formal caregivers

Abbreviation: ADRD, Alzheimer disease and related dementias/disorders.

^aBlank cells indicate not available.

^bRange.

Twelve studies^{17,31-33,35,37-41,43,44} used qualitative methods (eg, interviews, focus groups) to explore the lived experiences of older Deaf adults and caregivers; 3 studies^34,36,42 used quantitative methods (eg, retrospective electronic health data analysis, surveys); and 1 study ¹⁶ used a mixed-methods approach (ie, combining surveys with follow-up interviews) to develop diagnostic tools such as the British Sign Language Cognitive Screening Test and assess the quality of life for Deaf caregivers.^16,33

Three distinct forms of sign language were used by participants in the included studies: British Sign Language (n = 11),^{31-33,35-40,42,44} Finnish Sign Language (n = 3),^34,41,44 and American Sign Language (n = 2).^16,17 Participant language varied among studies but primarily included signed languages, with some individuals being bilingual (ie, fluent in American Sign Language and English). Other forms of visual communication (eg, cued English) were not present.

Twelve studies focused on dementia and memory loss as a broad, all-encompassing category,^{31-35,37-40,42,43,44} and 4 studies explicitly addressed Alzheimer disease.^16,17,36,41

Fourteen studies reported external funding, primarily from the United Kingdom’s Alzheimer’s Society and national research councils, as well as Deaf health foundations in the United Kingdom, Finland, and the United States.^{16,17,32-42,44} Two studies did not report funding sources.^31,43

Nature of Literature: Narrative Findings

We assessed the nature of literature thematically, focusing on each study’s primary findings and conclusions. Common themes included challenges related to diagnosis and care, accessibility and isolation, and caregiver burden.

A recurring theme was the challenge of diagnosing ADRD in Deaf individuals. ADRD-related symptoms were often misinterpreted, and the lack of appropriate diagnostic tools resulted in late diagnoses, which affected care planning.^33,35 Diagnostic tools failed to account for signed languages, resulting in an inability to accurately and quickly diagnose patients. Furthermore, many cognitive changes were often misattributed to communication differences rather than actual symptoms of dementia. ³³

Isolation, socially and mentally, emerged as a critical challenge. Several examples emphasized social isolation, compounded by unmet communication needs.^35,37-41 Without adequate language support, Deaf individuals can be excluded from conversations about their care, leaving decisions to be made without their full understanding or consent. Such exclusion only exacerbated feelings of mistrust but also increased reliance on informal caregivers, who may not have the training or resources to adequately support such complex needs.

Studies highlighted barriers in accessing necessary health services, with Deaf populations facing communication challenges and mistrust of health care systems.^32,37-41 Deaf people often reported difficulties and negative experiences associated with health care services as a result of poor communication and frustration, which exacerbated mistrust. ⁴⁵ Yet, even when interpreters were provided, understanding medical information was a challenge ³⁸ because the translation of complex medical information was not always adequate. Issues remained with regulating interpreter services and a lack of specialized knowledge among interpreters because specialized training is not required for interpreters to work in medical settings. Even with qualified interpreters, miscommunication occurs, leaving patients at a disadvantage in fully understanding diagnosis and treatment options.

Caregivers faced additional burdens, particularly in communicating and obtaining access to support services. These challenges become further complicated because many family members also served as interpreters, adding to their emotional and caregiving load.^{16,39,41,43,44} Family members found themselves acting as intermediaries between loved ones and health care providers, with results highlighting the need for support tailored to these unique communication challenges.

Discussion

The present review highlighted several long-standing and systemic barriers related to health literacy, trust, and accessibility. Related to health literacy, Deaf individuals often face substantial barriers to understanding health information, ⁴⁶ which reduces opportunities to benefit from health-related communication^47,48 and leads to lower general health knowledge and literacy.^49-53 The deficit of baseline knowledge stems from a lack of accessible resources in signed languages and the complexity of navigating health systems designed primarily for hearing individuals. For example, studies revealed how even when interpreters are provided, medical concepts can be difficult to convey effectively through sign language, especially if interpreters lack medical training or cultural competence.^16,36 Language deprivation and communication neglect exacerbate these challenges, as many Deaf individuals lack early access to a fully accessible language environment.^54-56 This language deprivation can have long-term effects, negatively affecting one’s literacy. The importance of communicating in one’s own language cannot be understated, as health literacy is not only about the availability of information but also about ensuring that information is comprehensible in the language and format best suited to the population. ⁵⁷ For Deaf individuals, this means addressing the distinction between sign languages and written languages, which fundamentally differ in grammar and structure. Our review identified a lack of reliable health literacy measures and instruments to address this problem. ⁵⁸ Overlooking such linguistic differences compromises information quality, resulting in poor health outcomes.

Trust is another central issue. Many Deaf individuals distrust health care providers, stemming from repeated negative experiences. Studies highlight that even when interpreters are used, communication barriers remain, and trust is further complicated when Deaf patients feel that their needs are not fully understood or respected.^32,36 Community involvement can be critical for rebuilding this trust. ⁵¹ Working directly with Deaf community organizations and members offers a promising route for increasing participation in health care research and improving trust in medical interventions. The involvement of community leaders, particularly those who are Deaf, could foster a greater sense of ownership of health care processes and policies, ensuring that Deaf voices are central to shaping solutions. Furthermore, research participation must be accessible to Deaf individuals, from consent to data collection, to improve representation and ensure that findings reflect their needs. ⁵⁹

Finally, we identified an ongoing struggle in accessibility, which goes beyond the simple provision of interpreters. Medical settings are often ill-equipped to provide nuanced sign language interpretation, particularly for complex conditions such as ADRD.^16,33 Moreover, sign language is not universally understood among all Deaf individuals,^60,61 which presents additional challenges in care because health care providers may mistakenly attribute cognitive decline to linguistic barriers rather than underlying medical conditions.

Research Gaps and Future Directions

Despite growing attention to ADRD in Deaf communities, the overall body of research is limited in scope and scale, underscoring the need for continued expansion. Substantial gaps exist related to geographic focus, range of investigated variables, and the development of culturally tailored assessments. We outline key areas for future work and recommendations to strengthen future research.

Limited geographic scope

Although ADRD are a global concern, studies largely focus on the Global North, limiting understanding of Deaf communities in the Global South. Various health care infrastructures, language resources, and cultural norms can affect how ADRD are experienced and managed. Research in underrepresented settings is therefore needed to capture the global diversity of Deaf communities.

Additional variables of interest

Most existing literature focuses on diagnostic challenges, communication barriers, or caregiver experiences without exploring a wider set of potentially relevant factors. Variables such as comorbidities (eg, mental health conditions), varied caregiving environments (formal vs informal), and long-term outcomes are rarely addressed. By focusing narrowly on initial diagnosis, researchers may overlook key determinants of quality of life, treatment compliance, and sustained cognitive function. Future studies could explore other important aspects of ADRD care, such as social support networks and chronic care management, to provide a more holistic understanding of how Deaf individuals navigate ADRD from early detection through late-stage care and bereavement.

Culturally adapted tools and interventions

Validated tools across various signed languages and cultural contexts are scarce for this population. Many assessment methods rely on English-based instruments that overlook Deaf linguistic and cultural nuances, leading to misdiagnosis, delayed treatment, and limited cross-study comparability. Tailored tools that accurately capture cognitive, behavioral, and functional changes in Deaf populations are essential for clinical practice and research rigor. The visual nature of sign languages also suggests the potential of narrative or arts-based interventions, ³⁹ which may more authentically reflect Deaf experiences.

Longitudinal research

Most identified studies in this review were cross-sectional or qualitative snapshots, limiting our ability to track changes over time. Understanding how Deaf individuals experience ADRD across the disease trajectory, particularly as communication capacities evolve, is crucial for effective intervention design. Longitudinal designs could also shed light on how various social, cultural, or linguistic factors influence disease progression and caregiver burden. By following Deaf individuals and caregivers longitudinally, researchers could better pinpoint when specific supports are most needed, evaluate which intervention is most effective, and identify critical points in transitions in care.

Practical Implications

Our findings highlight critical areas of improvement for addressing ADRD in the Deaf community, which has practical implications for patients, caregivers, practitioners, and policy makers. For Deaf individuals with ADRD, the foremost implication is the need for health care that respects and accommodates their primary mode of communication: sign language. Traditional spoken and written communication methods are often inadequate, particularly for those whose first language is not written English. Patients should be provided with resources in their native language, including video-based materials that explain ADRD and available care options. A need also exists for diagnostic tools that can effectively assess cognitive function in sign language users. Diagnostic tools can mitigate misdiagnosis or delays in treatment and ensure that Deaf patients receive timely and culturally appropriate care. Improving communication access can enhance quality of life, reduce isolation, and empower patients to participate in their care decisions.

Our findings suggest that caregivers face additional burdens, particularly in interpreting communication and accessing support services. Family members, often the primary caregivers, may be required to act as interpreters in medical settings, a role for which they are untrained. ⁵⁸ This dual responsibility can strain the caregiving process and exacerbate feelings of burnout. To alleviate these challenges, it is critical to provide caregivers with adequate support, such as access to professional interpreters. Furthermore, support networks for Deaf caregivers or caregivers of Deaf individuals that are tailored to their unique cultural and linguistic needs should be established to foster community support and share best practices.

Our results emphasize the need for culturally competent care.^62-65 Deaf experiences are often compounded by miscommunication between patients and health care providers, particularly when health care systems rely on inappropriate diagnostic tools or fail to provide sign language interpreters. Health care practitioners should receive training on Deaf culture and the unique challenges that Deaf individuals face when dealing with ADRD. ⁶⁶ Furthermore, health care systems should establish consistent processes to identify and meet Deaf patients’ access needs across care settings.^67-70 These processes include investing in developing diagnostic and care tools that are accessible to Deaf patients, such as visual cognitive assessment tools that accommodate sign language. Health care providers should consider patient preferences as well, and while technologies such as telemedicine and video remote interpreting may seem like a simple solution, many Deaf patients prefer on-site interpreters because video remote interpreting technologies have several technical, environmental, and interpreter qualification concerns. ⁶⁶ Ultimately, implementing these changes can help Deaf patients with ADRD better communicate with their health care providers, especially during later stages of the disease when communication becomes challenging. In addition to training, engaging Deaf health care professionals in patient care and education is essential, as their lived experience and cultural insight can improve care, build trust, and enhance workforce diversity.^28,71,72

Finally, at the policy level, a need exists for more comprehensive and inclusive policies that address the needs of Deaf individuals. ¹⁷ Policies should consist of mandating certified interpreters, training health care providers, and reducing health disparities through culturally competent interventions. Strengthening legislation on early intervention, equitable care, and accessibility could substantially improve outcomes.

Limitations

Our review had several limitations. First, while efforts were taken to ensure a comprehensive literature search, some articles may have been missed. Second, we reviewed studies available only in English; thus, publications from non-English sources may have been excluded, limiting our ability to understand findings related to other countries. Third, we noted the absence of a clear, standardized definition of ADRD in many articles. This omission may reflect assumptions of reader familiarity; however, as understanding of ADRD evolves, future research should clearly define these terms, given the various neurodegenerative conditions that they encompass.

Conclusion

ADRD are a critical public health issue, and their impact is only expected to increase given the aging trend of the population.^68,69 Despite this growing impact, the Deaf community is underrepresented in research and health care services. The present review sheds light on the critical gaps and needs of ADRD in the Deaf community. Our findings underscore the limited amount of research in this area and the lack of education and resources related to this community. Future work should consider how to bridge barriers in care and consider steps to develop inclusive approaches to prioritize the autonomy, dignity, and well-being of Deaf individuals. By fostering collaboration among researchers, health care providers, policy makers, and community partners, we can work toward advancing equitable care for the aging Deaf community.