Financial Impact of FTD

I received some very interesting information today from The Association for Frontotemporal Degeneration. They co-funded and co-authored a study on the financial and social impact of FTD. The entire study will be published in Neurology magazine's Nov. 14 issue.

The first thing that caught my interest is the revelation that families dealing with FTD face an economic burden of around $120,000, roughly half that of families dealing with Alzheimer's Disease. This brings the obvious question: Why?

Unfortunately, most doctors are still unfamiliar with FTD. It is often misdiagnosed as Bipolar Disease, depression or another mental illness. They also discovered that it takes, on average, nearly four years to get a correct diagnosis. That means fours years of bouncing around to different doctors, trying to find an answer. It can also mean the expense of multiple medical testing that may be unnecessary, incorrect medications and doctor visits.

FTD most often strikes before the age of 60. Because of the younger age, it is very likely that, prior to diagnosis, both the one with FTD and their spouse were still working and contributing to the household income. FTD compromises the employment of many with the disease. Many are discharged from their employment or come to the realization, on their own, that they can not continue to do their job. Unless they are fortunate enough to have the best of short and long term disability insurance and are eligible for early retirement benefits, the household income is reduced drastically. Trying to survive only on Social Security Disability Insurance is nearly impossible.

The usual caregiver for someone with FTD is the spouse, who  is most likely also still employed at the time of diagnosis. In many instances, the spouse must also give up their job in order to provide care for their loved one. If not, there are many expenses incurred for other methods of providing care.

In the study, a year prior to diagnosis, overall household income ranged from $75-95,000. A year after diagnosis, that income had declined nearly half. If the care-giving spouse is still employed, the study found that 37% of caregivers reported not being able to continue working, If they were still working, they reported a median loss of seven full work days over the past four weeks because of issues involving FTD. Two thirds of caregivers also reported declines in their own health. The stress of being a caregiver is enormous.

The financial burden is not just from reduced household income for both the one with FTD and the caregiver, but also from drastically increased medical expenses. Even with the best medical insurance, co-pays and non-covered services can quickly add up to significant amounts.

In many cases, the person with FTD has made poor financial decisions that can also add to the financial burden. If placement into a care facility, such as a nursing home, becomes necessary, financial resources are quickly consumed.

If I may, I will step beyond the study of the financial impact of FTD. Most everyone has dreams of retirement and have many things they are looking forward to once they do. You may call it a "bucket list" or just plans to finally kick back and relax. Perhaps the plans are to travel, perhaps to buy a fishing boat or spend more time on the golf course. FTD steals those plans from the one with FTD, the primary caregiver and perhaps extended family. Plans to spend and enjoy time with the grandchildren become very difficult if not impossible.

With FTD, the memory is usually spared until the end stages and they are fully aware of what is happening. They know what they are missing out on and that their plans for retirement activities may now be impossible. The caregiver, in addition to this being a full time job, 24/7, they usually are forced to give up their own dreams of life in retirement.

All this information explains one way that FTD can force everyone involved into a period of grief, way before the life actually ends. This is another issue that I will write about another time. We don't need another depressing topic on top of the financial burden.