Partners in FTD Care, Summer 2021
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FTD is uniquely able to wreak havoc on a family’s finances. Its symptoms may include impaired judgment, impulsive behaviors, poor decision-making skills, apathy, disinhibited behavior—all of which can lead to financial calamity. The person with FTD may fall prey to financial scams, compulsively gamble, ignore their bills, fail to pay taxes, spend beyond their means, get fired from their job, or, if self-employed, mismanage their own business. Because FTD is often a young-onset dementia, most commonly occurring between ages 45 and 64, families affected have or are taking on more debt (paying off a mortgage, taking out loans for college tuition) or are working and saving for retirement. The impact of financial instability at this time can be ruinous to the family for years to come.

While primary care providers and financial institutions increasingly recognize changes in financial decision-making as an early sign of cognitive decline, the younger age of onset, symptoms, and challenges in diagnosis create especially complex dynamics.

Some steps that families can take to mitigate financial risks as symptoms emerge or if FTD is suspected:

• Monitor financial accounts, including checking, savings, credit cards, and 401Ks and other retirement accounts, for unusual behaviors.
• Communicate your concerns with trusted family members, associates, and financial institutions.
• Request medical leave from a human-resources representative (if the person is still employed and is undergoing evaluation) to protect their employment status and prevent them from losing disability or retirement benefits.
• Coordinate with their accountant and/or business partners (if the person owns their own business) to establish necessary monitoring or safeguards of business finances and accounts.

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 take the following steps to reduce financial risk:

Prepare to educate others on FTD. Gather print information, reliable websites, and other resources that speak to your experience to share with others who are not familiar with FTD.

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 prior 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. A degree of 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 may differ between states. To find a licensed elder law attorney in your state, consult the National Academy of Elder Law Attorneys (www.naela.org).

Identify and inform relevant outside parties. Inform the person’s tax accountant, bank representatives, and other relevant parties about their diagnosis and its risks to sound financial decision-making. The earlier you communicate these concerns, the better prepared you will be to protect their assets.

Learn FTD behavioral interventions and strategies. FTD can impair self-awareness and judgment, which makes it impossible for the person diagnosed to reliably recognize potentially harmful behaviors and take steps to change them. Environmental and behavioral interventions are therefore critical to reducing financial risk. While necessary, these steps are often challenging for care partners and may be resisted by the person with the disease.

For example:

• Limit access to their various accounts.
• Work with banks to obtain the lowest possible credit limit on credit cards.
• Give the person with FTD debit cards with fixed maximum balances for everyday spending. Visa gift cards with fixed balances can also be used.
• Limit and monitor cell phone data. Block unknown numbers on incoming phone calls.
• Limit risky internet use by placing the computer in a shared space in the home or use parental controls to reduce and limit internet access. Ensure spam filters are in place for emails.
• Register for the National Do Not Call Registry (www.donotcall.gov) and opt out of pre-screened credit card and insurance offers via postal mail (www.consumer.ftc.gov/articles/how-stop-junk-mail).
• Place fraud and identity theft alerts on the person’s credit reports, and apply credit or security freezes to limit their ability to apply for new credit.

Encourage participation in FTD peer support groups. Others who have had FTD in their lives can impart wisdom gleaned from their direct experience. Learning strategies and problem-solving approaches while gaining a sense of understanding and emotional support can make support-group attendance one of the best ways to cope with the challenges that FTD presents.

See also:

• Not Too Young: The Most Common Dementia Under 60
• FTD Overview
• Creating Well-Being with Person-Centered FTD Care
• Mental Health Matters: Finding the Right Emotional Support
• Disinhibition in FTD
• What to Do About… FTD, the Most Common Dementia Under 60
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