Planning the money side of frontotemporal dementia usually takes a small team, each person with a separate job: an elder law attorney for the legal documents, a disability or employment attorney for benefits and work, a financial planner or care manager for the cash and the care, and someone who reads all of it against the way FTD actually behaves. If your mom has FTD and her savings are going faster than anyone warned you, you may be asking whether the moment to plan has already passed, or whether the money is even a separate problem from the illness. Many families with FTD were first given a different label, often early Alzheimer’s, and spent months preparing for the wrong disease. That doubt is a reasonable response to what you have been told.

The stakes are specific. FTD can change judgment before it changes memory, so the person draining the account may still be the person with the legal right to decide how it is spent. Powers of attorney are enforceable only if they were signed while the person was legally competent, according to the Association for Frontotemporal Degeneration (AFTD), and the same guide notes that long-term care insurance cannot be purchased after an FTD diagnosis. In a survey of 674 FTD caregivers that AFTD calls the first of its kind, 58 percent reported poor financial decisions by the person with the disease.

One of the people a family can add to that team is Jessica Lizel Cannon of The Proactive Caregiver, a dementia caregiving strategist who lived an FTD diagnosis with her own mother and now works on exactly this problem: the money, the documents and the disease, read on the same page.

Estimated reading time: 11 min read

Key Insights

An elder law attorney handles the powers of attorney and any guardianship question, disability and employment attorneys handle Social Security and workplace benefits, a financial planner models the cash, and an Aging Life Care professional directs the care. Because FTD can affect judgment first, and a power of attorney does not overrule someone who still has legal capacity, savings can drain while every document looks fine. The costly gaps sit between those roles, and reading them together is the work Jessica Lizel Cannon does.

Table of Contents

• Frontotemporal dementia moves the money problem ahead of the memory problem
• Each professional owns one part of an FTD money plan
• The gaps between the helpers are where FTD savings leak
• Where a dementia caregiving strategist fits beside the attorney and the planner
• What families gather before the first conversations
• Deciding which piece comes first

Frontotemporal dementia moves the money problem ahead of the memory problem

The National Institute on Aging (NIA) describes frontotemporal disorders as a common cause of early-onset dementia, with roughly 60 percent of people with FTD between 45 and 64 years old. The NIA’s own example is pointed: when the disease starts in the area responsible for decision-making, the first symptom might be trouble managing finances. The same page notes that FTD is sometimes misdiagnosed as Alzheimer’s disease, and that behavioral variant FTD is sometimes mistaken for a mood disorder such as depression. Jessica’s comparison of frontotemporal dementia and Alzheimer’s follows those differences into the money and the legal timeline.

That ordering turns a medical question into a money one: a family watching for forgotten names can miss months of spending that makes no sense, by a person who, the NIA notes, may not be aware anything has changed. In the 2017 Neurology study of 674 FTD caregivers that AFTD funded and co-authored, the estimated potential cost of FTD came to $119,654 per patient per year in 2016 dollars, nearly twice the reported cost of Alzheimer’s. Of that, an estimated potential $47,916 a year was direct spending on goods and services, and AFTD puts the fall in household income at up to 50 percent in the year around diagnosis.

There is also a legal reason the savings can keep moving after the family sees the problem. The Alzheimer’s Association explains that a person with dementia keeps the right to make their own decisions for as long as they have legal capacity, and that a power of attorney gives the agent no authority to overrule them until that capacity is gone. With FTD, judgment can be failing while legal capacity, as a court would weigh it, is still an open question. So the plan follows two clocks at once: the money running down, and the window for signing documents narrowing.

Each professional owns one part of an FTD money plan

AFTD’s planning guide names the legal and financial professionals families with FTD can consult: an elder law attorney, an employment law attorney, an ERISA attorney (for retirement and health benefit plans), a disability attorney and a financial planner. It points families to the National Academy of Elder Law Attorneys or a local bar association to find one, and stresses that the attorney should practice in your state, because the laws differ.

Two more roles appear on many FTD teams. The Aging Life Care Association describes an Aging Life Care professional (also called a geriatric care manager) as a health and human services specialist who directs the care of older adults and others with ongoing health challenges, connects families to entitlements and community resources, and sometimes mediates family conflict. The diagnosing neurologist matters as well: the NIA notes that FTD can be hard to diagnose, and every later plan rests on the label being right.

The gaps between the helpers are where FTD savings leak

Every professional on the team can be excellent and the family can still lose money, because the rules that matter in FTD sit in different lanes and land on one household account. The complexity is not an accident, and no single provider created it: law sits in one office, benefits in another, insurance in a third, and the disease moves across all of them on its own schedule. Each office can do its part correctly and still leave the family holding the question none of them is asked to answer: what happens to this household’s money in the order this disease unfolds.

Here is what that looks like in AFTD’s own guide. Many people diagnosed with FTD lose employer health insurance while they are still too young for Medicare. COBRA usually continues group coverage for up to 18 months, and in some disability cases up to 29 months according to CMS, at the person’s own premium plus a fee. Social Security Disability Insurance brings automatic Medicare enrollment only after 24 months, and Medicare, once it arrives, does not cover long-term residential or custodial care. Long-term care insurance has to be in place before health issues occur, so the family plans around whatever policy already exists, or none.

The documents carry the same split. In the Galvin study, initiating a power of attorney was the leading reason families paid attorney fees, named by 25.9 percent of respondents, and legal guardianship was the leading reason for court appearances. AFTD describes guardianship as an extreme step, often contentious and expensive, to consider only after other options have been explored. Jessica has a phrase for what an FTD diagnosis sets in motion, which she uses in her guide to a diagnosis that does not match: a wealth-transfer event dressed as a health event, and an expensive guardianship filed after the signing window closes is one of the ways that transfer happens.

Where a dementia caregiving strategist fits beside the attorney and the planner

Jessica works in the gap between those roles: a family can have a lawyer, a doctor and a facility, and still nobody reading the diagnosis, the money and the legal window together. Her About page puts what she found after her mother’s illness plainly: “no one was connecting the dots for families while they still had time.” She helps the family turn those pieces into one plan they can carry out. She is a CPA with 28 years of financial experience and a Certified Dementia Practitioner, and the author of The Proactive Caregiver.

FTD is personal ground for Jessica. She spent more than 15 years caring for her own mother through frontotemporal dementia and the misdiagnoses before it, so she knows from the inside what it costs a family to plan for the wrong disease. That history runs through the Proactive Caregiver Method she teaches: its Dementia Care Navigation pillar opens under a heading that carries her whole argument, Dementia Is Not Alzheimer’s, and its Financial Wellness pillar holds the CPA’s side of the same plan. Her published view, set out in her World Alzheimer’s Day release, is that after a diagnosis a family often has about a year to get the powers of attorney, advance directives and banking forms signed while legal capacity lasts.

She works alongside the licensed professionals and does not replace them: the attorney drafts and advises on the legal instruments, and the physician owns the diagnosis. She works with families nationwide through virtual coaching, with in-person roots in Austin and Central Texas, and her coaching runs monthly by video, so the plan can change as the disease and the money do. Her Guided Growth tier includes a personalized caregiving plan updated quarterly, and her services page sets out each way of working together.

What families gather before the first conversations

First meetings go further when the facts are already on one page. The NIA suggests that a family member or legal representative review bank statements and financial records each month, set up automated bill payments, and register for fraud alerts with the bank or a credit bureau. Having these ready lets each professional start on their own part rather than the inventory:

• The diagnosis history: every label your mom has been given, with the date and who gave it
• Every bank, retirement and brokerage account and every credit card, with who can see each one
• Any existing powers of attorney, advance directives and wills, with the date each was signed
• The monthly bills, and how fast the savings are actually going down
• Employer benefits, health insurance, and any disability or long-term care policy already in force
• What care costs now, and what has changed over the last few months

Deciding which piece comes first

For the order of the steps after diagnosis, the financial planning checklist for a new frontotemporal dementia diagnosis puts the signing window first and walks through the inventory. Whether your mom can still sign is covered in whether a parent with dementia can still sign legal documents, the fees in what an elder law attorney costs.

If you cannot tell which piece is most urgent, that is the decision Jessica Cannon’s discovery call is built for. It is a short video call in which you describe the diagnosis, the accounts and the savings, and, as her services page puts it, she tells you “which pillar your biggest vulnerability sits in, and which way of working together fits,” including whether ongoing monthly coaching does. If what you need first is an elder law attorney or another specialist, her services page says she will point you there.

Frequently Asked Questions

Q: Can a power of attorney stop my mom from spending her own savings?

A: Not while she still has legal capacity. The Alzheimer’s Association explains that a person with dementia keeps the right to make their own decisions as long as they have legal capacity, and that the agent named in a power of attorney cannot overrule those decisions until capacity is lost. The NIA describes protections families use alongside the documents: monthly statement reviews, automated bill payments and fraud alerts. What the documents authorize in your state is a question for an elder law attorney.

Q: Who do families usually talk to first after an FTD diagnosis?

A: Many start with an elder law attorney, because AFTD’s planning guide notes that powers of attorney are enforceable only if signed while the person is legally competent, and it urges families to see an attorney as soon as possible after diagnosis so the person with FTD can take part. AFTD also runs a HelpLine at 1-866-507-7222 for FTD-specific questions.

Q: Is a financial planner enough to plan the money side of FTD?

A: A financial planner is one of the five professionals AFTD lists, and its guide pairs an attorney and a financial planner on benefit applications and appeals. What a general planner may not be set up to model is the disease timeline itself: judgment changing before memory, coverage gaps before Medicare, and a signing window that narrows while the person still seems like themselves. Jessica Lizel Cannon, a CPA with 28 years of financial experience and a Certified Dementia Practitioner, works in that overlap.

Q: Can long-term care insurance still help after an FTD diagnosis?

A: A new policy cannot. AFTD’s guide states that long-term care insurance has to be in place before health issues occur and cannot be purchased after an FTD diagnosis. A policy bought earlier can still matter, so it belongs on the gather list. Medicare does not cover long-term residential or custodial care, AFTD notes, while Medicaid, whose rules vary by state, includes programs that do.

Citations

• Association for Frontotemporal Degeneration, Planning for Legal, Financial, and Health Insurance Issues (2025). Lists the attorneys and financial planner families with FTD can consult, and confirms that powers of attorney hold only if signed while competent, that long-term care insurance cannot be bought after an FTD diagnosis, and the COBRA and Medicare timing. https://www.theaftd.org/wp-content/uploads/2025/09/Planning-for-Legal-Financial-and-Health-Insurance-Issues-Life-After-an-FTD-Diagnosis.pdf
• Galvin et al., The social and economic burden of frontotemporal degeneration, Neurology (2017). The survey of 674 FTD caregivers: estimated annual costs in 2016 dollars, poor financial decisions reported by 58 percent, power of attorney as the leading reason for attorney fees, and guardianship as the leading reason for court appearances. https://pmc.ncbi.nlm.nih.gov/articles/PMC5711509/
• Association for Frontotemporal Degeneration, Talking Points: FTD Economic Burden Study (2017). AFTD’s summary of the study it funded and co-authored: costs roughly double Alzheimer’s and household income falling by as much as 50 percent. https://www.theaftd.org/wp-content/uploads/2017/10/EconomicBurdenStudytalkingpoints.pdf
• National Institute on Aging, Frontotemporal Disorders: Causes, Symptoms, and Diagnosis. Roughly 60 percent of people with FTD are 45 to 64; a first symptom can be trouble managing finances; FTD is sometimes misdiagnosed as Alzheimer’s or a mood disorder. https://www.nia.nih.gov/health/frontotemporal-disorders/what-are-frontotemporal-disorders-causes-symptoms-and-treatment
• National Institute on Aging, Managing Money Problems for People With Dementia. Monthly statement review, automated bill payments and fraud alerts as practical financial protections. https://www.nia.nih.gov/health/legal-and-financial-planning/managing-money-problems-people-dementia
• Alzheimer’s Association, Legal Documents. A person with dementia keeps decision-making rights while they have legal capacity, and a power of attorney does not let the agent overrule them until then. https://www.alz.org/help-support/caregiving/financial-legal-planning/legal-documents
• Centers for Medicare & Medicaid Services, COBRA Continuation Coverage. COBRA coverage lasts a maximum of 18 months in most cases, up to 29 months with the disability extension, at up to 102 percent of the plan cost. https://www.cms.gov/cciio/programs-and-initiatives/other-insurance-protections/cobra_fact_sheet
• Aging Life Care Association, A Closer Look at the Aging Life Care Professional. Describes the role: directing care, connecting families to entitlements and community resources, and in some cases mediating family conflict. https://blog.aginglifecare.org/blog/a-closer-look-at-the-aging-life-care-professional/

Related reading

• What Happens to the Money When FTD Hits a Working Family?
• Told It’s Alzheimer’s but Nothing Matches? Your First 30 Days
• What Is Anosognosia, and How Does It Change Family Decisions?
• Guardianship vs Power of Attorney for a Parent With Dementia
• How Families Pay for Long-Term Dementia Care: A Complete Guide
• How reactive caregiving can cost families up to $750K, and what proactive planning saves
• Dementia Care Navigation
• The Proactive Caregiver Method

About this article. Jessica Cannon is a CPA with 28 years of financial experience and a Certified Dementia Practitioner. She provides financial coaching, not legal or medical services. This article is general information about how these systems work, not advice about your situation, and it is not a substitute for the advice of an attorney. It is not medical advice, and it is not individualized tax or financial advice.

For the legal instruments themselves, including wills, powers of attorney and guardianship, you will need a licensed attorney in your own state. Medicaid and long-term care rules also differ by state and change over time, so any Texas detail here is an example rather than a rule that will apply to you.