FTD (not the flower company)

About 18 months ago I shared the news that my family was moving to another house so that my mother in law could move in with us.

This move took place about 16 months ago, my mother-in-law’s house sold about a year ago and she moved into our new house last Summer. Her physical and cognitive decline since that time has been pronounced, and she was hospitalized 3 times in 40 days from Thanksgiving to Christmas; the last hospitalization occurring when she wandered from our house during the night for the third time that last 10 days she was with us. She fell in a ditch by a road near where we live, was found by a runner just before dawn, and was “Jane Doe” for around 4 hours in the ER before we realized that she was gone.

From the hospital she went to rehab in a Skilled Nursing Facility (SNF) for around 30 days, and moved into an Assisted Living Facility in Chapel Hill in early February. I came to understand the concept of ‘sandwich generation’ one day in January as I visited Assisted Living facilities while trying to help my daughter decide whether to apply to any more Universities just before the January 15 deadline; the juxtaposition of helping to plan and experience these two trajectories has been poignant and jarring.

It is difficult to say when our role as ‘caregivers’ for my mother in law really began. I have picked her Part D and Medicare Advantage plans for a while, and helped with financial decisions for many years. We had multiple middle of the night drives to her house across town to help her off the floor during 2011 that precipitated her moving in with us, and an increasing need for basic care that increased when she lived with us. I am unclear if she was simply in need of more care than we knew before she moved in with us, or if her decline has simply been that precipitous.

This past week, she received a formal diagnosis of frontotemporal degeneration (FTD), behavioral variant which is a form of non-Alzheimer’s dementia, that is fairly rare (~30,000 persons in USA with one of the variants of this disorder, which used to be more generally called Pick’s disease). Many persons who arrive at this diagnosis are misdiagnosed as having persistent mental illness, as many of the behaviors are similar to that observed in a person with bipolar disorder or a borderline personality disorder. Behavioral disturbances come first with FTD, then language and gait changes (and falls) onset before memory impairment is severe and full care needed, leading to this misdiagnosis which was the case in our experience.

If you want to wander around the ugly, fragmented side of the health system, you could pick mental health or long term care. Bouncing between the two has been quiet agony for all those involved.

Medicare pays for very little long term care (it did pay for the rehabilitation stay following the fall; 100% for 30 days, then with a $158/day deductible for the next few days, ending at 100 days). Home health is available, but has increasingly become medicalized over time though some of the eligibility rules have been lessened. Of course, Medicare paid for all 3 hospitalizations for my mother-in-law, all of which were really signals of a break down in the long term care system (her living with us) that we had put into place. It was a social worker changing the question from ‘can you keep doing this?’ to ‘you cannot keep doing this’ that was the trigger for the move to Assisted Living.

My mother in law is now living in an Assisted Living facility that has shown great care and flexibility in trying to adapt to the realities of a resident with this dementia variant. The cost is around $75,000/year and dementia care at the sister facility to which she will likely move sooner rather than later costs around $90,000/year, none of which is paid for by Medicare. The family is responsible for all of this cost, and in our case we are blessed that the resources to provide for this care were arranged for by my deceased father in law. Most families cannot arrange for such care and would have many fewer options than we have had (it is hard enough with resources). Of course, Medicaid sits as an ultimate backstop and once an individual’s assets have been eradicated, care in a Nursing Home (not the type of place where she now lives) is paid for until death.

I still note in many circles people noting the demise of the CLASS provisions of the ACA as a joke or a political scalp of sorts. This really pisses me off. I guarantee anyone viewing it that way hasn’t navigated long term care for a loved one. We as country desperately need to wrestle with the questions of the best way to insure Long Term Care.

Some version of this story comes for many of you, too.


About Don Taylor
Professor of Public Policy (with appointments in Business, Nursing, Community and Family Medicine, and the Duke Clinical Research Institute), and Chair of the Academic Council at Duke University https://academiccouncil.duke.edu/ . I am one of the founding faculty of the Margolis Center for Health Policy. My research focuses on improving care for persons who are dying, and I am co-PI of a CMMI award in Community Based Palliative Care. I teach both undergrads and grad students at Duke. On twitter @donaldhtaylorjr

One Response to FTD (not the flower company)

  1. Pingback: The counterfactual in long term care | freeforall

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