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Frontotemporal Dementia Caregiving Costs More than AD Caregiving

Persons receiving a diagnosis of frontotemporal dementia (FTD) tend to be younger than persons receiving an Alzheimer’s Disease diagnosis. FTD is the most common dementia experience by people under the age of 60. FTD removes people from the workforce at a time when they may be at the height of their careers and their earning power. Additionally, the caregiver spouse also suffers financially when he or she has to reduce his or her hours, turn down a promotion because of caregiving responsibilities, or hire paid caregivers.

Dr. James Galvin and colleagues just published a paper examining the costs of caregiving for people impacted by FTD and comparing their numbers to caregivers of persons with AD. Dr. Galvin and colleagues surveyed 674 caregivers of persons with behavioral-variant FTD, primary progressive aphasia, FTD with motor neuron disease, corticobasal syndrome, or progressive supranuclear palsy. The majority of the caregivers cared for a spouse with bvFTD. Of all the diseases on the FTD spectrum, bvFTD was the costliest.

Families experienced a loss in income anywhere from $15K to $50K annually. The loss in income was due to the person with FTD leaving the workforce, the caregiver reducing work hours or leaving the workforce, or a combination of both. In addition to the lost income, the direct cost of caring for a person with FTD averaged $48K annually.  These direct costs included medical care, residential care, respite care, medical equipment/supplies,  and paid home care from formal caregivers. Indirect costs, which included the unpaid care provided by family members and lost wages, averaged $72K yearlyOther costs that were NOT included in these numbers included fallout from poor decisions by persons with bvFTD, such as bankruptcy filings, guardianship hearings, will revisions, court appearances for criminal or civil matters, and associated attorney fees for all of the above. 

The combined indirect and direct care costs associated with FTD averaged $120K annually, compared to the average annual indirect and direct care costs of caregiving for AD, $64K. The exception to this is early onset AD, which comprises 5% of AD cases and affects people under age 65. Early-onset AD most likely follows the same cost-pattern of FTD; however,  the experiences of these family caregivers gets swallowed up by the other 95% of AD caregivers.

If there are children involved, the economic (and social) ramifications become even more complicated. It may be impossible to save for college when sizable chunks of income are being siphoned off for care. Adolescent and teen-aged children are often recruited to help with care-giving.  While not necessarily an automatic bad thing, adolescent and teen-aged caregivers probably require additional education and support…items that are in short supply for adult caregivers.

While not addressed explicitly in the article, I know first-hand that the working spouse becomes caught in a “between a rock and a hard place” scenario when the FTD progresses and the individual can no longer be safely left alone. The caregiver may not be able to quit work, especially if health benefits are tied to his or her employment. The only options include adult day care (and many adult day cares are not sympathetic to or equipped to manage the behaviors exhibited by persons with bvFTD) or paid caregivers. Difficult decisions have to be made, like how to cobble together a network of paid and informal caregivers to provide the needed supervision (and not get fired in the process!). Even after the person with FTD dies, the economic consequences persist for the spousal caregiver:  debt, lower retirement income (if the caregiver works less and makes less money, then less money is put away for retirement), and inability to retire (especially if 401k’s and other retirement funds were used for caregiving costs).

Bottom line: dementias that occur earlier in life have greater financial impact on family caregivers than those dementias that occur in later life. I would like to see more employers recognize the devastation wreaked by these dementias and to be more supportive of employees who are family caregivers. FMLA is great, but it is a baby step. Flexible work schedules and pre-tax health savings accounts for caregiving expenses are two ideas that would make life better for family caregivers.

Categories: Alzheimer's Disease Caregiving costs FTD

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Dr. Rita Jablonski

Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.

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