World FTD Awareness Week is highlighting the financial impact of FTD today. When families receive an FTD diagnosis, they face more than the emotional upheaval of a progressive neurological condition—they confront financial issues.

A study published in Neurology found that the average annual costs associated with FTD total $119,654, nearly twice the reported annual cost of Alzheimer’s disease. This figure includes direct medical expenses of $47,916 and indirect costs of $71,737 per patient annually. The indirect costs—representing lost wages, reduced productivity, and caregiving expenses—actually exceed the direct medical expenses. Those costs, pegged to 2016 dollars, would be substantially higher today.

These indirect costs are borne heavily by family caregivers, who often must reduce their work hours or leave their careers entirely. A 2009 study in Dementia and Geriatric Cognitive Disorders showed  that 70.5% of FTD caregivers experience significant work-related changes, including reduced productivity, missed workdays, and early retirement. This workforce disruption affects not only immediate family income but also long-term financial security through reduced Social Security benefits and retirement savings.

Early financial planning is the best way to mitigate financial risks as symptoms emerge or if FTD is suspected:

Throughout this process, the person exhibiting symptoms should be included to the greatest extent possible.

Once a formal FTD diagnosis has been established, the primary care partner should consider the following steps to reduce financial risk:

Prepare to educate others on FTD. AFTD created an FTD overview that you can download or you can suggest a visit to the AFTD’s website.

Continue to monitor financial accounts—not because of a lack of trust, but because FTD symptoms and behaviors will continue to progress in ways that will change the individual’s abilities. Preventing serious risk is key.

Establish a Power of Attorney. Power of Attorney (POA) is a written document authorizing someone—usually a family member—to make financial, legal, and healthcare decisions for another person.

Consider your specific family situation. Complexity can arise if the person with FTD lives alone without family support, has young children, or is in a second marriage (or beyond). Encourage family members to learn about FTD, work together to choose the POA, and coordinate finances and care. Meeting with a neutral family mediator may be helpful.

Consult with an elder law attorney and develop a plan to transition financial and legal capacity. Review or establish legal documents, make long-term care plans, and ensure that the beneficiary information on all accounts is current and that assets are properly titled. Laws differ between states. To find a licensed elder law attorney in your state, consult the National Academy of Elder Law Attorneys.

Identify and inform relevant outside parties. Inform the person’s tax accountant, bank representatives, business partners, and other relevant parties about their diagnosis and its risks to sound financial decision-making.

People diagnosed with FTD who live in the U.S. may be entitled to a variety of state and federal benefits. Consult an attorney and financial planner to help you understand and apply for these programs, or if your benefits are denied and you want to file an appeal.

Visit AFTD’s Planning for Legal, Financial, and Health Insurance Issues to learn more.

To help defray costs not covered by government programs, AFTD offers Comstock Grants directly to people in the FTD community. Apply directly or download the applications on the AFTD website.

Respite Grants (for full-time, unpaid care partners) – We know how difficult it can be for care partners to meet their own needs while caring for a loved one at home. Comstock Respite Grants help full-time, unpaid care partners attend to their own emotional, psychological and physical well-being.

Quality of Life Grants (for persons living with FTD) – The changes that come with FTD make it harder to perform well at a job, drive, do everyday tasks and enjoy time with friends and family. AFTD’s Comstock Quality of Life Grants are intended to help persons with FTD defray the cost of goods or services that will improve their lives today.

Travel Grants (For persons living with FTD and their family members who are care partners) – This Grant provides financial assistance to make it possible to attend the AFTD Education Conference or other FTD educational events approved by AFTD. One grant is available per family.

If you would like share a tip on how you handle the financial issues related to FTD or tell us how FTD has impacted your finances, please email communications@theaftd.org. We will respect requests for anonymity.