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Living With Frontotemporal Degeneration: Diagnostic Journey, Symptom Experiences, and Disease Impact
Open accessAbstract
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.
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“Anosognosia can result in significant differences between caregiver or observer reports and the reports of patients, many of whom may not recognize the presence of symptoms. 5 , 71”
From Developing digital health technologies for frontotemporal degeneration (2025) · cites this paper as [5]
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Metadata
- Authors
- Barker, M. S., Dodge, S. G., Niehoff, D., Denny, S., Dacks, P. A., Dickinson, S., Cosentino, S., & Wheaton, D. K. H.
- Affiliations
- Columbia University Irving Medical Center (US)
- Association for Frontotemporal Degeneration (US)
- FTD Disorders Registry, LLC, King of Prussia, PA, USA
- Corresponding author
- Wheaton, Dianna K.H.
- Venue
- Journal of Geriatric Psychiatry and Neurology
- Publisher
- SAGE Publications
- Published
- 2022-08-09
- Volume
- 36
- Issue
- 3
- Pages
- 201-214
- ISSN
- 0891-9887 (ISSN-L)
- 1552-5708
- PMC
- PMC10114256
- OpenAlex
- W4290770827
- Cited by
- 17
- References
- 37
- Citations by year
- 2026: 6 · 2025: 7 · 2024: 4
- FWCI
- 1.79
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- Journal of Geriatric Psychiatry and Neurology (publishedVersion, cc-by-nc)
- PubMed Central (publishedVersion, cc-by-nc)
- PubMed (publishedVersion)
- Funders
- Association for Frontotemporal Degeneration (FTD Insights Postdoctoral Fellowship)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Medicine › Clinical Neurology › Amyotrophic Lateral Sclerosis Research
- Life Sciences › Neuroscience › Cellular and Molecular Neuroscience › Alzheimer's disease research and treatments
- Keywords
- frontotemporal lobar degeneration, diagnostic journey, symptom experience, quality of life, loss of independence, caregiver perspectives, behavioral variant frontotemporal dementia, Pick's disease, cognitive symptoms, language symptoms, distress
- MeSH terms
- Atrophy, Humans, Quality of Life, Neurodegenerative Diseases, Frontotemporal Dementia
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- CoChat. (2026). Citation check: Living With Frontotemporal Degeneration: Diagnostic Journey, Symptom Experiences, and Disease Impact. https://app.cochat.ai/papers/10.1177/08919887221119976
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- Barker, M. S., Dodge, S. G., Niehoff, D., Denny, S., Dacks, P. A., Dickinson, S., Cosentino, S., & Wheaton, D. K. H. (2023). Living With Frontotemporal Degeneration: Diagnostic Journey, Symptom Experiences, and Disease Impact. Journal of Geriatric Psychiatry and Neurology. https://doi.org/10.1177/08919887221119976
