DOCTOR NOTES / FAMILY GUIDES2 min read · Educational resource

FTD Guide · Chapter X

Financial Help

Grants, disability benefits, FMLA, and resources to ease the financial burden.

FTD is expensive. It usually hits during a person’s peak earning years. The person with FTD may have to stop working. The caregiver may have to cut back or leave their job too. Add up the cost of specialists, medications, legal planning, and long-term care, and it gets overwhelming fast.

Here are concrete resources that can help ease the financial burden.

AFTD Comstock Grant ProgramUp to $500 for people with FTD and caregivers. Funds can support respite care, quality-of-life needs, or travel to AFTD conferences. CurePSP Quality of Life Respite Program200 hours of professional, agency-based in-home respite care (up to $40/hour, paid directly to the agency) for families dealing with PSP, CBD, or MSA. Income limits apply.
Social Security Disability (SSDI)FTD is on Social Security’s Compassionate Allowances list, which speeds up the decision. You still need enough work history to qualify. The application is complex. Consider a disability attorney (paid on contingency).
Family and Medical Leave Act (FMLA)Up to 12 weeks of unpaid, job-protected leave to care for a spouse, child or parent with a serious health condition. You may qualify if you’ve worked for a covered employer for 12 months, logged 1,250 hours in the 12 months before leave, and work at a location where the employer has 50 or more employees within 75 miles. In Oregon, also check Paid Leave Oregon, which pays you during leave. State and Local ProgramsMany states offer caregiver programs, adult day services, and respite care. Call the AFTD HelpLine 866-507-7222 to learn what’s available in your area.
You don’t have to do this alone. Financial stress is a real part of caregiving. Reach out to AFTD, a disability attorney, or your state caregiver resources. There is help available.