Photo: Ruth and Michael French, NY Times video
Thirty years ago, Ruth married Michael French, a smart, good-natured, hardworking man. Michael was an engineer, lectured at conventions, did volunteer work, belonged to a history book club, and ran marathons. Things seemed great and the couple enjoyed spending time together in their New York City apartment. This was until his personality did a complete 180 and he became a “different person.”
A once cautious and intelligent man, Michael began doing out-of-character things, including throwing away important tax documents, getting a ticket for trying to pass an ambulance, and buying stock in companies that were obviously in trouble. Once a good cook, he burned every pot in the house. He quickly became withdrawn and silent, and no longer spoke to his wife over dinner. That same failure to communicate got him fired from his job at a consulting firm.
By 2006, Michael had become someone his wife, Ruth, felt she hardly knew. Ruth seriously considered divorce, until she found out what was really going on. Michael had what is known as frontotemporal dementia (FTD) (also known as frontotemporal degeneration or Pick’s disease) — a little-known, poorly understood, and frequently misdiagnosed group of brain diseases that eat away at personality and language.
When Ruth heard about the diagnosis, she vowed to stick by her husband, despite his personality changes. Looking back, she recalled episodes of odd behavior over the years and realized that her husband’s mind had probably begun to slip while he was in his 50s, at least a decade before the disease was diagnosed.
What we know about FTD
FTD is very different from Alzheimer’s, the most common form of dementia, and perhaps even more devastating. Here’s what we know about fronto-temporal dementia:
- FTD is a group of diseases that destroy nerve centers in the frontal and temporal lobes — the home of decision-making, emotion, judgment, behavior, and language. Some forms of the frontotemporal dementia also cause movement disorders, leading to disorders that resemble Parkinson’s or Lou Gehrig’s disease.
- It strikes younger people, progresses faster and, unlike Alzheimer’s, does not attack memory at first but begins with silence, apathy, or bizarre personality changes.
- Around 60 percent of people who develop frontotemporal dementia are between the ages of 45 and 64.
- This type of dementia is uncommon, affecting less than 5% of all people who develop dementia.
- It is thought to afflict at least 50,000 to 60,000 people in the United States.
- Most cases occur sporadically, in people with no family history of the illness, but a small percentage may be hereditary.
- Patients generally receive from one to four misdiagnoses, and it may take years to finally get the right diagnosis. Mistaken diagnoses can include Alzheimer’s disease, stroke, midlife crisis, or psychiatric illnesses such as depression, bipolar disorder, post-traumatic stress, or anxiety. Many relatives of patients say doctors often dismiss their reports of personality changes initially, which is in part what causes such frequent misdiagnoses.
- Patients may have compulsions. For instance, they may wash their hands over and over again, but not in a worried or anxious way. Some lose their inhibitions and moral judgment. Shoplifting is not uncommon. Many have the apathy and social disconnection that usually go with depression, but they do not feel depressed.
- Although it was first recognized more than 100 years ago, there is still no cure or treatment for FTD.
- Patients can live 10 years or more after the diagnosis.
Possible Breakthroughs in FTD Research
Although there are no treatments and no cure to date, researchers have been making important discoveries about the biochemical and genetic defects that cause some forms of FTD. Recently, for the first time, they have identified drugs that may be able to treat one of those defects — the buildup of abnormal proteins in the brain. Tests are currently being conducted at the University of California, San Francisco. For now, patients symptoms are treated (including therapy for loss of motor skills and meds for depression), rather than treating the disease itself.
Caring for a Loved One with FTD
In the example above, Michael French ended up in a wheelchair, and took a bad fall down a flight of steps in his NYC apartment building. His wife cared for him at home as long as she could, and then visited him often at the nursing home. Mr. French died a few years later.
As you can imagine, persons with frontotemporal dementia and their families face special legal and financial needs. Controlling the high costs of caring for a loved one with frontotemporal dementia, and navigating the emotionally and physically demanding requirements of caregiving, require the assistance of a highly skilled and specialized expert in the field of frontotemporal dementia planning.
Here at The Farr Law Firm, we are dedicated to easing the financial and emotional burden on those suffering from frontotemporal dementia and their loved ones. We help protect the family’s hard-earned assets while maintaining your loved one’s comfort, dignity, and quality of life by ensuring eligibility for critical government benefits such as Medicaid and Veterans Aid and Attendance. If you have a loved one who you believe is suffering from FTD or any other type of dementia, please call us as soon as possible to make an appointment for a consultation:
Fairfax Medicaid Planning: 703-691-1888
Fredericksburg Medicaid Planning: 540-479-1435
Rockville Medicaid Planning: 301-519-8041
DC Medicaid Planning: 202-587-2797
About Evan H Farr, CELA, CAP
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