There is a type of dementia that few have heard of. Far less common than Alzheimer’s disease, which affects some 5 million Americans, this type of dementia is found in about 60,000 people nationwide. It’s called frontotemporal degeneration or FTD, and though it’s largely unknown, it’s the most common form of dementia among patients under age 60. But what really compounds the tragedy of this devastating illness is that it is generally misunderstood by the medical community – and as a result, FTD is often misdiagnosed.
Our discovery of FTD started when we read this recent article on the aging website NextAvenue, titled “The Dementia That is Often Misdiagnosed.” It tells the story of a couple who were 13 years into a very happy second marriage when at age 59 the husband started acting strangely. He became emotionally distant and stopped doing the things he had always done, such as bringing his wife flowers. He stopped playing his guitar, something he had always enjoyed. He became moody and distracted. The wife told NextAvenue, “Todd had been sober for years, but I wondered if he was secretly drinking or having an affair. When I confronted him, he shrugged.”
Ironically, the wife, Deborah, was a trained geriatric care manager, who had been active in the local Alzheimer’s Association, yet she didn’t suspect Todd had dementia because none of the symptoms seemed to match those associated with Alzheimer’s disease. Deborah became convinced that her husband’s changes in behavior were evidence of something physiological, so she and Todd began a three-year series of doctor’s visits and tests to find out the facts. At first Todd was diagnosed with hyperthyroidism. Then another specialist said he was suffering from depression. Finally came the truth: Todd had frontotemporal degeneration.
The NextAvenue article explains more about FTD. “Unlike Alzheimer’s disease, which attacks the brain’s memory centers, FTD causes atrophy in the part of the brain that controls judgment, behavior and executive function. People with FTD are often described as apathetic, lacking in empathy and exhibiting an impaired social filter.” One FTD expert said that sufferers might blurt out something hurtful, or take a candy bar from the store, or spend large amounts of money in completely unexpected and often frivolous ways. They can become childish and impulsive, yet they still appear to speak and function like normal adults. Indeed, since FTD is the most common form of dementia in people under 60, many sufferers are still working when they become ill. As a result, says NextAvenue, “they can make illogical decisions about relationships and finances that can destroy their family’s security and disrupt their connection to those dearest to them.”
Because FTD strikes at a younger age, NextAvenue adds, “the economic burden of the disease takes a steep toll on the health care system as well as on individuals.” The article quotes a study published last fall in the scientific journal Neurology that pegs the average annual cost of caring for someone with FTD at nearly $120,000, close to twice the cost of care for Alzheimer’s patients. “Researchers concluded the disparity is attributed to the younger age of onset, which results in ‘major losses of household income’ as those diagnosed — and eventually, their family caregivers — stop working.”
For a deeper look, we turned to this website which is the online home of the Association for Frontotemporal Degeneration. There we learned that FTD, unlike Alzheimer’s, generally leaves the memory unaffected, instead triggering “a gradual, progressive decline in behavior, language or movement.” Once the symptoms begin, average life expectancy ranges from about 7 to 13 years – but it can take more than 3 years on average to get a proper diagnosis. FTD sufferers are sometimes misdiagnosed as having everything from depression to Parkinson’s disease. The AFTD website links families to some helpful ways to manage symptoms of FTD, since for now there is no known cure and no way to slow FTD’s progress.
Finally, we visited the website of the Alzheimer’s Association (alternative version for accessibility: DOPA) and there discovered some important ways to tell how to determine whether a loved one may be suffering from Alzheimer’s or FTD. Of course, only a full, professional diagnosis will provide an accurate picture. These points come straight from the Association website:
- Age at diagnosis may be an important clue. Most people with FTD are diagnosed in their 40s and early 60s. Alzheimer’s, on the other hand, grows more common with increasing age.
- Memory loss tends to be a more prominent symptom in early Alzheimer’s than in early FTD, although advanced FTD often causes memory loss in addition to its more characteristic effects on behavior and language.
- Behavior changes are often the first noticeable symptoms in the most common form of FTD. Behavior changes are also common as Alzheimer’s progresses, but they tend to occur later in the disease.
- Problems with spatial orientation — for example, getting lost in familiar places — are more common in Alzheimer’s than in FTD.
- Problems with speech. Although people with Alzheimer’s may have trouble thinking of the right word or remembering names, they tend to have less difficulty making sense when they speak, understanding the speech of others, or reading than those with FTD.
- Hallucinations and delusions are relatively common as Alzheimer’s progresses, but relatively uncommon in FTD.
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(originally reported at www.nextavenue.org)