The objective of this study and descriptive analysis was to better understand specific challenges and identify gaps in existing services for caregivers of individuals with frontotemporal dementia (FTD).

Caregivers or care partners play a crucial role in the FTD patient journey. They often experience challenges while caring for persons diagnosed with FTD. Caregivers were surveyed to better understand caregiver burden and identify their most pressing needs.

Alector developed the FTD Caregiver Survey, an online self-administered questionnaire, consisting of informed consent, eligibility screening, and questions regarding caregiver burden and strains. The survey was distributed with support from patient groups, individual advocates and an FTD website community. Eligible responders were adults who could read and write in English, reside in the United States, and who have been an unpaid primary caregiver for a person diagnosed with FTD. The first 90 surveys, completed from May to June 2024, were analyzed.

Of all respondents, 47% self-identified as a sole caregiver. Over one third of all respondents spent over 40 hours per week providing direct care. Many respondents (41%) also provided care for other family members, with a majority (92%) reporting difficulty managing those responsibilities. Most caregivers reported difficulty attending to their own healthcare.

Respite services, in-home care, or adult day care were identified as the most needed and the most difficult to access amongst a list of services. Care planning and symptom management were highlighted as areas of need. FTD-specific websites or organizations were identified as being the most helpful source of assistance and information.

Patient organizations and healthcare professionals can help address the need for strategies to overcome barriers and expand on FTD-specific support, ranging from caregiver support groups to financial assistance and additional support in the day-to-day caregiving at home.