Between 2018 and 2019, multiple clinical trials ended earlier than planned, resulting in calls to improve communication with and support for participants and their study partners ("dyads"). The multidisciplinary Participant Follow-Up Improvement in Research Studies and Trials (Participant FIRST) Work Group met throughout 2021. Its goals were to identify best practices for communicating with and supporting dyads affected by early trial stoppage. The Participant FIRST Work Group identified 17 keyThis is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.

BackgroundWhile efforts are underway to better understand the prevalence, incidence, pathophysiology, and phenomenology of FTD, most research participation has been dominated by persons of European descent. Better understanding of early signs, the diagnostic journey, and the functional impacts in historically underrepresented groups may help shed light on healthcare inequities, support the development of more inclusive research study design, and lay the foundation for more targeted care and interventions.MethodIn preparation for an Externally Led Patient‐Focused Drug Development (PFDD) meeting, the Association for Frontotemporal Degeneration (AFTD) and the FTD Disorders Registry (FTDDR) collaborated to develop the FTD Insights Survey. The online survey queried aspects of the lived experience of FTD from the patient/family/carer perspective.ResultOf the 1,796 respondents that completed the survey, twenty‐five represented the experience of African American persons diagnosed with FTD from the perspective of those diagnosed (n = 4) and care partners (n = 21). Two additional respondents reported on their experience as African American biological family members of those with FTD. Thirty‐six percent of African Americans needed to see 4 or more doctors before receiving an FTD diagnosis, compared to 18% of total respondents, and were more likely to initially receive a different diagnosis (80% vs. 45%). While patterns of the first symptoms were reported similarly across all participants, African Americans were more likely to report having initially experienced changes in thinking, spatial reasoning, or delusions/hallucinations. African Americans were also more likely to report distress related to language, sleep, and delusions/hallucinations and less likely to report no distress or distress related to cognitive symptoms. African American participants were more likely to endorse wanting a treatment to maintain independence and hold a job than overall participants.ConclusionThe African American perspectives reported on the FTD Insights Survey represent a small sample size of individuals with greater than average levels of education (76% had an Associate’s degree or higher). The experience they report overlaps with those of other respondents, but with key differences including more difficulty in access to timely diagnosis. More information is needed on the lived experience of FTD across people of different cultural, social, economic backgrounds.

Frontotemporal degeneration (FTD) is an umbrella term encompassing a range of rare neurodegenerative disorders that cause progressive declines in cognition, behavior, and personality. Hearing directly from individuals living with FTD and their care partners is critical in optimizing care, identifying meaningful clinical trial endpoints, and improving research recruitment and retention. The current paper presents a subset of data from the FTD Insights Survey, chronicling the diagnostic journey, symptoms, and the impact of FTD on distress, quality of life, and independence, in the mild to moderate stages of the disease. Survey respondents included 219 individuals diagnosed with FTD and 437 current care partners, representing a range of FTD diagnoses. Around half of survey respondents reported seeing three or more doctors before an FTD diagnosis was given, and a range of prior diagnoses were noted. Most frequently endorsed symptoms tended to be consistent with clinical characteristics of the specific diagnosis, though there was significant variability in symptoms reported within diagnostic categories as well as considerable overlap in symptoms between diagnostic categories. Cognitive and language symptoms of FTD were generally most distressing to the person diagnosed, and a loss of independence was endorsed as affecting quality of life. The distinct perspectives of diagnosed persons and care partners regarding disease impact differed notably for bvFTD/Pick’s disease. Participating independently in a range of activities, within the home, outside the home, and with other people, were reported as challenging for people living with FTD, underscoring the degree to which the lives of these individuals are affected even at the mild and moderate stages of disease. Overall, by heeding the perspectives of those living with FTD, we can begin to design more meaningful research studies, provide better care, and develop therapies that improve quality of life.

Frontotemporal dementia (FTD) is one of the leading causes of dementia before age 65 and often manifests as abnormal behavior (in behavioral variant FTD) or language impairment (in primary progressive aphasia). FTD's exact clinical presentation varies by culture, language, education, social norms, and other socioeconomic factors; current research and clinical practice, however, is mainly based on studies conducted in North America and Western Europe. Changes in diagnostic criteria and procedures as well as new or adapted cognitive tests are likely needed to take into consideration global diversity. This perspective paper by two professional interest areas of the Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment examines how increasing global diversity impacts the clinical presentation, screening, assessment, and diagnosis of FTD and its treatment and care. It subsequently provides recommendations to address immediate needs to advance global FTD research and clinical practice.

Background: Frontotemporal degeneration (FTD) is an umbrella term encompassing a range of rare neurodegenerative disorders that cause progressive decline or changes in cognition, language, behavior, and personality. The FTD Insights Survey was created with the aim of gathering information on the lived experience of FTD. Here we present a subset of survey data chronicling the diagnostic journey, symptoms experienced, and the impact of FTD on distress, quality of life, and independence, in the mild to moderate stages of the disease course. Method: In total, 1,796 individuals completed the survey. Persons reported as severe to profoundly impaired due to FTD, as well as past caregivers, were excluded for this analysis. The resulting cohort included 219 individuals diagnosed with FTD and 437 current care partners, representing a range of FTD diagnoses (n = 395 behavioral variant frontotemporal dementia or Pick's disease; n = 155 primary progressive aphasia; n = 61 progressive supranuclear palsy or corticobasal syndrome; n = 13 FTD with amyotrophic lateral sclerosis; n = 32 unknown).Result: Around half of survey respondents saw three or more doctors before an FTD diagnosis was given, and a range of prior diagnoses, including primary psychiatric disorders, Parkinson's disease, or Alzheimer's disease, were noted. Most frequently endorsed symptoms tended to be consistent with clinical characteristics of the specific diagnosis, though there was significant variability in symptoms reported within diagnostic categories as well as considerable overlap in symptoms between diagnostic categories. Cognitive and language symptoms of FTD were generally most distressing to the person diagnosed, and a loss of independence was highly endorsed as affecting quality of life. The distinct perspectives of diagnosed persons and care partners regarding disease impact differed notably for bvFTD/Pick's disease. Participating independently in activities, within the home, outside the home, and with other people, were reported as challenging for people living with FTD, underscoring the significant disruption to daily living even at the mild and moderate stages of disease.