Tuesday, October 27, 2015

""Dementia Is Draining Families' Bank Accounts"

This is the title of an article on the front page of the New York Times today.  The article's intent is to show the significant impact on the income and assets of those families who have someone with dementia to care for.  It makes the point that the cost is more significant by far than the costs of cancer and heart disease.  Dementia can be nominally higher but that is exacerbated by the fact that the care needed for dementia is not covered, for the most part, by private insurance or by medicare, while many aspects of cancer and heart disease are.

If anything, the article understates the challenge.  It does give specific examples of various families' experiences, but the numbers don't completely add up.  The article's writer suggests that the national norm for home health care aides is $20 an hour and she also makes the point that dementia can be a 24 hour process, with needs extending through the day and night.  There are different varieties of dementia and different individual experiences, but just doing the math on the most demanding care need, 24 hours a day times $20, if that is the right number, and the cost can be much much higher than anything mentioned in the article.  Home care costs needed from caretakers can have many variations of course, as some dementia patients may sleep soundly for 12 hours a night and be docile in front of the television during their waking time, while others may need to get up almost every hour at night, and have many anxiety based questions during the day.  It must be assumed that many of those afflicted need reassurance and interaction, conversation and outings.

There are other non-monetary costs that are obvious, and the most common is the health of the family members who act as home caregivers.  With an active dementia case, it can eventually become clear that a caregiver agency or dedicated independent caretakers is not an option.  They are necessary. There is always, for some, the option of placing the dementia patient in a nursing home or special dementia facility but, while less expensive than home care, it obviously involves removing the patient from the place that they are most familiar with, not a positive thing one could guess.

The impact of this on middle class families and their financial situation can be devastating.  The impact on the poor is significantly mitigated by Medicaid if they can find a facility to take in their loved one(it should be noted that an unknown but significant portion of the facilities who cater to the poor do not provide anything close to adequate care but charge full freight to Medicaid, that's called fraud).  For those with resources, it could require going back to the drawing board on long term financial plans to take into account various outcomes.

This is a subject that will only affect more and more families, and there are no easy answers as to how to prepare for this.  Long term care insurance is the one promoted option, but when push comes to shove, the payments can end up being paltry compared to the cost if a family chooses home care. Long term care insurance can be designed to offset approximately 70 to 80%, on average, of the costs of a patient being in a specialized nursing residential facility, aka nursing home.

Why was this not such a big deal in the not so distant past.  Maybe it was, but there was no ubiquitous diagnosis like Alzheimer's or other forms of dementia.  It was just "Dad's getting cranky and tired" or "Mom's getting forgetful and depressed".  Families were less disbursed and communities were more long term local, so familiar and well-intentioned care was more available.  Still, the question could be and is asked, "is the dementia phenomenon actually on a significant multi-year rise for some undiscovered reason?  What is that reason?

For those already in its clutches, it is too late.  For their children or grandchildren, there is crucial research that needs to be done.


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