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Dementia Care Research and Psychosocial Factors
Grace Mausisa1, Annick de Bruin2, Devon M Chenette1
1Alector, South San Francisco, CA, USA.
Alzheimer'S & Dementia : the Journal of the Alzheimer'S Association
|December 26, 2025
Summary
Caregiver experiences with frontotemporal dementia (FTD) diagnosis reveal significant delays due to lack of awareness and misdiagnosis. Improving public and professional education is crucial for earlier FTD detection and better caregiver support.
Area of Science:
- Neurology
- Gerontology
- Public Health
Background:
- Caregivers are vital for individuals with frontotemporal dementia (FTD).
- Understanding caregiver experiences with FTD diagnosis and clinical support is essential.
Purpose of the Study:
- To explore the diagnostic journey and clinical support experienced by caregivers of individuals with FTD.
- To identify challenges faced by caregivers in obtaining an FTD diagnosis.
Main Methods:
- An online survey, the FTD Caregiver Survey, was developed and distributed.
- The survey targeted unpaid primary caregivers of individuals diagnosed with FTD in the United States.
- Informed consent was obtained from all adult participants.
Main Results:
- A significant portion of caregivers waited over a year for diagnosis, often due to unawareness of FTD or mistaking symptoms for normal aging.
- Lack of healthcare professional knowledge (54%) and misdiagnosis (42%) were primary diagnostic barriers.
- Caregivers identified neurologists with FTD expertise as most needed but hardest to find.
Conclusions:
- Caregiver perspectives are critical for improving FTD diagnosis and care.
- Enhanced public and healthcare professional education on FTD symptoms is needed for early and accurate diagnosis.
- Increased support and resources for FTD caregivers are essential.
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